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Please sign petition to get NICE to remove CBT/GET from guidelines NOW

Countrygirl

Senior Member
Messages
5,400
Location
UK
It is important we sign this one to get CBT/GET removed from the NICE guileimes before more people are harmed.

Please sign it Everyone and share it with friends, family and other ME people.

Thank you!

https://www.change.org/p/nice-stop-...re_for_starters_page&utm_content=ex71:control


NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until 2020. Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful.

Stop harming patients. Take CBT/GET out of ME/CFS guidelines now! Continuing to recommend GET in the face of evidence of harm amounts to MEDICAL ABUSE and VIOLATION OF HUMAN RIGHTS.



See the evidence for harm here:

http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full

See the Parliamentary debate on the PACE trial and the harms of GET here:

http://bit.ly/2oi5b1t




  1. Robin Brown started this petition
Reasons for signing

Anthony Bradstock·6 minutes ago
Read more" >Whatever happened to "First do no harm" ? PACE trialists WILL be brought to account. You can be part of the solution, or continue to be part of the problem and be dragged down along with Peter White et al.



Laura Whittington·6 minutes ago

Invest in ME Research, an ME charity which conducts biomedical research into ME have recently requested that NICE retract the existing guidelines and/or edit them to state that they are under review and CBT/GET are no longer recommended treatments. Currently all NHS clinics in England use CBT and GET (or activity management) as recommended treatments. These all follow the "biopsychosocial" (BPS) model of this illness. Dr Mark Baker, Director of the Centre for Guidelines at NICE have responded to a letter from Invest in ME Research saying that ME patients could lose treatment clinics if the guidelines were removed before new guidelines are laid out. He argues that commissioners are seeking every opportunity to disinvest in ME services and would use the lack of current guidelines as an excuse. Given the harm caused by both CBT and GET I agree with Kathleen McCall, the Chairman of Invest in ME Research that it would be an advantage to sufferers if it was stated that the guidelines no longer contain CBT and GET and would therefore open up the possibility that doctors could treat symptomatically and have wider freedom to do so. Currently there are also families who are being forced to accept these treatments even though they are not proven effective and have been proved harmful in most cases. Particularly schools are unsympathetic to low attendance and in my daughter's case even the Hospital School Service base their assumptions on this biopsychosocial interpretation of the illness. This lack of understanding and assumption that the best thing would be to increase or encourage activity is particularly debilitating for an ME sufferer. " data-height="120" data-read_more="Read more" data-render="true" style="box-sizing: border-box; overflow: hidden !important; max-height: none; word-wrap: break-word;">After a review of the PACE trial results NICE have stated that they intend to update their guidelines for the treatment of ME/CFS. The first meetings to discuss review of the guidelines are planned for September or October 2018 and the new... Read more

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26 have signed. Let’s get to 100!



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Robin Brown signed this petition

Today: Robin is counting on you
Robin Brown needs your help with “NICE: Sto
 
Last edited:

NelliePledge

Senior Member
Messages
807
Tom Kindlon has posted on Twitter and Facebook now heading to 3700. Please sign if not already done and remind your contacts. Sometimes people forget to sign or don’t see your posts so reminders are worthwhile.

This is not a petition to Parliament so open to people outside the U.K.

@JenB please can you post
 

1gooddog

Senior Member
Messages
200
Location
Olympic Peninsula, WA
As a longtime patient, now relatively bed ridden, who has been put through the wringer multiple times by docs who don't recognize and charlatan psyches profiting on their misinformed and misguided ego driven diagnoses, I fully support this petition.
 

1gooddog

Senior Member
Messages
200
Location
Olympic Peninsula, WA
Oversolitiousness and reinforcement of unhelpful illness beliefs. Who in this universe has that quack hack been speaking to?! Believe me, and I assure you there were few if any that received this. I was on my own, managing symptoms, told it was in my head and depression and anxiety the cause, not the result of. Dear God in heaven, who doesn' get depressed from an illness that has turned their life upside down only to be told it in our head. I had a strong desire to hurt someone in the quack field after repeatedly hearing this. And I hated the drugs from those fake docs that put me into brain fog which was certainly not what I needed. Funny thing is I used terminology and symptoms that were unknowingly the same as you all use.
 

NelliePledge

Senior Member
Messages
807
Hi @JenB i see you’ve been tweeting a lot about GET and CBT. This petition is aimed at NICE asking them to do something about the current recommendations before the new guidance is written. It is very important that at a minimum there is a warning that harms have been reported as recently diagnosed people continue to be put through these approaches. Please can you help raise awareness of the petition. I know a few folks have contacted you about this by twitter and Facebook and through MEAction. I realise you’re busy but this petition,which has been started by a U.K. Doctor with ME who wrote a book about her experience, doesn’t have an organisation to promote it it is grassroots advocacy yet has still achieved over 4000 signatures. It has been retweeted by a few organisations but it would be really helpful if you could highlight it too.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I just received this from NICE regarding how/when to make comments:

You are able to feedback your comments as an individual, however, you would need to do this when the public consultation is open. For the draft scope the dates are 21 June to 19 July 2018. I should make you aware that, as explained in our guidelines manual, although NICE will consider comments on the draft guideline from individuals, we do not have the resources to respond to comments on an individual basis, and they will not be published on the website alongside the comments received from stakeholder organisations. NICE formally responds to consultation comments from registered stakeholders, and these responses are published on the NICE website. This is in line with the processes we have agreed with the Department of Health and Social Care.

External stakeholders register their organisation with NICE because they have an interest in a particular topic, or they represent people whose practice or care may be directly affected by the guideline or quality standard. We are unable to provide contact details for these organisations because the volume of stakeholder organisations we interact with would make it very difficult to maintain this information accurately. I suggest you consider which organisation most represents your views and share your feedback with them if you want to receive a formal response