Friday, March 08, 2024

New ME/CFS Study by NIH - What Does It Mean?

I first heard about the newly published results of the first-ever NIH (National Institutes of Health in the U.S.) study of ME/CFS when a friend of mine forwarded an article from Medscape to me (I have some great friends). My first impression was, "Meh, not much new, and it was a tiny study," so I have been interested to see how much attention it is getting in the mainstream press and what ME/CFS top experts and advocacy groups are saying about it. Here's a brief summary:

Just the Facts

Bottom line of this study:

  • It was tiny - just 17 patients with ME/CFS. 17!! Out of the many millions suffering with the disease in the U.S.
  • But it was very comprehensive. Patients in the study underwent extensive testing in a variety of ways over the course of months, and analysis of the data was in-depth.
  • Much of what they concluded, we already knew: immune dysfunction is at the heart of ME/CFS, evidence of metabolic changes in people with ME/CFS.
  • They focused on its effects on the brain (stemming from the immune dysfunction).
  • The researchers definitely took the disease seriously, and the study paper--and all the resulting news coverage--reflects that.
  • Because of the tiny study size and the reasons why patients were excluded, we have to be careful about drawing sweeping conclusions about everyone with ME/CFS.
  • There were some very specific new findings (like specific measures of immune dysfunction) that can be further studied.

What Mainstream Media Is Saying

The good news is that it is getting a lot of attention in the mainstream media (which ME/CFS research rarely does), thanks in large part to the connection with long-COVID. 

Here's the NIH's press release (short and to the point), describing the results of the study. Clearly, plenty of news outlets picked up the story. And here's the full scientific study report, published in Nature Communications, a prestigious medical journal.

NPR did an excellent, short summary (you can read it at the link or listen to the story at the top of the page). They interviewed one woman who participated in the study, one of the study's authors from NIH, and four of our own experts: Nancy Klimas, Anthony Komaroff, Maureen Hanson, and Lucinda Bateman. They praised the study for its thoroughness, while noting some of its limitations. NPR was thorough as usual, and this quick update should help to educate the general public.

Science always does a great job of summarizing scientific studies for the general population, and their brief article on this study is good. I think they did a great job of summing it up right in the subtitle: Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome: "megaworkup"revealed brain and immune differences in a small patient group. Of course, they lose points for calling it chronic fatigue and a "mysterious syndrome."

It was also covered by the New York Times, Scientific American, and The Guardian. So, ME/CFS got a lot of news coverage from this report. 

What ME/CFS Experts and Advocacy Groups Are Saying

It's been very interesting to read the analyses of the study from various ME/CFS news outlets, advocacy groups, and patient organizations. 

#MEAction has an excellent, easy-to-read summary, with their analysis of the study's shortcomings and conclusions. Among their observations:

  • The study size was so small (17) because the NIH excluded anyone with "comorbid conditions." Well, guess what? Most of us (one earlier study said 80% but it is probably higher) could name a whole list of other diagnoses: POTS, MCAS, EDS, NMH, etc. One could argue (as I often do) that certain "comorbid conditions" are actually an integral part of ME/CFS, like dysautonomia/OI.
  • The rigorous requirements of the study (overnight hospital stays, exercise testing, etc. automatically excluded those with severe ME/CFS.
  • The study only wanted people in the first five years of illness. Since an earlier (excellent) ME/CFS study showed significant differences in immune markers for people sick less than three years and more than three years, this new study is mixing those together and ignoring those sick longer.
  • The study concluded that 4 of its 17 participants (24%) experienced spontaneous recovery! We all know that's not indicative of the whole population of people with ME/CFS. Earlier studies have put the recovery rate at about 5%. These strange results are probably due to the way they chose and excluded patients and their tiny sample size.
  • The study did require post-exertional malaise (PEM), i.e. exertion intolerance.
  • Most of the study's findings of immune and metabolic abnormalities have been reported in previous ME/CFS studies.
  • The study authors did find some interesting data suggesting "immune checkpoint inhibitors," which can be followed up in future research.

As always, Cort Johnson of Health Rising website provides an excellent, detailed yet easy-to-understand overview of the study and its findings. 

So, bottom line, it's great that ME/CFS got lots of attention in both scientific journals and mainstream media, and its connection to long-COVID was often highlighted. This study was a good start, but a very long overdue one. Its conclusions have limited use and relevance due to the very small patient sample participating and the reasons why patients were excluded. But, the study did have some findings that warrant follow-up. I'm just glad the NIH is finally, after so many decades, taking our disease seriously.

What are your thoughts on this new NIH study?

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