ME/CFS scores as a large study cements the link between it and long COVID just after over a billion dollars is slated to go for long COVID research
“The findings show that—even in those people who don’t require hospitalization for severe COVID-19—the condition’s prolonged symptoms are having a major impact on lives and livelihoods, both here and around the world. While the number of people affected isn’t yet known, if even a small proportion of the vast numbers of people infected with COVID-19 develop Long COVID syndrome, it represents a significant public health concern.” Francis Collins Director of the NIH
A important long COVID study, “Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact“, was recently released which left no doubt that long COVID patients are closely tracking with people with chronic fatigue syndrome (ME/CFS) symptom-wise. For once, the ME/CFS community was the beneficiary of superb timing: the study arrived not long after Congress had appropriated over a billion dollars to study long COVID.
The preprint (meaning it has not been peer-reviewed) study from Body Politic researchers and patients assessed a wide variety of symptoms only to have the top three symptoms associated with ME/CFS pop out. Just as in ME/CFS, fatigue (77.7%), post-exertional malaise (PEM) (72.2%) and cognitive dysfunction (55.4%) were the most common symptoms found in those still sick after six months. The researchers didn’t target these symptoms. Out of the 205 symptoms they asked about, these rose – like the cream in milk – to the top all by themselves. The symptoms slowly increased over time and tended to plateau about 2 months in.
The large study size – almost 4,000 respondents took part in the web-based study – added to the study’s cachet. While future studies will undoubtedly utilize long COVID patients diagnosed by doctors, this was a great start.
Post-exertional malaise rose to the fore. The fact that over 85% of long COVID patients reported experiencing a relapse mostly due to engaging in too much exercise, physical or mental activity, or stress, placed many of them firmly in the ME/CFS camp. (Note that the term post-exertional malaise (PEM) – which quickly found its way into the long COVID camp – was birthed in the ME/CFS community.)
Sixty-five percent reported still being ill six months after being infected. Only 27 percent had returned to their normal work schedules, 46% were working part-time and 23% were not working at all. The 23% unable to work bore some resemblance to the 25% of ME/CFS patients reported to be severely ill.
The most likely symptoms to persist after six months demonstrated that – as with ME/CFS – a body-wide illness had emerged which provided few avenues for relief:
The most likely symptoms to persist after 6 months: fatigue, post-exertional malaise, cognitive dysfunction (“brain fog”), neurologic sensations (neuralgias, weakness, coldness, electric shock sensations, facial paralysis/pressure/numbness), headaches, memory issues, insomnia, muscle aches, palpitations, shortness of breath, dizziness/balance issues, and speech and language issues.
The cognitive symptoms seemed like a textbook example of ME/CFS, although one wonders if they were perhaps a bit muted. Many (46.3%) reported having difficulty finding words while speaking or writing (but only 29% reported they had difficulty communicating verbally (?)). The 25% who had difficulty reading/processing written text, and the 23.8% who had difficulty processing/understanding others, seemed low compared to ME/CFS.
It was striking to see so many of the “weird” symptoms seen in ME/CFS show up in the long COVID patients. Numbness, coldness in a body part, tingling/pins and needles, “electric zap,” facial paralysis, facial pressure/numbness, and/or weakness were experienced by 80.5%. Skin sensations (burning, itching, or tingling without a rash – perhaps produced by small nerve fiber problems), as well as tremors and sensitivity to noise and light, were also commonly found.
Cardiovascular symptoms suggestive of POTS (tachycardia, high heart rate while standing) and other cardiovascular symptoms (palpitations) showed up in spades (40-50%).
Almost 80% of patients experienced difficulty with sleep despite the researchers apparently not including the most common sleep issue in ME/CFS – unrefreshing sleep – in the survey.
Even the emotional symptoms tracked. For years, ME/CFS researchers focused on depression, but Dr. Baraniuk proposed that anxiety has always been the most common mood issue – and so it was with the long COVID patients. (Anxiety – 57.9%; irritability – 51.0%; depression – 47.3%; emotional lability (mood swings, difficulty controlling emotions) 46.3%; apathy – 39.2%).
The researchers apparently missed the boat on surveying IBS (irritable bowel syndrome)-like gut symptoms like bloating, and gut pain. Still, diarrhea, nausea and loss of appetite were common.
The major differences between ME/CFS and long COVID showed up in symptoms produced specifically by the virus (fever, loss of taste/smell, shortness of breath – 38% after 6 months), many of which showed up in the early acute phase and then diminished. In contrast to the reduced temperature reported by some people with ME/CFS, elevated temperature was quite common.
A recent article, “My ‘Long Covid’ Nightmare: Still Sick After 6 Months,” from a New York Times reporter demonstrated just how weird and variable the long-COVID path can be. The reporter was in excellent physical shape with no pre-existing illnesses. Nine days into her COVID-19 ordeal her fever shot up and she felt like she was unable to breathe. Three months later – long after having apparently vanquished the virus – she was still nauseous, exhausted and feverish.
Next, she experienced a stabbing pain under her left breast and a fever. Then her hair started falling out. Then she got zapped…
“An electric current — or what felt like one — traveled from the left side of my chest, skipped up my neck and stopped at a spot on the right side of my skull.”
Next, she experienced such crushing chest pain that she was afraid she was going to die:
“A shawl of heat gathered around my shoulders, crept up my neck and swallowed my head. I began to sweat. It felt as if the air was being squeezed out of my lungs. Breathe, I told myself. BREATHE. I stood up, gasping, and walked to the window to look outside.”
Tests, ironically, showed that her levels of inflammation had come down – not up. About six months into her illness her fatigue was at an all time high time. Since then she’s gotten better and hopes she’s on the road to recovery. Her story shows, though, how complex long COVID – like ME/CFS is. At one point she said she couldn’t predict which part of her body would go haywire next.
Long COVID, like ME/CFS, can clearly produce a set of nasty, body-wide symptoms. Whatever explains long COVID and ME/CFS will have to account for multiple symptoms that involve so many systems and, at times, pop up differently in different times in different patients. Back in “the day” (the bad day), the sheer breadth of symptoms associated with chronic fatigue syndrome (ME/CFS) was used to relegate it to a psychological disorder. That interpretation seems to be fading.
Thankfully, the Body Politic researchers quickly identified ME/CFS and dysautonomia as the most likely diagnoses. Surprisingly, almost 50% more long COVID patients had received a diagnosis of POTS (postural orthostatic tachycardia syndrome) than chronic fatigue syndrome (ME/CFS). Only 111 of the many long COVID patients in the survey – who surely could have met the ME/CFS criteria – had been diagnosed with it.
- Not long after Congress provides a billion dollars plus for long-COVID research, a large web-based preprint study from the Body Politic finds striking connections between the symptoms found in long-COVID patients and people with ME/CFS.
- The top three symptoms in long COVID (fatigue, post-exertional malaise and cognitive problems) are emblematic of those found in ME/CFS.
- The vast majority of long-COVID patients reported experiencing an exertion-triggered relapse.
- Over 20 percent were still unable to work after six months and almost 50% were working part-time. Only about 25% were still working full-time.
- Long-COVID patients also commonly reported problems with sleep, cardiovascular and gut problems and a wide range of strange symptoms that many people with ME/CFS will relate to.
- The study also uncovered a significant cohort of patients distinguished by high levels of fatigue and no post-exertional malaise.
- A recent long and in-depth feature New York Times article uses ME/CFS experts to underscore the connection between ME/CFS and long COVID.
- The NIH’s failure to develop programs to support long-COVID research smacks of its approach to ME/CFS over the years.
- Despite acknowledging the immense nature of the long-COVID problem, and knowing that long-COVID money was coming its way, the NIH has not, almost a month later, provided a plan for spending the money.
- Meanwhile, as the vaccines roll out, the opportunity to the catch long COVID in the act is beginning to diminish.
New Cohorts Likely to Show up
One fascinating group that showed up consists of a large cohort (n=707) of long COVID patients experiencing high levels of fatigue six months after becoming ill – but no post-exertional malaise. One wonders if a similar cohort has been present pre-COVID outside of ME/CFS.
This finding perhaps highlights the unforeseen benefits that the huge long-COVID studies that are expected to appear will provide. Size matters in research. The larger the study, the better it can peer into the nooks and crannies of the disease. Everyone seems to believe multiple subsets exist in ME/CFS, yet we generally lack the large studies needed to ferret them out. We should get huge long-COVID studies, though (hopefully with ME/CFS control groups), and the subsets that show up there should help.
The authors also suggested that some of the symptoms found (anaphylaxis and new allergies, changes in sensitivity to medication) may relate to mast cell activation syndrome (MCAS).
The ME/CFS – Long-Covid Connection Hits Major Media
“In other words, long Covid may simply be the latest example of a post-infectious phenomenon that has mystified physicians for more than a century.” NYTimes
The Body Politic study may have sparked a belated recognition that “long hauling” after an infection is not a new thing at all. The New York Times has not really been up on the ME/CFS – long-COVID connection (go to Ed Yong and the Atlantic for that), but a article from Moises Velasquez-Manoff, “What If You Never Get Better From Covid-19?“, makes up for a lot of inattention from the “gray lady”. It’s a “feature article”; i.e. a very long, in-depth article that the Times put a lot of work into. (The audio version takes almost an hour to listen to.)
It provides a nice introduction to findings which may already be providing clues for both disorders, such as the “blanket bombing” approach an overwhelmed immune system may be mounting (Avindra Nath), as wells as cytokine storms and autoantibody blitzkriegs. It includes numerous ME/CFS experts (Komaroff, Hanson, Klimas, Younger, Scheibenbogen, Proal), provides an overview of ME/CFS findings, and even gets into the outbreaks. Mast cell activation syndrome, peripheral neuropathy, neuroinflammation are mentioned. Moises Velasquez-Manoff knows his stuff. I was amazed to see him focus on a King’s College study suggesting that immune activation was the key.
It also demonstrates that word has gotten around how nasty this disease is. Short of something that’s going to kill you, like cancer, it’s probably way up the list of diseases one would really not want to have. Dayna McCarthy, a rehabilitation specialist, counsels her patients to keep their heads down and stay away from ME/CFS on social media – it’s too disillusioning.
“Chronic fatigue syndrome is a syndrome that does not get better. From a psychological perspective, that’s just devastating.” She counsels her patients not to read too much about ME/CFS on social media.”
Some things haven’t changed. I employed the same strategy back in the late 80s and early 90s. I just didn’t want to go there.
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The same day, the Guardian posted a blistering editorial, “We’re about to see a wave of long Covid. When will ministers take it seriously?”, that whacked the British medical establishment for its decades-long downplaying of ME/CFS patients as malingerers and psychological misfits. Plus, it pointed out that the same pattern of underfunded research found in the U.S. applies in the U.K.
Countdown for the National Institutes of Health (NIH)
What to say about the greatest and most important medical research funder in the world – the NIH? While the ME/CFS and FM communities are well aware of the NIH’s shortcomings, the pandemic has laid them bare. A year after the pandemic showed up in the U.S. – a year after it was pretty clear to anyone with an infectious disease background that a pandemic was coming – the NIH has still done nothing substantive to address the million or so long-COVID patients who are waking up to an uncertain and frightful world.
I understand the argument that early on the NIH was throwing everything at the virus in order to keep people from dying, but it’s now been a year. I refuse to believe that the NIH can’t walk and chew gum at the same time and didn’t have resources to come out with an organized approach to assist the long haulers.
Now they have the opportunity to do that. Late last year, President Trump signed into law a bill which gave the NIH over a billion dollars to study long-COVID patients. (Note how, once again, it took Congress to make something happen at the NIH.) This money was not suddenly sprung on the NIH. It was consulted on the stimulus package throughout, presumably knew help was coming, and had ample time to create a plan on how to put it to use. Almost a month later, though, mum’s the word.
Unfortunately, time is of the essence. The U.S. has been very helpful in producing oodles of COVID-19 patients for study, but the vaccines are coming and that means that the NIH doesn’t have the option of business as usual – not if they’re serious about long COVID. It seems likely that COVID-19 does something early in the disease – perhaps in the first week or so – to produce long COVID.
The opportunity to catch long COVID in the act, though, is fast diminishing. If enough people get vaccinated, the outbreak could be muzzled in the next five or six months – far too short of a time for the NIH if sticks to a business as usual approach.
If the Stimulus bill had been passed in July as expected, things would be different but it’s January. Money doesn’t get turned into research studies overnight. Researchers have to apply, get reviewed and get funded – a process which often takes a year. It’s time for the NIH to take a Shark Tank-like approach that will get detailed data on people becoming ill now.
We’ll see what Francis Collins does. Collins, has, to be sure, drawn attention to the long haulers and the work the Body Politic is doing in two Director’s blogs. He’s thankfully made it clear that long-COVID patients present a serious and large problem that the medical system is ill equipped to face.
When Collins didn’t mention ME/CFS in his latest blog, however, he missed an opportunity to link the real long haulers – the ME/CFS patients – with long COVID. Given the distress the ME/CFS community has suffered waiting for the NIH to show up, that was a shame. The lapse was doubly upsetting given the role the Solve ME/CFS Initiative played in getting Collins the long-COVID funding he now has.
Five years ago, Collins promised that the NIH had turned a new leaf with ME/CFS, and said if you don’t believe me, “watch us”. The NIH did create three ME/CFS research centers, increased funding significantly, and started Nath’s intramural study, which has turned out to be an unanticipated boon. Collins, however, only returned funding to slightly higher levels than it had been some years earlier, and said several years ago that no new funding was forthcoming.
The new leaf Collins turned over was a small one, indeed (the size of pine needle?) which never produced anything near the resources a disease as devastating and prevalent as ME/CFS deserves.
Now Collins has a ton of money (over a billion dollars) to use on a condition which, except for its short duration, looks very much like ME/CFS and other post-infectious diseases. It would be a shame for the NIH to concentrate solely on long COVID when other post-infectious disease groups exist, need help and can provide answers for the post-infectious disease conundrum. The really long haulers (ME/CFS patients) provide the opportunity to study what long-term, chronic post-infectious diseases look like. About a million people with ME/CFS in the U.S., after all, aren’t exactly chump change. They may be as big, or bigger, a cohort than the long-COVID patients. They’ve been waiting for a long time.
Lyme disease, fibromyalgia and POTS patients (with an infectious onset) present more opportunities. A failure to include these groups in long-COVID studies would be tragic.
Let’s not forget, either, the responsibility the NIH bears for the present situation. Time and time again, it’s turned away from funding post-infectious ME/CFS research – research that could have left the medical community prepared for the long-COVID patients. A million or so long haulers in the U.S. are now reaping the consequences of the decades of neglect visited upon ME/CFS.
It’s time for the NIH to attempt to make up for that and fully fund this disease. No one can say that the money isn’t there or that the condition isn’t relevant to the present situation. If a million long-COVID patients deserve funding, so do – and more so – the million really long-hauler patients who have been waiting so long.
Collins has the opportunity to redress the wrongs of the past and promote healing in the ME/CFS community. He missed a small chance to do that in his Director’s blogs, but bigger opportunities lie ahead.