We are looking for people with ME/CFS and their carers to give their opinions about creating some new ME/CFS good practice guidelines for psychologists.
These guidelines are being produced by the British Psychological Society (BPS) with the help of Action for ME and the ME Association.
While ME/CFS is not a psychological condition, many people with ME/CFS see a psychologist to help them learn how best to live with the condition or for other reasons unrelated to ME/CFS. We wish to ensure that these people receive the best current advice, which adheres to the NICE Guideline on ME/CFS, about topics such as pacing and symptom management.
It is extremely important that we have involvement from people with ME/CFS and their relatives, friends and carers. We want your input into what should be included in the guidelines and quotes which we can include to help psychologists and other professionals understand what it is like to have ME/CFS.
We feel it is a positive step forward that the UK's leading psychological organisation is working so closely with people with ME/CFS to co-produce guidelines.
The deadline to complete this survey is 09 October 2024. However, if possible we would appreciate it if you are able to complete the survey by 15 September so that we are able to begin analysing responses in time for our first co-production meeting with the BPS.
If you are not able to complete the survey but want to stay involved, or if you have any queries, please get in touch by emailing: BPSGuideline@meassociation.org.uk
With best wishes,
Katharine Langford (Action for M.E.), Russell Fleming (The ME Association), and Sara Meddings (Core BPS working group on ME/CFS)
“We are delighted to be working with Action for ME and the ME Association to coproduce the first BPS good practice guidelines for psychologists working with people who have ME/CFS. People with ME/CFS are the experts by experience of their own condition and will greatly enhance the work we do.
“Psychologists play a valued role in working with people with ME/CFS. The BPS guidelines will be aimed at practitioner psychologists working with people with ME/CFS both in ME/CFS specialist services and other contexts including primary care, mental health services, schools, hospitals and private practice.
“We hope the guidelines will help foster greater understanding and better treatment for people with ME/CFS.”
Sara Meddings, Consultant Clinical Psychologist and member of the BPS core working group on ME/CFS
Background
The British Psychological Society (BPS) has been working with the Department of Health and Social Care (DHSC) on implementing the 2021 NICE guideline on ME/CFS. The DHSC co-produced an interim implementation plan in 2023 for the NICE guideline.
As part of its input into these, the BPS formed an ME/CFS working group which has been meeting for the past couple of years. Out of this work came a proposal for a good practice guideline. Sara, Louise , Nita, and Joan have been working together to plan and develop this following on from the BPS input to the DHSC work and as part of the interim delivery plan.
We now have a working group which includes different types of psychologists from across all areas of practice (clinical, counselling, occupational, health, educational including those with expertise in children and young people too) and two experts by experience (EbEs) from ME charities (one from Action for ME and one from the ME Association).
Overview of the project
The British Psychological Society is co-producing a good practice guideline for applied psychologists working with people with ME/CFS to:
- translate the NICE Guideline on ME/CFS about what is ME and what psychologists can offer.
- support clinicians to provide a good quality service with the aim of improving the lives of people with ME/CFS.
Rationale
- NICE published a new guideline for people with ME/CFS in 2021. The DHSC published an interim implementation plan. This included an extensive evidence review, which has significant impact on the recommendations for psychological therapies for people with ME/CFS.
- BPS has not published any previous guidance or briefings on ME/CFS.
- Psychologists play a valued role in working with people with ME/CFS.
- The BPS has had a higher than usual response from members to its consultations on this subject, suggesting this is a key area to develop such guidance for practitioners.
- In the past there may have been some mis-guided assumptions and uncertainties around ME/CFS, based on low quality evidence, which has been unhelpful for patients. We are seeking the centre ground and to communicate the evidence base and its strengths and weaknesses.
- It is particularly valuable for this guideline to include the voices of people with lived experience, as well as psychologists – to co-produce the good practice guideline.
- The updated NICE guideline includes the need to rebuild trust with this patient community and it is important that the BPS leads on this.
- The BPS can take a lead and inform and ensure practitioner psychologists working with people with ME/CFS can do so with competence and confidence.