Long Covid Advocacy at the Royal College of Psychiatrists Congress - Now!
- Jun 14
- 5 min read
#HearOurVoices Campaign: Help us ensure our community is heard
Audio on Substack
LIVE at Congress!
Hold your excitement! Today, on the 14th June, we are present and LIVE at the Royal College of Psychiatrists International Congress in Liverpool to share a very polite leaflet and our open letter directly with delegates. This is ahead of Monday 15th's Long Covid presentations by Paul Garner, Trudie Chalder and Alan Carson.
We must give our deepest thanks and heartfelt salutes to a valiant friend of LCA for attending, even though they have ME themselves. Please take a moment to give them a token of encouragement and appreciation in the comments.
We will keep updated on how things went!
You can see the leaflet here:
Alt Text: Open Letter poster about calling on the Royal College of Psychiatrists to align with evidence, with a woman in a wheelchair, QR code, and bold pink/navy text. #RCPsychIC
The Situation
Our open letter, supported by 58 charities and organisations and more than 1,200 individual signatories, 9% who are doctors, calls for discussions of ME, Long Covid and related infection-associated chronic conditions to:
reflect relevant evidence
have appropriate representation
engage meaningfully with patient expertise.
Since publishing the letter on ME Awareness Day, 12 May 2026, we have made repeated efforts to engage constructively with the Royal College of Psychiatrists. We have written to the College, Professor Subodh Dave and President Lade Smith, requested a meeting, and sought opportunities for dialogue regarding the concerns raised. Another valiant friend of LCA even hand-delivered the letter to Prof Dave’s secretary to ensure he received it.
We are pleased that due to the unity of the campaign, The Royal College of Psychiatrists have joined the discussion with this reply on Friday 12th June:
It is important to note that whilst Prof Lade Smith has replied, there has not been a response to or action on our key concerns. We politely point out that we have never asked or think that the Royal College should not debate biological illness. Extra care in our reasoning and values means that we do not position false biological vs non-biological framing. We welcome Congress to present relevant, up-to-date, effective and appropriate talks on Long Covid.
Despite this, our approach and concerns remain unchanged: respectful engagement, openness to discussion, and a commitment to improving understanding and care for people living with Long Covid and ME.
To be honest, this campaign has had longer legs than we anticipated, but that’s primarily thanks to the community; it has garnered significant support - huzzah! We are therefore committed to doing our best to reach out directly and personally to those attending the Congress with our mutual concerns.
Our aim is not confrontation but conversation. We believe that evidence, patient experience and professional expertise all have an important role to play in shaping future psychiatric education, policy and practice and that outreach is vital for that.
Social Media Campaign
Tomorrow, on Monday June 15th, we will be launching our social media campaign, with the important Congress hashtag #RCPsychIC that will give us access to the Congress ecosphere - alongside #HearOurVoices. This is the day that Long Covid is being presented at Congress by Paul Garner, Trudie Chalder and Alan Carson.
The aim of this action is to provide you and the community a way to directly connect with those attending and connected to the Congress. This is a fabulous opportunity to reach out, as Congress is very well attended and has a strong online presence. It has the possibility to be a culture-shifting moment.
So, we invite you, whether you are a patient, clinician, researcher, carer, organisation or ally to take part by sharing your perspectives and amplifying the call for:
Scientific rigour and evidence-based practice.
Meaningful engagement with patient expertise.
Accurate representation of ME and Long Covid.
Safe, compassionate and appropriate care.
All the details are here about the campaign. You are more than welcome to share this image on your social media to help raise awareness of the social media drive.
We have provided this oven-ready template post to copy and paste for ease. You can also save and use any of the images in this article: open letter leaflet, condensed letter or social media leaflet or make your own - the choice is yours.
Today I'm joining the call for up-to-date scientific representation and meaningful patient engagement in ME and Long Covid. I'm proud to support the open letter to the Royal College of Psychiatrists, backed by 58 orgs and 1,200+ signatories. #HearOurVoices #RCPsychIC
INCLUDE IMAGE OF LETTER OR LEAFLET
Second Post Link to Letter (Top tip: Twitter algo doesn't like links in first comment)
Or for super ease, you can just like, share or comment Long Covid Advocacy’s and others in the community’s posts. This all helps boost in the algorithm and most importantly, post prominently in the #RCPyschIC feed.
Your voice matters. It is time Congress integrates the modern world of Long Covid research, especially for neuropsychiatric presentations. Outdated framing that is rooted in the cognitive-behavioural model is, in our view and in the words of Rocky from Project Hail Mary, bad, bad, bad. The community understands the depth of harm and medical neglect this model has meant for patients and the vacuum of effective care this creates.
Because we have not received a response that includes action or dialogue, we will endeavour to harness the power of social media to communicate directly to Congress. We continue to ask the Royal College and those attending in a calm and considered manner to consider the needs of the community - and encourage you to do the same.
The response to this campaign has demonstrated the strength of our community and the importance of solidarity across patients, clinicians, researchers and organisations. Together, we will continue advocating for respectful dialogue, scientific integrity and better care for everyone affected by ME and Long Covid.
We would like to thank every organisation and individual who has supported the letter and helped bring these concerns to the attention of the Royal College of Psychiatrists.
A condensed version of the open letter with all the charities and organisations can be read and downloaded below for use on your social media or reference.
Alt text: Open letter to the Royal College of Psychiatrists from Long Covid Advocacy and 58 charities and organisations and 1200 signatures, with dense text, signatures, and purple-blue header and footer banners. #RCPsychIC
Note: If you would like to contribute to the costs of this campaign, especially the printing and cost of the recording of the RCPsych Congress, which is released in August and we have our name down for - you can press the donate button here:
Comments