When you go to a doctor, you expect to be warned of the dangers of any therapy or drug. But ME patients aren’t warned about dangerous therapies.
ME patients in the UK have been waiting for ten years for the NICE Guidelines to be updated to reflect current science. The only recommendation for treatment on the NHS is Graded Exercise Therapy (to cure you of muscle deconditioning) with Cognitive Behavioural Therapy (to cure you of your ‘false illness beliefs’). Despite the majority of ME patients finding that Pacing and rest help whereas Graded Exercise harms, the current NICE guidelines warn about the harms of resting, but claim Graded Exercise is safe.
Here is a factsheet so you’re fully informed. Feel free to copy and paste it as an attachment if you write to your MP, as background information (but be sure to write your own personalised letter accompanying it – see here for how to do so).
NICE have decided that they will not change the guidelines: we have one week to change their minds.
Note: This Factsheet is also on the ME Action blog, but I’m sharing it here, too – for maximum coverage.
Factsheet: Why the NICE Guidelines for ME/CFS urgently need a complete revision.
- How bad is ME?
Myalgic Encephalomyelitis (ME), sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating systemic neurological/autoimmune disease. It often wrongly understood as being ‘tired all the time’, at the severe end it’s a hell on earth: patients are bed-bound for decades, in constant agonising pain, unable to walk, feed themselves, speak or even tolerate sound or light. 25% of patients are housebound or bed-bound. Though rare, it is possible to die from ME, and it has been listed as ’cause of death’ in autopsies*.
- What’s the problem?
The current NICE guidelines have been unchanged for ten years and are currently undergoing a much needed review. However, to patients’ dismay, during the review period NICE has announced it has “provisionally decided not to update the guidelines”.
- What’s wrong with the guidelines?
- In addition to patient evidence, what scientific evidence shows GET harms ME patients?
- How do the NICE guidelines harm patients’ mental and social wellbeing as well as their physical health?
- Undergo a complete and thorough review of its guidelines for ME, with patient-group stakeholders in attendance, taking into account recent international research showing harms of GET plus the lived experiences of patients.
- That Graded Exercise Therapy be removed as a recommended treatment due to lack of evidence of efficacy and high reports of patient harm, and Pacing recommended instead.
- If GET remains as a therapy, then patients should be made aware of the potential harm. The NICE guidelines should make clear that this is a controversial treatment, with high reports of patient harm. Patients should not be blamed or denied crucial support if they do not improve.
- That ‘Activity Management’ be removed as a recommended treatment for severely affected. This is based on GET principles with the same risk of harm, despite no research supporting this therapy for severe ME patients. With severe patients the risks for great harm are higher, and Pacing and Rest are safer.
- The NICE guidelines for ME/CFS should be removed from the static list and returned to the active list where they can be regularly reviewed.
- New Scientist: First Official Death from Chronic Fatigue Syndrome https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/
- *ME Association petition: https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision?recruiter=744708136&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=share_petition
- *ME Association report, ’No decisions about me without me’, May 2015, based on 2012 survey of 4000 patients. 74% of patients reported their symptoms were worse after a course of GET. http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf
- *Action for ME report, Time to Deliver, 2014. 65% of patients surveyed said they were unchanged or worse by GET. 85% said they had improved with pacing, and 89% with rest. https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf
- *Dr Julia Newton research on how exercise damages ME patients http://www.meresearch.org.uk/news/muscle-cell-abnormalities/ and Dr Mark Van Ness on VO2 Max trials https://www.healthrising.org/blog/2013/07/30/busted-exercise-study-finds-energy-production-system-is-broken-in-chronic-fatigue-syndrome/
- *ME Association: CDC Removes CBT and GET as Recommended Treatments for ME/CFS http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/
- *TYMES Trust Report: False Allegations of Child Abuse in Childhood Cases of Myalgic Encephalomyelitis http://www.tymestrust.org/pdfs/falseallegations.pdf