ME Association Petition: The NICE guideline for CFS/ME is not fit for purpose… | 10 July 2017

July 10, 2017



Update:
14.15pm 13th July 2017
We have extended the petition deadline to Friday 21st July at 5pm.
This follows the NICE decision to extend their own consultation deadline and because people with ME/CFS had asked for more time to share the petition and hopefully gain yet more supporters.
8,619 people have supported the campaign to date. Thank you all.


Update:
5.30pm 10th July 2017
When the petition had attracted 2,500 supporters earlier this afternoon, we emailed the following update to all our supporters and have similarly updated our followers on social media.

2,500 signatures on our petition at the time of writing! This is a tremendous achievement for so short a space of time. Thank you to everyone who has taken part and to those who have also gone to the trouble of leaving comments.

 

NICE contacted all stakeholders today confirming that “after considering the evidence and consulting with experts, we have provisionally decided not to update this guideline.” 

 

We have been asked to consider their proposal (below) and respond by Friday 21st July at 5pm (slightly less time that we were expecting):
https://www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal

 

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, will be attending a Forward ME Group meeting tomorrow with the Countess of Mar and other ME/CFS charity representatives, when the NICE consultation will be discussed.

 

Over the next few days we will be considering our response and will of course keep you informed. In the meantime, please let others know about the petition and let them know why it is so important that we have a clinical guideline that actually works for people with this disease.

Thank you

The ME Association


The ME Association has today launched a petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.

Recently Dr Charles Shepherd learned that NICE were likely to recommend ‘no update’ to the current guideline. A two-week consultation begins today, but rather than it being part of a full review, it seems likely that NICE will be asking stakeholders to just comment on their ‘no update’ recommendation.

The ME Association has long held that the current guideline is not fit for purpose, and, especially in light of this recent news, many others appear to agree. We decided therefore that a petition might be a constructive way to demonstrate to NICE just how unhappy people were.

As well as adding your name to the petition – which we hope you will – you are also able to add any comments you feel appropriate. We have tried to express the main points of contention we have with the current guideline, and what we feel should be happening, but you may want to say something different.

The ME Association, along with other ME/CFS charities and support groups, are stakeholders in the guideline review process. We will let you know what the consultation is all about and how we are responding to it in a later blog, but in the meantime we will keep the petition open until Monday 17th July.

Dr Shepherd will aim to present the petition to the NICE committee for delivery to Sir Andrew Dillon (chief executive of the NICE guidance executive). It is our hope that even if the consultation does result in no update to the current guideline, NICE will be left in no doubt as to the feelings of those affected by M.E. and that we might then also use the petition in our other lobbying efforts.

Image copyright: ocusfocus/123RF Stock Photo

9 thoughts on “ME Association Petition: The NICE guideline for CFS/ME is not fit for purpose… | 10 July 2017”

  1. Thank you to all concerned – a lot of time and effort required, no doubt. Greatly appreciated.

  2. Kerry Williams

    Dear Dr Charles Shepherd,
    Thank you for generating this petition – a solid proposition. I have now signed and added the following comment:

    Dear NICE,

    I have ME/CFS. But I am one of the very lucky few who is on the slow journey to recovery. Having been utterly abandoned by the NHS, I fund my own treatment following the protocol of a well known US Physician. I am getting there. I’m on my own, with no medical guidance from the UK. It’s scary, but my motto throughout this terrifying illness has always been Winston Churchill’s famous words: ‘Never, never give up’. I can’t, you see. Give up. I have to live. I want to live. I have to live.

    Prior to my getting ME/CFS, my corporate career spanned 20 years in the Pharma industry. In all my time there, not one of the pharma companies I worked for, focused on psychological treatment and exercise as a primary treatment pathway for severe disease. As an adjunct therapy, maybe. But as the only treatment guideline? In this day and age with the staggeringly exciting scientific advances made on a daily basis??

    Dear NICE Reader, consider the following for a couple of seconds: imagine you have a loved one with a disease of similar severity to ME/CFS – (think Parkinson’s, cancer, Alzheimer’s, multiple sclerosis to name a few).

    Now, imagine YOU have to tell them that the only funded treatment available to them is to track their thoughts and do a bit of exercise, and they’ll get better.

    What emotions came up for you just then?

    At the very least, I bet your eyebrows went up. Maybe you scoffed at the thought, felt dread at having to tell them ….imagining the look of despair on your loved one’s face as you deliver the news.

    This is how I felt several years ago when I was offered CBT and GET by the NHS. Total and Utter Despair. And then after that, I got really cross.

    There is a Finnish word, ‘Sisu’, which sums up what each and every ME/CFS individual needs in spades each day – it means “Extraordinary determination in the face of adversity”.

    And when you’re already doing that, doing or being ‘Sisu’ to get through each day with ME CFS, you need the medical establishment to have a bit of ‘sisu’ too. In fact, with this illness, I need you to have a whole load of Sisu.

    It’s time to change. Thank you, NICE for your commitment to action, to changing. Thank you for being my Winston Churchill, and for being Winston to the thousands of others like me in our country who need you to be determined on our behalf.

    In closing, I quote Winston again: We Need YOU”.

    Thank you for not giving up on me.
    Kerry

  3. Thanks to all for this great effort.

    Just to let you know the link to the NICE proposal doesn’t work properly – gets to general NICE site but I can’t find the thing you are referring to. (Could be my brain….needs GET, obviously…..(not).)

  4. Thank you Dr Shepherd. I too have signed the petition, or at least tried to. The little circle on the Google tab is still spinning. My added comment reads…..

    Graded exercise therapy severely disabled my wife. She did have moderate to severe fibromyalgia and M.E. She had had to give up work as an art therapist and carer at a day centre. She enthusiastically and faithfully engaged with graded exercise therapy prescribed by her GP in 2008. Her rehabilitation fitness therapist instructed her to stop as she could see it was doing her harm and she was deteriorating. The deterioration continued for several weeks once she had stopped the GET. She has been housebound and mostly bed bound since. I am a medically and psychiatrically trained doctor. I had to give up work to care for her. We have both employed CBT to achieve the most with our lives despite her condition. We can laugh and smile through the pain, immobility, cognitive blunting and grief for an active, productive life we have both lost. We can forgive the ignorant and misinformed clinicians who have insulted us by insisting that the illness she and I suffer from, in general, has been ‘proven’ to be ‘all in the mind’, a result of some “internalised trauma or grief being expressed as a psychosomatic disorder” or simply a form of acopia. The PACE trial was interpreted by most doctors to prove the psychosomatic nature of ME/CFS even though the researchers emphasised that the effects of the interventions on M.E was less effective than they are on Cancer or MS patients. Then it was discovered that the ‘researchers’ of the PACE trial had committed data fraud and misrepresented the results. CBT and GET were even less effective than they originally claimed AND any evidence that GET caused harm was disguised or camouflaged and lost. The PACE trial has been descredited scientifically and disowned by the publisher. The evidence that GET, and therefore that the NICE guidelines, cause real harm, suffering and disability to patients is now organised and reproducible. The evidence that sufferers of ME are experiencing a metabolic disturbance with neuroendocrine and neuroimmune features is now overwhelming and exciting! The evidence is beyond any explanation through deconditioning or lifestyle choice other than the fact the sufferers tend to be unselfish people, with previous remarkable drive and perseverence able to push themselves physically and mentally through prolonged challenges. That ME/CFS is a physical illness is clear. That it may be several entities, confounding single agent pathological research, is likely. What is certain is, any scientist or clinician who advocates the NICE guidelines in their current form is either ignorant, negligent or intent on causing harm. The GET portion of the NICE guidelines needs removed, at the very least.

  5. Here’s a report from a presentation by Dr Keith Geraghty and Dr Stoyan Kurtev entitled, ‘The Effect of CBT, GET and Pacing Treatments on ME/CFS Symptoms: Analysis of a Patient Survey compared against Secondary Surveys.’
    It concludes:
    “Our results suggest that CBT and GET are of limited benefit in terms of helping ME/CFS patients improve symptoms. The majority of patients experience no benefit. In contrast, pacing brings about the greatest positive impact with the least negative reactions. GET brings about a substantive deterioration in symptoms for around half of patients and it is the least favoured treatment approach, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes. These findings conflict with NICE guidelines and some randomised controlled trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span fifteen years and multiple countries. Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. ALL THREE TREATMENT APPROACHES HAVE LITTLE IMPACT ON DISABILITY STATUS.” [Emphasis mine]

    What I don’t understand is why the information in this report (which is completely consistent with my experience btw), based on 16,500+ patient responses, differs so much from what we see in the ‘surveillance proposal consultation document’ presented to NICE recently.

    https://sapc.ac.uk/conference/2017/abstract/effect-of-cbt-get-and-pacing-treatments-mecfs-symptoms-analysis-of-patient

  6. A statement from Nancy Blake:
    Note on the ME Association petition re closing down the review of the NICE Guidelines:

    It seems evident that the haste to dismiss a potential review of the NICE Guidelines is a response to the publication of the revised CDC advice.

    We need to recognise that those entrenched in the psychiatric establishment hold over ME/CFS risk loss of professional credibility, power and income. Of course they will deploy every weapon available to them to fight off the conclusions of the IOM Report: that ME/CFS is not ‘psychogenic’, and that this disease is defined by the fact that ‘exertion of any kind, physical, cognitive or emotional, may adversely affect many organ systems…’
    This conclusion, backed by study of 9,000 research papers, removes this disease entirely from the remit of psychiatry, and asserts that patients who believe that they have a serious disease in which exercise will harm them are correct in their beliefs.

    The goal set by the current NICE Guideline is to ‘increase activity’, and the means of doing so is through CBT to change the supposedly false beliefs that one has a serious medical condition in which exercise will do harm, and GET, a programme of exercise to challenge the belief that this will do harm.

    The IOM Report makes it clear that this goal and these treatments are exactly the opposite of what the nature of this disease requires.

    There can be no question that these guidelines need to be reversed promptly, to prevent further damage to patients.

    The first step would be to remove all psychiatrists and agencies based on psychiatry from the list of stakeholders: their involvement is irrelevant to this disease.

    We need to respectfully acknowledge that the entrenchment of psychiatry within the British establishment is such that those involved in decision-making at the highest levels will either be part of this powerful group, or potential victims of it. Unlike patients, these people can make or break careers.

    As patients, we are well-informed, intelligent, and experts both on our disease and on the political culture which surrounds it. We lack structural power within the establishment.

    But we understand it well enough to be prepared to pay the utmost respect to those who have the courage and the integrity to challenge it.

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