The BMJ (British Medical Journal) commissioned an article by a small group of authors who rehashed the ‘dysregulation’ argument and many other classic talking points of what has become known as the ‘bio-psycho-social lobby’. These folks have influence and reach. Even the new NICE guidelines (and the related damning indictment of the low quality of research to back their theories) don’t seem to have put a stop to their promotion of these theories.
Most shocking, perhaps, was their offensive use of the story of Maeve Boothby-O’Neill’s death and subsequent inquest. Maeve was a beloved member of the ME/CFS community who died from starvation following UK-wide failures to provide adequate support for patients with ME/CFS and inappropriate interventions and allegations about her and her family from social services and others.
Any real hope lies with research that, whilst slow to bring change, might actually yield results in the medium and long term.
Responses to the BMJ article
To those of us who have been aware of these debates for some decades, a huge change in attitudes was demonstrated by the massive outpouring of intelligent, research-backed, supportive responses challenging the narrative put forward in the original piece. This response has come from individual patients, expert biomedical researchers, psychologists and sociologists.
We collect some of the best responses (with short excerpts from each) below – whenever you need hope rather than ‘hopium’ they’re worth a read. They’re all great, but the all-star signatories list for the last one means it’s worth reading to the bottom!
They’re presented in date order and the article titles will lead you to the complete responses on the BMJ website.
Suzy J Evans
Medically retired
Read the full response: ME/CFS: Hope Must Be Grounded in Biomedical Evidence
In severe cases, ME/CFS can cause profound debilitation – bedbound patients often experience hypersensitivity, post-exertional symptom exacerbation, and an inability to tolerate light, sound, or minimal movement. To suggest that these manifestations persist due to unhelpful beliefs or conditioned responses is not only clinically inaccurate but also psychologically damaging. This kind of narrative has long contributed to medical gaslighting, delayed diagnosis, and denial of appropriate care...
…While hope is essential, it must be grounded in evidence. Recovery in ME/CFS – especially in severe cases – is rare, and implying that it can be achieved through reframing thoughts or increasing activity contradicts both patient experience and clinical guidelines. It risks causing harm, particularly if it leads clinicians to push treatments that worsen symptoms or invalidate patient experiences.
Suzy J Evans – ME/CFS: Hope Must Be Grounded in Biomedical Evidence
Katharine Cheston
Postdoctoral Researcher, Department of Sociology and Institute for Medical Humanities, Durham University
Read the full response: Beliefs about ME/CFS can shape lives
I found that this exclusive focus on a patient’s beliefs and behaviours can cause those who remain (or become more) ill to spiral into self-doubt and self-blame, with damaging and corrosive impacts. The enduring belief that ME/CFS is, as one clinician-researcher claimed in 1997, a ‘real but reversible condition that the patient may influence by practical self-help’ places an additional burden of suffering of those who remain ill by framing persistent symptoms as personal failure. I speak from both personal and professional experience when I say that the pain this provokes can shape lives.
Katharine Cheston – Beliefs about ME/CFS can shape lives
Michiel Tack
ME/CFS patient, Hulst, The Netherlands
Read the full response: The risk of blaming patients for their lack of recovery
Miller and colleagues primarily cite opinion pieces and research on other conditions rather than relevant data on ME/CFS. While inspiring hope is valuable, it is equally important not to spread false hope. The view that ME/CFS is maintained by unhelpful thoughts and behavior is poorly supported by current evidence and may unfairly blame patients for their illness and failure to recover. This model has been tested in the past with disappointing results, which is likely why NICE no longer recommends it.
Michiel Tack – The risk of blaming patients for their lack of recovery
Malcolm J Bailey, Denise Spreag, Janet Sylvester
Read the full response: Severe ME/CFS Requires Biomedical Research and Care—Not Biopsychosocial Spin
Most people with severe disease do not recover, and over-promising outcomes can mislead clinicians and retraumatise patients. Recovery narratives must be grounded in evidence – not anecdote or ideology. By presenting “beliefs” as a barrier to improvement, the article risks blaming patients for their illness, undermining trust, and promoting psychological interventions in place of urgently needed biomedical research and services.
Malcolm J Bailey, Denise Spreag, Janet Sylvester – Severe ME/CFS Requires Biomedical Research and Care—Not Biopsychosocial Spin
Mirja L Nicolas, Florian Gerber and Fabian Fritz
Dortmund, Germany
Read the full response: Biopsychosocial approaches to ME/CFS provide neither a cure nor hope
While ME/CFS research is still in its early stages, the direction is clear: evidence increasingly demonstrates the presence of physical impairments. It is within this biomedical framework—not through outdated psychosomatic paradigms—that meaningful medical advances can be expected. Recognizing this potential as well as recognizing ME/CFS as a severe, multisystemic disease with no established cure is essential for improving the clinical, social, and personal circumstances of those affected. It is also a prerequisite for offering patients realistic hope, rather than a regression into a discredited “biopsychosocial” model.
Mirjia L Nicolas, Florian Gerber and Fabian Fritz – Biopsychosocial approaches to ME/CFS provide neither a cure nor hope
Joan Crawford
Senior Counselling Psychologist, Mersey Care NHS Foundation Trust
Read the full response: Lack of definition of cardinal features of ME/CFS, use of subjective outcomes, and bias in opinion piece
It is incorrect for the authors to state, “the UK is following an outdated model, leading NICE to disallow cognitive approaches to help recovery or bespoke programmes designed to increase activity.” On the contrary, NICE (2021) encourages supportive cognitive approaches as appropriate, depending upon the level of severity and highlights that the use of such should be personalised to the individual’s needs and not based on the assumption that ME/CFS is caused by incorrect beliefs or behaviours, because that is an honest appraisal of the evidence base.
Joan Crawford – Lack of definition of cardinal features of ME/CFS, use of subjective outcomes, and bias in opinion piece
Rachel A Reaveley
Former rehabilitation consultant. Retired due to ill health.
Read the full response: Hope and rehabilitation perspective from a former rehabilitation consultant with ME/CFS
Post exertional malaise (PEM) otherwise known as Post exertional symptom exacerbation (PESE) was the cause for my decline in mobility and orthostatic tolerance. This is not merely ‘fatigue after activity’ nor is it influenced by beliefs and expectations. PEM is a worsening of the illness, its symptoms and the capacity for exertion. Multiple biological abnormalities have been reported including severe exercise induced myopathy.
Rachel A Reaveley – Hope and rehabilitation perspective from a former rehabilitation consultant with ME/CFS
Mark Vink
Family and insurance physician
Friso Vink-Niese (Independent Researcher, Germany)
Read the full response: Opinion based medicine supported by anecdotal evidence
The claim by the authors is similar to claiming that patients who are very ill with for example COVID-19, could recover from it by simply changing their mindset. Or claiming that you can recover from a broken leg by not putting the leg in plaster, but by changing your mindset.
Mark Vink and Friso Vink-Niese – Opinion based medicine supported by anecdotal evidence
Professor David Putrino et al
(18 published signatories, plus over 70 further doctors, scientists and patient advocates with an interest in ME/CFS – including pretty much every single serious name in biomedical research into ME/CFS around the world)
Read the full response: Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
When clinicians believe that severe ME/CFS stems from “unhelpful illness beliefs,” lifesaving interventions may be withheld, on the basis that they “reinforce” these beliefs in patients. The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious organic illness.
David Putrino et al – Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions
Thanks for the photo at the top of this page, Silvan Arnet on Unsplash
