Russell Fleming, ME Association
Welcome to the first update on the development of guidelines for psychologists working with people with ME/CFS. The British Psychological Society is co-producing good practice guidelines on ME/CFS with assistance from Action for ME and the ME Association. You can read more about this project on the Action for ME and ME Association websites. 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 would like to thank everyone who has contributed for your valuable input. So far, we have held two focus groups and conducted an online survey which has been completed by 861 people. We were concerned that people who have severe ME/CFS might not be well enough to fill in the survey, but actually nearly 1 in 3 of people who responded classed themselves as severely or very severely affected. That is a higher proportion than we might have expected, as it is estimated that around 1 in 4 people with ME/CFS are severely affected, so it is really positive we have had so much representation from them.
We have also compiled a list of 304 people who are interested in helping further. We have been overwhelmed by the people willing to spend their time and limited energy to help us create these guidelines.
What people with ME/CFS and their relatives and carers told us
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.
Read the full report here and learn more about our future plans:
“You can help support patients to handle this life transition, the grief, the stress that comes from having this illness without removing it.”
“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.”
Quotes from survey responses
We will send out another update in the New Year. In the meantime, if you have any questions then please contact BPSGuideline@meassociation.org.uk