By David Tuller, DrPH
Update: In the comments, Colleen Steckel has highlighted her concerns about the CDC prevalence data, writing: “There is some basic misinformation in the CDC survey reporting. The results need to be put into historical perspective. Repeating narratives, based on inaccurate information, are not helping people with ME get recognized.” You can read her critique in detail on her blog.
In July, the Journal of Neurology, Neurosurgery and Psychiatry published a “whine de coeur” called “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.” The lead author was Professor Peter White, lead author of the discredited and arguably fraudulent PACE trial; he was joined by 50 colleagues, including his two PACE co-lead investigators, Professor Michael Sharpe and Professor Trudie Chalder. These NICE critics outlined eight “anomalies” in the development of its 2021 ME/CFS guideline. (The issues described as “anomalies” were downgraded from “errors,” as they were called in a previous version of the article that had found its way online.)
The eight concerns raised–whether called “anomalies” or “errors”–were easily rebutted. But rapid responses from patient advocates or blogs from observers like me are not the same as a robust response from the prime target of this pathetic, poorly reasoned attack—NICE itself.
While it was known that NICE had submitted a response, details have generally been lacking. I recently learned that NICE submitted a response on October 1st, which was peer-reviewed; NICE submitted a revision on November 9th. After a second round of peer review, NICE’s response was sent to the “editorial committee” on December 7th for a final decision. That decision is still being awaited—or at least no decision is noted on the manuscript timeline in the JNNP editorial portal.
What is holding things up? Hard to say. Assuming the revised NICE response has been accepted by the editors, or has been accepted pending some final minor tweaking, perhaps the journal is planning to wait and publish NICE’s response with a counter-response from the 50+ co-signatories of the anomalies paper. That is my best guess—but I really have no idea. The delay is frustrating, but it seems like we’ll just have to wait and see.
Given the circumstances, it would be reasonable for NICE to avail itself of a pre-print server and post its response there, pending the hoped-for publication in JNNP. In this case, the need to counter harmful propaganda from White et al should outweigh editorial sensitivities and concerns about disseminating the text of a paper before it has been formally accepted for publication. In the end, I assume it will be published and I assume it will be appropriately robust in pointing out the misguided arguments articulated by those on the losing side of this shift in approach.
It has always seemed a bit odd that this piece was not published in a general medical journal, such as The Lancet or The BMJ. Both have been big supporters of the psycho-behavioral treatment approach to ME/CFS over the years. Perhaps they were approached but were uninterested, for whatever reason. (JNNP is in one of the specialist journals under the BMJ publishing umbrella.)
JNNP is, in one sense, an obvious choice—Professor Alan Carson, an associate editor of the journal, and Professor Jon Stone, an editorial board member, are both co-signatories of the article. These two are also leaders of the movement to promote the diagnostic category of functional neurological disorder; at least a dozen of the other co-signatories are also FND experts. As I have reported, these neurologists have spent years mis-citing a key study in their field of expertise while tripling the reported prevalence rates. They have as little credibility as the PACE authors to be lecturing anyone else about proper methodology in scientific research.
CDC’s higher prevalence estimate for ME/CFS
Last month, the CDC released new estimates for the number of people in the US with ME/CFS. The figure—3.3 million, or 1.3% percent—raised eyebrows and made headlines. Previous estimates were significantly lower—from around one million to 2.5 million.
The findings are based on responses to two survey questions from 57,000 adults in a national sample during 2021 and 2022. The two questions: “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” and “Do you still have Chronic Fatigue Syndrome (CFS) or ME?” Of the respondents in the sample, 1.3% said yes to both questions.
“Chronic fatigue syndrome is not rare, says new CDC survey,” declared the headline on the Associated Press story about the report. The story made the obvious potential link between the higher rates and the consequences of the coronavirus pandemic, noting that the number of estimated ME/CFS patients “is larger than previous studies have suggested, and is likely boosted by some of the patients with long Covid.”
Previous studies have suggested that most people with ME/CFS have not been diagnosed. Because a positive response in the survey is based on someone having received an official diagnosis, it is possible that the findings might be undercounting the prevalence of ME/CFS. It is also not clear from the report whether respondents were diagnosed using narrower or broader definitions of the illness, which would lead, respectively, to decreased or increased prevalence estimates.
Other key findings from the CDC survey:
“The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.”
“Women (1.7%) were more likely than men (0.9%) to have ME/CFS.”
“White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.”