ME / CFS Factsheet to Share – NICE is Not Nice to ME

 

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.

RE: National Institute of Care and Excellence (NICE) guidelines for ME/CFS
  • 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 short: they are harming patients. The current guidelines are described as “not fit for purpose” by Dr Shepherd from the ME Association. The charity has launched a petition* which within three days had nearly 5,000 signatures (link below), which demonstrates this is the view of the wider ME community. One of the main concerns is that the NICE guidelines continue to recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), despite many patients finding this approach harmful. Consistently in surveys* by patients’ organisations c. 50-74% of patients surveyed were made worse by Graded Exercise Therapy, some even permanently disabled by it. This is why the American CDC* have recently stopped recommending these therapies as treatment.
  • In addition to patient evidence, what scientific evidence shows GET harms ME patients? 
Recent research undertaken in the U.K by Dr Julia Newton and U.S.A by Dr Mark Van Ness* has conclusively demonstrated how over-exertion physiologically damages people with M.E., and gives an explanation why this treatment harms patients. Due to this research the Centre of Disease Control in America has recently removed Graded Exercise Therapy as a recommended treatment for patients with ME. Professor Jonathan Edwards, Emeritus Professor of Medicine University College London, recently stated “When it comes to CBT and GET, I think we need an open discussion on the fact that the evidence is not there.”
While the majority of patients surveyed by the ME Association found ‘Pacing’ (not pushing beyond their limitations) the best therapy for their ME, this is not recommended in the NICE guidelines, and the NICE guidelines claim that GET and CBT pose no risk of harm, despite patient and new scientific evidence to the contrary.
  • How do the NICE guidelines harm patients’ mental and social wellbeing as well as their physical health?
The guidelines have far-reaching consequences and patients report being refused benefits, counselling or house calls from their doctors if they refuse or drop out of GET. Parents sometimes have to choose between making their sick child worse or being accused of Munchausen’s by Proxy for ‘resisting treatment’, and the 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.
It is urgent that NICE:
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
M.E. patients are committed to a rigorous scientific process: the science and the testimony of patients simply does not support the current NICE guidelines for M.E./CFS and they have required change for some time now. Without wishing to unduly influence the end result, we are simply calling for due process and up-to-date scientific research to be considered. To delay this revision any further is to actively harm patients.
We implore you to add your voice to the NICE consultation process, and call for an immediate revision to the NICE guidelines for ME/CFS. Thank you for your time.
Produced by Tanya Marlow and Emma Shorter, on behalf of #MEAction Network. (See references below)

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One Response to ME / CFS Factsheet to Share – NICE is Not Nice to ME

  1. Stephanie 13th July, 2017 at 11:01 pm #

    Very comprehensive and well written. Kudos to you and Emma.

    Honestly, sometimes it’s hard to believe we’re still fighting this nonsense. We can’t give up.

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