Open Letter: Solidarity, Engagement, and Next Steps
- Jun 4
- 3 min read
Updated: Jun 10
58 orgs & 1200 individuals sign regarding the framing of Long Covid in the Royal College of Psychiatrists 2026 International Congress
Audio in Substack
FULL LETTER TO DOWNLOAD HERE:
We are deeply grateful to everyone who has signed and supported the open letter addressing the framing of Long Covid at the Royal College of Psychiatrists International Congress this June 15th 2026.
The response has been extraordinary. To date, the letter has received and the support of 58 charities and organisations and 1,200 individual signatories, including clinicians, researchers, patient advocates, and members of the public. We noted that 9% of people who signed were Doctors - 108 in total.
This reflects a clear and growing call for scientific rigour, respectful discourse, and appropriate representation of evidence in discussions of Long Covid, ME and related IACC (infection-associated chronic conditions).
A quick recap of our requested actions:
Ensure Congress programming on ME and Long Covid reflects current biomedical evidence and clinical guidance, and is not presented through outdated behavioural or psychosocial models.
Review how speaker sequencing and session framing influence the interpretation of evidence.
Ensure that patient expertise is positioned as an independent form of knowledge, not subsumed within pre-existing theoretical models.
Align all teaching and outputs with NICE guideline NG206 and the current evidence base on Long Covid, ensuring that psychological aspects of care do not supersede or redefine the underlying biological condition.
All 58 Charities and Organisations who signed:
We extend our sincere thanks to every individual and organisation who has contributed. This level of solidarity is significant, not only in scale but in what it represents: a shared commitment to improving understanding, care, and research for people living with these conditions.
To be transparent, we emailed the first-wave letter to the Royal College and Prof Subodh Dave on the 11th May and have not yet received a response. We have now engaged a second wave of outreach via email and physical letter to the President-elect Prof Subodh Dave and President Lade Smith. If this doesn’t foster a professional response, we will endeavour to adapt our strategy. We are determined for the voice and experience of patient expertise to be respected and engaged with.
As part of ongoing engagement, we have also requested a meeting with Professor Subodh Dave and colleagues at the Royal College of Psychiatrists to discuss the concerns raised in the letter and to explore constructive ways forward.
Our aim is to establish constructive dialogue. Not to focus on the psychiatric overreach into ME and Long Covid that has occurred historically, but on a way to ensure future policy and standards are safe and align with current evidence. This generation of psychiatrists matters. We are deeply concerned that the framing of Long Covid at the Congress by proponents that vocally support pseudoscientific brain retraining and CBT as treatment will unduly influence the culture and understanding of another generation of psychiatrists. Please note brain retraining and CBT are counter to the NICE Guideline NG206.
We have collated a testimony of harms of brain retraining that can be referenced HERE.
CW - this includes suicide attempts and ideation.
Our prime concern are patients. And the reality is that the standard of care is often deeply neglected. Unfortunately, one reason for this is that care for the severe and very severe has been under the jurisdiction of psychiatrists, who have been taught an out-of-date cognitive behavioural model of ME and post-acute viral illness. We are asking for appropriate education and Congress programming so progress for the better can be made.
With the publication of the £3.2 million genetic DecodeME study at Edinburgh University for ME and Long Covid, and a further £4.25 million for the upcoming SequenceME study, it is clear science and research are evolving. We are asking that the Royal College of Psychiatrists move with us.
It is fitting to spend a minute with this poignant video that Anil van der Zee shared on social media to remember the humanity and impact of the result of outdated psychological framing. This is one of the only care services available in the world for severe and very severe ME patients in Norway. A reminder that there is no commissioned care for severe and very severe patients in the NHS. If psychiatrists and HCPs wish to join us with their authority to ensure compassionate, evidence-based and safe care for patients, they are welcome to join patients, researchers, and scientists in this valuable journey.
We remain committed to constructive dialogue and to ensuring that patients, clinicians, and researchers are represented fairly and accurately in these discussions. Above all, this work is grounded in solidarity - with each other, and with those living with ME, Long Covid and chronic illness.
With sincere thanks,
Long Covid Advocacy
Letter in Full:
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