The NHS’ NICE guidelines are badly out of date, and only offer two main treatments: Graded Exercise Therapy and Cognitive Behavioural Therapy. We’ve just heard that NICE, despite being due for a revision this year, are intending not to revise the guidelines after all. This is worrying for all patients who have been harmed by Graded Exercise Therapy.

For those who have already signed ME Association’s petition, there is something else you can do – write to your MP.

Right now, the NICE guidelines warn of the risks of rest, but declare Graded Exercise Therapy to be safe. MPs are there to keep the NHS accountable, and warn patients of the potential harms of GET

Here’s how you can write a letter to your MP in just 5 minutes:

a) Click here, enter your postcode, and click on your MP’s email address to email them.

b) Copy, Paste, Edit. Copy and paste the text below, including the factsheet, and edit the first part to personalise it. c) Click send – you’re done.

IMPORTANT: It is imperative that you add your own sentences at the start, and not just the #MEAction Factsheet, otherwise it is just spamming MPs with the same letter.

For your letter, reasons to review NICE guidelines could include: wanting to ban GET and CBT; wanting to inform patients of the harms of GET; wanting a better definition of the illness; wanting to have antivirals or alternative therapies as an option for specialists to be able to prescribe; wanting pacing or rest as an option rather than ‘not recommended’; wanting to stop severe patients from only being recommended ‘Activity Management (which is basically Graded Exercise at a lower level) – or something else. Pick your most important one. It doesn’t have to be long.

COPY, PASTE, EDIT the following:

Dear [name of MP]

I have / My friend/relative has had ME for [XX] years. Before they got ill, they loved to [XX]. Now they can only [XX].

The NICE guidelines need to be reviewed immediately because [____].

Please would you hold the NHS and government accountable for these flawed guidelines, and ask them to fully revise them immediately and place ME/CFS on the active list, to keep up with the latest biomedical research. Please see the attached factsheet from the #MEAction Network for more background and the specific requests.

Yours sincerely

[Your name AND residential address, so they know you’re a constituent]

Enc: Factsheet I endorse from ME Action Network:

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:

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.

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)

https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/ New Scientist: First Official Death from Chronic Fatigue Syndrome

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 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/

http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/ *ME Association: CDC Removes CBT and GET as Recommended Treatments for ME/CFS

http://www.tymestrust.org/pdfs/falseallegations.pdf *TYMES Trust Report: False Allegations of Child Abuse in Childhood Cases of Myalgic Encephalomyelitis

Just copy, paste, edit, and click to send to your MP.

That’s it! Anything you can do will be of huge help, and has the potential to transform 250,000 lives in the UK. And don’t forget to sign and share the petition for a full revision of the NICE Guidelines at Care.org.

Let us know in the comments if you’ve written!

This post was authored by Tanya Marlow, a patient-volunteer for #MEAction UK