Early Day Motion (EDM) 271
#MEAction supports parliamentary Early Day Motion (EDM) 271 which is sponsored by Stephen Timms, MP. The EDM urges NICE to update its guideline on Myalgic Encephalomyelitis (ME).
Parliamentary Briefing on ME
Below #MEAction provides a summary of the key issues surrounding the NICE guideline for ME. You can access the full briefing document here.
What is Myalgic Encephalomyelitis (ME)
It’s estimated 250,000 people in the UK (17 million worldwide) have Myalgic Encephalomyelitis (ME) ME is a long term, fluctuating, multisystemic condition affecting many body systems, particularly relating to the nervous and immune systems. People with ME suffer severe, persistent fatigue. The US Institute of Medicine identified that the cardinal symptom of ME is exertional intolerance (a worsening of symptoms after minimal exertion (physical or cognitive – also known as Post Exertional Malaise (PEM). Having ME is commonly thought of as being “just tired”, yet research has shown that people with ME score lower for physical function and overall quality of life than most other chronic disease groups, including MS, cancer and stroke (Nacul 2011). 25% of patients are housebound or bedbound.
Is ME the same as Chronic Fatigue Syndrome
Myalgic Encephalomyelitis was recognised by the World Health Organisation in the 1960’s but Chronic Fatigue Syndrome (CFS) was introduced by psychologists in the 1980’s. CFS is often rejected by patients as it trivialises their condition and broadens the spectrum of the illness to include other conditions. International consensus advocates moving away from the term CFS in favour of the term ME to better reflect the underlying disease process.
In the UK, patients are distressed and angry that NHS treatment programmes for ME have, in many cases, caused their health to deteriorate rather than improve, particularly concerning Graded Exercise Therapy (GET). When NICE proposed not to update guideline CG53 for ME/cfs, 30 organisations submitted evidence urging for a full and urgent review, only 9 felt it should remain static. (none of which were patient associations)
Over 15,000 patients also signed a petition (in less than 2 weeks) calling current guidelines ‘unfit for purpose’
What is wrong with the current guideline
- The current guideline heavily reflects a psychological model of ME.
- It doesn’t recognise recent biomedical research indicating an abnormal physiological response to exercise in ME.
- It also fails to recognise that half of patients surveyed report adverse health effects from GET/CBT, (some report becoming permanently disabled by it) yet current guidelines do not report these risks
- NB: CBT alongside GET works on the basis that patients have a false illness belief and encourages them to do more than they feel able to do by modifying their thoughts.
- Many of the studies use a criteria for ME such as the Oxford criteria which is too vague and crucially doesn’t recognise Post Exertional Malaise (PEM) as a symptom.
- The US Centre for Disease Control no longer considers studies using the Oxford criteria as they have returned an 85% error rate in identifying ME. Consequently, it no longer recommends GET/CBT for ME.
- Pacing (aiming to keep activity below their threshold with periods of rest) is discouraged on current guidelines, yet studies reveal up to 84% found this helpful.
- The social and emotional consequences of not following GET/CBT. Some patients report being refused benefits, counselling or house calls from their doctors if they refuse or drop out of GET. Parents are also accused of Munchausen’s by Proxy/ Fabricated or Induced Illness by Carers’ (FIIC) for ‘resisting treatment’. TYMES Trust have (successfully) repealed almost 200 cases where parents were wrongfully accused of child abuse. Patients should not be punished for refusing a therapy that may harm them.
- There is no research supporting GET on severe ME patients. We believe the risks are even higher for this group and ‘Activity Management’ (form of GET) should be removed as recommended treatment.