Charities, patients and researchers are all working together to find the cause and effective treatments for ME/CFS
Dear Editor
Charities, patients and researchers are all working together to find the cause and effective treatments for ME/CFS
As a charity that funds biomedical research into the cause and treatment of ME/CFS we are not aware of any researchers who hold the sort of negative and divisive views about the ME/CFS patient community that are expressed in this article (1). All the researchers we fund are very grateful for the support and encouragement they continually receive from the ME/CFS patient community. In fact, patients, charities and researchers are all successfully working together on a number of ME/CFS research initiatives such as Decode ME (2), the ME Biobank (3) and the role of cardiorespiratory exercise testing (4).
The reason why people with ME/CFS feel angry and let down by the medical establishment stems from the fact that almost all biomedical research until recently has been funded by donations to the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation.
This latter research has led to the NHS spending millions of pounds in providing treatment programmes that follow the current (2007) NICE guideline recommendations on CBT and GET - behavioural treatments that are based on this psychosocial model of causation involving abnormal illness beliefs and behaviours and deconditioning.
Having reviewed all the clinical trial evidence for these two behavioural interventions for the new NICE guideline on ME/CFS, NICE has found no robust evidence of efficacy. The NICE guideline committee also received patient evidence on behavioural interventions from people with ME/CFS (2274 respondents). This evidence was analysed by Oxford Brookes University (5). With CBT, 53% reported no improvement in physical health. 26.4% reported a deterioration. With GET, 67.1% reported a deterioration in physical health. 11.7% reported no improvement.
NICE has stated in relation to the stakeholder consultation draft of the new NICE guideline (6) that:
Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.
The draft guideline also emphasises that cognitive behavioural therapy (CBT) it is not a treatment or cure for ME/CFS.
If anyone deserves an apology it is people with ME/CFS, many of whom have experienced years of being told that their symptoms are ‘all in the mind’ and given no meaningful medical management - mainly as a result of the dominance of the psychosocial model of causation. As a result, progress involving biomedical research into the underlying cause of ME/CFS has been severely hampered.
NICE has warned that their current recommendations regarding GET for ME/CFS should not be transferred to people with Long Covid (7). We hope that this new cohort of post-viral patients with Long Covid will not have to suffer the same mistakes that have been inflicted on people with ME/CFS.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
References
1 Chronic fatigue syndrome and long covid: moving beyond the controversy BMJ 2021;373:n1559
Rapid Response:
Charities, patients and researchers are all working together to find the cause and effective treatments for ME/CFS
Dear Editor
Charities, patients and researchers are all working together to find the cause and effective treatments for ME/CFS
As a charity that funds biomedical research into the cause and treatment of ME/CFS we are not aware of any researchers who hold the sort of negative and divisive views about the ME/CFS patient community that are expressed in this article (1). All the researchers we fund are very grateful for the support and encouragement they continually receive from the ME/CFS patient community. In fact, patients, charities and researchers are all successfully working together on a number of ME/CFS research initiatives such as Decode ME (2), the ME Biobank (3) and the role of cardiorespiratory exercise testing (4).
The reason why people with ME/CFS feel angry and let down by the medical establishment stems from the fact that almost all biomedical research until recently has been funded by donations to the charity sector. Almost all government funding has gone into research based on a flawed psychosocial model of causation.
This latter research has led to the NHS spending millions of pounds in providing treatment programmes that follow the current (2007) NICE guideline recommendations on CBT and GET - behavioural treatments that are based on this psychosocial model of causation involving abnormal illness beliefs and behaviours and deconditioning.
Having reviewed all the clinical trial evidence for these two behavioural interventions for the new NICE guideline on ME/CFS, NICE has found no robust evidence of efficacy. The NICE guideline committee also received patient evidence on behavioural interventions from people with ME/CFS (2274 respondents). This evidence was analysed by Oxford Brookes University (5). With CBT, 53% reported no improvement in physical health. 26.4% reported a deterioration. With GET, 67.1% reported a deterioration in physical health. 11.7% reported no improvement.
NICE has stated in relation to the stakeholder consultation draft of the new NICE guideline (6) that:
Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.
The draft guideline also emphasises that cognitive behavioural therapy (CBT) it is not a treatment or cure for ME/CFS.
If anyone deserves an apology it is people with ME/CFS, many of whom have experienced years of being told that their symptoms are ‘all in the mind’ and given no meaningful medical management - mainly as a result of the dominance of the psychosocial model of causation. As a result, progress involving biomedical research into the underlying cause of ME/CFS has been severely hampered.
NICE has warned that their current recommendations regarding GET for ME/CFS should not be transferred to people with Long Covid (7). We hope that this new cohort of post-viral patients with Long Covid will not have to suffer the same mistakes that have been inflicted on people with ME/CFS.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
References
1 Chronic fatigue syndrome and long covid: moving beyond the controversy BMJ 2021;373:n1559
2 Decode ME website information:
https://www.decodeme.org.uk
3 ME Biobank website information:
https://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/
4 ME Association Research: New study to measure physiological changes in daily activity in people with ME: MEA website, May 12 2020.
https://meassociation.org.uk/2020/05/mea-research-new-study-to-measure-p...
5 NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-c...
6 Forward-ME: Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes
https://meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outc...
7 NICE cautions against using graded exercise therapy for patients recovering from covid-19 BMJ 2020;370:m2912
https://www.bmj.com/content/370/bmj.m2912
Ends
Competing interests: No competing interests