By David Tuller, DrPH
I don’t generally write much myself on May 12th, which is an international day of awareness for ME. I’m aware of ME most of the time and write about it constantly, so I don’t feel a particular need to say anything special today. I usually consider it a day for patients to express themselves.
However, I do sometimes like to highlight the statements of others. In this case, the group Long Covid Advocacy has issued a May 12th statement regarding its open letter to the Royal College of Psychiatrists about the decision to invite die-hard members of the “biopsychosocial” ideological brigades to present on Long COVID at their upcoming congress. The letter is accepting signers from individuals and groups until May 26th.
I mentioned this problematic panel in a recent post, so I thought it was worth highlighting Long Covid Advocacy’s statement as well. I have posted it in full below. (Headlines are from the statement.)
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Open Letter Urges Royal College of Psychiatrists to Align with Current Evidence
ME Awareness Day and an opportunity to change direction
It is ME Awareness Day, and the publication of our open letter to the Royal College of Psychiatrists sits within a long and well-documented history of contested approaches to ME within psychiatry and adjacent services.
Our central concern relates to the inclusion of speakers at the RPsych International Congress 2026 (#RCPsychIC), including Paul Garner, Trudie Chalder, and Alan Carson, who are associated with psychiatric-led psychosocial approaches to ME and Long Covid.
These tensions are not new. They reflect long-standing concerns about mischaracterisation, delayed recognition, and the privileging of psychosocial explanatory models in the clinical framing of ME and related post-viral conditions.
The evolution of the NICE guideline for ME/CFS (NG206) in 2021 is widely recognised as a turning point, where patient testimony and emerging evidence contributed to the withdrawal of recommendations for harmful graded exercise therapy and the revision of behavioural approaches, following extensive consultation and review. Yet stakeholder input from the Royal Colleges delayed the release of the Guideline the day before, as discussed by Dr Charles Shepherd.
This advocacy for appropriate and safe patient treatments has been widely discussed in academic critique and patient-led analysis, including work such as Prof Brian Hughes’ writing on the Royal Colleges and Dr David Tuller.
Within that wider context, it is difficult to separate current debates about Long Covid from the intellectual and institutional lineage that shaped earlier approaches to ME. Commentators such as Prof James Davies have highlighted how strongly held positions within parts of psychiatry have been experienced by patients as adversarial rather than collaborative, including the public discourse that has surrounded these conditions.
The Royal College itself has reflected both continuity and change within that landscape. Figures such as Simon Wessely have played a historically significant role in shaping earlier psychiatric approaches to ME, while also occupying positions of institutional leadership that influenced broader clinical framing. At the same time, other senior figures, including Robert Howard—considered for the recent leadership role within the College and professionally associated within overlapping academic networks—reflect the persistence of those intellectual traditions within psychiatry.
I’ve not researched CFS but consider it most probably represents a functional illness. Unsurprisingly that the only interventions that have been shown to improve symptoms are CBT and GET. Tragic that that the awful behaviours of “activists” (all muted btw) have been so successful. Robert Howard, 2021
It is worth noting that GET has harmed many patients with ME to the point of severe presentation and disability. And this legacy of activity for post-acute viral illness which often includes exercise intolerance still remains.
More recently, there is an opening for a potential shift in emphasis. Prof Subodh (pronounced Soo both) Dave, as incoming President-Elect, has publicly engaged with the importance of patient expertise, health inequity, social justice. This interest represents an opportunity for the College to move beyond inherited framing disputes and towards a more genuinely integrated model of patient involvement.
ME Awareness Day therefore becomes more than symbolic. It highlights a choice: whether outdated interpretive frameworks continue to shape the presentation of post-acute viral illness, or whether the Royal College uses its current leadership moment to align more clearly with contemporary biomedical evidence and meaningful patient expertise.
Our open letter is offered in that spirit—not as repetition of past debates, but as a request for clarity in how future ones are framed.
We are also opening this letter to wider public sign-on in the spirit of transparency and collective participation. We previously invited healthcare professionals, researchers, and organisations to sign and apologise if any were unintentionally missed. We now welcome additional support from individuals and groups, reflecting a commitment to broader public engagement beyond formal institutional channels. These signatures will be sent to the Prof Subodh Dave on 26th May, giving a two week period for collection.
We’d like to sincerely thank all those who signed in solidarity and are committed to improving the lives and treatment of people with ME and Long Covid.
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Again, the link to sign the letter is here.