All I want for Christmas is #ScienceNotStigma

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This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff at NICE have responded to our objections by telling us to trust them and wait almost 2 years until the next formal opportunity to comment. However we will not be silenced.
Join us in adding NICE to your Christmas card list. Send a Christmas card to NICE staff telling them why those who have championed the ideas and treatments that have harmed our community should not be writing the guideline that will influence treatment for decades to come.

Tell NICE that we will not be silenced
Feel free to write your own message but we suggest starting with: “I [/my friend/partner etc] have had ME since (year)]. All I want for Christmas is an unbiased NICE committee willing to change the status quo in line with current research and patient experience. ”
It could be good to add a couple of facts about the impact ME has had on your life, if you have room.
When you’ve written your card, take a photo and post it on social media! Use the hashtags #ScienceNotStigma and #NotNICEforME. If you’re on Twitter, tag @NICEcomms. Post on Facebook and then also share to NICE’s page.
Once that’s done post your card to one of these people, or write to each:

Paul Chrisp
Director, Centre for Guidelines
National Institute for Health and Care Excellence
Level 1A, City Tower
Piccadilly Plaza
M1 4BT
Norma O’Flynn
Chief Operating Officer
National Guideline Centre*
11 St Andrews Place
Regent’s Park

*The National Guideline Centre has been contracted to carry out the ME review on behalf of NICE.

The Full Story: NICE Dismisses Thousands of Patient Complaints

Last month, NICE appointed a committee rife with bias to write their new guidelines on ME. In response we started a campaign to get the committee changed, and over 2000 of you have emailed NICE demanding they reassess the appointments to the committee.
Since then more appointments have been made. We welcome the addition of William Weir to the committee as a full member and Charles Shepherd as a co-opted member, as well as Jonathan Edwards and Greg Crowhurst as expert witnesses. However, only full committee members can vote, so these additions do not address the bias of the committee nor counteract the serious conflicts of interest other members have.
Last week NICE staff responded to our emails and a few days later issued a public statement with the same content. In their stock response they refused to acknowledge the problem, take any steps to address it or even engage with the community.
The standard email they are now using to reply to all enquiries says:
“I hope that you will allow the guideline committee to begin its work and judge it not on the basis of your views of those who sit on it, but by how it interprets the evidence and the way in which it takes account of your perspectives and experience, when you have the opportunity to comment on the draft recommendations.”
It is not our ‘views’ that cause such concern, but a history of poor science, bias, and conflicts of interest. The opportunity to comment on the draft guideline is a mere 6 weeks, with no assurance that any comments will be taken on board. This attempt to brush off the community’s concerns will not work. Now is the time to keep up the pressure, we will hold NICE accountable at every turn.
We cannot wait passively for 2 years whilst this committee defines our healthcare, when their previous guidelines have caused untold suffering, neglect and harm. ME patients have been harmed for too long. People at NICE must act to stop poor science, bias and conflicts of interest from dictating people with ME’s healthcare.
NICE are picking procedure over people. Their inaction is costing us our lives.

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7 thoughts on “All I want for Christmas is #ScienceNotStigma”

  1. Good luck to you all with this campaign. I wish I could take part, but it means so much to me that paradoxically, I can’t cope with the emotional energy needed for it. This Boxing Day is my 25th ME anniversary.

  2. On December 21st 2018 @ 2.02am I have had M.E. for 30.5 years. I have been severely effected for 75% of that. I got this awful illness at aged 15 and I have never been to all night parties night clubs and never had a proper boyfriend. Growing up I used to dream of getting married and having a baby. None of that has been possible as I am just too unwell. This will be my 30th Christmas with this condition and if I am having a rare good day I get to join the rest of my family round the dinner table instead of in bed being spoon fed.

  3. After 23 years of having ME and being made more ill from GP advice to exercise, I expect NICE to examine the growing body of biomedical evidence about this devastating illness. I have very little confidence you will do this, however, as you are so biased and blinkered. Currently reviewing litigation for damages caused by NHS advice.

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