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.
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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.”
That’s a huge number of people in the US with ME/CFS if the estimate is correct. Out of interest, did the CDC release the figure obtained from the first of those two questions? As someone who has repeatedly been told that they probably have ME/CFS (when I don’t, but I’m close to people who do), I imagine it would be much higher than the 1.3% who answered that they still have it.
Talking of errors/anomalies, I understand that the JNNP journal has refused to correct a 2023 paper (-https://jnnp.bmj.com/content/94/10/855) that indicated that FND comes second in prevalence in neurology clinics, even though it appears that a co-author of that paper (together with other authors that included a current associate editor of the journal plus a current JNNP editorial board member) gave seemingly contradictory FND prevalence information in another 2023 paper on FND (-https://onlinelibrary.wiley.com/doi/10.1111/ene.15892) where the prevalence of FND is given as 5.4% rather than the 16% or so that would see it in second place.
And if and when there’s ever an inquiry into what went wrong regard to ME/CFS (and MUS and FND/functional illness) that caused so many patients to suffer, it should surely be relatively easy for that inquiry to draw up a list of people they can call upon to give evidence?
CT wrote:
“Talking of errors/anomalies, I understand that the JNNP journal has refused to correct a 2023 paper (-https://jnnp.bmj.com/content/94/10/855) that indicated that FND comes second in prevalence in neurology clinics, even though it appears that a co-author of that paper (together with other authors that included a current associate editor of the journal plus a current JNNP editorial board member) gave seemingly contradictory FND prevalence information in another 2023 paper on FND (-https://onlinelibrary.wiley.com/doi/10.1111/ene.15892) where the prevalence of FND is given as 5.4% rather than the 16% or so that would see it in second place.”
Wow, CT, that’s quite a metaphorical grenade you lobbed there.
I hope NICE is reading this!
Thanks Lady Shambles. If feminism stands for anything, I think it should stand for equality of women and men. That should not only mean workplace equality and equality in healthcare and other life situations but also that women are called out – reprimanded or prosecuted, (punished even) – for their errors and wrongdoings to the same degree as men. Not more than men, as seems to happen with some justice systems, or less than men, because they’re deemed less accountable for their actions by virtue of their supposed diminished capability; no, the same. When 46 or so women co-author a paper with a prevalence statement about FND that seems to contradicts what has been indicated in a different paper by one of their number, one of those papers clearly needs to be corrected. They can’t both be correct. That a female editor apparently won’t engage with that paradoxical situation is truly troubling to me – it lets the female side down, I think. Assuming that you ARE a lady, Lady Shambles, would you agree? (I’m happy for men to comment too!)
CT said: “Assuming that you ARE a lady, Lady Shambles, would you agree?”
The ‘ladylike’ quality is questionable, but I am definitely a member of the fairer sex. And yes, the ‘sisterhood’ means something to me. Fewer women commit crime when compared with men and that women are involved in this fiasco really angers me. As a woman I hold women to a high standard, as befits our fair sex, this definitely lets the female side down. Very badly done.
Lady Shambles commented:
“and that women are involved in this fiasco really angers me”.
It angers me too. As do women who make out that they’re feminists or pro-feminism but who refuse to communicate with other women who raise serious issues.
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.
From your article: “Previous estimates were significantly lower—from around one million to 2.5 million.” It is important to understand that these estimates were based on completely different parameters. I can’t begin to express how frustrating it is to see this kind of misinformation repeated in multiple articles.
As I report in my recent Substack article, the 1.3% estimate is in line with what we saw in 2014 & 2016 when the same questions were asked in various states.
From your article: “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.”
To reiterate, this narrative is not in line with the fact that the same questionnaire offered similar statistics in 2014 & 2016. The “previous” studies were those that were much more discriminating in the way they counted patient populations and indicated about .4% of the population had ME.
I think the reality is that those with ME are about .4% of the population. The CDC asked about CFS & ME… that’s a lot like doing a survey asking how many have chronic cough and how many have lung cancer and then lumping those two groups together.
See my article here for more details: https://colleensteckelmeiccinfo.substack.com/p/cdc-collects-data-on-me-and-cfs
Is this not the same issue – the broader the definition, the higher the prevalence, the more likely it is that a condition will get better funding for research and services? I suspect that’s what likely became too big a temptation for FND proponents who have cited high prevalence figures (16% or 30%) and a high prevalence status (second place prevalence) that no longer match their definition of FND. As I understand it, the requirement for psychological symptoms was removed from the FND definition (I believe at some of those proponents’ behest/instigation) and yet they’ve continued to cite a prevalence figure/status (16%/second place prevalence) that was based on patients having psychological symptoms and not them being positively identified via the so-called positive signs. That’s hugely problematic. It’s important that the ME community/advocates/serious ME researchers don’t fall into a similar trap by wanting to have their cake and eat it. A high ME/CFS prevalence rate may attract more funding but at what cost? That misdiagnosis rates are very high and research cohorts so broad and woolly that there’s little chance of the mechanism of ME ever being discovered or effective treatments found? As I commented above, I’d like to know the answer to the first of the two questions to get an idea of the number who had been previously been told by doctors that they had ME/CFS. I’m not suggesting that the difference between the answers to the two questions would all be ME/CFS misdiagnoses rather than people who’ve recovered from the condition, but I’d wager that a significant proportion would be because it does seem to have become a waste bin diagnosis for patients with unexplained symptoms who have accompanying or overriding fatigue (just as ‘FND’ appears to serve as a waste bin diagnosis for patients with unexplained symptoms that appear neurological).
(I’ve just noticed David’s update at the top of his blog).
The article’s relevance to contemporary societal issues makes it a must-read.