Protesters So Ill, They Couldn’t Get Arrested

Oct 27, 2022 · 213 comments
IJM (England)
Great article. I do think we should take the possibility that CFS is a psychosomatic illness seriously, though. And I realise it causes (horrendous) physical symptoms. That's part of what psychosomatic means.
You could literally say the same about EVERY illness. How do you prove that a physical symptom is not psychological?
IJM (England)
@SJ Well, many illnesses are otherwise explained. After a lot of research, CFS still isn't.
MD in NYC (a hospital near you)
Not true that the physical causes and hallmarks are unexplained; they are not *fully* explained - there has been almost no research until long Covid came along - but quite a bit is known that clearly demonstrates a physiologic etiology. We know that autoimmunity plays a role, with a hallmark of damaged and missing small nerve fibers visible on biopsy, which has implications for much of the functioning of the autonomic nervous system. We know that mitochondria (the cells’ energy centers) do not work properly in ME/CFS, and that cells move into anaerobic metabolism far sooner than they should. There also appear to be abnormalities in the ways red blood cells carry and distribute oxygen. There is a LOT more that must be discovered - most importantly, how to effectively treat it - but how much can you expect with hardly any research funding??
DResnick (Takoma Park MD)
Yes, they have a horrible disease, and they deserve sympathy, but what are they protesting?
JND (Abilene, Texas)
So would you be happier if they got arrested?
Steve (New York)
Chronic fatigue syndrome is a disorder that no one knows the etiology of and it may not be the same in all sufferers. Calling it myalgic encephalomyelitis implies a known etiology and pathology. Encephalomyelitis means an inflammation of the brain and no one has yet shown CFS sufferers experience this. As a physician myself, I consider it a fraud perpetuated upon sufferers to indicate we know far more about CFS than we actually do. For all the value the ME designation adds, you might as well call it CFS/ham sandwich.
Brian K. Hollander (Santa Barbara, California)
There is treatment for this condition, but patients refuse to accept that it is a mental health condition, therefore they refuse to take advantage of that treatment. There has been a ton of research into this condition and no biological cause has been found. Patients should not be blamed for this condition, however, a dose of reality, letting them know that it is a mental health condition and that there is no shame in that, or in treating that, would go a long way towards their recovery.
@Brian K. Hollander As someone with a degree in counseling psychology and dealing with what could be diagnosed as CFS, I am not sure how you feel you are able to diagnose me (us) from a distance. Oh, and I am working with a psychologist already because I know that my mental health can be an impediment to healing. BUT I also know that good mental health is not going to cure me and allow me to go back to running.
GenX (NYC)
Not a mental health condition as prime cause. As clinicians who specialize know. As advocates understand. And as my family member, a full time working sufferer of moderate CFS for more than 20 years before he became fully disabled, can demonstrate. The biological pathways haven’t been described yet, but so many odd markers are there, from measurable PEM, to dysautonomia and strange heart rate issues, to low right atrial filling (“pre-load failure” see David Systrom et all) to many, sometimes manageable, sleep, immune, and allergy issues. Is it an immune system issue caused by viral ability to down- regulate cellular energy and impede immune response? Or to confound the usual neurological signal chain that helps our bodies find energy when we usually need it? (For exertion, for thinking…) Or another response to viral assault? Why do so many sufferers-like MS sufferers - have a history with EBV? These questions have not been answered. Bless the few that are researching them. Bless the clinicians. Bless the advocates and journalists like Ms. Tufecki.
mbl14 (NJ)
@GenX I wouldn't' be surprised if they discover an environmental cause. We are literally bombarded by poisons 24/7. I also wouldn't be surprised if it's found to be exacerbated by psychological factors.
Aaron Friedman (Pacifica, CA)
There is likely no cure. The most reasonable explanation, is that it's a psychosomatic response.
Lucinda Delphine (Gainesville, FL)
@Aaron Friedman: "If there's any question we don't have the answer to right now, there likely is no answer. The most reasonable explanation is that there is no explanation—except possibly a purely speculative invention of my own imagination that conveniently blames people with disabling chronic illness for their own suffering and lets me and the rest of society off the hook completely." Did I hear you correctly?
Whatshername (PDX)
Your logic is flawed. We don’t know there is no treatment, but we do know there is little effort going into finding one. Medicine doesn’t have complete knowledge or a full array of treatments, so this does not make the cause psychosomatic. As for the assumed psychological component, here’s a thought experiment for you: Suddenly take on all the symptoms you read about here with the major life impacts. You are given no explanation. Others doubt you. Now, do you know anyone who wouldn’t need psychological help?
Tom J (Berwyn, IL)
I see this as part of a greater need to have national, guaranteed healthcare no matter what the affliction. These people would be covered, we all would. But until a majority of Americans vote for the only party who wants that, it will not change.
@Tom J I have amazing healthcare and there is no way national healthcare would make any difference. This is about how doctors approach their understanding of patients. My experience is that they look at the lab ranges and as long as your results fall within range they tell you you are fine and move to the next patient. We are all different. We all have different levels that are best for us. Doctors need to be better at looking that the full picture. Within range low iron paired with thyroid issues can appear as CFS. Lowish cortisol with lowish iron can appear as CFS. An imbalance in estrogen and progesterone can also produce symptoms that may appear similar to CFS. All of these labs could be within range, but it is the combo that doctors miss. Without looking at the whole story, doctors are doing a disservice to patients. I highly doubt nationalized healthcare will reverse that trend.
Bob (Litchfield)
@Tom J Insocialized medicine countries, Guillain -Barre syndrome (see my post about my wife) is NOT COVERED. Why? Because not enough of the population contract it. When an American in France was diagnosed with it, he was advised to return to the US - even if he had to be carried onto a plane - because NO TREATMENT was available there.
GAonMyMind (Georgia)
@Tom J Thank you. Our capitalist heathcare system is about making money and generating revenue, they provide healthcare on the side. Currently it's taking over six months to get an appointment with most primary care doctors in my area, specialists are taking even longer. Several MDs have wait lists becasue they are not taking new patients. When you do get in to see a doctor they can spend very little time with you and most of us feel rushed. Profits first, patients second.
Jake (New York NY)
Oh what a shame. They were unable to inconvenience motorists. Are we at the point where anyone and everyone with a gripe feels that they have the right to disrupt? And, whether or not a psychiatric disorder is the cause of this illness or a result of it therapy and possibly medication are probably the best treatment. But many patients feel stigmatized when offered that advice.
mbl14 (NJ)
@Jake Medication has little to no effect on this disease. I won't say it's not psychological, because I think many illnesses have more of a psychological component than the medical community is willing to admit, but the fact is no drug fully helps these people. And many are so severely disabled by the illness they can't even move or speak to anyone. If it feels real to them, then it is real to them.
Elaine Foxgord (Chilliwack, B.C., Canada)
@Jake: Maybe you need to spend some time with people who have this disease, especially those who have been ignored for years by doctors, and have been prescribed “graded exercise therapy” and CBT, only to experience worse outcomes. ME/CFS affects many body systems, including the brain, causing short-term memory loss, and “brain fog,” but that does not mean these patients need psychiatric meds, or therapy. Perhaps because this malady is more prevalent in females, men like you feel perfectly justified in dismissing them as a bunch of hysterical women!
Whatshername (PDX)
Gee you could use an empathy transplant. ME/CFS is a real thing, and sadly, there is no medical therapy or medication to heal it. What’s worse, sufferers have to deal with doctors who want to treat you like it’s your fault you couldn’t show up with something they had a pill for. Ignorant members of the public think you’re a slacker, and the congressional/medical/industrial complex prevents research into the thing that’s sucking away your life. I applaud these protestors because I know what it cost every one of them. Fund research into ME/CFS/Long Covid now!
JF (Palo Alto)
Here's why I am actually optimistic about the outlook for eventually coming up with effective treatments for ME/CFS, long COVID, and the other possibly-related diseases with overlapping sets of symptoms: 1.The view that these syndromes might be not represent "legit" diseases has gone way down, partly because of activism and partly because of the shear numbers of long COVID sufferers. 2. There are plausible (though far from established) ideas of what the cause(s) might be--e.g. persistent infection and/or self-sustaining pathological immune responses to a past infection. 3. Even if the various hypothesized causes prove not to be correct, these days there are powerful omics-approaches that make fishing for a hypothesis much more likely to be fruitful than it used to be.
A Reader (Brooklyn)
I can relate to this discussion of CFS and long Covid. For decades, following an extremely debilitating 6 month chemo treatment for Hodgkin’s Lymphoma, I’ve had impaired energy levels. My oncologist at the time dismissed my energy problem as unrelated to treatment. (In fact, he dismissed all the side effects I suffered, some of them dramatic.) Like those with CFS, for many years, my efforts to build up stamina with exercise were rewarded with complete collapse. I couldn’t work, because when I did try to hold down a job, I would get sick after a short while. For quite some time, post-chemo—years, I also had the sort of brain fog people describe with CFS. I, too, learned to pace myself, because otherwise I’d be in bed for days. I hated clothes shopping or visits to museums, for example, because those were exactly the sorts of things that did me in. Post-chemo, it took me a year or two to be able to take short walks around the block. Basically, once I accepted that I could not tolerate multiple activities, I incorporated pacing into my life and made it my norm. Over the years, my energy has increased a bit, so that now I can take vigorous walks and even long walks. I can also now go to museums or whatever, but I’m still kind of a one-and-done person. I do what I can and accept that I have limits, but one of the worst things I’ve endured over the years is other people’s skepticism.
GBR (The Northeast)
Chronic fatigue syndrome has been a recognized condition at least since I was in medical school 20+ years ago. My understanding is that it’s basically a diagnosis of exclusion - we run a whole bunch of blood tests and also obtain imaging as appropriate ( usually of the brain and spine). Depending on specific symptoms, some patients may need cardiac testing, EMG, and/ or autonomic testing as well. Once we have ruled out other diagnoses and come to the CFS/ME diagnosis based on clinical history and constellation of symptoms, we simply focus on getting the patient better. If brain fog is a primary complaint, one could consider a stimulant. If orthostatsis is a symptom, one could consider fludrocortisine or midodrine. If paroxysmal tachycardia occurs, try a beta blocker. If pain is prominent, one could try any of the neuropathic pain medications and/or small doses of muscle relaxant medications. And certainly, the patient can only engage - at least initially - in the minimal amount of exercise necessary to prevent deconditioning (which would itself worsen the autonomic symptoms). Slow cycling on a recumbent bike for several minutes at a time is a good option, as are stretches/ leg lifts/arm lifts - also from a recumbent position. CFS/ME is neither hopeless nor substantively different from any other imperfectly-understood medical condition.
Sue B. (Upstate New York)
I think the name of a this disease should be changed to EI-MS-LF Disease. That stands for Exertion Induced Multi-System Loss of Function Disease. None of the desperately ill patients I know say that it is malaise (PEM) that is disabling them.
Marie Margrave (Mill Valley, CA)
I had ME/CFS for seven years after contracting mononucleosis in my early fifties. It went into remission last year at the same time I was diagnosed with stage five chronic kidney disease. Despite being quite ill with CKD, it is nothing compared to the horror of life with ME/CFS. After all those years indoors, I've been able to go back out into the world and enjoy simple pleasures again. I am deeply grateful for having some semblance of my life back, but I still have so much anger about losing almost a decade, and I feel so terribly sad thinking about how many other people's lives are ruined by this -- both patients and their loved ones. And I was one of the lucky ones, I guess. I was able to see one of the handful of "ME/CFS specialists" for a number of years. But his interest in my case waned when I showed no improvement, and the dozens of off-label prescriptions he gave me likely contributed to (or caused) the destruction of my kidneys. And I'm not really laying blame here. I knew the risks and was so desperate to get my life back I would have tried almost anything. And did. But to be able to afford one of those specialists and physically able to travel to their offices is a rare privilege for most ME/CFS patients. There isn't much they can do for us, but I guess it's nice talking to a physician who has some understanding of the condition and doesn't feel it's somatic. Thank you for covering this with so much care and compassion.
Walter (Colorado)
"National Institutes of Health funding for M.E. research has been meager". Perhaps because the bosses there don't see much potential to steer research funding to their network of "principal investigators" and pharma associates.
Leigh B. (Catskills & NYC)
Thank you for the expression, "Post-Exertional Malaise": I didn't know it had a name. My rheumatologist described the phenomenon when he diagnosed me in 2006, but I don't think "PEM" was "a thing" yet (as the popular saying goes). "If I asked you to walk from here [96th Street] to 59th Street, you could do it -- but you'd pay for it later." I was floored: he knew me better than I knew myself. He was clairvoyant! Like the dancer in the article, it's difficult to move slowly and deliberately when, for 35+ years, each day was a sprint to the win.
Maquis (Fair Oaks)
ME/CFS is a condition where lack of understanding taints compassion, diagnosis, and treatment with the scourge of 'invalidation' - you couldn't possibly have what you claim to have because you're imagining your symptoms.
Ste (US)
Chronic migraine is awful and debilitating. Long decades of misunderstanding and misinformation. More research funding now, but no easy answers yet. But our protests calling for more publicity and money for migraine research and awareness and sensitivity were amazing! All the streets shut down, all the important civil disobedience for our cause. Oh. You didn’t notice our performance in civil disobedience? Well that’s because it didn’t happen. There’s ways to get attention that actually respect other people and their needs too.
James Badham (Santa Barbara, CA)
What an incredibly sad article that needs to be read and shared. My heart goes out to those who are enduring this condition, especially those who are looked down upon for not being able to "push through" or whatever the latest phrase du jour is. I wish them the best. That's about all I have.
Trotter (ashland, OR)
SOmething similar happened to me. Got Mono in college, and within a year was in constant pain, had extreme fatigue, and after a few months depression. Lasted about three years, but learned through trial and error that i was intolerant to caffeine, gluten, and years later, dairy. This sense of fatigue and hopelessness is pretty much life ruining, and medical science has no answers and is just now being taken seriously. I feel incredibly lucky that i now lead a mostly normal life, but for some folks it never goes away. I'm amazed at the courage of these people, as I've tried to explain to friends and family, just casual travel and/or a long walk means days or weeks of recovery. They risked alot to do what they did.
Mary Fields (Silver Spring, MD)
They were free to choose what they did. Being free is not something we have, there is no such thing as freedom. Freedom is a quality of our personality -- we are more or less free to resist pressure ( I don't want to be vaccinated ), more or less free to be ourselves and do what we want ( I am protesting at the fill-in-the-blank). The question is always the same . . . increasing the freedom one had or decreasing it.
Lawillibug (Arizona)
I’m grateful for this article calling attention to this disease. I don’t have it or know anyone who does, but I can relate, as have Rheumatoid and Psoriatic Arthritis, and also experience PEM. I can even get exhausted by talking or concentrating/thinking too much. And I mean exhausted to the point of nausea, brain fog, and feeling just wrecked for up to a week. Talking to people in person is worse, because it takes more energy. I usually have to retreat and go lay down after a little while. It literally hurts my brain. Travel is really hard, because while I want to go, I know even a short trip will mean weeks of rest afterward. A weeklong trip (even a low-activity one) means I’m down for at least a month. After my husband and I moved to another state, I was debilitatingly, devastatingly exhausted for about two years. Even taking a shower means taking my pain meds, resting for 1-2 hours, then resting again for a couple hours afterward. Doctors call it fatigue, but that word seems wholly insufficient. Research into chronic fatigue is sorely lacking, and many doctors just seem to ignore that side of RA and PsA, and focus on joint pain. I imagine that people with ME/PEM have an even more difficult time getting proper support and treatment, and are tired of hearing it’s all in their heads or they just need to be more active. I’m hoping the research into long Covid will lead to treatments for other diseases as well.
Heather (San Diego, CA)
We still have so much to learn about how the human body works. I recently watched a webinar on the latest research on circadian rhythms. What really struck me was how the research showed that such rhythms are very important to health--and how modern life is completely messing with those rhythms. It makes me wonder how many other things we are doing that go against what our bodies have been doing for millennia... Maybe that is one reason why we have a rise in autoimmune disorders and illnesses like M.E. / C.F.S. If you are interested in the webinar, go to Scripps Research Front Row Lecture series and look for "Hacking our body clocks to optimize health" by Katja Lamia, PhD.
Flâneuse ΔΔΔΔΔ (Portland, OR)
After being "in the closet" with not-too-severe ME/CFS at work for many years, I set lots of boundaries (go home on time, don't let managers overload you with work, resist pagers and interruptions after hours etc.) Most of those boundaries should just be what employers expect of their office employees. Where those of us with fatigue often have to use the extra time to rest, those with normal energy levels should be able to work 35-40 hours a week and enjoy life in the meantime. Maybe an "epidemic" of Long Covid will help the U.S. workplace adjust to sensible (humane) standards. No one who works with computers, email, twitter, messaging, phones, etc. is productive for more than 40 hours a week anyway: the rest is just rabbit holes and performance.
Dana (Galiano, BC)
Thanks for this piece. Certainly the most shocking revelation is that research funding for long Covid is specifically prohibited for use in ME/CFS studies . This should not be a competition. Symptoms are so similar, if not always identical, that research into post-viral syndromes generally should benefit all sufferers. My wife was seriously ill around Christmas 2019, in Washington state, where Covid was identified just a month or two later. Did she actually have an early case of Covid, or something else? She has been diagnosed with CFS, but it seems plausible that it just as easily be long Covid. To me, admittedly a non clinician, it suggests the absurdity of so strenuously separating the two.
Stephanie Bergman (Cleveland, Ohio)
I get it. I’m 32 years old and developed severe nerve damage and pain after my covid infection a few months ago. Something happened. Something changed. I am so tired. So tired all the time. I pace myself all day. I cry in my neurologist’s office every time. I am a mom to two little girls. I try to be social. Social with my husband, with friends, and I don’t have it in me. I wonder why this happened to me and if I’ll ever stop grieving my old life.
Sara (SC)
This is real and I think an unknown mutation of Epstein Barr virus and more should be done to develop vaccines and treatments for all these types of viruses
Mary (NC)
"Protesters So Ill, They Couldn’t Get Arrested" The police probably didn't want to deal with sick protesters (which require more resources and work to process) so they opted not to arrest any non violent breaches of their protest permit.
Carlyn Jorgensen (USA)
Thank you, Ms. Tufekci, for highlighting this very misunderstood disease. My father suffers from ME/CFS and struggled for a long time to get a diagnosis. He is unable to work, but faced skepticism from the insurance companies when he applied for disability benefits. It took him 2 years-with a lawyer-to get the benefits. There is so much more that needs to be done to help this community. I hope your article reaches some doctors/politicians and they do something about the lack of support.
Mary Sweeney (Trumansburg, NY)
First, let's cut out the macho nonsense and stop pretending that it's somehow noble for physicians and med students to go without sleep. It's not noble, it's stupid and dangerous. We wouldn't want to get into an airplane with a pilot who is chronically short on sleep and we shouldn't want advice or treatment from a doctor who is sleep-deprived. I once went to a doctor I hadn't seen before who was obviously sleepy. She was so out of it that she had trouble understanding when the nurses told her that since I was a new patient she should meet with me in her office before examining me. One of the nurses finally took the doctor by the shoulders, turned her toward her office, and gave her a shove toward the office door, at which point she finally went into her office. The nurses were laughing and acting like this was a common occurrence. Needless to say that was both the first and last time I went to that doctor. It seems likely that the high burnout/suicide rates among doctors is due at least in part to chronic sleep deprivation--as doctors they should know how vital sleep is--duh. Second, for the love of heaven can we have more doctors who actually listen to their patients??? At this point it seems pretty clear that viral infections can produce chronic health problems. Even if doctors don't know how to treat these problems they need to stop acting as if the symptoms are all in their patients' imaginations. Some doctors have already gotten this message, but not all.
Emily (W/ ME)
Thank you for shedding light on this disease. It is the most horrific thing a person could endure.
Joseph Katz (Hamburg, Germany)
Unfortunately, there are things that science and medicine just do not understand. Political protests won't change that. More research money probably won't, either, for a long time, because there may be no good new ideas. People with ALS or neuroblastoma have it worse.
H (Greenville, SC)
@Joseph Katz, someone always has it worse. Don’t diminish the suffering of these people, or dismiss it.
Craig in Orygun (Eugene OR)
One of the hardest things in medicine is when you have to tell a patient that you don’t know what’s wrong or how to treat it. Actually neuroblastoma is very treatable, perhaps you meant glioblastoma, which is not?
Earl (W)
I will never support anyone who protests by BLOCKING TRAFFIC!
Traffic (US)
Don’t block traffic. Don’t take over streets. No matter what you’re protesting. The BLM protesters blocked ambulances and fire and police vehicles on the way to calls. The Just Stop Oil protesters block traffic and glue themselves to the streets. Being in the street is a danger to you and to drivers.
shelli nelson (Denver, CO)
As someone who fell desperately ill with ME/CFS after an Epstein Barr infection - in 1987 - I can't help but despair that 35 years after I got sick the quest for recognition of the illness hasn't really changed. Research is still not being done - partly out of ignorance and contempt and partly because the disease has so many disparate, seemingly unrelated symptoms. That is is "invisible" adds to the stigma. I finally learned to stop telling people I had CFS -- I also had fibromyalgia, which seems to have a marginally better acceptance rate among doctors and the public. A note of hope for all sufferers who might read this. In the 1990s I was so sick the physical exertion required to breathe was exhausting. I was bedridden for a number of years. In 2014 I began IVIG treatments for an immune deficiency (triggered when my colon was removed). By 2018 I was working a part time job and had weaned myself off the heavier pain meds. I am 64 and still working part time. I regained my ability to exercise moderately. It takes forever to build up stamina -- but it is possible. I believe it is the IVIG that caused my semi-recovery. So perhaps in at least my case the cause is immune dysfunction. Thank you, Ms. Tufekci, for shining a light on CFS/ME.
IJM (England)
@shelli nelson Interestingly, my experience in the UK is that CFS is a little more accepted, and significantly more well known, than fibromyalgia. There was an 'epidemic' of CFS among nurses in a fairly high profile London hospital called the Royal Free in the fifties. That might be why.
Ashley (L.A.)
This is heart-breaking. Thanks for sharing it and thank you to the brave demonstrators. Is anyone studying the similarities of long covid and these older illnesses in hopes of learning more about them?
Ellen (Spain)
I’ve often wondered if the majority of these patients are women? I thought that might be one of the reasons why their complaints are so often dismissed.  I have such empathy for these patients. When I experienced chronic pain due to severe herniations in my spine a little over 10 years ago, I was unable to sit or stand for more than a few minutes. Some of the doctors I saw looked at me suspiciously as if I was exaggerating to avoid work. Family members grew tired of my limitations. It was as hard emotionally as it was physically. I was lucky to get treatment and recover but these patients are still struggling. I told myself if I ever get to that place again and there is no treatment that I’m going to Plan B (my euphemism for assisted suicide). I just hope the people with this illness can find relief soon.
PH (California)
Those of us with measurable weird autoimmune illnesses still know the failure of the medical establishment to simply recognize the unknown as a limit of humanity’s collective knowledge. Forty years now—and I still marvel at doctors’ agitation over my suffering. Each article I read on ME/CFS, especial from the wonderful Zeynep Tufekci, brings me closer to lying in the street with these exceptionally brave people. THEY hold the key to the future of medicine. I don’t toss blame to anyone one person, but I wish the medical schools might revisit something elementary teachers use to measure intelligence: Bloom’s Taxonomy. Knowledge and comprehension (or similar labels) are the first two steps. Medical schools grind skill exclusively in these areas. I believe the failures rest in this: we have medical leaders using (mostly) low level intellect to solve complex illnesses. I send hope to those suffering through the unknown, and a promise that I will march with you. We really all should.
kirk (kentucky)
Tragedy and comedy are joined at the hip. I found myself laughing,quietly to myself, imagining this protest, a monty python skit. Who knows what evil lurks in the hearts of man?
Alexander (California)
You forgot to mention Profound Autism.
Ella (D.C.)
I live in DC. People are not arrested for civil protests in front of the WH.
Ellen (Winslow)
I know this is not the point of the article, but please do not block traffic. That’s an incredibly selfish thing to do and it diminishes public support for your cause. For all you know, someone in a car is headed to a dialysis appointment. Well done on the DC police.
E (W)
This article verges on blaming police for… not taking protestors seriously and diverting traffic when they blocked it? That seems so reasonable. Isn’t that textbook deescalation? And I don’t care how just your cause is. Don’t block traffic.
Steve (Madison, CT)
Who can diagnose this? And how debilitating does it have to be? How does any provider know if a patient has this disease, or is merely mildly depressed and anxious and stressed and exhausted from worry?
Elaine Foxgord (Chilliwack, B.C., Canada)
@Steve: Scientists and physicians have been working for years on identifying biomarkers for this disease. Only recently have they begun to have some success, due to the funding provided for Long Covid research.
NYT Reader (USA)
Physicians should not be allowed up graduate medical school until they're taught how to say comfortably things like "We don't know what you have", "We don't currently have any treatment for what you have", and "I'm sorry, we were wrong." And while we're at it, teach them how to comfortably deliver potentially unpleasant or worrisome news instead of avoiding them. Physicians need to learn to communicate early on if they suspect the patient might have something serious, and how to disclose rare side effects or complications to the patient. The current paternalistic approach consists of avoiding, with rationalizations like "if we're not 100% sure, why worry the patient" or "there's no need to mention rare risks to the patients. Laypeople don't know how to evaluate risk, they'll just overreact and refuse treatment." Anything less is disrespectful and patronizing to the patient.
Zeynep Tufekci (NYC)
@NYT Reader Agree with both. While there are many compassionate, sensitive physicians, the phrase "we don't have enough science yet to figure this out" seems to be something they should accept as part of reality. There are a lot of great scientific breakthroughs that came from scientists who decided we didn't know enough about something rather than dismissing the question outright.
Steve (New York)
@NYT Reader Sadly, patients don't want to hear it as they've been led to believe there is a clear cut etiology to all health problems and that it is only a matter of getting enough tests performed. I'm a pain management physician and most patients don't want to hear that in most cases of chronic pain, we have no idea what the etiology is. And patients can, if they have good health insurance, find doctors who will order worthless tests and perform worthless procedures. It's why most people with low back pain who undergo MRIs and back surgery require neither.
Rachel (California)
@Steve I believe some of it is a lifetime of watching medical shows where every case has a simple diagnosis and/or one doctor spends extraordinary effort working on a patient's case and then has a "aha!" moment. This fictional idea of medicine is damaging to all of us. Many medical situations are unclear in etiology and it doesn't mean your doctor doesn't care. (Not to mention that medical shows never show the bureaucratic insurance nightmare side. Not showing that is downright criminal.)
Kathy Tran (California)
Thank you to Zeynep Tufekci for writing this article, which highlights one of the saddest aspects of these disease: those suffering from it can barely advocate for themselves. I am a physician. I have now been fully disabled from long Covid, with symptoms identical to ME, for five months. I am unable to see patients and am now chronically worried about my financial future, at age 40. Only now do I understand with post-exertional malaise is – whereas “toughing it out” is a universal prerequisite for becoming a physician, “toughing it out” simply does not work in long Covid/ME. I’ve tried. Even the simplest PT exercises leave me sore for days. The price of picking my kid up from school when my body says “no” is a 24-hour crash in bed. This experience has given me a very fresh take on all my previous patients with chronic disability. Given how little we know about this disease, physicians might ask, what more can they do to support patients like me? I’ll tell you – support their claims to disability. One of the worst aspects of this disease is being faced with sudden financial ruin. So MDs can stop simply calling patients like me crazy or depressed. (Yes, I have faced doubt even from colleagues.) Stop dispensing work notes for 1–2 days off for a chronic illness that does not yet have a cure. Have compassion and understanding. Perhaps disability systems will be strained, but maybe only then will lawmakers increase research funds and pay attention to the crisis at hand.
Zeynep Tufekci (NYC)
@Kathy Tran I'm sorry to hear about your struggles. And indeed, your colleagues should listen to the experiences of patients, some of whom, like you, are medical doctors, nurses and healthcare workers. I think your advice is astute, and I hope your condition resolves or lightens, and you are able to continue practicing medicine with all the new wisdom and strength.
GenX (NYC)
Thank you for this sad testimony and good luck. I hope the online CFS community can give you help finding the support you need - especially if you face the losing your livelihood/disability marathon: tests and data that don’t harm more than they reveal, indices of function and ability that can be attested and supported. There is quite a lot out there.
Sheryl Pickering (Houston)
Dr. Tran I was diagnosed with CFS in 2006 after 5 years of suffering. Luckily one of my patients told me she had it and was diagnosed and treated by a local internist who specialized in treating CFS and fibromyalgia. Once I got in with her and got a diagnosis and started the treatment I slowly started improving. I still have flare ups at times, but overall I am doing much better. CFS is a disease that causes chronic pain and fatigue, along with brain fog. My fatigue is manageable and my brain fog was totally gone after my first two years of treatment, but the chronic pain is still with me although manageable with medications most of the time. I want to give you hope so that your education and hopefully, your empathy can eventually be used to help your patients. Hopefully, you can find someone there in California to help you but if not go wherever you have to in order to regain your life. I missed a lot of my sons childhood, and it will always haunt me. The things that helped me originally were gutathione/ATP injections and B 12 injections, but there were lots of supplements that helped. It’s important to be in a normal range of vitamins and minerals, not over dosing or under-dosing, so it’s important to have your blood monitored. Good luck finding someone there to help you but you might want to look at the CFS/ME support networks first. Good luck!
Teach (NYS)
Thanks for the important article. Not sure if you would know anything about this, but I participated in a study on ME/CFS being run partly through Weill Cornell and Ithaca College in the months before the pandemic. I was a control subject, and volunteered for the study -- which asked participants to engage in exercise and took blood and other samples -- partly in an effort to help friends with the disease. The experience later stood out to me because when I was infected with Covid-19 in April 2020, I later developed long Covid symptoms that seemed to mirror those of ME/CFS patients -- certainly in the completely and utter inability to recover from any sort of physical exertion. After two miserable months, and more than a year of continuing symptoms, I finally made a pretty complete recovery. But I have been wondering on the status of the study in which I participated, and what findings might have been made. I haven't heard anything from them for a long time, though I was forced to move during the pandemic and they might not have my new address...
Some guy (San Diego)
Speaking to sufferers of this disease/syndrome, let me just say that there IS light at the end of the tunnel, judging by my own experience. I came down with it back in the early 90's, when it was more fashionable and dubbed "the yuppie flu". It began after a "normal"-seeming flu, which lifted but left behind the contant fatigue. I spent much of the next year and a half or so quite disabled, fortunately without any aches or pains, but feeling absolutely ennervated. I managed to drag myself to a university library several times where I became adept at Medscape, studying up. I attended a conference about it where I cross-examined a British researcher who was pushing the theory that it was caused by Epstein Barr (the evidence then was ambiguous at best), and joined a self-help group. My lifestyle had changed considerably--no partying or drinking at all, which I had enjoyed indulging in as my system could no longer tolerate even a single drink, never mind other substances. I really never found any effective therapy, nor could I find a plausible explanation for it (sometimes it occurs in clusters, other times only a single member of a closely-living family succumbs). However, the good news here is that it DID finally lift and go away on its own. I've been essentially fine and normal (or what passes for normal in MY case) in the subsequent decades, so DON'T lose hope! Meanwhile, let's hope that more research can FINALLY elucidate its cause, and treatment!
David Andrew Henry (Chicxulub Puerto Yucatan Mexico)
Zeynep Tufecki, you do good work. Your MECFS report could save some lives. Here's some more history. I was diagnosed with MECFS in 1991. It was devastating, I could barely walk, read or write. Fortunately there was a well informed group of MDs and a very active support group in Ottawa. They gave good advice about how to manage MECFS. Here are the main points. Nutrition: Reduce your toxic load- avoid processed foods, hydrogenated oils and sugar. Lots of fruits and veggies, and salmon is good. Activity: You and a partner/friend need to keep a diary, this is important for claiming disability and tracking progress. One of the key CDC Diagnostic Criteria is,"an activity level less than 50% of normal for more than one month." Massage therapy helps. You don't need a massage therapist, a friend or family member can learn how. This helps with the circulatory problems. A psychiatrist who summed up a 45 minute consultation: "You don't have a psychiatric problem, there's something wrong with your brain chemistry. I recommend you take 4 tablespoons of ground flax seed every day. Your brain is 20% Essential Fatty Acids EFA. When you have a viral infection your ability to metabolize EFA is reduced." Ref Fats That Heal by Udo Erasmus The term 'brain fog' trivializes what is severe cognitive impairment. Space and Pace: Understand your limits, don't overdo it. Read What is ME? British Library Science Information Service ME: A Baffling Syndrome With a Tragic Aftermath
David (Florida)
@David Andrew Henry I hope you are a woman of child bearing age if you are expecting some benefit from that flax seed. Its been conclusively shown that most males do not have the required level and type of enzymes required to convert any significant level of flax seed oils to Omega 3 fatty acids. I had to inform my doctor of this as well when he suggested it instead of fish oil, so don't feel bad. He looked into the medical evidence as I suggested and he apparently decided that he would no longer be recommending flax seed for males. Males only convert 5% or less. Women of childbearing ages can still only convert about 20%, but that's still a lot better then 55. Another problem with flax seed is that especially if the seed is pre-ground and sits, it oxidizes into pro-inflammatory compounds which actually could cause even more problems. Fish oil is much more preferable as it provides the directly needed Omega 3 fatty acids. That is why pure Omega 3's are added to baby formula, not flax seeds. That book is not "science" it is conjecture disguised with science. Borage oil has toxic pyrimidines and yet it is one of the many dubious things he discusses as beneficial. It just shows how ignorant of real science even MD's can be.
David Andrew Henry (Chicxulub Puerto Yucatan Mexico)
@David I could have suggested flax oil, but flax seed has more benefits, and is less expensive. When the oil is extracted from the flax seed, which contains 40% oil. it begins to the quality declines, unless it is refrigerated. Better and lower cost, buy the seed, grind it in a coffee grinder, keep it in a zip lock bag, in the freezer. Cost, about $10 for a months supply. As for the science, Zeynep Tufekci. over to you. The questions: Do Essential Fatty Acids help? Do viral infections interfere with the metabolism of EFAs? Beware of fish oil, there is no quality control, it is very costly, and the thick gelatin capsule doesn't release the oil soon enough in the digestive system to be of much benefit. I worked with Dr Maria di Giacomo, an American nutritionist, who was a WHO expert in India over 50 years ago. She explained the importance of EFAs. and the central nervous system. When the Ottawa psychiatrist explained thirty years ago, the importance of EFAs and brain function, I connected the dots.
Elaine Foxgord (Chilliwack, B.C., Canada)
@David Andrew Henry: The intricacies of “pacing,” among many other helpful skills, are often explored in great detail in self-help plans/courses of study, such as the Complex Chronic Diseases Program offered by Women’s Hospital in Vancouver, B.C. One of the best pharmaceutical remedies they recommended to me was the use of Low-Dose Naltrexone, which turned out to be a total game-changer in terms of improving my energy level.
Mike (Springfield)
Maybe they should protest more against the scientific community that created COVID with gain of function research instead…
Dobre (West)
Against immunocompromised mice only.
JB00123 (Mideast)
“ And despite growing recognition of a connection between M.E. and long Covid, N.I.H. funds for long Covid research cannot be used for studies of M.E.‘ Want to clarify here—the connection between between MECFS and Long Covid is this—if you have Long Covid and you meet the diagnostic criteria for MECFS, then by definition you have MECFS. MECFS is diagnosed by symptoms—if you have the symptoms of MECFS for 6 months then you have the disease. It is not helpful to call LC with the symptoms of MECFS a separate disease due to issues of repeating existing research—i.e. reinventing the wheel, rather than building on the existing research base.
Syd (Everywhere USA)
Shocked the police state mercenaries didn't arrest them. Remember during the summer of 2020 when the thick bloated blue line knocked over people in wheelchairs and beat down handicapped individuals?
E (W)
No. That’s not how I remember it. Most democrats want to support and enhance policing, not defund.
Justin (Everytown, USA)
Sounds like the D.C. police did a great job with traffic.
Victoria (New Jersey)
Thank you so much for writing this.
Livie (Vermont)
Years ago, I had a good friend with CFS. He was unable to hold a steady job because every morning when he got up, he never knew if he would have the energy to go to work or not. He faced across-the-board doubt and denial, ranging from friends who told him to find the answer to his illness in the Bible to another who insisted there was nothing wrong with him and all he needed was firm direction: "Get up off your duff!" CFS is very real and it does not affect only women, as some, such as Susan Powter, have claimed. That said, I'm baffled by the comments here that are about long Covid. While it's possible CFS and long Covid are related, we don't know that. This article is about CFS. Comments discussing long Covid are completely beside the point, which only highlights the struggles CFS sufferers face just to get their reality acknowledged.
sb (Ipswich)
why protest? I'm a bit confused. is there government action suitable to redress medical prejudice that dismisses their concerns? wouldn't this be more effective to hit up the bill and Melinda gates foundation (is he still #metoo ing?---ew)? what about major universities to create centers for research and study?
Lucinda Delphine (Gainesville, FL)
@sb "is there government action suitable to redress medical prejudice that dismisses their concerns?" Good question, and, YES: CDC and NIH definitions, research, funding, and clinical trials define priorities and drive discovery for much medical research in the US. Government (or government-assisted) research and funding is especially important for conditions that don't promise quick, easy, and often continued profits for pharmaceutical companies. Major universities depend in part on NIH and NSF grants to fund their research.
manfred marcus (Bolivia)
Desperate people, sick and desperate, but with not with enough resources to survive by themselves. The government ought to do much more to solve this crisis. This, in these United States? Hard to believe, right? And it would only worsen if republicans take the House (Congress).
Me (Miami)
I guess they were too tired to stage a real protest……?
BD (Seattle)
In medicine, we well know the disadvantaged squeaky wheel gets minimal grease, even when the disease is fully validated and millions suffer. So sickle cell patients have only modestly effective drugs and earn suspicion during pain crises, while most cystic fibrosis patients are white and have even Medicaid coverage of expensive new drugs. Pain and fatigue, symptoms difficult to validate scientifically, make gaining legitimate attention that much harder. But their greatest obstacle may be their promotion by self-promoting non-physician, non-scientist amateurs who command large speaking fees, dominate the podiums, and raise the false concern that this “illness” is but another racket.
Rivka (Massachusetts)
I’ve been an ME advocate for 33 years now, as long as I have been sick with ME, which I got after mono from the Epstein Barr Virus. It is hard to explain how incredibly difficult it is to do ME advocacy when you are too sick to even cook a meal or get to the bathroom, and when everything you do comes with a price tag of days, weeks, months or years of worsened symptoms and suffering. Our bodies are well-beyond merely “exhausted” — they are depleted, at the cellular level. And that is how it feels 100% of the time. Yet none of that stops us ME advocates from speaking out. We advocate for ME, and now Long Covid, because we are driven to make our own lives better, and to improve the lives of our friends with ME and LC. Better, that is, than the living death many of us experience. And the only way to do that, when you are living with a torturous illness that is wrongly psychologized, wrongly dismissed and wrongly neglected, is to push for recognition, respect and the all-important federal funding. People w ME often suffer with no help from disbelieving family and friends, no help from dismissive doctors, no treatments. ME has for too long been belittled by the media, the medical community and our federal health agencies, which traditionally have barely funded ME research (looking at you, NIH and CDC!). Please join MEAction to help change all this. Together we can do it. Healthy allies are needed too!
Pam (RI)
Hi, Zeynep. You are a special human to cover this as you did (although it shouldn't take a special human). As a 30 year sufferer of ME/CFS, I finally feel recognized for the scope of physical, medical, mental and societal torture I've endured. Just curious, how did you enter into our world? Did you know someone with ME/CFS?
Zeynep Tufekci (NYC)
@Pam Thank you. But indeed, it's not special. So, yes and no. Prepandemic, I knew of the illness, and I had watched Unrest, and had a connection to the director. I didn't have a personal tie or deep knowledge. Last year, I started researching Long Covid because I wasn't seeing sufficient coverage (gotten a bit better recently) and thought maybe I could contribute. Being an academic I dug into the history of postviral conditions. I'm also interested in depression and exercise, as one of my close friends suffers from it, and am normally sympathetic to the view that exercise is a great for health. Anyway, the more I dug in to the history and talked to people who had fallen ill over many decades, and read primary literature from aftermath of epidemics—going back to 1385—the more I was struck by the coherent narratives and the similarities, and realized this was likely similar to the case, say, peptic ulcers (caused by bacteria attributed to personality, finally figured out by a doctor who asked the right questions). Plus, as I spoke with patients with ME, my respect for their strength grew. It's so tough! I didn't see the anhedonia of depression as much as I saw limits. Plus, our culture makes it hard to accept just pushing through doesn't work. So, a community who deserves respect and support, a scientific mystery that could solve more ailments, and a big sociological component. That's a good intersection for my work. The least I can do is try to convey its reality.
Lawyermom (Washington DC)
I had a cerebral hemorrhage. A lot of the symptoms these patients have are similar to my experience.
Sky Oracle (Montana)
It's alarming how dismissive folks are about Long Covid, with the business community minimizing the numbers and the disability that it is causing. They ask "where are the workers?" and claim people are becoming lazy slackers. The "workers" are out with a sickness that isn't going away, their lives terribly disrupted. We need a big push to help folks with disability rebuild their lives.
Michael (OR)
I was diagnosed 3 years with Dermatomyositis which in my case was light on the "Derma:" and heavy on the "myositis". Another auto-immune disease. It took me two hands to lift a gallon of milk, I couldn't work so my small farm fell into disrepair, and I would sleep for 18 hours a day. If you read online stories of others with this diagnosis, the common thread is the time (months, years, decades) it took for them to be correctly diagnosed and treated. When I was diagnosed by a specialist, I had to bring a pamphlet to my PCP on the disease he had never heard of. In this age of computers and data sharing, something is fundamentally wrong with the medical profession...something is fundamentally missing in their ability to collaborate, share experience and information, and use technology to get to a correct diagnosis quickly. I am not interested in the politics of insurance, or amount of government involvement in health care...this is not that. Doctors....your profession is failing to keep up with the times. You are failing your patients.
Older (NYC)
“Most doctors aren’t good with the unknown. That’s our specialty” - this was the rueful reflection of a PhD researcher I know, herself a lifelong grappler with personal disability (but also a high energy person who has managed a focused and productive professional career). She, like so many with mysterious disability, has fought a lifelong battle for both clinical support to manage symptoms, and basic research to understand her disease etiology- the underlying cause and nature of the problem. ME/CFS, Long Covid, and related post viral conditions need both: (A) recognition and understanding by the world of physicians and carers for the ways sufferers of these complex and chronic diseases can be helped, at whatever stage they are at, and (B) basic research in a host of areas - from immunology to neurology to genetics - to see what underlying processes can be treated. Thank you for this article.
Stephen Merritt (Gainesville, Florida)
Thank you, Dr. Tufekci. Unfortunately, respect is a quality not much in evidence in public affairs these days.
John McFeely (Miami, FL)
So, I am a long term AIDS survivor. Spent much of the 90's with multiple severe viral and bacterial opportunistic infections. Fatigue, neuropathy, and exhaustion have been my constant companions for over 20 years now. Based on my experience, I recommend the following. First: The Social Security Administration must draft new rules and guidelines for determining disability from long Covid. This is not difficult, and would open the door for folks to receive immediate financial support and access through Medicaid then Medicare after 24 months. Second: The CDC and Public Health Service need to convene a panel to draft initial guidelines on the treatment of long Covid, ME and CFS based on what has been shown to work, and most importantly delineate the issues requiring further research. Third: The NIH should set up a multi center treatment network to conduct clinical trials on various LC, ME, and CFS treatment methodologies. Fourth: Large providers and provider networks should immediately establish specialty clinics for LC, ME, CFS best practices. Fifth: Patients should explore and encourage research for Complementary Therapies such as Massage, PT, nutrition, etc. Finally, all stakeholders should keep in mind that treatment fir these collected syndromes is multi faceted and most likely lifelong. I am fortunate to get my care through a major academic medical center from experienced providers who are always open to trying whatever is necessary for improving Quality of Life.
Linda Miller (Chapel Hill NC)
Some years ago I had symptoms that sound much like ME/CFS, but there was evidently no name to attach to them then. My doctor was competent and compassionate and did everything possible to diagnose and treat my ailment--from acupuncture to spinal taps. Nothing was revealed that provided any help. Over the course of ten years I have improved, starting about three years into developing the symptoms, but am still left with significant nerve pain for which I take neurontin, with its attendant side effects. When long COVID emerged, I felt optimistic that the attention it was getting would also draw attention to post-viral conditions in general. When I mentioned this to my doctor he indicated that he had little hope for that. I do hope his pessimism is unwarranted.
Michael (OR)
@Linda Miller Did your Dr test for Dermatomyositis or for any related disease? If he has even heard of it, does he know it can present with little to no skin issues. (my case) It is a specialized test, done in only a few labs in the country. I hope this helps.
hmnpwr (Eugene, or)
This is truly one of Dr Tufekci's better columns. As someone who has lost his formerly extremely physically active life to long covid, I will be forever grateful to the ME/CFS community for their kind patient advice on how to limit my losses. Thanks to them, I have a decent shot at eventually recovering. Now will we finally start seriously funding research into ME/CFS so they can have a shot? It's another chance for the US to show it still has some sort of moral compass.
Lucinda Delphine (Gainesville, FL)
@hmnpwr I'm sorry for your losses, which I know to be immense. And am grateful for your reciprocal kindness, so graciously expressed.
Sheryl (Utah)
Thanks for this. I am one of those ME/CFS sufferers who, knowing that people with long covid were being advised to push themselves into mild exercise that could permanently worsen their condition, made a bit of a ruckus about STOP/REST/PACE.
Joan (Longmont)
I have fibromyalgia, a chronic pain malady, cousin to chronic fatigue. I healed over the past year following the book Cleanse to Heal by Anthony William. the mainstream medical community does not understand that certain foods feed the virus behind our 'auto-immune' disease. by eliminating dairy, gluten, eggs, and other troublemaker foods and focussing on pure healing foods: fruits, veggies, herbs, and taking anti-viral plant tinctures, the virus is starved and the symptoms dissapate. this is important info to get out there, it is not a part of big pharma's plan. the standard American diet SAD and pollution in our bodies have to be cleaned out. I am nearly living pain free now, 90% of my symptoms are gone.
Elaine Foxgord (Chilliwack, B.C., Canada)
@Joan: I am glad this worked for you, but there is currently no evidence that diet changes alone can result in significant improvement for most LC, and ME/CFC patients.
alex (Indiana)
This is a moving article, and we need more research and hopefully the development of effective treatments for conditions such as those described. There is something the public needs to understand. Much of the research into diseases such as these, and probably the majority of research into effective treatments, is performed by drug companies. In other words, Big Pharma. Most Americans don't understand the important role of pharmaceutical companies, which is surprising in view of the crucial role these companies played in developing the vaccines and treatments that are allowing us to manage the coronavirus pandemic. Today pharmaceutical companies face an existential threat from US trial lawyers. For sure we need a system of tort liability, but the system we have is broken and horribly irrational and out of control. Many companies, including Johnson and Johnson and Bayer, face literally tens of thousands of multibillion dollar lawsuits; most seem to be based on junk science, and won through sympathetic, but scientifically invalid, verdicts by lay juries. It only takes a few loses to bankrupt a company. We need tort reform. We also need regulation, and the FDA serves a vital and essential role. The agency must balance risk reduction with medical benefits, which can be a difficult task. Research on disease by government entities like the NIH and by academic institutions are also essential. But we also need to recognize the vital role played by pharmaceutical companies.
Elizabeth (NorCal)
The best “tort reform” just might be single payer health care, since so many lawsuits are trying to recover medical costs for injury and disability.
Dejah (Williamsburg, VA)
In 2006, I was diagnosed with Fibromyalgia, and in 2009 stopped working because of additional health problems. Not too long ago, someone asked me when I become disabled. "I used to be an elite athlete when I was young. I was never really *well*, but I didn't get REALLY sick until 2003." What happened in 2003? A few days later, I read the NYT article on post-viral syndromes and how there's significant thought that Fibro is really post-Influenza. In 2003, I had Influenza. In December 2021, I had COVID. Post COVID has been devastating. I spend most of my days in bed. When I do get up, even mild activity sends me back to bed to rest for days. I'm fortunate enough to be mentally active, but only if I rest almost constantly. I'm so tired. More than that, I am frightened.
Wise Woman (N Carolina)
@Dejah Yep, I think so many of these conditions are post-viral. It's a national focus now because of the Pandemic. I hope that helps bring about a chance to help us get better treatment and services. It is scary to be alone and so compromised. No one in my family understands. They seem to think I'm mostly okay because I'm a normal weight and I get out most days, if only to do one activity for an hour! I put on a 'good face'.
One Nurse (San Francisco)
Thank you so much, Zeynep!! You are such a wonderful health advocate and really know how to connect with the people AND a great resource for what we know as well as research going on. My son turned me onto you during Covid and you shared an article someone wrote about how the RNA vaccine works. That information should have played on a public TV or radio channel 24-7 to reduce the fear of Covid vaccines! Many thanks for all your advocacy when we need it!!
JP (Brea)
This is a fascinating article and definitely brings light to the challenges of awareness, treatment, and research into rare and real diseases. As a physician who specializes in palliative care- I am just curious as to whether these patients have easy access or are offered psychostimulants to help them thru their days. I am in no way associating there illness with that of those that are terminally I’ll. But I wonder if theses like patients are even offered symptomatic relief while they suffer thru their days.
Older (NYC)
Yes most treatment focuses on symptom relief. Help for more restful sleep, help for pain as needed/tolerated, help for neuro and psych issues, for GI issues (many people have complex allergy and food sensitivities), etc etc. The most afflicted are truly bed bound in a dark quiet room with ongoing acute care. Those who have symptoms that can be managed may work (usually desk work) for years, with considerable “invisible” accommodation, pacing, rest, diet and pharmaceutical supports.
S (NJ)
@JP As a fellow palliative care physician, I say: Good question! As an ME/CFS patient I say: it's complicated. PCPs who are reluctant to prescribe controlled substances in general don't consider ME/CFS a "good enough" reason to make that leap. There isn't great data on stimulant medications in this population, and more anecdotes of adverse reactions than I ever heard in, e.g., cancer-related fatigue. Cardiac dysautonomia (POTS, IST, etc.) is a common comorbidity of ME/CFS, so there's that, and some patients find it very difficult to pace their activity appropriately while on stimulants, which we do generally still need to do albeit with wider limits. So: many generalists won't prescribe them, patients who are connected to the online patient community are afraid of them, and the CFS specialists are divided by philosophy and anecdotal experience. It's often patients who find themselves in front of a non-CFS-specialist psychiatrist or neurologist who get put on one. Some do benefit substantially, though, (I consider myself one; with stimulant medication I can do enough ADLs to safely live alone, whereas's tenuous) and the adverse reactions are generally reversible, so I wish they were more widely offered as an option. It certainly wouldn't hurt to have more voices out there for "this disease is serious enough to be a legitimate indication for controlled substances"
Lizzi (Central MA)
Thank you for bringing attention to myalgic encephalomyelitis/chronic fatgue syndrome. I know two people who have suffered with this for years, and I have witnessed how debilitating this condition is, and how thoroughly it steals their ability to live their lives. Can you suggest where to direct our letters demanding that this condition receive much more research funding?
Jean (Maryland)
Maybe storm the American Medical Association to protest. The people who are trained doctors and other medical professions are the hold-out! Not the government! Doctors are wedded to their very myopic beliefs that they are right and nothing else matters.
Cindy (Seattle, WA)
I had mono in college over the summer, and it coincided with a week when my parents were out of town and I was on my own for a couple of days before they returned. I well remember the occasion where I came downstairs, rested on the couch for a half hour, walked to the end of the driveway and back to get the mail, rested on the couch for a half hour when I got back in, and then went back upstairs and went back to bed. My heart goes out to these people for having to live their lives like this.
Cavalier57 (Mathews Virginia)
My profound sympathy to those suffering ‘long’ post infection symptoms. What you are talking about is pure medical research, not on-going medical care. It’s obvious to me that COVID has side effects that need to be dealt with upfront during vaccination. Understanding what it is and how to effectively treat it will take years (perhaps decades), regardless of how much money is thrown into a universal health system. I have a number of friends & business associates from Canada and Great Britain. They have told me for years the public system is fantastic for health maintenance of routine conditions. But in terms of medical research and breakthroughs, not so much. Especially if the number of effected patients was low. Given the explosion of diseases in the last 40 years we need a way to fund and prioritize pure public medical research, focusing on illnesses with low populations that are not attractive to big pharma or for existing medicines that are too costly (eg: the $90,000 hep-c pill).
Ralph Matthews (MA)
I think we should protest the lack of attention given to this protest.
Practical Thoughts (East Coast)
Activists have to take their petitions to Red State Capitols, meeting halls, restaurants and parks. Nothing gets done without the supporters from these states and the people that live there show little appetite for helping others. The Mississippi welfare issue shows you the disdain many have for those in need. Several State AGs sued to stop student tuition aid. Better to take the time to start a non-profit and raise funds. The US Government is mostly useless.
Older (NYC)
Google ME/CFS nonprofits - and contribute! The Open Medicine Foundation in CAis one. Solve ME is another.
Liesel (Stockholm)
I really feel for these people. They do no receive the attention nor respect that they deserve. When covid broke out I did not fear death, as I figured with death the suffering ends. What I feared was long covid, being both alive and dead at the same time. I cannot even imagine how frustrating living with this illness must be, and even worse, that very few listen. Those who suffer from ME/CFS deserve better, at the very least respect and understanding.
lizannes (Corvallis, OR)
Until the pharmaceutical industry sees a way to make billions, this will continue to be under scrutinized.
Barbara Lee (Philadelphia)
As someone who had chronic fatigue for more than a decade before contracting long COVID, I will agree that many of the symptoms and outcomes are very similar. It took more than a decade to climb from flat-on-my-back to having an average for 4-5 hours of useful time and energy in a day. I had to file for disability, lost a great IT job, and destroyed the earning potential of my "best years" by being disabled in my early 40s. Covid stole that gain, pushing me back to about an hour a day, most days. After almost 3 years I can get 2-3 hours out of a good day, so the improvement is faster, but much of that is having already learned what doesn't work in the chronic fatigue cycle. There continues to be very little reserve energy. "Just push through" is not a concept. If this follows the same path, at about 4 hours/day there may start to be some small amount of "extra" to tap, not much, but a little. For all my fellow afflicted, my best wishes. For the ongoing skeptics, please fit your entire life into 2 hours a day for a month. It's not easy or desirable.
Hannah (Minnesota)
@Barbara Lee Great comment. Folks like me with a cerebrospinal fluid leak similarly have only a few hours a day of function. And many other illnesses too. Its hard for the healthy to imagine.
Catherine (Connecticut)
I got suddenly sick 30 years ago and stayed that way for 15 years. At first I thought I had a flu that would go away. Exercise had always improved matters, so once I felt a bit better I went to the gym. After a few minutes on a stationary bike, I nearly fainted. (The club manager, a sympathetic soul -- not -- came by and said, "Don't die in my gym.") I didn't learn my lesson; I kept trying to exercise myself back to health and it always backfired badly. Today, good doctors know that CFIDS/ME is real and that exercise intolerance is a hallmark of it. I'd say that if your doctor doesn't take you and your symptoms seriously, he or she is not a good doctor.
Mitchell Baker (Massachusetts)
Back in the days of ACT-UP, the truly ill had scores of folks assisting them during protests, and especially id the ill activist desired to get arrested. My point is that back then there were so many still-healthy-yet-terrified people who were ramped up to action. It should not be up to those suffering to protest on their own, they need healthier advocates. My heart aches for these people, and this article will hopefully spur me, and others, to take up their cause as our own. ANY one of us might find ourselves in their shoes one day.
Julia Tell (Princeton, NJ)
Thanks for the excellent oped. Let me add kids with PANS/PANDAS to the list of similar post viral illnesses that affect both body and brain. The hope that we will see more research and treatment options for post viral illnesses seems to be fading. I had hoped long Covid similarities would prompt attention, but many long Covid sufferers are hitting the same medical denial, shortage of treatment, and societal shrugs. Please keep writing about these issues!
John D. (Out West)
As an 11-year veteran of ME/CFS from a viral infection, I'll gently suggest here that healthcare providers other than M.D.s & Pharma can at least help us live with these conditions, and in some cases can improve our lives considerably.
Cat A. (New England)
Thank you for making this article to bring awareness to ME/CFS. I too am struggling post covid (May 2022) with CFS and other symptoms. Letting go of the past me is hard as it feels like eveyone else's life is moving on by and I'm the rock on side of the river. Pacing is essential and finding the little moments of joy in each day is a new hobby that sheds a healing perspective on the quiet life at home. One day at a time.
Claire Emery (Missoula, MT)
Zeynep, I appreciate the brilliance of your talking with these good people before and after their protest to make the point of how exertion changed and muddled them. Yes, the body and the mind fade into a blowing fog where the edges previously there dissolve and are lost. Your article has helped me to name what is going on with me since getting Covid in early February, and I find both relief and courage in your article. As an artist, I find I am called to turn my work towards my experience of living with PEM. Creating a body of this work and showing it will catalyze dialogue and awareness, which is something I feel I can do in my small way to extend what you are starting here. Many thanks, Claire
eMac (New Jersey)
There should also be more funding for tick-borne illness. I've been sick, sharing symptoms with those with ME/CFS, for 30 yrs. I recently found out that many of the symptoms I have from Lyme & Babesiosis; e.g. cognitive loss, abdominal pain, little stamina or energy, nasal congestion, fatigue, are exacerbated or maybe even caused by an accompanying Lyme issue, IBS, which can be caused by SIBO/IMO. There is no funding for IBS, either, a serious condition that can lead to other diseases; e.g. Diabetes, gut cancers, autoimmune disease, coronary artery disease. It's estimated that 20% of the population has IBS, and it's not caused by mental illness, as 'they' have been saying for 50 yrs. I have been a disabled MD from TBI since 1998. I never knew how bad medicine could be until I was diagnosed with these conditions that receive little or no federal funding, yet affect/destroy many lives. Try finding a doctor who can treat all this, including mycotoxin illness.
Martha Stettinius (Ithaca, NY)
A huge but mainly invisible health epidemic. I can personally recommend brain-retraining programs such as the Gupta Program, as well as nervous-system regulation programs such as Smart Body Smart Mind with somatic practitioner Irene Lyon, as ways we can actually recover from ME/CFS and other related conditions such as Long Covid, fibro, etc. It is not hopeless.
kerry Newnham (United Kingdom)
Thanks for your article. ME/CFS comes with a range of severities - from people still able to work with a varying degree of limitation on their personal & social life called “mild” (25% ), to people house or bedbound as a chronic, unrelenting state called “severe“ (25%), with the remaining 50% of patients functioning somewhere in the middle, called “moderate”. The most severe are helpless & requiring Of 24/7 care, bedbound in dark rooms and may be in constant severe pain with crippling cognitive impairment & dire quality of life scores. Those good folk who try to participate in in-person events will be from the mild-moderate category. The NIH has shown no interest in understanding or helping patients with severe ME at all and are trying to pretend that their long covid research investment, granted to them from Congress, “will do” for the needs of all the subsets, stages & severities of ME/CFS. We unfortunately will need more protests with the help of healthy allies, to budge the stubborn neglect of ME/CFS that across decades, despite being a scandal, has become the norm.
Lua M Wells (Charleston, SC)
Thank you for this article! I recently became interested in this subject after reading an excellent book called The Lady's Handbook for Her Mysterious Illness by Sarah Ramey, and also another excellent book called Ladyparts, by Deborah Copaken. I highly recommend both!
Allan Rydberg (Wakefield, Rhode Island)
Something is really wrong here. I wonder if the problem stems from trying to push these people back into the work force before they are even healed. There is another possibility that is universally ignored. It is the flame retardants that are added too many pieces of furniture. Couches and chairs are expensive so older ones are oftem passed from family to family as they become older. The older the furniture the more likely they are to have really toxic and even cancer causing chemicals embedded in them. But business as usual means all this is ignored. And will continue to be ignored. The real sickness is our so called health care system itself.
John D. (Out West)
@Allan Rydberg: There are toxins everywhere; we live in a soup of them, and yes, the ME Action pages do say toxic exposure can trigger the disease. But the vast majority of cases appears to be triggered by viral infections. Mine is due to a neuro-invasive case of West Nile.
Allan Rydberg (Wakefield, Rhode Island)
@John D. Yes yes, yes but i prefer to limit my exposure to toxins. To give up because "there are toxins everywhere" is unwise.
John D. (Out West)
@Allan Rydberg: I wasn't suggesting "giving up" in the least; I can see now how you could infer that, but it is not the case at all. I absolutely HAVE to limit my exposure to toxins, in far more ways than just that former gasoline additive that was "converted" into flame retardant for soft furniture and mattresses. The point of my comment was that yes, toxins can be involved in conditions like ME/CFS, but the main triggering event is usually a viral infection. I also thought you were limiting your concern about toxins to flame retardants, which happily, you definitely are not!
TakeThis Waltz (Eurasia)
Thank you so much for this article, professor Tufekci. A friend who has suffered from postviral ME/CFS for over a decade has told me one of the worst aspects of the disease was being taken seriously to begin with. Even close friends had trouble believing it wasn't psychosomatic or a symptom of depression, and even considered my friend and their partners 'co-dependent'. As a result, they have largely gone through this ordeal on their own. So thank you for contribuing to a wider understanding of this disease. Beyond ME/CFS, I think the doctrine of 'pushing through' disease or fatigue does us all a lot of damage. I've lost count of how many times colleagues have come to work when they should be recovering in bed. We should stop treating sick people as if they are slackers. Illness comes for us all.
boston123 (boston)
Thank you so much for giving voice to the voiceless. Indeed, it can be very frustrating to have such a condition and being told to ignore or deny it; or simply work through it.
IC (Colorado)
There is no cure for ME/CFS yet; maybe there never will be. We who have this condition just do our best to manage it throughout our lives. Covid has thrown us a disturbing new challenge. Because some of the most common symptoms, and suspected causes, of Long Covid are so similar to (some experts say exactly same as) those of ME/CFS, we have to wonder whether we are more vulnerable than others to Long Covid. So far, all we can do is wonder. There has not been a single study of how Covid impacts ME/CFS sufferers and whether we are indeed especially susceptible to Long Covid. (Three top national experts on ME/CFS recently confirmed this to me.) My choice is to be extremely cautious (always masked in public indoor spaces, no indoor restaurants, movies, etc.) That makes it tough to feel normal these days, when so many act as if Covid is a thing of the past. The toughest part is not knowing whether my extreme caution is medically warranted or not. Here's hoping there will soon be some good research on how Covid impacts those of us with ME/CFS.
Benjamin Engelsberg (Philadelphia)
Thank you Ms. Tufekci. You've described my own life more effectively than I have been able to. I'm sharing this article with everyone I can think of who might care. I'm so appreciative of your work.
Someone (NM, USA)
Thank you so much for this article and the attention to ME/CFS. I've been dealing with the condition since a bout with Influenza A in 2014. These protestors are heroic in my eyes; I can't even imagine the cost to them of this protest. ME/CFS is more debilitating than anything I've experienced - including the secondary progressive multiple sclerosis that disabled me from work twenty years ago. If it takes an expansion in the pool of those affected by ME/CFS, it's a sad commentary on our society, and particularly the doctors who think that their med school rotations give them relevant experience in living with actual debilitating fatigue. (They were NOT completely debilitated: hence, they are now physicians.) You are absolutely correct that we need to do more for ME/CFS patients. We need research and advocacy to overcome the prevailing attitude of "just power through it" - there is no powering through a disease that saps energy to the extent that breathing seems like an onerous burden.
Wise Woman (N Carolina)
I experienced many of the "Long Covid" symptoms starting in 2019 after an undetermined viral illness. I went to several doctors before learning that my loss of smell/taste stemmed from the virus. I never received any pointers or consideration when I sought answers from the medical community about my loss of vitality. I am a professional who did aerobic exercise 6 days/week for 35 years. Then the worst thing happened: I regularly was 'struck' by a malaise in the early afternoon about every 2 weeks: chills, confusion, profound fatigue and had to leave work early to return home, lie down. Each time I got any other virus during the ensuing years, I'd often experience vertigo in addition, which is so disorienting. When all the information came out about Long haulers, I could finally identify what my experience meant. I think we really need to LEAN IN to better understanding, treatments and support for people of All Ages. I'm a RN and had to retire at the beginning of the Pandemic because of my limitations. This was Planned. I feel lucky to be alive. Thank goodness for VACCINES.
Adam in Mass (Massachusetts)
Thank you Ms. Tufekci for an excellent piece highlighting the huge burden of ME/CFS that remains largely out of public viability. You make many great points including briefly referencing how the NIH drastically underfunds research on this condition. I know you have limited space so I’ll briefly highlight two additional points I wish could have been included: 1) You graphically describe through personal stories the severity of ME/CFS but it would have been very valuable to introduce readers to the scientific concept of Disease Burden that places ME/CFS as higher disease burdens than both MS and HIV/AIDS on the spectrum. 2) There’s academic research to be cited in relation to just how underfunded ME/CFS research really is by the NIH. One study calculated that “To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold” — which means just to bring it into line as receiving average funding of other conditions with similar disease burdens. Links aren’t allowed but if you google “Research update: The relation between ME/CFS disease burden and research funding in the USA” you’ll find an academic research article published in 2020 on this topic which has a lot of great data including the source of the stats I cite in this comment.
laurence (bklyn)
We do not live in a caring society. Our's is an economists world. "Evidence based" medicine has become an excuse to ignore idio-pathic conditions, even ones as common as Lyme disease. I suffer from emphysema. The problem is clearing the CO2 from my system. So my blood oxygen level reads as normal even when I'm overwhelmed by dizziness, weakness and confusion. As soon as I make the slightest effort. My pulmonologists just aren't interested. And, obviously, I can't wear a face mask, so I've been denied any access to medical help. Imagine.
Mother Mary's son. (planet Earth)
I wonder how much depression plays a part of this? I'm not suggesting the "it's all in their heads" approach, but depression is a factor in lots of maladies, I think. Whether a part of the origin or the continuation of a problem it can have a big effect. Forgive my non-medical and not so great layman wording of my comment. Depression is, nevertheless, a factor in many things.
Ana Nelson (California)
You might want to consider this: being unable to function as well as you previously could, can be depressing. Take it from a long Covid patient who is still affected by fatigue after 20 months. Although I have not had classic depression symptoms, remaining positive despite the loss of ability to function as well as one previously could can be energy consuming, too. Learning to ration energy and activities is necessary.
Benjamin Engelsberg (Philadelphia)
@Mother Mary's son. I'd encourage those who are interested to read the description of PEM more carefully. The crashes it leads to can be sudden and violent, sometimes coming days after the triggering event, and can last for months or be permanent. In my case, I get a specific sensation of weakness in my legs that prevents me from taking normal strides. Despite the struggles, I have learned to find joy in life, and this has done nothing to improve my physical symptoms.
Mbluebird (Iowa)
Yes there is a symptom overlap between CFS/ME and depression (both conditions probably involve disturbances of the neurological and immune systems). There is a correlation between CFS/ME and depression (as many commentators have pointed out, who wouldn’t get depressed when you can hardly function, hold a job, do enjoyable things, handle even a tiny bit of physical exertion) but that does not mean that depression is a cause of CFS/ME. I am a psychiatric provider and work with a lot of patients referred to me for care for depression and anxiety and who coincidentally also suffer from co-occurring chronic conditions like CFS. I also have a loved one who has suffered from CFS for a decade and a half. Through my experiences with my patients, my loved one and my extensive reading on the subject I say with confidence that depression is not a cause of CFS and the 2 are very distinct disorders. The assumption by many health care providers and other people that CFS is really a disguised depression has been extremely harmful to the sufferers of CFS and limited medical research on the topic.
MK (New York, New York)
Thanks for this. I suffered through several years of what I now understand to be very mild CFS. I then went into a rigorous exercise regime trying to boost my energy back up, and of course it became much worse. I had moderate CFS for two years during which a 20 minute walk would make me feel hungover for a day or two after. I was able to almost fully recover by going on a very strict pacing regimen. I controlled all aspects of my daily life, wrote everything down, made sure to take scheduled naps and basically limited life to my immediate block for months on end. With no crashes, my body was able to heal and I slowly re-introduced activities one by one, to the point where I can live a normal life now, including exercise. I do wish that this method of recovery was more widely known. It's very hard to do and probably impossible for a lot of people but also seems liken the only path that might actually get people better.
Helene Sorkin (Tucson AZ)
@MK I personally thank You for telling this your story. As a medical practitioner my guess is this worked as you were able to do it right away. After years and years it looks like this is no longer possible as these folks are already doing that. And have been doing that. Am delighted it helped you. When I advise people who have Covid to be sure to rest and not push it as they get better they respond a week later, “I’m great - full steam ahead”.
Older (NYC)
The ME/CFS community has long advocated finding the best ways to “live inside your energy envelope”. For some people, wearing a heart rate monitor I critical. Others have to prioritize and schedule sleep. An essential approach for what CAN be managed.
MK (New York, New York)
@Older Yes. For me the key was not living inside my energy envelope, but way below it. The question wasn't "what can I do?" it was "what can I do where I experience no CFS symptoms at all?" What I understood was that CFS symptoms occurred as a reaction to over-exertion. Once I found that activity level and was able to keep it even though I felt like doing more, that's where actual healing happened.
Drspock (New York)
If we can spend millions on gain of function research on coronaviruses, and we have, we can certainly increase funding for PEM. Setting priorities is difficult. There's never enough money for every need. And I support the idea of pure science, that is allowing researchers to experiment with ideas to see what can be discovered. But there's a lesson from our experience with Covid and gain of function. First, the Department of Defense should not be setting our health research priorities. They have ample funds and the facility at Ft. Detrick to do whatever they need, and there's no need for NIH money. Secondly, some research carries its own risk/benefit calculation. In this case, we have little if any need for gain of function work and there are considerable risks of a lab leak. This is clearly a case where priorities were misplaced, and those funds should be shifted to PEM.
Matthew (Avalon)
I genuinely wish these people well, and I hope this story brings the attention to their plight and encourages research and assistance. I’d respectfully suggest
Matthew (Avalon)
… that the issues with these protests were bad luck and timing. ACT-UP protestors would have gone straight to the crosswalk, without notifying anyone.
Lucinda Delphine (Gainesville, FL)
@Matthew Yes, ACT-UP provides a great model for building successful social movements—and merits MUCH more credit than usually given for fast-tracking clinical trials; expanding access to experimental drugs; centering patients' experience, knowledge, and priorities; making strategic use of mainstream media while also producing its own brilliant graphics (in coalition with artists' cooperatives like Gran Fury); producing its own direct media and archives (DYKE TV, 'Voices from the Front', the ACT-UP Oral History Project—great resource and easy to access, please google it!); reinventing direct action; making necessary connections (to homelessness, healthcare access, IV drug use, gov't spending priorities, pharmaceutical industry profits, homophobia, racism, etc, without losing focus; and more. (Read "Let the Record Show," by Sarah Schulman, for the most in-depth account to date.) BUT, Ms. Tufekci's essay seemed to suggest not that these ME/CFS protesters "notif[ied] anyone" about their movements, but that they couldn't move quickly enough to out-maneuver police. And as another comment pointed out, while a LOT of PWAs were active and effective in ACT-UP, they were joined by others who were not (or not yet) sick, some HIV+ but not ill and others HIV-, including many at low risk. The conditions for organizing and communities involved are very different; please don't blame ME/CFS patients by comparing our activism unfavorably to ACT-UP's. We're sick and we're trying. Join us?
Lee (Holland, MI)
I had hoped the documentary "Unrest" would be cited in the article. I found a reference to it on a Long Covid thread on Reddit. Watching and sharing may help spread the protestors message more than their DC appearance. Until recently, health care providers could get CME's for watching.
Kathy (ND)
Also, to read a first person explanation of the onset and continuation of these symptoms, Google Laura Hillenbrand, the author of Seabiscuit and Unbroken. She was only in college when it began.
Helen Jacoby (Syracuse, NY)
I am a recently retired infectious disease doctor. The problem physicians face when dealing with this syndrome is that the biological cause for the symptoms is poorly understood, and there is no clear treatment. Until research leads to more information, an individual physician in his/her office has almost nothing to offer these patients other than compassion and the kind of advice a mother would give: rest, tend to your mental health, do what you can, etc. Patients are understandably very frustrated that the doctor doesn’t know what to do. But we don’t. The doctor is upset that he/she doesn’t have answers and the patient is upset that the doctor can’t help them. And all of this must be dealt with in a shorter and shorter visit as greater “productivity” is expected of the doctor. Physicians haven’t been given the tools or time they need to effectively help patients with poorly understood conditions.
Shane C (Utah)
@Helen Jakob - I’ve often counseled other patients to listen for all of the various ways that doctors tell you they have nothing to offer. And to be liege them. Too often “I can’t help you” is turned into a nasty interaction with the doctor making up some “explanation” based upon the assumption that the stress evident in a severely I’ll patient is causal. How I longed for the day when I might hear the words “I don’t know.” You talk about the “advice that a mother would give.” You recognize that advice as falling far short of what we all should expect for a standard of care. I agree. That said, it is honest and there is no better place to start than an honest assessment of where we are. It’s not the doctors fault that so little is known about ME/CFS. That responsibility falls to the CDC and the NIH (and Francis Collins). I once asked Collins why we don’t even count the number of people who die from ME/CFS or it’s complications. Don’t we always count what we really value (COVID cases, COVID deaths, our bank balance, our retirement savings etc.). ME/CFS patients don’t often have anything left in the bank and “retirement” nearly always turns into an unplanned “medical retirement” and anything that had been in the savings account is long gone. So what’s left to count. Count survivors, and count dead people and acknowledge their lives and their passing.
Zeynep Tufekci (NYC)
@Helen Jacoby Dear Helen. I agree many physicians are frustrated, and haven't been given the tools and the current "ten minutes with the doctor" system is cruel all around. We need more research, There's knowledge about things that help some with quality-of-life accumulated through experience in the specialized clinics and in patient communities that remain scattered. We need trials and integrated clinical guidelines. That said, I think just telling the patients honestly that you don't have the answers they seek is an important positive. I've heard of too many stories of patients being dismissed for decades — some ended up with MS diagnoses when someone finally ordered the right tests, others end up with conditions like ME that still lack better ways to diagnose them. But many told me how relieved they were when a doctor actually said "I'm so sorry, I don't know how to help you" rather than "you just need to try harder and see a therapist." I think many deeply appreciated the compassion you provided, even if you didn't have better tools.
jill (portland)
@Helen Jacoby , there is some research and progress but there's woefully few active: here's a link to the reporter Ed Yong's excellent article regarding the doctors who have been working on it: You could get involved since you have training.
UC Graduate (Los Angeles)
A fundamental set of question we need to ask is, "How do we best allocate our healthcare resources? What are we seeking to maximize? What is a reasonable share of our economy that should go to healthcare?" Framed this way, there's probably some medical conditions that will be left out. Some conditions may effect too few. Other conditions too expensive to treat. And other conditions where there is no meaningful intervention. Political movements that result in garnering outsized medical resources distort allocation of healthcare. If billions of dollars spent on treatments stemming from political activism were allocated to more basic needs ranging from prenatal care, childhood immunization, or treatment of hypertension result in better overall health of Americans? The answer is obviously "yes" but stating the obvious seems to be the toughest thing to do in polarized America. I'd imagine that many people will say that we can have it all and every medical need should be met, but that's a horribly naive position that has led us to paying the most for the worst health outcomes aming developed nations.
If only it were that simple. If it were, Viagra surely wouldn’t have been funded and developed and marketed and taught to physicians with great effort. That ME/CFS sufferers are predominantly women and the condition is not only minimally funded but also viewed with skepticism and worse is no coincidence. Medicine has a long way to go to treat women’s health with the same level of urgency and commitment.
Josep (UK)
@UC Graduate I think this is an interesting and valid perspective, but it doesn't take into account the cost to society (financial and otherwise) of disability. Every person (with any disability) who is unable to work or continue their normal life is someone who could be contributing to knowledge, research, culture, society, family life, literature etc. (indeed, there are many doctors & scientists left unable to work due to chronic illness). I would argue that the questions that need to be added to your 3 are "how much is it costing to have these people missing from society & the workforce?", and "can we afford that?"
Heather (New Mexico)
Thank you for basically affirming society’s decision that these conditions, and the people who suffer from them, don’t matter.
c.adams (cape cod)
I work in a Skilled Nursing Facility and these symptoms remind of the very old, very sick people I attend to as a CNA. Being exhausted by a ten foot walk with assistance to the bathroom and back, evident by the extreme sense of relief when returning to there chair or bed. You'd think they just returned from a 10 mile forced march. To empathize with them I visualize what it felt like to have the flu as a child and how the action of getting to the bathroom felt to be at the level of maximal exertion. I would think that we have all been there at some point in our lives, the difference being our symptoms resolved while theirs has persisted and gotten worse. Just imagine being stuck with the extreme fatigue and malaise of a viral infection without the other telltale symptoms to alert people to how sick you actually are.
whs (ct)
Thank you, Dr Tufekci, for bringing this horrible basket of suffering to our attention. I've known about CFS and long Covid, but nothing about ME (or PEM) until now. Knowing this now, I'm really struck by the efforts these folks took to produce a White House protest and bring attention to their suffering. There must be some commonality within ME sufferers where research can isolate what's eating up all their energy. More funding is definitely deserved. Messenger RNA has given us a giant step into viral treatment. Maybe it can help here, too.
Patrick R (Idaho)
I have a close family member who has been suffering from this for over a year now. Not long COVID, so she gets turned away from most doctors. She had to quit her job and sell her car since she could no longer handle either, and now medicare pays for her taxi rides to doctors visits (which are sometimes far). Its a challenge just to organize them, and sometimes she has to find a friend to take a day off work at the last minute to take her to a specialist in the city. It took more than six months to get officially diagnosed, to get on the right prescriptions, and to be seeing the right specialists. She is perpetually drained - I cannot imagine what going to DC and participating in this protest would have done to her. What these protesters did was truly heroic, and I hope it gets noticed by those in power.
Thank you for publishing this thoughtful article for those with ME/CFS. Your analogies for life passing them by are spot on. Yes. Additional funding for research is crucial to help diagnose and treat. That will happen only when more people become aware of this long-term illness that robs individuals of their normal lives and society of its many contributors. Tragic. My son developed ME/CFS after having mononucleosis. He has struggled every day for the past 6 years. For those looking to connect with others with ME/CFS, or those trying to find the words to explain their condition to others, you can connect with Winston on Twitter, @winstoncb . You are not alone.
andi (Massachusetts)
@KCB I've been a Twitter follower of your son for some time. Appreciate his thoughtful comments. My son has suffered from MEcfs for 5 years. I understand.
Le (Paris)
My heart goes out to these people. I pray their condition resolves on it own or that a cure is found. The body is so mysterious.
Kent Kraus (Alabama)
I sympathize with these and other victims of rare conditions. There are literally hundreds of rare medical conditions like M.E./C.F.S. that need to be studied and cured and there is never enough money. My grandson has one of them, so I resent it when people with another rare medical condition decides they need more of the limited funds than the other conditions, You can never look at a single problem in isolation from other similar problems.
JD (Brooklyn)
But ME/CFS is not among the most rare of conditions. And now, many as half of those with Long COVID - so as many as 1 in 10 who have had COVID - could have it.
Shane C (Utah)
Combining long -COVID with ME/CFS (very valid move - see DeBellis in JCEM, 2021) and you have 25 million patients in the US. NOT rare anymore.
Carolyn Zolas (NC)
I have a friend with this disease. Few people understand that she is not faking her fatigue, which adds to her neuroses. I hope that medical science can research this and bring people relief. "Invisible" diseases are just as bad, and in some ways worse, than a broken leg.
Heather (New Mexico)
A broken leg can be welcome to a ME sufferer, because that’s a problem other people can see, and therefore believe. Always having to explain your situation to the skeptical is exhausting as well.
Talbot (New York)
We can be so self-centered in our analyses. We see people who used to be active and suddenly can't move--with no discernible cause--and think, gee I'd like to take frequent naps, too. We think, when I can't get up and get busy, I'm depressed. If no physical cause has been found, it's in their minds. Or worst of all, the correlation with depression that's spun as, if it's also there, it's the cause, rather than, it's the result. If you used to be a dancer and struggle to water your plants, wouldn't you be depressed? There's a famous old adage: just because you haven't found a physical cause doesn't prove there isn't one. I wish all of them better health and a lot more attention and funding.
JudyF (Pittsburgh)
The tiny number of comments to this article shows how true Ms. Tufekci’s observations are. I am fortunate not to have long Covid symptoms, and I was distressed to learn how the protest had been ignored. I’m glad we are now aware of the lack of funding and research. Sadly, I’m not optimistic that anything will change unless a multi-billionaire gets the condition.
Expat (Portugal)
I got fatigue from the antibiotic ciprofloxacin. Luckily I was 66 and had done much living. I learned it destroys the ability of every human cell's RNA ability to produce/use mitchrondria which produces the body's energy. I had hoped long term Covid would also research this kind of fatigue. Unlike a friend, I recently checked if I get PEM by overexicersing, with necessary rest. Nope. For me Ritalin gives me energy, but try convincing doctors here to provide prescriptions. Nope. I'm trying one last supplement, D-ribose for energy. Then I'm done. My personality has died too. At 72 I feel 92. I console myself "At least I'm not living in Afghanistan or Ukraine." But others have much worse debilitating diseases so I'm trying to let my sense of contentment dominate all other emotions. Nope, not successful yet. Hopefully, soon.
O. Clifford (Boston)
@Expat I’ve had positive resultswith ribose myself, but don’t be surprised if it takes double or triple the recommended dose to work at first. There’s no toxicity risk, unless simple sugars are a problem for you. I mix ribose powder into protein smoothies to keep my blood sugar from spiking. Also, don’t be put off by the smell of ribose; it’s not exactly foul, but I find it rather unpleasant. Good luck, and I hope you find some improvement.
Heather (New Mexico)
My doc is generous with meds, and gave me modafinil (Provigil). It’s gives my brain energy, but then my poor body can’t keep up and the PEMS that follows is pretty brutal. I save the modafinil for very special occasions, and expect to be prostrate with fatigue and pain for a week after. The drugs give, but they also take away.
Sandra Seaman (Pennsylvania)
I have found some help with d-ribose. Oddly enough, it helps with sleep which in turn helps everything else a bit. One of the difficulties with PEM, for me, is that I look quite normal. My case is mild compared with those mentioned here but that trip would have sent me into a prolonged flare up of a multitude of symptoms. These people are brave - and gracious. Thank you for risking your health to bring attention to ME/CFS/PEM.
Sky Oracle (Montana)
I welcomed long Covid after suffering from M.E./C.F.S. for what will be 40 years next year. The brain fog was identical. "They have to listen to us now," I told my family. "Maybe this will break the code." I learned in the 1980s that standard western medicine was not going to find any answers for folks like me, and would instead say it was a psychological disorder. My own doctor was sympathetic and attended many infectious disease conferences looking for answers, but he finally threw up his hands and said it was going to be a hard road ahead, and warned that early data showed a strong possibility of upcoming neurological outcomes (MS). This freed me to build my own protocol, and I have lived a full life by blending medical traditions and refusing to assume only western doctors could be forced to find answers. A global push to find treatments for post-viral illness may bring more relief for these miseries and other damaging neurological outcomes.
Cleo’s Mom (US)
It sounds like you have some insights into what has worked for you. Would you be willing to share?
The symptoms described here completely describe my current situation and what I have been dealing with for a few years now. My issue is that I refuse to get a diagnosis of CFS. That is not a diagnosis. That is not the root cause. I am working with several doctors to get to the bottom it my issues. At this time I fix one thing and find another, but there are things to be found. Many allopathic doctors only look for lab results to be out of range. You need to do your own research. Look at the results of medical research and advocate for yourself. Protesting is not the answer because there is no one root cause. There is not one disease to cure. Collect daily data on yourself and bring that to a doctor that looks for root causes. It is going to be a lot of work and it is going to be very frustrating, but from my perspective it is worth the effort.
Maria (Ottawa)
@SH You are probably right about there being more than one root cause. I too suffered from "chronic fatigue" and what finally made a difference to me is being diagnosed with celiac and going off gluten. My fatigue eventually returned, but this time I was advised by an integrative physician to try the paleo diet, which involves going off foods containing lectins (like beans), and also avoiding all grains and sugar. Many athletes follow this diet: it is worth trying.
@Maria Being off gluten has been a life changer for me! I have an atypical reaction to gluten, so it was not until I was off it it that I realized my symptoms were actually symptoms and not just me exaggerating. That along with finding a doctor to prescribe low dose naltrexone and finding ways to find my ideal ranges of vitamins and minerals (along with treatment for my official diagnoses) have gotten me closer to my goal of being active again. I was a runner and now a 1 mile walk wipes me out for days.
Benjamin Engelsberg (Philadelphia)
I fully agree that ME/CFS is a meaningless diagnosis, except that you need a name to organize research efforts and have codes for disability/insurance. My true hope is that one day when the biological cause of my post-exertional malaise is understood, I can have a diagnosis that reflects the problem.
EP (Philadelphia)
I would welcome a longer term study on the temperamental characteristics of individuals who are afflicted with either Long COVID-19 or ME\CFS. As someone diagnosed with CFS over a decade ago I pay special interest to this question. I wonder about traits such as being highly sensitive and their relevance to this question. More robust research might be able to clarify risk factors and ultimately the cause of a confounding illness that is sure to upend one's life and sense of self.
Smilodon7 (Gilead, The State Formerly Known As Missouri)
Are you kidding? This is more of “it’s all in their head”.
Nikki (Islandia)
@EP This appears to be an autoimmune disorder. Temperament does not determine whether you get it any more than it determines who gets Type I diabetes, which is also an autoimmune disorder.
Anon (Nyc)
I'm so glad you wrote about this article and the biases that can exist in the medicine. Your comment about doctors only understanding it if they had someone in their life who has it really resonates. If more doctors had disabilities or loved people in their lives who did they would be much better doctors.
Zeynep Tufekci (NYC)
@Anon Indeed. Many doctors are compassionate and knowledgeable, but this condition is a triple-strike against their self-image and how their profession operates. First, it's complex and there's no single specialty, a problem in the age of specialization. Second, there is no treatment (so little funding! so few trials! ), and not being able to heal their patients is something that many doctors struggle with. Third, becoming a medical doctor requires ambition, grit and the ability to push through even when the obstacles don't make sense — like those irrationally-long shifts that we know can harm patient care as sleep deprivation and overwork impairs judgment. An illness that one cannot push through in the traditional manner is difficult, and even frightening to contemplate, even more so when that's exactly what has worked for most of one's life. Plus, family and loved ones know the before — they understand someone becoming bedridden after a very healthy life following an infection isn't likely to be depression alone. Besides, unlike people with depression, people I talked with desperately want to do more, but can't. As someone who relishes pushing through, and as a life-long exerciser, I've had complicated emotions myself as I worked on this story. My lifelong go-to solutions would all backfire. I've personally come to recognize their perseverance and grit is above and beyond what most of us can imagine, and have a deep respect for their strength.
Hannah (Minnesota)
@Zeynep Tufekci Thank you for this story and your thoughtful understanding of this and similarly misunderstood conditions. Zeynep - you remain a powerful voice of truth, compassion, and policy insight!
Marty Smith (New York)
@Zeynep Tufekci Your understanding for this disease has been much appreciated. Thank you.
Chad (New England)
Long Covid, easily dismissed, is real. My healthy, highly motivated, professional partner has it and is a shell of her former self. Ill enough to seek medical help - breathing difficulties and frequent whooping cough style coughing fits for days or weeks at a time - but unable to obtain effective treatment has been extraordinarily difficult. Physicians are vexed. And patients are rightly frightened.
Zeynep Tufekci (NYC)
@Chad Indeed. There are no established treatments, and even integrated, national clinical guidelines are lacking. Even the most well-meaning physicians are vexed. We need more research into treatments (what exists is very slow and sluggish) but we also need much better clinical guidance. The few more experienced clinicians, many in specialized clinics, and patient communities themselves have been figuring some stuff out — things that help some regain a better quality of life — but even that knowledge remains scattered, and uncertain.
Groucho Marxist (Canada)
@Zeynep Tufekci There has been some research on fibromyalgia and a role for antidepressants, suggesting a good effect. Before readers reply that this is just writing off a problem as "It's all in your head", remember that true depression is a brain disorder with severe costs of all kinds to the depressed, to their families, and to society. The biological basis is not entirely figured out but one tempting observation is that moderate to severely depressed people often report pain at times severe and inexplicable, which improves with antidepressant treatment, just as fibromyalgia also improves. It's of course pure speculation on my part, but perhaps the two disorders are linked, like seeing 2 separate icebergs which are really the same huge mass with most of it underwater and 2 peaks visible on the surface. For reasons unknown but presumably genetic, different people can have different sized peaks of their personal iceberg. I can well imagine that studying this would be difficult. For one thing, funding studies would be difficult because there is no profit in cheap generic antidepressants. Prospective subjects could refuse to participate because of the feeling of being "written off" as depressed. But it would be worth further consideration.
Robert (San Diego)
@Chad I went from a lifetime of hard charging, globe trotting, well compensated consulting engineering work, to being on full disability during what should be the earnings (and tax paying) prime of my career. The genesis of my condition may have been an untreated bacterial infection I contracted in the field during 2014, which developed into ME/CFS. I literally live day to day now, taking stock of my energy reservoir to prioritize what I should attempt to accomplish, even if it is to simply shop for some food. Like your partner, I too am a shell of my former self. I've no words to describe the changes, physical and mental, in my life. It shocks and angers me there is still a cohort of the medical profession that questions if ME/CFS is "real", and there are no answers on the horizon.
Marjorie Summons (Greenpoint)
I have long Covid. Recently I have felt better. But and its an important but, I worry its only because I have been resting more. I had bad muscle aches and pain. Now it is minimal. I had two shots and two boosters before I got Covid. I think I am one of the lucky ones.
Martin (Oakland, CA)
Thank God the police didn't arrest any of these protesters or treat them harshly. If they had, it could have been a death sentence to some of these brave protesters. I wish them luck in their endeavor to get more funding for medical research for what is very clearly a dreadful condition.
Elsa (Rockville, MD)
@Martin One thing I do give DC police a lot of credit for overall how they manage protests. You could say practice helps with the sheer number every year, but I have appreciated them both as a participant and as someone who has needed to navigate around the events. Btw I completely second your wishes for the protestors.
Patrick R (Idaho)
It sounded like they wanted to get arrested. Imagine the consequences to themselves. But also that those consequences may have made the protest hit national news.
HB (Tennessee)
Thank you for writing this. American medicine’s treatment of chronic fatigue/ME sufferers has ranged from cruel to negligent. Victims of this condition were gaslit and blamed and, as this article pointed out, given the exact wrong shaming advice: just try harder. That results in not just temporary, but possibly permanent setbacks. Women suffer from this at 2-4 times the rate of men, and doctors here have a history of minimizing or misunderstanding woman’s illnesses. Too often, they blame the women for their suffering, implying that they are “hysterical” or imagining things or choosing to pretend to be sick because of mental illness. You might think we just don’t have the science to treat this illness, but that’s partly because we’re not really trying. More funding is desperately needed. Since ME/CFS is thought to be a post-viral condition, there is hope that research on long Covid will help, and hope that with so many cases of long Covid, there will be research dollars. ME/CFS needs it’s own research, desperately, and soon. I don’t have ME/CFS, although at one point I thought I was headed there, and I have had other health problems poorly treated by our medicine. Western medicine owes these people an apology in the form of intensive efforts to provide relief. Until then, I hope their doctors, friends, and family will treat them with respect and compassion, remembering, “There but for the grace of God, go I.”
Zeynep Tufekci (NYC)
@HB Very well said. Treatment, cure, an apology and whatever we can do in the meantime to help improve the patients quality of life—the first two may be difficult and may take time and funds, but there's no reason we can start on the latter two, today.
Bob (Litchfield)
What percentage of the US population has to grapple with this disease? My wife Mary contracted Gullain-Barre syndrome when our country’s percentage for her illness was .001%. Initially my insurance company’s medical director denied its existence - in spite of her being hospitalized for four months after its onset. Only the threat of litigation changed his mind. Mary suffered from it for it for 25 years without any treatment enhancements from the medical world. This, too, requires attention.
Lynne (Somewhere)
@Bob yes, that needs research too, but let’s not go to the “suffering olympics” place. More research for ME/CFS, for Gullain-Barre, for other poorly understood illnesses is all needed. Both of these have auto-immune aspects, so research for one could potentially help the other. As for the percentage, millions have ME/CFS.
kerry Newnham (United Kingdom)
@Bob it’s estimated 1 in 240 people, although criteria for diagnosis have changed over time. It’s relatively common - twice the prevalence of multiple sclerosis with an average higher level of disability but receiving about 10% of its funding.
MK (New York, New York)
@Bob My guess is that it's way more common than people think. Like many illnesses it exists on a spectrum. For every person who can't get out of bed there are 50 who struggle through a normal life, can hold a job, but need to spend all their free time resting. Or people who settle on living minimal lives with part time work, or just have energy problems and unexplained symptoms. Most of these people are completely off the radar of the medical system and if they're diagnosed at all it's a self-diagnosis.
Carmel fruit farmer (ny)
When someone is suffering a physical malady, we will respond with either sympathy or irritation- the first requires effort when it combines with empathy and motivates us to actively help the sufferer. When given the opportunity of choosing one or the other because research fails to clearly establish causation of the malady, we often put the blame on the victim so we can move on with our lives without the burden of helping or the mental burden of sharing sorrow. This tendency also affects our response to alcoholics- if we blame fault of character instead of seeing it as a sickness we are not responsible to help. Where this tendency is most hidden and also widespread is in racial economic inequality- if we put most of the blame on the behavior of Blacks or Browns suffering from it, we are free from having to help or surrendering our priviledge in any meaningful way. You cannot understand politics without a fundamental understanding of psychology.
EP (Philadelphia)
"You cannot understand politics without a fundamental understanding of psychology." Part Two= "But if you have a fundamental understanding of psychology, and pay attention to politics, expect your heart to be broken on the daily by the evidence of despair all around us."
See also