Long-Haul Covid Cases Cast New Light on Chronic Fatigue Sufferers

Yves here. Although long-haul Covid is finally being seen as a bona fide disease outcome, the fact that it took time to be recognized, even for a novel pathogen (as in why weren’t clinicians more humble in light of their very limited experience) illustrates how the medical industry simply isn’t very interested in what they deem to be sub-clinical problems.

If you are past the acute phase of a disease, fatigue or brain fog or intermittent pains aren’t seen as health threats, even though they can make day-to-day functioning just as difficult as, say, not being able to use one leg. At least chronic fatigue syndrome is now recognized as a genuine ailment. So-called chronic Lyme disease is not, or at least not much.

By Kevin Cool. Originally published at Kaiser Health News

“Long hauler” Jennifer Minhas found that once her fever and cough subsided after she got covid-19 last March, new symptoms emerged: chest pain, elevated heart rate and fatigue. “I was kind of a zombie for months,” she says. (Jennifer Minhas)

Four weeks after San Diego pediatric nurse Jennifer Minhas fell ill with Covid-19 last March, her cough and fever had resolved, but new symptoms had emerged: chest pain, an elevated heart rate and crushing fatigue. Her primary care physician told her she was just anxious, and that none of her other Covid patients had those issues. “That wasn’t what I needed to hear,” Minhas said.

At times, she’s been too exhausted to hold up her head. “I was kind of a zombie for months, shuffling around unable to do much of anything.”

The clinical term for the flattening fatigue Minhas describes is “post-exertional malaise.” It is a common symptom among patients who have not recovered from Covid. It is also consistent with a standard feature of another chronic illness: myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.

ME/CFS patients also report cognitive impairment — “brain fog” — and orthostatic intolerance, in which standing upright produces a racing heart rate and lightheadedness. Minhas has experienced these symptoms, as have many other “long haulers,” the tens of thousands of post-Covid patients who haven’t recovered.

The percentage of Covid patients who become long haulers is hard to pin down — in part because many early Covid patients were not tested in time to detect the virus. But “long Covid” is potentially an enormous problem. A recent study of 1,733 Covid patients in Wuhan, China, found three-quarters of them still had symptoms six months after being released from the hospital.

As of January, doctors had documented more than 21 million cases of Covid in the United States. “If just 5 percent develop lingering symptoms,’’ — about 1 million cases — “and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years,” Harvard Medical School professor Dr. Anthony Komaroff wrote recently in the Harvard Health Letter.

The cause of ME/CFS is unknown, but multiple studies have found it follows acute infections with viruses — everything from the 1918 “Spanish” flu to Ebola. “A certain percentage of people don’t recover,” said Leonard Jason, a researcher at DePaulUniversity.

Scientists are trying to figure out the mechanisms of the disease and why it develops in certain people and not others. According to the Centers for Disease Control and Prevention, ME/CFS shares certain characteristics with autoimmune diseases, in which the immune system attacks healthy tissue in the body. Multiple studies are underway to explore this and other potential causes.

Doctors who specialize in treating ME/CFS are beginning to pivot to long-Covid patients. Dr. Peter Rowe, whose clinic at Johns Hopkins is one of the country’s leading centers for ME, has so far seen four long haulers at his practice. “All of them meet the criteria for ME/CFS,” he said.

Despite years of research, there is no biomarker for ME/CFS, so blood tests are ineffective as a diagnostic tool. Rowe’s approach is to tease apart which symptoms may have identifiable causes and treatments, and address those. One example: A 15-year-old boy Rowe was treating for ME/CFS was so sick that even sitting upright a few hours a day exhausted him and made schoolwork virtually impossible. The boy’s heart rate while lying down was 63; when he stood up it skyrocketed to 113. This effect is known as postural orthostatic tachycardia syndrome, or POTS.

Rowe knew from interviews with the boy’s mother that he had an extraordinary appetite for salt. So much so that he kept a shaker at his bedside and would regularly sprinkle salt on his hand and lick it off.

Rowe hypothesized that he was dealing with a sodium retention problem. To counter it, he prescribed the steroid fludrocortisone, which promotes sodium resorption in the kidneys. Three weeks later, the boy had recovered so dramatically he was helping a neighbor with a landscaping project, pushing rocks around in a wheelbarrow. “He was a different kid,” Rowe said.

Such a course of treatment would not be applicable in a typical case, Rowe said, “but it does emphasize the potential for patients to get a substantial improvement in their CFS symptoms if we address the orthostatic intolerance.”

Beginning in the 1980s, many doctors treating ME/CFS prescribed a combination of cognitive behavioral therapy and an exercise regimen based on a now discredited assertion that the illness had no biomedical origin. That approach proved ineffective — patients often got demonstrably worse after pushing beyond their physical limits. It also contributed to a belief within the medical establishment that ME/CFS was all in your head, a narrative that has largely been refuted.

“ME/CFS was never a mostly behavioral problem, although it has been cast as that,” Rowe said.

Answers have been slow to arrive, but attitudes about the illness are beginning to change. Advocates of patients point to a 2015 report by the Institute of Medicine that called ME/CFS “a serious, chronic, complex, systemic disease” and acknowledged that many doctors are poorly trained to identify and treat it. The CDC says as many as 90% of the estimated 1 million U.S. patients with ME/CFS may be undiagnosed or misdiagnosed.

The problem is exacerbated by a reluctance to provide health care coverage to patients whose illnesses aren’t easily diagnosed, said Joe Dumit, a medical anthropologist at the University of California-Davis. “Making patients prove they are not just suffering, but suffering from a documented illness, saves money. So, I worry about the way in which Covid long haulers will be treated as the numbers rise.” The best treatment in many cases may be rest or reduced workload, “which translates into some form of disability coverage,” he said.

But since long haulers typically sicken immediately after having had a testable viral infection, perhaps they won’t be disbelieved, Rowe said — after all, their illness “starts as a ‘real’ illness.’’

Long haulers may also help researchers better understand the onset of the illness because they are being studied as their symptoms emerge, while ME/CFS patients often aren’t seen until they’ve been ill for two or more years, he said.

“There’s no question that this legitimizes in many ways the experience of people with ME/CFS who have felt they weren’t believed,” DePaul’s Jason said.

In July, the nonprofit Solve ME/CFS launched an initiative aimed at understanding similarities between long haulers and patients with ME/CFS. Dubbed You+ME and underwritten by the National Institutes of Health, it includes an app that enables registrants to record their symptoms and their effects over time.

Such efforts may further diminish the tendency of doctors to ignore patients’ complaints of symptoms that seem to have no evident cause, said Lauren Nichols, 32, a long hauler with a long list of miseries — everything from severe gastrointestinal problems to shingles in her left eye.

“I was one of those people who falsely believed that if you can’t see the illness it’s psychosomatic,” said Nichols, who helps administer Body Politic, a support group for long-Covid patients that has found common cause with the ME/CFS community.

“Now I’m living it,” she said. “If I have one message for doctors, it’s ‘Believe your patients.’”

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  1. Halcyon

    I recall an episode more than a year ago where I was ridiculously tired for 8-9 weeks which was put down as a post-viral thing. I’ve recovered at least in part since, but we were certainly thinking that ME/CFS might be the problem. The GPs that I went to, (both of them), informed me that the condition didn’t exist…

    Stuart Murdoch of the band Belle and Sebastian has talked quite openly about his experience and that did make me feel better while I was in that place. But it is truly awful – not only being unwell and, at times, incapable of even getting to the end of a sentence – but also, just simply not believed at all.

    1. aleric

      Kathleen Hanna from the band Bikini Kill talks about suffering from unidentified chronic fatigue for 10 years in the documentary ‘The Punk Singer’. Its an excellent movie and portait of the early 90s music scene, in addition to being informative about her struggles with the medical establishment.

      1. Halcyon

        Aleric – Thanks very much. I love Bikini Kill as well, but I did not know at all about Kathleen’s struggles with CFS. I will have to make sure to watch that documentary.

        As for Belle + Sebastian, I think the song “Nobody’s Empire” is probably the most explicit he ever got in dealing with it in his lyrics… it’s a little cute, like most of their stuff, but certainly captures something of a sense of being unwell and making it through the other side. Which may indeed be very relatable for many of us right now: https://www.youtube.com/watch?v=Rgb8am3NQU0

  2. Terry Flynn

    Thanks for this. I post irregularly but some might remember I entertained (but discounted) the possibility I had covid-19 in late Feb/early March last year here in Nottingham, UK. What we knew then simply didn’t support it – the “weird” virus I and co-workers had was probably one of the four endemic coronaviruses or a weird “other” type virus. However, my symptoms were worryingly similar to those of covid-19 (including respiratory distress, almost causing me to call for an ambulance two nights running). Nevertheless I recovered and carried on. Subsequently we have learnt a LOT more about the UK timeline that both “fits” with our workplace virus and makes me wonder about the extreme auto-immune and serious fatigue symptoms I’ve had. The Guardian has set out the newest timeline but other similar articles go into detail. We know our “current UK patient zero” was a York student. He/she could well have (due to much cheaper fares avoiding LHR) entered the UK via Birmingham International (or even East Midlands Airport) from a Middle Eastern/West European hub connecting to China. My medical doctor friends were talking about strange pneumonia cases at the time I was ill and until the “revised” timeline with the York student was made known (leading to another guardian article from the past week I’ve lost already), the first fatality was, furthermore, thought to be one at my local big teaching hospital.

    I’m being treated for a suspected massive uptick in psoriasis on my scalp causing a patch of hair loss, and have experienced rheumatic type pain, worse IBS and a host of other exacerbations of what were previously merely “nuisance” auto-immune issues, together with extreme fatigue. Since I do a lot of caring for mum (who herself has experienced a nasty reaction to the AZ vaccine and is housebound at present) this is pretty debilitating. I’m on a fairly strong topical steroid from the GP but no “dots are being connected” – even hypothetically – and I hesitate to make a fuss since I’m disliked for self-diagnosing following my career in academic health services research. (Plus the fact the NHS messed up over my cardiac catheter ablation to correct SVTs in my heart decades ago). I too get orthostatic BP/pulse issues now and that might be why the GP is calling me in for IN PERSON (unusual), DOUBLE (unusual) appointment tomorrow so this article is very interesting.

    IIRC didn’t NC draw attention to a hypothesis that extreme auto-immune flare-ups might be caused by covid-19? Any medical doctors willing to comment on possible links between auto immune and CFS?

    1. Halcyon

      Certainly not a medical doctor but I know from my extensive research on ME/CFS back when I thought this was my problem that it is very often triggered by some autoimmune response of some kind – particularly to certain kinds of virus.

      More tentatively, some people certainly tried for a very long time to link the wave of cases of encephalitis that emerged around the same time as the Spanish Flu with that virus, although other viruses have also been suggested to be the cause; see https://en.wikipedia.org/wiki/Encephalitis_lethargica

      I personally have little doubt that COVID can trigger some strong autoimmune responses which are likely to produce effects that, if mild or temporary, are classed as post-viral fatigue and if more permanent or relapsing would be called ME/CFS. It’s just too much of a coincidence and since it seems so common with viruses it always seemed inevitable there would be such cases.

      1. Terry Flynn

        Many thanks. Nice to hear some validation, no matter the source, at this point since I’m regarded as too much of a troublemaker – I have “form” as we Brits say, in whistle blowing and my local hospital unilaterally got a GP trainee sacked for poor care of me (even though I learnt not to rock the boat and hadn’t said anything since it usually rebounds on you the whistle blower).

        Thus I’m reluctant to raise new hypotheses unless I have good data that go beyond my personal experiences.

    2. PlutoniumKun

      I’m really sorry to hear of your health problems, I hope that the medical profession will finally get serious about this once the immediate Covid workload dies down. Medics in my family say that they are well aware of many long Covid sufferers, including many who never had serious symptoms in the first place, but for now its all hands on deck for those who are seriously ill now – everyone else has to wait. I’m meeting a friend of mine on thursday who has suffered severe Long Covid since March, I know he is getting quite good care, I’ll pass on what he tells me about what his doctors are doing.

      I strongly suspect that it was Covid you had, there have been many anecdotal reports and some fairly sound research that suggests that it was floating around in various European countries quite early and there may have been localised clusters that burnt out naturally. A Polish neighbor who has an autistic son went back to Poland for family reasons in mid February last year and said that the hospitals were overwhelmed with children suffering from an ‘unknown’ flu. He kept his son at his mothers house without letting him out as soon as he found this out. The doctors at the time time told him that they were pretty sure it was Covid, but the official government line at the time was to deny this. A Chinese friend who has a (now closed) shop in Dublin Airport is quite convinced that she and her staff had Covid in late December, she had to close the shop as everyone had serious flu symptoms. Its impossible to prove of course.

      1. Terry Flynn

        Thank you. I’m furious at Royal Mail. I was part of the official NHS/Imperial prevalence study. However my test kit was tampered with before being delivered – you upload pics to the study website so I proved it. My mother saw the state the kit was in on arrival (not registered post or waterproofed etc).

        Of course I got an inconclusive antigen test (SOMEBODY had opened the test kit and allowed the rain in – it was delivered during the huge early autumn rainstorms)…..the Imperial person manning the phone couldn’t care less and so I got no replacement test despite filling in the online questionnaire strongly suggesting I’d had covid. This struck me as yet another example of crapification (as Yves would say) that never ever happened when I was involved with clinical studies.

        Interestingly I did the test and though inconclusive, there was a VERY faint suggestion I had the longer term antibody but not the shorter term one which, if true, would indicate I had had covid but early in the pandemic and had already lost the “short term” antibodies.

  3. Susan the other

    Well good. It’s time doctors had an awakening. “Believe Your Patients” because… they are the patient, and you are not. But how many doctors really believe that? About a year ago, just before we dumped him for being useless, irresponsible and fatuous, our then doctor told us (we are 75 with bonfide ailments) that it was all in our head and to get a better “attitude.” I kid you not. That little twerp.

    1. Bobby Gladd

      That is just terrible. My wife and I are now in the Kaiser Permanente system, and I have to say, our doctors are all very attentive. We count ourselves lucky.

      1. campbeln

        We’ve had generally good luck with Kaiser HEALTHCARE over many decades. Kaiser’s BILLING DEPARTMENT, on the other hand, costs us 40 hours every year to straighten out the same damned error.

    2. Basil Pesto

      I wonder if the doctors that grizzle about ~alternative medicine~ don’t drive their desperate patients to seek such solutions precisely because of their inattentive, careless manner, and what it would take for them to connect those particular dots.

  4. Bobby Gladd

    I was diagnosed with Parkinson’s about 14 months ago. When I hear these descriptions of “COVID-19 long haulers,“ sometimes I think “yeah, sounds like an ordinary day in my world.” (This past year has not helped matters.) So, I vicariously empathize and sympathize. Were I to take ill with Covid, I don’t like my odds. Ugh. Keeping a majorly low profile.

  5. ambrit

    Phyl laughed when I mentioned to her your quip about ‘Long Covid’ being like “missing a leg.”
    She has just got her prosthetic leg and is now engaged in daily exercise to strengthen the muscles needed to manipulate the device and re-learn her balance, plus a myriad of hitherto unforeseen factors. In that respect, the ‘experience’ of ‘Long Covid’ does seem to be an equally complex process. The reverse is that ‘Long Covid’ will be something that completely upends one’s life. The cascade of consequences will likely overwhelm the Dysfunctional American Medical System.
    I will go out yet again on the proverbial ‘rotten limb’ and predict that America will develop a system of Triage respecting the after effects of the Covid Pandemic. I am sorely tempted to begin calling this latest ‘Societal Misfortune’ the “Covid Pan-Endemic.”
    And this is just “early days” in the process!!!
    Stay safe, stay sane.

  6. Arizona Slim

    I’m here to tell you that when the problem is indeed psychosomatic, the medical profession isn’t of much help either. I’ve told my story here before, and suffice it to say that I am now pain-free.

    1. Ed

      Maybe it was for you, but please do not go around invalidating the experiences of others. If I had a nickel for every time someone told me “maybe it’s all in your head”…

      1. Jimmy Word

        And if it was just “all in your head,” would you know the difference? Serious question. Psychosomatic symptoms are not to be underestimated, whether they “invalidate” anyone’s experiences or not.

  7. marku52

    In other news, a friend just had her second Pfizer shot. Slight side effects from the first dose, second one sent her into 3 days of rage. Driving 130MPH on the freeway, aggressive behavior.. 3 days later, all gone.


  8. Aaron C

    Long Time Reader almost First Time Commenter here.

    I have had ME/CFS for more than 15 years now and I help moderate a telegram chat group with more than a hundred folks with ME from around the world. In other words it’s a small but relatively intimate community.

    There’s a lot I could say, but thankfully the Kaiser Health News article has hit the major points. But I’ll add this:

    1) As the article noted, COVID infections throw out a frighteningly large number of Long-COVID cases. It’s too early to know how many of these folks will recover (or at least mostly recover) but if it follows the pattern seen in post-infectious onset ME/CFS, many of these people will never recover–not with the tools currently at our disposal.

    2) ME/CFS (and one imagines Long-COVID) is one of the most miserable chronic illnesses one could have (here’s a small survey indicating just how poor–note that until the recent Long-COVID funding, any research into ME/CFS has been poor quality because politicians were not willing to pay for anything better [https://www.meaction.net/2015/08/01/me-patients-have-among-the-poorest-quality-of-life/]). HIV/AIDS is of course more horrible in the last two months or so, but ME/CFS patients often have a quality of life comparable to an AIDS patient with two months to live [http://wwcoco.com/cfids/yuppieflu.html]–it’s just that this state usually lasts until we die of more-or-less natural causes maybe slightly earlier than we otherwise would.

    3) Arguably the largest problem for ME/CFS patients–and now likely for Long-COVID patients–has been the lack of research. Happily, congress did approve a large chunk of money to fund Long-COVID research, but imagine if we’d been looking into ME/CFS with anything like a reasonable amount of interest since it was “discovered” in the early 80’s.

    4) ME/CFS patients–and one fears Long-COVID patients who did not get a positive COVID test–are still subject to forced hospitalization under the discredited-yet-still-popular assumption that the illness is psychosomatic and can be effectively treated with cognitive behavioral therapy. This happens all over the developed world including in the USA [https://www.meaction.net/2021/01/29/hospital-trying-to-commit-person-with-severe-me-to-mental-health-ward/?mc_cid=45dc707a61&mc_eid=fe1b4495e2]. It has at times led to an irreversible decline in the patients’ health which at least once led to a patient’s death [sophiaandme.org.uk].

    5) I do want to note that things may not be quite as bleak as Cool suggested. In the new Wuhan study the population is drawn from patients who were sick enough with COVID to be hospitalized. Again, assuming long-COVID follows the pattern set out with ME/CFS, the people who get the sickest from the initial infection will likely be the ones to develop ME (or in this case Long-COVID). So I, at least, wouldn’t look at the sickest 5-10% of patients and then extrapolate rates of Long-COVID for everyone else. However I do think that the 5-10% rate of long-COVID following infection does seem reasonable, and would be quite frightening. Here is a well-sourced twitter thread that provides at least some context: [https://threadreaderapp.com/thread/1238988538844033024.html]

    6) The barriers to medical care for those with ME/CFS and to some degree for many with Long-COVID are more than usual–not only do we face the usual cost-based barriers but there are also practical barriers (many people in my group cannot make it to a doctor’s office without risking permanent harm from overexertion, and even if we can make it to a doctor there is a very very limited number of doctors who specialize in ME/CFS, most of them will only treat you one particular way–whether that’s good for you or not–and chances are none of them take your insurance) and bias- or ignorance- based barriers (the vast majority of doctors believe we are just malingering).

    7) This is a bit speculative and biased–any take on treatment will be–but I want to mention two treatment option that seem quite promising to me: The first consists of going to live out in very specific places in the middle of nowhere (not just any “middle of nowhere” will do) in order to avoid a fungal toxin common to cities. The second is surgery (often more than one) to fix structural issues in the cervical spine.

    The point I want to make about these treatments, aside from the fact that for people who have been sick for a few years or longer they *seem* (research is nonexistent) to have a much better recovery rate than anything else I’ve heard of, is that they are both risky, difficult, and usually expensive. There is literally one doctor in the world that I know of who will do the surgery who is also covered by medicaid, and I know at least one person who was rejected as a candidate because he was too sick. Another woman in the UK crowdsourced one surgery only to be left even worse than before. She is now trying to crowdsource £750,000 so another surgeon can reverse it [https://www.gofundme.com/f/savejenny].

    1. GM

      1) As the article noted, COVID infections throw out a frighteningly large number of Long-COVID cases. It’s too early to know how many of these folks will recover (or at least mostly recover) but if it follows the pattern seen in post-infectious onset ME/CFS, many of these people will never recover–not with the tools currently at our disposal.

      For the survivors of the first SARS that is exactly what was observed — many never recovered even more than a decade later.

      It is wishful thinking to believe it will be otherwise with COVID — maybe a solution will be found, but the working assumption has to be that these people are disabled permanently.

    2. campbeln

      As someone affected by CIDP (a second cousin, twice removed-style auto-immune illness to ME/CFS with similar lack of research but thankfully an eventual 80% recovery rate) I can relate to point #3 and #6 :(

      We’ve been hoping CIDP gets some “afterglow” benefits thanks to the Long COVID research. Here’s hoping it’s even more directly beneficial to you and yours!

  9. GM

    It’s still baffling to me how people are treating this a new disease about which we know nothing.

    But this is in reality SARS-2 (don’t let the name COVID fool you into thinking it is something so dramatically different that it needs a completely different name) and in fact we had 16 years of data on the survivors from the first SARS prior to the appearance of the second.

    And I have not seen that much of a difference between the two in terms of clinical presentation. There do seem to be some differences in the immune response but overall it’s the same disease for all practical purposes, just milder on average.

    Yes, it was not a huge sample size with the first SARS — it was contained at less than 10,000 cases, 1,000 of them died, the rest were scattered across half a dozen countries — but it is not tiny either, and many of those people were tracked for quite some time after “recovery”, in Hong Kong, China and Toronto. The last point at which there was information on them was a decade later, circa 2013, and the still seriously damaged were something like 45% in Canada and 25% in Hong Kong (if I recall correctly; it might have been some of the Chinese cities rather than Hong Kong; but in any case, it was a healthcare cohort there while it was mostly regular people in Canada, so it probably skewed younger in Asia).

    If you have not recovered after 10 years, that is functionally equivalent to “never recovered”, and those were some frightening proportions.

    Most likely it is the lesson from SARS-1 that is the reason why China locked down the way it did and why it is going into wartime mode every time the virus is reintroduced and there is an outbreak — the dead are dead and buried, but the long COVID cases will be there for the rest of their lives.

    Yes, it will not be 25-50% of the infected, COVID is milder, but if the mortality from COVID is ~5 times lower than that for SARS-1, our best bet on the long COVID proportions is 5-10%, and that’s still an enormous number of people.

    Sending that much of the workforce of a country on permanent disability (which is what will happen if it is allowed to infect everyone) is absolutely catastrophic.

    Which is why it is still quite incredible that Western “leaders” took the decision to let it rip. I do not put it past the sick psychopaths that most of them are to have thought “Oh, the virus kills mostly old people, this is great — it will clear out 15% of the deadwood and help us relieve the pressure on the pension systems”, but surely some of their scientific advisors must have informed them about what happened with SARS-1 survivors, it is not as if that was some well kept secret….

  10. Ed

    I was so fatigued I could barely leave my recliner for weeks. I had to concentrate to remember how to wash a dish. After months I’m finally feeling like I’m recovering

  11. Jen

    I know 6 people now who have had COVID, none of them with severe cases. One, a 28 year old co-worker sailed through with only loss of smell and has had no lingering issues. The other 5, all in their late forties or older are experiencing after effects, even almost a year later. None severe enough to be debilitating, but whether it’s headaches, tightness in the chest, stabbing pains in their feet and calves…they all have something.

    I was talking to a guy in our local lumber yard last spring about COVID. He said he wasn’t worried – he’d already had it. Described the symptoms to a T, and was still, then in May, feeling a lot of fatigue. His wife was infected, naturally as well as some of his cowokers. When was he sick? December 2019. An this is in Vermont, 75 miles south of the Canadian border. Being adjacent to a famously “small liberal arts college,” there were certainly ample opportunities for the bug to hitch a ride to what is otherwise the middle of nowhere.

  12. Gregory Etchason

    Chronic Fatigue is a concern only if you can’t get to work and do your job. All conditions that cannot be turned into “profit” are orphaned. The US Healthcare System is driven to make money. The Practice of money disguised as “thoroughness”. Helping people is strictly a secondary matter.

  13. Patient patient

    Perhaps the attention to COVID will help Chronic Fatigue sufferers. I have lived in close proximity to someone with this condition for many years. The medical establishment has been criminally indifferent to CFS, which destroys the quality of people’s lives, and government has had little interest in researching it. If you have it, you’re mostly on your own, forced to do your own research, looking for remedies, at a time in your life where that is the last thing you want to do. “Just take a few days off,” in the words of one doctor. How about a few decades?

  14. Irrational

    Dear all,
    Just to note that fatigue can also be due to an under-functioning thyroid so make sure you get tested for your T3, T4, TSH and antibodies if your fatigue is not attributable to something more obvious and persists.
    I would personally welcome if there is more research done into autoimmune diseases, because the number of people (mostly women and including myself) with Hashimoto’s thyreoiditis seems to have exploded over the last few years – surely there is an environmental reason?

  15. Sue inSoCal

    Anyone who blows off chronic and/or severe fatigue, regardless of etiology, likely hasn’t experienced it. I have advanced MS and a few other fun autoimmune issues that I “manage,” for lack of a better term. I will attest that one of the worst aspects of all of this stuff is extreme fatigue. (Vertigo takes the cake.) I’ve tired (ha ha) of people saying “oh everyone gets tired.” No. This is bone crushing, can’t do anything exhaustion. I feel for people with CFS. I get it. Let’s learn all we can from this.

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