NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Suffolkres said:
Just saying and pondering what I should do as I cannot do justice to a fulsome response on behalf of our group in the current time frame.
Options;
  • Bang in a very rough and ready with a corrected one later?
  • Not bother as it would be worse than doing nothing to do a rushed job
  • Put in a response from us by deadline but erroneously fail to attach response file .......
  • Comments/advice welcome
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I'd say focus on one or two sections that your group thinks it's most important to get changed with clear explanations, and leave the rest. And if you are able to, write a general comment about the whole guideline and overall changes of direction in the guideline your group would like to see, again with clear explanations. But I have no inside knowledge from NICE about the best strategy.
 
@Suffolkres

Did they say why you weren’t allowed an extension? I too wish I could get one. There’s lots of things happened over the past 2-3 weeks and I would like to write a submission about how I think the access to care section and even the severe ME section needs to be strengthened substantially. But I’ve only got 2 days and need time to think properly and write it.
 
Andy said:
Deadline: 5pm on 22/12/20
Details here, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-2

There is a link at that webpage to the submission form.

I can't really help more than that as I've not been involved in the process and enormous amount of work that our team have done and are doing.
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Does anyone know how to actually use the form they link to?

https://www.nice.org.uk/guidance/GID-NG10091/documents/comments-form

How do I write in it? It’s a pdf. Tried to find instructions and can’t?
 
Trish said:
I'd say focus on one or two sections that your group thinks it's most important to get changed with clear explanations, and leave the rest. And if you are able to, write a general comment about the whole guideline and overall changes of direction in the guideline your group would like to see, again with clear explanations. But I have no inside knowledge from NICE about the best strategy.
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Also write in your response that you are unable to comment on all the parts you would like to due to the time constraints imposed on you by the short deadline.
 
Andy said:
It's a Word document for me. I've attached it below in case that helps.
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Thanks Andy. After how I feel this morning, I think that I won’t be able to do a submission in time, even a short one. It’s too much for me right now, I just got over enthusiastic thinking I could do it. But there’s no way. It’s ok, I’ll just write my thoughts and post it on the forum when I can.
 
This is why the NICE guidelines need to be really, really strict in what they say about Hospital care. I just got another “final offer” from the NHS hospital telling me they couldn’t definitely get a room but may just try to give me one on the day. This is after the other Hospital was going to tell them to provide me with “reassurance”. All I can say is, they don’t get it. Doctors and medical staff do not understand how vulnerable we are to harm and that I cannot go somewhere if I’ll be put on a ward and I will get worse. I was having to go through old emails yesterday and it made me cry, reading how much I’ve had to write to them and how desperate I’ve been, and what they were replying to me with or just ignoring me. Honestly at this rate I would question what I would even do in an emergency. I find it so hard to even tolerate the lights in my flat’s lift for gods sake, and that’s a few seconds.

The only protection for us is the NICE guidelines so it’s so important to get it right. :pensive:
 
Article written by Jerome Burne
The long march by patients to prove that the official treatment for ME/CFS was wrong and damaging. [Repost]
By Jerome Burne

A long-running battle between patients and therapists over the best way to treat debilitating chronic fatigue was won by the patients back at the beginning of November. In a dramatic U-turn, the NICE guidelines on the best way to treat ME (Myalgic Encephalitis)/ CFS (Chronic Fatigue Syndrome) were reversed.

Out went GET (Graded Exercise Therapy) – doing a bit more every day – and in came advice to only exercise as much as felt comfortable.

What hasn’t been made clear in reports of the change is that it was the culmination of a remarkable coup, pulled off four years ago by a group of ME/CFS patients, which had forced ME/CFS therapists to release the raw material collected during a trial that supposedly proved that GET was scientifically based.

The therapist said it proved the treatment worked, the patients claimed they found the treatment so ineffective and unpleasant that the results must be false.

The patients then had the full data reviewed by independent experts who reported that the results had indeed been “adjusted” to make them more favourable. The therapists dismissed the review as wrong and irrelevant.

At the time the story was almost completely ignored by newspapers and TV, with the exception of the Daily Mail which carried a story of mine.

The victory last month, which removed GET, came in a provisional review of the best treatment for CFS/ME. The patient activists, who had been campaigning for this change for years were on the committee that drew up the new guidelines.

I’m republishing an edited version of my September 2016 blog,which tells the story of the patients’ coup. Partly because their part in the guidelines U-turn has been effectively air-brushed out but also because it seems very relevant in the current climate when opposition to official medical views are routinely dismissed as fake and foolish or malicious. It’s a welcome reminder that the official view can be damagingly wrong and the patients and others who make informed criticisms deserve to be listened to.
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https://healthinsightuk.org/2020/12...ment-for-mecfs-was-wrong-and-damaging-repost/
 
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Looking back at the 2016 link, there is a comment by "Ian" on 30 Sep 2016 that I'd better not repeat here. But amongst all the other excellent comments, this one really tickles me as a very eloquent piece of Anglo-Saxon, that in a way says it all :).

And of course, very well done to Jerome Burne for writing about this again.
 
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Jonathan Edwards said:
Jerome emailed me to say that the papers were being slow to take stuff - presumably with Covexit and Brid-19 and all so he put this on the blog. Hopefully he will get a piece in a daily shortly.
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Just a few things re his piece;

"patients and therapists over the best way to treat debilitating chronic fatigue"

"ME (Myalgic Encephalitis)"

"The therapist said it proved the treatment worked, the patients claimed they found the treatment so ineffective and unpleasant that the results must be false."

"The patient activists, who had been campaigning for this change for years were on the committee that drew up the new guidelines. "

I am concerned about the way he has phrased this that implies (what a number of the bPS opponents of the new draft have been saying) that the changes have only come about because of a few patient activists on the committee.

(I don't know if Jerome Burne is aware of the recent articles (eg BMJ).)
 
so far only one reply to JBs piece
  • Malcolm Kendrick 24 Dec 2020
    Excellent reporting as usual Jerome. I did some pro-bono work on this years ago criticising the NICE report – which was absolutely dreadful. This was for a challenge in the high court to the guidelines.

    The entire argument for the cost effectiveness of CBT/GET was based on one study of two hundred people in Belgium. The population were not matched properly (the treatment arm had a lower quality of life to start with), they got key figures upside down. It was a most terrible mess. The court decided that they could make no comment on the scientific data, or how it was reviewed, they could only make a judgement on whether or not NICE followed their agreed processes – which they did. They consulted with the key stakeholders, they reviewed all the data, they held ten meetings big enough to have an agreed quorum – whatever.

    The decision essentially meant that only NICE could decided whether or not the NICE guidelines were correct. Of course, NICE did decided that their guidelines were correct – as they always do. Who guards the guardians, and all that. The High Court backed off making any judgement on the guidelines themselves.

    I always knew this area was nonsense. Finally, it has come to pass. In part due to your own work. Good timing probably, because all of the people who are being left with long COVID were probably going to be forced into CBT/GET if they fail to recover.
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https://healthinsightuk.org/2020/12...reatment-for-mecfs-was-wrong-and-damaging-rep
 
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