Large Long COVID study and major media articles underscore link to ME/CFS – plus countdown for the NIH, by Cort Johnson in Health Rising, 22 Jan 2021
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
The latest Body Politic study indicates that long COVID looks much like ME/CFS.
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The preprint (meaning it has not been peer-reviewed) study from Body Politic researchers and patients assessed a wide variety of symptoms only to have the top three symptoms associated with ME/CFS pop out.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.
- 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.