This thread has a Science for ME 'News in Brief' post for each week in July 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

By David Tuller, DrPH For decades, Kumar & Clark’s Clinical Medicine has been a standard textbook for medical education around the world. Last month, Elsevier pubished the 11th edition. The miniscule section on what it calls “chronic fatigue syndrome/myalgic encephalopathy” is pathetic. This section is in a chapter called “General Hospital Psychiatry,” promotes “psychological symptoms” as a core component of the illness, and recommends the fraudulent PACE trial as “further reading.” (The authors offer no explanation for their decision to use “encephalopathy” rather than the much more widely accepted term “encephalomyelitis.”) Patient advocates have had concerns about this matter for a while. A petition “to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook,” based on the 10th edition**,****was** posted on change.org more than a year ago. It has racked up more than 10,000 signers. (An article on the ME Association website provides more details.) Elsevier responded last February**,** noting that “the book’s editors are aware of the petition, and of the strength of feeling held by many ME/CFS patients and their friends and family members about the way the condition has traditionally been approached within the medical profession.” In its response, Elsevier further noted that, for the upcoming version, “the editors have worked with the specialist chapter authors to produce content which addresses the concerns of patient groups, whilst being based on the range of published literature and contemporary treatment approaches within the field.” Yeah, right. The 11th edition does feature some modest changes corresponding to some of the requested changes. It now includes a mention of “ME”–albeit the wrong ME. It drops graded exercise therapy (GET) as a recommendation—yet it highlights the PACE trial as a reliable source of information, even though that piece of crap purported to prove that GET was effective. Etc. In the new edition, the discussion of CFS/ME appears in a section of the General Hospital Psychiatry chapter headed “Medically Unexplained Symptoms and Functional Neurological Disorder.” In the text, these two groups are lumped together as MUS/FND, with general observations intended to apply to any clinical entity falling within the parameters of these categories. (In reality, FND is a subset of MUS.) One paragraph is focused solely on CFS/ME, identified as one of several kinds of MUS. Here it is: “Although several studies have demonstrated abnormalities in endocrine, neurological, and immunological parameters in patients with CFS, understanding of potential biological mechanisms underlying the condition remains poor. Historical approaches that have suggested that the disorder is ‘all in the mind’ are unhelpful and stigmatizing, and prevent the development of a beneficial therapeutic relationship between doctors and patients. A more helpful approach acknowledges the presence of both physical and psychological symptoms, with no assumptions about the underlying aetiology.” This paragraph is full of misrepresentations. There are obviously far more than “several” studies demonstrating “abnormalities” in multiple domains. (What these studies ultimately mean is another discussion.) As far as “historical approaches,” it is ironic that the textbook suggests the “all in the mind” approach is a relic of the past even as it touts the PACE trial and embeds the illness within the chapter on “general hospital psychiatry.” Finally, it would be nice if “no assumptions” were made about the underlying etiology. But that is obviously not what has happened with this illness. The presumption of the biopsychosocial fantatics has always been that CFS, as they call it, was solely caused by unhelpful illness beliefs, which led to sedentary behavior, which led to deconditioning, and on and on. The two interventions—graded exercise therapy and cognitive behavior therapy—were presented as addressing these concerns and therefore potentially curative. Whatever has been claimed more recently, the only role in this schema for “bio” was the notion that a viral infection could trigger the entire cycle. Beyond that initial event, the perpetuation of symptoms was said to arise solely from problematic and dysfunctional patterns of thought and behavior. In any event, no one reasonably disputes, or has ever reasonably disputed, that patients experience “psychological symptoms.” I mean, why wouldn’t they feel depressed and distressed and anxious, given that they have a complex illness that no one seems to understand? The issue is not whether they experience such symptoms but whether psychological and associated behavioral factors are the root cause of their illness. This paragraph reads as if that debate were non-existent. The subsequent sections are headlined “clinical approach to MUS/FND,” “communication of a diagnosis of MUS/FND,” and “approaches to treatment.” Not surprisingly, given the bias inherent in this chapter, there is no mention of the updated 2021 guidelines for ME/CFS from the National Institute for Health and Care Excellence, which rescinded recommendations for GET as well as for cognitive behavior therapy presented as anything other than supportive. Instead, these paragraphs in the textbook are full of biopsychosocial blah blah, like this: “Delivering and explaining a positive diagnosis of MUS/FND is the stepping stone towards a successful management plan that may include guided self-help, CBT and input by several other members of a multidisciplinary team (e.g. physiotherapy or speech and language therapy, depending on the nature of the FND symptoms). Recovery depends on positive patient engagement with the process.” The last sentence is classic in how it appears to lay the blame squarely on patients for failure to attain “recovery.” In this framing, if the treatment doesn’t work, the fault is clearly due to the patient’s “negative” engagement rather than to an inappropriate clinical approach. I hope the petition to Elsevier gets a reboot based on this awful update. ********** *As a side-note, the MUS/FND section claims that FND accounts for half of new neurology consultants. This is a ridiculous and untrue claim. The most ardent FND experts have regularly stated that 16% of new neurology consultations involve FND. And that figure itself was an exaggeration. The study used as the source actually found that 5.5% of new outpatient neurology patients were diagnosed with conversion disorder symptoms–i.e. FND, per later nomenclature–as several colleagues and I have pointed out in a published letter. I know of no subsequent research that has found a 50% rate among new neurology consultations.

This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

By David Tuller, DrPH It began on May 30th with television, radio and online reports from Nederlandse Omroep Stichting (NOS), a major Dutch broadcasting organization. The package of stories focused on the potential harms of psycho-behavioral treatments for children with ME/CFS. In particular, it focused on the kind of cognitive behavior therapy (CBT, although rendered CGT in Dutch) offered to these patients, which also involves encouraging them to gradually increase their activity levels. NOS health care editor Sander Zurhake was the reporter for the package, which triggered a detailed response and charges of inaccuracy from the Dutch Association for Pediatrics (NVK). The Association for Behavioral and Cognitive Therapies (VGCt) also issued a statement of concern. Zurhake offered robust rebuttals to these complaints (here and here). Most recently, more than 100 doctors, psychologists and other health care providers released an open letter in support of Zurhake’s reporting. That letter, in turn, prompted another NOS report from Zurhake last week. Some of the letter-signers themselves have ME/CFS and/or Long Covid. So let’s back up. Zurhake’s May 30th package was a sharp challenge to the longstanding dominance in the Netherlands of the CBT/GET treatment approach for ME/CFS, which some clinicians have more recently promoted as appropriate for people with Long Covid. The NOS stories were prompted, at least in part, by the release of a survey from the country’s ME/CFS Association of families in which a child was suffering from ME/CFS or another post-acute infectious syndrome. According to the findings, parents had faced threats of child abuse after refusing to allow their kids to be treated with this approach. Here’s the opening of the online version (via Google Translate, as are all the English-language statements quoted in this post) of the May 30th package: “Children with ME/CFS, a chronic disease that is extremely exhausting, are offered a treatment in the Netherlands for which it is doubted whether there is any scientific basis. This is evident from an inventory by the NOS of international medical guidelines, scientific studies and the positions of medical advisory organizations and patient associations in the Netherlands. “In the Netherlands, ME/CFS, a disease that is very similar to long covid, is treated with cognitive behavioral therapy. This therapy teaches children with ME/CFS to ignore warning signals when the body tells them to take it easy, for example because an effort is too great. “This approach assumes that ME/CFS is not maintained by physical causes, but by misleading thoughts that make the patient believe that he or she is exhausted. Working on fitness while ignoring signs of fatigue is an important part of this treatment method. “However, it does happen that children who ignore signs of exhaustion physically collapse, which worsens their symptoms. Some even become dependent on a wheelchair.” The NVK, in a somewhat incoherent bill of particulars posted on its website, assailed NOS for purportedly misrepresenting the state of the science, among other alleged faults. As happens with members of the CBT/GET ideological brigades, the group comes across as a bit shell-shocked at having its expertise questioned. The members apparently understand that they are no longer in full control of the narrative around this illness—and they seem to find this new reality unsettling. In his blistering response, Zurhake effectively dismissed all of NVK’s arguments. As he wrote: “Given the abundance of well-founded criticism of CGT/GET, it is truly a mystery to me why the NVK finds it ‘incorrect’ that the NOS states that there is ‘doubt’ about the scientific basis. Because ‘doubt’ is actually a very mild formulation if you look at other guidelines where CGT/ GET is explicitly discouraged.” He further noted: “My editors and I experienced strong pressure from the NVK not to publish or broadcast this story. We therefore had multiple sessions to double-check my research and source material. In short, we did not rush into this story…We also offered the NVK the opportunity to express and explain their vision in front of the camera until the very last moment. In vain.” Zurhake took a similarly blunt approach to the misguided statement from the VGCt: “The statement by the Association for Behavioural and Cognitive Therapies in response to the NOS article on the use of cognitive behavioural therapy in young people with ME/CFS raises serious questions about scientific consistency, professional integrity and the learning capacity of the association. While the statement at first glance gives the impression of careful communication, a closer look reveals a disturbing lack of connection with international biomedical insights, structural scientific criticism and reports of damage.” In the next phase of the brouhaha, the open letter from health care professionals called on pediatricians and therapists to stop recommending the psycho-behavioral treatments. For Zurhake, that presented another opportunity to chide the NVK and the VGCt for their outdated views of the matter. As he noted in the piece last Thursday: “The letter writers believe that the Dutch Association for Pediatrics and the Association for Behavioral and Cognitive Therapies should adjust the treatment guidelines for patients with ME/CFS based on current science… “Partly due to long covid, a disease that is very similar to ME/CFS, it is clear that the complaints do indeed have a physical cause. But where important British and American scientific committees concluded years ago that there is no scientific basis that proves that this treatment method is effective, people in the Netherlands are sticking to this therapy.” When journalists and media organizations go up against powerful medical interests, it is critical that they are able to back everything up. Zurhake has done his homework here. To anyone following the exchange, he clearly has the winning hand. (That is presuming Google Translate has been reasonably reliable.) ,

Patients share their challenges, and the actions needed

By David Tuller, DrPH Last week, the journal _EMBO Molecular Medicine_ published a paper called “ _Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity_ ,” from a team at the University of Edinburgh. (I wrote about it here.) According to a press release from the university, “The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.” The work involved collaboration between the university’s Institute of Genetics and Cancer and the Schools of Mathematics and Informatics. The senior investigator, geneticist Chris Ponting, is also the lead investigator of DecodeME, a genome-wide association study that is expected to report its findings later this year. For this study, Professor Ponting and his colleagues relied on the UK Biobank, a massive healthcare database with information on more than 500,000 people. In their analysis, they compared data on more than 3000 blood-based biomarkers from almost 1500 people who reported having received an ME/CFS-related diagnosis to data from more than 130,000 controls. They identified 116 markers that differed between the two groups and were significant in both male and female patients. They also reported that the findings were not impacted by levels of activity–a blow to the unproven theory that deconditioning is key to causing the symptoms. Earlier today, I spoke with mathematician Sjoerd Beentjes, the lead author, about the study’s findings and implications. (Along with Dr Beentjes and Professor Ponting, a third co-author, Dr Ava Khamseh, contributed equally.)

This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

By David Tuller, DrPH Last fall, a team from the University of Edinburgh released a pre-print called _“_ _Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity_ _.”_ At the time, I posted an interview with the lead investigator, Chris Ponting, a professor of genetics at the university. The peer-reviewed version of the study has just been published by the journal _EMBO Molecular Medicine_. According to a press release from the University of Edinburgh, “The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.” The work involved collaboration between the university’s Institute of Genetics and Cancer and the Schools of Mathematics and Informatics. The paper has received significant media coverage, including a report in _The Times_ _._ A BBC article featured the following crisp summary of the implications of the research: “Prof Chris Ponting said: ‘For so long people with ME/CFS have been told it’s all in their head. It’s not. We see it in their blood.’” The study is a complicated read for non-scientists. In short, the investigators examined levels of more than 3,000 blood-based molecular and cellular traits from a huge healthcare database repository called the UK Biobank. These biobank data were for more than 1400 people who reported having received an ME/CFS diagnosis and more than 130,000 people who did not. The analysis identified 116 traits that were significant among both female and male ME/CFS patients. Some of the findings were replicated in a separate, smaller dataset. Furthermore, the investigators found that the results were not associated with reported levels of activity. This finding serves to undermine the long-standing theory that deconditioning is a major cause of the symptoms in ME/CFS. That theory, of course, formed the basis of the psycho-behavioral treatment approach embodied in the fraudulent PACE trial’s interventions–graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT). Per the study: “Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.” Although the study revealed population-level differences in the biomarkers between cases and controls, the investigators stressed that these biomarkers cannot currently be used to distinguish individuals with ME/CFS from those who don’t have it. However, they stressed the importance of expanding on their investigation, noting that the findings should help to __ “accelerate research into the minimum panel of blood traits required to accurately diagnose ME/CFS in real-world populations.” The UK’s Science Media Centre, which has a long history of endorsing the discredited claims of the GET/CBT ideological brigades and whose former head compared critics of the PACE trial to Nazis, responded by posting two expert comments. One was from Alan Carson, a professor of neurology at the University of Edinburgh, a PACE truther, and a leader in the field of functional neurological disorder (FND). (Professor Carson blocked me on then-Twitter long ago because I criticized unwarranted claims from him and others about research into FND prevalence, diagnosis, and treatment.) In his comment, with its snide and snippy tone, Professor Carson comes across as somewhat aggrieved. That wouldn’t matter much if he were right on the facts. But he is wrong. His main complaint is that, since the study investigated more than 3,000 traits, it “is not very exciting” that 116 would appear to be significant; that would happen by chance alone, he claims. This is false. Oops! When a study involves a large number of tests, standard practice is to use specific statistical methods to reduce the likelihood of positive results arising by chance. Professor Carson apparently did not recognize or understand that the investigators took such steps to correct for the number of tests they conducted. His comment can be dismissed outright on the grounds of cluelessness. It is disturbing that the SMC has not acknowledged this indisputable error. Luckily, the other expert**—** Professor Kevin McConway, an emeritus professor of applied statistics at the Open University–offered an extensive, thoughtful, and cautiously positive review of the study. As he noted: “I think this is an important piece of research, but it’s also important to be careful not to claim too much from its findings. There’s a lot more to do. “The press release and the research paper both make it clear that these findings _could_ help in finding a set of blood biomarkers that can reasonably reliably distinguish people with ME/CFS from those who do not have that condition, but that, without a lot of further work, the findings do not in themselves provide such a set of biomarkers.”

This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

How my experience of rest as an athlete clashed with my experience of rest as a patient

This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.

By David Tuller. DrPH Proponents of psycho-behavioral interventions for ME/CFS and, more recently, Long Covid, have argued–unconvincingly and with a shortage of actual evidence–that the disabling symptoms can be attributed to the effects of deconditioning. Earlier today, I spoke with Dr Rob Wüst, an expert in muscle physiology and metabolism at Vrije [Free] University Amsterdam. Last year, Dr Wüst and colleagues reported in _Nature Communications_ that exercise led to muscle abnormalities in Long Covid. (I interviewed him about that study.) In a pre-print study posted last month, Dr Wüst’s team compared the results of exercise in people with Long Covid and ME/CFS patients to the results from healthy people who spent 60 days bedridden. Earlier today, Dr Wüst and I discussed the new paper and its implications.

By David Tuller, DrPH McMaster University, in Hamilton, Ontario, seems to be Canada’s Ground Zero for psychosomatic theorizing. In March, 2021, a psychiatrist-in-training, Jeremy Devine, published an opinion in _The Wall Street Journal_ titled _“The Dubious Origins of Long Covid.”_ (I wrote about it here.) Devine cited the PACE trial favorably, as if its findings were meaningful. The animating trope of Devine’s screed amounted to this: People with extended, non-specific medical complaints after a bout of COVID-19 were experiencing psychogenic symptoms and/or had a mental illness. He delivered this categorical message without nuance, caution or caveats. “Long Covid is largely an invention of vocal patient activist groups,” he declared. Devine’s article presaged a series of further questionable efforts emanating from McMaster. Last fall, _The BMJ_ published a problematic paper, spearheaded by investigators from McMaster, called _“Interventions for the management of long covid (post-covid condition): living systematic review.”_ (I wrote about this piece of crap here and here.) Paul Garner, the British infectious disease expert who has boasted ad infinitim that he cured himself of Long Covid with his manly cognitions, joined the group as a co-author. His participation almost always ensures that some of the arguments advanced will be unfounded and ridiculous. Also last fall, a McMaster-based group called Canadian Guidelines for Post COVID-19 Condition (CAN-PCC) released a set of draft recommendations said to be for preventing, diagnosing, and treating Long Covid. The treatment recommendations included exercise and cognitive behavior therapy, which understandably raised concerns among advocates for both Long Covid and ME/CFS patients (I wrote about the issue here; my friend and colleague Brian Hughes, a psychology professor at the University of Galway, blogged about it here.) Now McMaster is at it again. A research team from the university has recently published a study called _“_ _Impact of the COVID-19 Pandemic and the 2021 National Institute for Health and Care Excellence Guidelines on Public Perspectives Toward Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Thematic and Sentiment Analysis on Twitter (Rebranded as X).”_ The study, in the _Journal of Medical Internet Research_ _,”_ contains some interesting data—which the investigators promptly deploy in the campaign to promote psycho-behavioral approaches to ME/CFS and Long Covid. This is propaganda cosplaying as research. The senior and corresponding author, Jason Busse, is a professor of anaesthesiology at McMaster. Professor Busse was also the senior author of last year’s “living review” of Long Covid interventions. He apparently gets his fingers into a lot of pies! In this paper, Professor Busse and his colleagues position their own perspective as normative—i.e. “evidence-based”–in contrast to the views of patients, which are presented as irrational, biased and oppositional. In other words, the investigators have everything backwards. The study includes lots of details about the range of opinions regarding ME/CFS expressed in the Twitter-verse in more than 900,000 posts from between 2010 and 2024. The text includes a lot of compelling examples of these Twitter posts. Then it includes a discussion that does not analyze or engage with the findings in a substantive way. Instead, Professor Busse and his colleagues offer an argument for why pretty much everything the tweeters were tweeting was misguided or untrue. They call for research to explore why patients keep rejecting their “evidence-based” information. ********** **Claims that patients suffer from “intellectual conflicts of interest”** Here’s a section from the paper’s abstract about the findings: _“Treatment-related tweets often described frustration with ME/CFS labeled as mental illness, dismissal of concerns by health care providers, and the need to seek out “good physicians” who viewed ME/CFS as a physical disorder. Tweets on research typically praised studies of biomarkers and biomedical therapies, called for greater investment in biomedical research, and expressed frustration with studies suggesting a biopsychosocial etiology for ME/CFS or supporting management with psychotherapy or graduated activity. Tweets about the UK NICE_[National Institute for Health and Care Excellence]_guidelines expressed frustration with the 2007 version that recommended cognitive behavioral therapy and graded exercise therapy, and a prolonged campaign by advocacy organizations to influence subsequent versions. Tweets showed high acceptance of the 2021 UK NICE guidelines, which were seen to validate ME/CFS as a biomedical disease and recommended against graded exercise therapy. Tweets about COVID-19 often noted overlaps between post–COVID-19 condition and ME/CFS, including claims of a common biological pathway, and advised there was no cure for either condition.”_ Here’s the conclusion of the paper: “ _Our findings suggest that some individuals living with ME/CFS who post on Twitter believe that GET is harmful, CBT is ineffective, and recovery is not possible. Efforts should be made to promote the dissemination of evidence-based information on Twitter and assist patients in assessing the credibility of statements made on social media. Removing hope of improvement or recovery from ME/CFS can have dire consequences for some patients.”_ None of the beliefs attributed to patients—that GET is harmful, CBT ineffective, and recovery not possible—should be considered surprising. For many patients, these beliefs arise from their own hard-earned experiences. (Recovery, while not unknown, is pretty rare, according to the available data.) Furthermore, the notion that GET and CBT are “evidence-based” and need to be more aggressively promoted is laughable. These approaches have been promoted for decades and were long the standard-of-care, endorsed by NICE, the US Centers for Disease and Control and Prevention, and public health agencies around the world. If they had worked as advertised, the patient community would not have rejected them so thoroughly. As far as “hope of improvement or recovery,” patients need realistic information, not paternalistic versions of hope based on studies that first-year epidemiology students at Berkeley would reject as meaningless. One particularly irritating passage regards the purported dangers of encouraging patient involvement in research: “ _Our findings with respect to the potential influence of advocacy efforts on science are especially critical given the increasingly recognized importance of including patient partners in research. Involvement of patient partners can improve the quality and relevance of research efforts; however, participants with important intellectual conflicts of interest can compromise the research process and reduce the trustworthiness of results.”_ It goes without saying that “intellectual conflicts of interest” can “compromise” research and undermine the “trustworthiness” of any findings. But the paper cited to support that statement was focused more on conflicts of interest among medical personnel and other professionals than among patients. Moreover, it is hypocritical for Busse and his colleagues to suggest that patient advocates have “intellectual” biases without mentioning that the main PACE authors, for example, have maintained longstanding ties with disability insurance companies. Throughout the paper, opinions are presented as if they were facts. In this paragraph, for example, the investigators cite the objections of powerful people and entities as if these constitute a slam-dunk case against the 2021 NICE guidelines for ME/CFS and the patient community’s advocacy efforts: _“4 members of the 2021 NICE guideline development committee resigned in protest, representatives of 7 UK medical groups (including the Royal College of Physicians) signed a joint statement relaying concerns with the guideline, and more than 50 international specialists analyzed the guideline and concluded that “the consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.” At present, there are at least 2 ongoing campaigns by ME/CFS advocacy groups to have other publications they disagree with retracted: a Cochrane review that found GET was helpful for ME/CFS and a deep phenotyping study of patients with ME/CFS that found functional limitations were due to “altered effort preference.”_ These arguments are easily countered: While 4 of the 21 members of the committee stepped down, 17—among them physicians and other professionals–did not. While some UK medical groups opposed the guidelines, others did not; in any event, these critics had multiple opportunities during the process to convince NICE, and they failed. While more than 50 international experts criticized the guidelines, more than 150 international experts took the opposite perspective in an open letter to NICE. Moreover, NICE effectively rebutted these unwarranted complaints. Meanwhile, the two referenced studies opposed by patients—the Cochrane review and the “effort preference” paper–are fraught with methodological issues. Patient advocates have every right to point out these deficiencies. Their views are not on the fringe. Many leading scientists, physicians, and other experts around the world agree with the patient community’s cogent objections to this gusher of dodgy research—which includes the paper I’m discussing here.