The British Psychological Society is working with people with ME/CFS, Action for ME and the ME Association to produce good practice guidelines for psychologists working with people with ME/CFS, based on the 2021 NICE guideline.
These will support clinicians to provide a good quality service with the aim of improving the lives of people with ME/CFS.
The professionals and patients leading this work, and Action for M.E., are very clear that ME/CFS is NOT a psychological illness.
As Joan Crawford, a member of the ME/CFS Working Group leading this project has said:
“There are several psychologists with ME involved in leading this project. It is not about promoting treating pwME with psychotherapy. That has zero evidence base. It is about ensuring psychologists know this and have information about ME to support them appropriately.”
Alongside Joan, bringing experience from clinical, counselling, occupational health and educational psychology backgrounds are Sara Meddings, Louise Kenward and Nita Baker, plus two experts by experience: Katherine Langford, Action for ME; and Russell Fleming, ME Association.
Earlier this year, our volunteer Katherine shared her experience in an article for the British Psychological Society, urging professionals to use appropriate, evidence-based resources when working with people with ME/CFS. She wrote:
“Sadly, it is common for people to have received bad medical advice or a lack of support from the medical profession. I came down with ME when I was 13 and was sent to see a paediatrician. Unfortunately, he (incorrectly) thought my ME was psychological. He told me to push through my symptoms and get back to school as quickly as possible […] this caused my health to crash completely. I remember being so exhausted that I did not even have the energy to roll over in bed.”
Action for M.E. is supporting this project because we want to reduce harm caused to hundreds of thousands of people with ME/CFS, like Katherine. We believe it is essential that psychologists have accurate information and examples – along with what NOT to do - on how to provide the best care and support they can, firmly underpinned by the 2021 NICE guideline for ME/CFS.
In a thread on x.com, ME/CFS Working Group member Louise Kenward explains that the British Psychological Society have been involved to contribute to the DHSC implementation process for the NICE guideline, and that developing good practice guidance is the next step in this work:
“I think the good practice guidance will be a great step towards improving care & treatment of people w ME and may also help people w ME to understand the role psychologists have (& what we can help with) too.”
To develop their guidelines, the British Psychological Society is seeking the views and experiences of people with, or caring for someone with, ME/CFS, whether or not you/they have seen a psychologist. They will collate anonymised information from this initial survey and use the insights and experiences you share to inform the guidelines.
The closing date to complete this survey is 1 November 2024 (this has been extended to allow more young people and more people from Black, Asiana and ethnic minorities to take part). Preliminary findings from responses received by 15 September will be shared at the first co-production meeting for the guidelines.
There is also a shorter online form seeking volunteers interested in joining online forums or online focus groups to further input into development of these guidelines. You do not need to have completed the other survey to take part.
We are aware that this is a short deadline, especially for those with severe ME. There will be other opportunities to provide input via email and other forums in the future, advertised by us and the ME Association.
The whole project is expected to take 14 months, with input from the ME community into drafts at each stage.
The final guidelines will be endorsed by the British Psychological Society Practice Board and Division of Clinical Psychology Publications Committee, having followed their approved publications process.
For further information or if you have any queries, please contact the ME/CFS Working Group by email.
