The British Psychological Society, in collaboration with Action for ME and the ME Association, is developing guidelines for psychologists working with individuals with ME/CFS. It is important to us to have a high amount of involvement from people with ME/CFS and their carers, family and friends. Russell Fleming and Katherine Langford represent the ME Association and Action for ME on the working group. A number of the psychologists leading the project and others working on it also have lived experience of ME/CFS.
We are prioritising input from people with ME/CFS and their support networks. Two focus groups and an online survey, completed by 861 participants—including a significant representation of those severely affected—have gathered valuable feedback. Respondents emphasised that ME/CFS is a physical illness, with psychological support being crucial for managing grief and trauma associated with the condition.
“Psychologists should provide belief, validation, and support, helping us endure the challenges of living with this illness. The focus should be on helping us navigate the emotional toll, such as self-blame, isolation, and grief, rather than attempting to fix or change the physical reality of ME/CFS.”
Over 75% of respondents have seen psychologists or other psychological practitioners, with mixed levels of perceived helpfulness. Positive experiences highlighted the importance of validation and support, while negative experiences involved things like misclassification of ME/CFS as a mental illness or pressure for inappropriate treatments. The guidelines aim to address these issues and include diverse perspectives, including experiences from underrepresented groups.
Next steps involve analysing the survey data comprehensively and drafting the guidelines with contributions from the ME/CFS community. We expect this process to take about 14 months, with regular updates and opportunities for further involvement. We aim to have a first draft early next year, with ongoing collaboration and feedback.
We would like to thank everyone who has taken part so far and we will be in touch again in the New Year with our next update.
Best wishes from all the team working on the guidelines.
Click here to read the full report.
It has been really clear that people want us to include in the guidelines that ME/CFS is not psychological. It is a physical illness. As with any long-term debilitating illness, like MS and cancer, it does have a psychological impact which psychologists may be able to help with. For example, people talked a lot about feelings of grief, loss and trauma because of losing their old life.
We received lots of useful feedback about things like how to make appointments accessible e.g. shorter sessions, flexible times, alternative formats such as video calls, dim lighting); what helps like pacing; details for specific groups like those who are severely affected and carers. We now have useful quotes which we can use throughout the guidelines to help psychologists understand the symptoms of ME/CFS (such as post-exertional malaise), what having ME/CFS is like and the impact that not being believed by doctors or receiving incorrect medical advice can have on someone’s physical and mental health.
