DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts

By David Tuller, DrPH

DecodeME paper finds ME/CFS severity linked to being female, being older and being sick longer

DecodeME is a high-profile genome-wide association study (GWAS) that is seeking to identify DNA differences between people with ME/CFS and those without it. To date, more than 17,000 people in the UK who report having been diagnosed with ME/CFS have submitted questionnaires; many have subsequently been asked for DNA samples. In a new paper posted at NIHR Open Research, the DecodeME team, which includes patients as well as academic investigators, has described characteristics of the study sample based on these questionnaires. (The project continues to seek participants.)

An initial draft of the paper was actually posted as a pre-print on NIHR Open Research earlier this year. (The site hosts research from Britain’s National Institute for Health and Care Research, which is a funder of the DecodeME project.) The investigators did not promote the findings, however, until two experts had peer-reviewed the paper and approved the final version. That process concluded this week.

The paper is called “Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.” Here are the “results” and “conclusions” sections of the abstract:

Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity.  Five different ME/CFS onset types were examined in the self-reported data: those with ME/CFS onset (i) after glandular fever (infectious mononucleosis); (ii) after COVID-19 infection; (iii) after other infections; (iv) without an infection at onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia.
Conclusions: DecodeME participants differ in symptoms, comorbid conditions and/or illness severity when stratified by their sex-at-birth and/or infection around the time of ME/CFS onset.”

The findings received widespread and respectful attention in the UK media, including in The Guardian, Sky News, and The Independent.

Ed Yong on fatigue and post-exertional malaise

I’m a bit late on this, but Ed Yong wrote another great piece in The Atlantic—his final one, I gather, as a staff writer for the magazine. This one, published in late July, focused on the phenomenon of post-exertional malaise—something that everyone in the ME world knows about but that is pretty much a blank for everyone else, including many physicians and other clinicians.

Ed provides an up-to-date account of the thinking and science regarding PEM, in the process distinguishing it from what most of us think of as “fatigue.” He also describes what the experience is like for patients. For those immersed in these realities, it can be hard to remember that most people know nothing about PEM and have likely never heard of it.

Here’s a key passage:

“Post-exertional malaise, or PEM, is the defining trait of ME/CFS and a common feature of long COVID. It is often portrayed as an extreme form of fatigue, but it is more correctly understood as a physiological state in which all existing symptoms burn more fiercely and new ones ignite. Beyond fatigue, people who get PEM might also feel intense radiant pain, an inflammatory burning feeling, or gastrointestinal and cognitive problems.”

And another (there are lots of them): “Where fatigue usually sets in right after exertion, PEM might strike hours or days later, and with disproportionate ferocity. Even gentle physical or mental effort might lay people out for days, weeks, months. Visiting a doctor can precipitate a crash, and so can filling out applications for disability benefits—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility.”

The Atlantic also ran an interview with Yong about the piece.


STAT busts NIH for failures on long Covid

Two years ago, the US National Institutes of Health made headlines when it committed $1.15 billion for research into long Covid, called RECOVER. The department has been under pressure to show some results. In a sharp look at the situation for STAT earlier this month, Betsy Ladyzhets reported, as stated directly in the headline, “NIH trials fail to test meaningful long Covid treatments.”

The opening pretty much says it all: “More than 2.5 years after the National Institutes of Health received a $1 billion mandate from Congress to study and treat long Covid, the agency has finally launched clinical trials for the often-debilitating condition. But both scientists who study long Covid and patients who have struggled with it say the trials are unlikely to deliver meaningful treatments, suggesting the federal government’s landmark Covid research effort may have been wasted.”

Most of the RECOVER funding has gone to observational studies, and only around 15% to treatment trials. Now that those have been launched, there is widespread dissatisfaction at their limited reach and scope, with only a handful of drugs and behavioral treatments among the interventions. According to the article:

“One reason for the lack of promising treatments among RECOVER’s trials is the initiative’s overall failure to learn from past research in other chronic diseases that share symptoms with long Covid, said Todd Davenport, a professor and rehabilitation expert at University of the Pacific. Davenport has studied myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition that is now a common diagnosis for long Covid patients.

“Scientists on the RECOVER team ‘have parachuted into post-infectious illness and are now trying these things for the first time, to them,’ Davenport said. ‘But it’s clear they haven’t done the reading.’

“Davenport and other scientists outside of RECOVER have long lists of drugs that they’d like to test, most of which are not included in the NIH study.”


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