Send a message of thanks to NICE committee members

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After 3 years of hard work by an independent guideline committee, the new ME/CFS guideline, published by the National Institute for Health and Care Excellence (NICE), contains major improvements.

Work must now take place to ensure this guideline is implemented accurately and with people with ME at the heart of these projects. #MEAction UK will be working towards this in the coming months. You can read more about the guideline here.

But first the committee members who have fought so hard to improve this guideline deserve our thanks.

Write your message to them below.

We’d particularly like to highlight the work of the 5 lay members:

  • Saran Bonser
  • Sally Burch
  • Dorinda Jack
  • Nicola Kidby
  • Adam Lowe

And the Chair and Vice-Chair: Peter Barry and Ilora Finlay. As well as the remaining committee members and NICE staff who helped to ensure science won over stigma.

Send your message of thanks below, and see what other’s are saying.

Your messages

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36 thoughts on “Send a message of thanks to NICE committee members”

  1. Thank you all so much for your work in getting the guideline updated. From a parent of a young person with ME it gives me hope for better care and less stigma in the future.

  2. Thank you so much to everyone involved for all their hard work and support! It means more to me than I could say.
    Living with this illness is a nightmare, and it was so disturbing to see so much unnecessary harm being done to the community.
    People like us with such a debilitating disease shouldn’t have to fight to be treated properly, like other chronically ill patients.
    Again, thank you!

  3. Thank you so much for all your time and effort in putting together the new guidelines. It’s very impressive that they were robust enough to survive the nail-biting round table discussions, and hopefully they have emerged even stronger. I have no doubt the new guidelines will prove to be the watershed in the treatment of people with ME/CFS.

  4. Thank you all so much for all your work in finally allowing ME patients to avoid damaging treatment and to be believed. That should be the baseline of any patient care – for us as a community, it’s almost a miracle after so long. Thank you.

  5. Thank you for all your hard work especially in the face of the round table meeting. You’ve given the sufferers and carers do this awful illness hope.

  6. Thank you for seeing this through despite the huge challenges you have endured in getting ME /CFS acknowledged and understood from the GET and CBT angle. This means so much to all of us who have suffered neglect and malpractice at the hands of our doctors. I feel confident to speak to GPs at my surgery ( in the UK) without all the usual disbelief that has happened in the past.

  7. Heather D Escontrias

    Thank you for all your hard work. Even though I live in the US, I believe that any gains we have for the ME community globally will benefit us all. Intuitively, we know that GET harms us. Now, we have people in the medical community responding to the hard evidence of the damage that can be done. Thank you!

  8. Thanks for your work with NICE to update those long outdated and harmful guidelines. This has been a long journey, to break the spell of psychologists, get away from “eminence-based medicine and onto evidence-based medicine.” That is a phrase I borrowed from a pithy observer. I think also of the volunteers who obtained the data to show the errors of that 2011 paper falsely supporting GET and CBT as treatment. This marks an end and I hope a new start as well.

  9. Heartfelt thanks to all for a job well done,a job that should never have needed to be done in the first place. The fight to ensure implementation now begins. I see that the newly amended advice on the NHS site still gives GET an honourable mention. It now merely states that it is “no longer recommended for everyone with CFS/ME.” I suspect many specialist clinics,and other clinicians will exploit this loophole and continue the evil practice on a wide scale.

  10. Jill Marie Jarvis

    Thank you so much for all the time and effort you all put into this for us. There aren’t enough words to express how grateful I and other sufferers are for what you have achieved. This will never be forgotten by any of us. Thank you x

  11. The work you do is honestly what keeps me going. Knowing there’s someone out there even believing us , let alone fighting for us is absolutely God sent in my opinion. Thank you so much for getting these guidelines changed it means so much to me. Bless you all x

  12. OMG you have transformed the entire universe, from my perspective!!! and shown how bit by bit the world can change. I remember once hearing that Ibsen, a famous playwrite, said that it took 25 years to make a change. I think it takes longer, and you hung in! Thanks so much. Bobbi Ausubel , San Fran, CA

  13. Thank you for your persistence in this cause. Such an important act of activism and lobbying.
    A GP’s advice to exercise sent my son into 7 years of decline which was the worst advice he could have had, thankfully nearly 12 years after onset he manages his condition and has a future.

  14. I was so happy when I heard the news last Friday! I couldn’t believe that it was true, that finally no one will ever be ‘prescribed’ GET and CBT to cure ME/CFS. I was probably one of the last to be offered this horrible treatment and to be affected. My heart can rest now knowing that no one will ever suffer what I have. Thank you all so much for your hard work! 💗

  15. Thank you all so much for all your trouble, time and hard work. May God Bless you. It means so much to each and everyone with ME and gives hope to them and their families.

  16. Your steadfast, principled work in holding the line for our survival and for recognition of the prejudice and ignorance people with ME/CFS face has been monumental. You stood up to the vested interests of some clinical cliques and pushed back against the bullying. I am very very grateful. The new guidance is proving helpful in my ongoing legal fight for a care package. Even if some clinicians and social workers continue to use the loophole to try to enforce GET, we have a backed up argument to defend ourselves. It must have been exhausting but finally exhilarating. Celebrate yourselves! Love, Nicola

  17. Thank you for your heroic effort, & sacrific, & work on behalf of all ME patients. Well done! We all owe you a huge debt of gratitude.
    Ani Sangye, Cape Town, South Africa

  18. Heartfelt thanks to all who worked so hard,and for so long to have the 2007 guidelines amended! It has given hope at last to the many largely ignored sufferers of this innocuous disease. The battle to have the new guidelines implemented begins now,so that all the dogged hard work is not wasted. The psychosocial lobby has not,and will not go away you know! The newly amended official NHS website on CFS/ME still doesn’t state clearly and unequivocally that CFS/ME is a physical,biological medical condition rather than a psychological one. It gives CBT pride of place at the top of the list of available treatments (with a link for further information etc). It also persists in giving GET an honourable mention,stating merely that it is,” no longer recommended for everyone with ME/CFS.” A loophole which many clinics and clinicians may sadly seek to exploit. However,we must extend our deep gratitude to all those who have strived so hard against the odds to produce the new guidelines,and have them published.
    Ciarán Vesey

  19. Thank you so much for fighting for us.
    We are amongst the sickest people in the World with the least help.

    This is the best thing thats happened in the
    30+ years I’ve had M.E .

    I can’t thank you enough

  20. Thank You so much from a ME bedbound sufferer! The amount of abandonement and misstreating we are suffering is even worse than the illness itself (which is a lot to say). Thank you for help us!

  21. My deepest heartfelt thanks to everybody involved in achieving this momentous change of direction.

    Words cannot express the deep gratitude I feel, as I know that this must have been a Herculean effort to keep fighting on through the brain fog and exhaustion. You have all persevered through this long process so tenaciously and with dignity for the good of us all.

    These changes to NICE guidelines give new hope to all people with ME and any other post viral illness, eg long covid. We can now apply more pressure for research funding now that CBT and GET have been finally shown to be damaging not helpful.

    My own experience of naively following the past recommendation to use GET resulted in reducing me from partial mobility to be permanently dependant on wheelchair when not bed bound, so great to know future people with ME are less likely to be guided down this harmful GET route.

    As GET/CBT are no longer recommended, there are currently absolutely NO treatments in existence that have been proven to help with ME. We can now use this fact to put pressure on governments to move us near the top of the biomedical research funding allocation.

    This is all thanks to your tenacity and hard work!

  22. Daniel van Rooijen

    From the Netherlands, my heartfelt thanks and admiration for your terrific work, the positive impact of which will be felt around the World. I have high hopes that we’ve finally reached a turning point in how ME and its patients will be perceived and treated.

  23. I’m truly grateful for the tremendous number of hours you have all put in to get us to this place of recognition and (I hope) safety from this point on. My only minor disappointment was that there wasn’t more on pacing using a heart monitor which I hope may feature in any future updates. Thank you for the evidence. The research. The thoroughness. The tenacity. And standing up to the BPS bullies. You should be very proud to be a part of the solution and not a part of the problem. I honestly can’t thank you enough

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