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

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NelliePledge said:
Didn’t the patient reps resign off the 2007 review?
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Tanya Harrison.

On my old MEagenda site:

https://meagenda.wordpress.com/2007...om-tanya-harrison-to-nice-guideline-on-cfsme/

BRAME: Personal Response from Tanya Harrison to NICE guideline on CFS/ME
BRAME Blue Ribbon for the Awareness of ME

Personal Response to the NICE Guidelines on ME/CFS

As you are all now aware, I have resigned from the NICE Guideline Development Group (GDG) on ME/CFS (August 2007). I originally requested that a statement went in the guidelines “Tanya felt unable to agree with the content of these guidelines”, as I felt that I could not sign up to the guidelines, but did not want to resign, as I was, and still am, willing to be part of future re.writes/redrafts, which I feel are inevitable. However this option was not available to me, and therefore I felt that I must resign, as I could not sign up to the guidelines. I hope that you will understand that I was not able to make my decision known until today, the date of publication for the guidelines, as I have always adhered to the confidentiality that was expected from being a member of the GDG.

I know that many of you will question why I did not resign from the GDG sooner...

Full text
 
Trish said:
Damn. I just spent ages writing a rapid response and lost it when I tried to submit it, getting a server error message.

I should have kept a copy.
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Have you tried Google Docs? I use this for finished docs and for drafting. It saves text regularly and you can pull up copies of previous drafts and revert to earlier iterations. I find it stable and fairly easy to find your way around. It also exports to various doc formats, including .docx and PDF.
 
I had another go at writing a rapid response, started again, filled it all in correctly and submitted, only to get the same error message. I remembered to take a copy this time, so I'll dump it here.

Dear Editor
I would urge readers not to take at face value this highly biased article.
Instead, I suggest you read the Expert Testimony to the Guideline Committee of Professor Jonathan Edwards.
https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3

Far from being influenced by a few disgruntled patients, it is clear that there is no valid clinical trial evidence supporting Graded Exercise Therapy or Cognitive Behaviour Therapy for ME/CFS. Millions of pounds have been spent on trials to try to prove effectiveness, but even using subjective outcome measures on open label trials (which would not be accepted as valid evidence in any drug trial), only small transient differences between treatment groups and control groups were found. These were no better than placebo effects, the differences vanished by long term follow up, and they were not supported by objective measures such as increasing fitness or return to work.

There is extensive evidence that some ME/CFS patients health is significantly worsened long term by trying to increase activity as recommended in these therapies.
https://meassociation.org.uk/2019/0...urvey-on-cbt-and-get-in-me-cfs-03-april-2019/
If some doctors and therapists who practice these therapies cannot accept that they have been getting it wrong for decades, and likely harming some of their patients, they no longer deserve to be referred to as experts in ME/CFS.
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Dx Revision Watch said:
Tanya Harrison.

As you are all now aware, I have resigned from the NICE Guideline Development Group (GDG) on ME/CFS (August 2007). I originally requested that a statement went in the guidelines “Tanya felt unable to agree with the content of these guidelines”, as I felt that I could not sign up to the guidelines, but did not want to resign, as I was, and still am, willing to be part of future re.writes/redrafts, which I feel are inevitable. However this option was not available to me, and therefore I felt that I must resign, as I could not sign up to the guidelines. I hope that you will understand that I was not able to make my decision known until today, the date of publication for the guidelines, as I have always adhered to the confidentiality that was expected from being a member of the GDG.

I know that many of you will question why I did not resign from the GDG sooner...

Full text
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Thank-you for the link to the full text. I have read it. I am very sad reading that from 2007. Conversation is the same; there has been so little progress it seems. Hard to read.

2008 was when I became severely ill. How many of us could have been helped?
 
Trish said:
I had another go at writing a rapid response, started again, filled it all in correctly and submitted, only to get the same error message. I remembered to take a copy this time, so I'll dump it here.
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I have now had an email saying my rapid response has been accepted. It must have been one of my earlier versions that I thought hadn't registered. Can't remember what it said!

Correction: I misread the email. It's an automated response that says ... if it is accepted we will post it ...
Edit: And then I received another email. Looks like 2 of my attempts got through. I'll leave them to sort out the mess up.
 
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Jonathan Edwards said:
I had thought there were 4 patient reps, including Charles.
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Five Lay Members plus Dr Shepherd:

https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list-3

Lay member Saran Bonser
Lay member Sally Burch
Lay member Nicola Kidby
Lay member Adam Lowe
Lay member Dorinda Jack

Community paediatric nurse
Not appointed

Co-opted members
Physician with an interest in ME/CFS (coopted member)
Charles Shepherd Honorary Medical Adviser, ME Association
 
Adam pwme said:
Full text

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"raise questions about how the evidence could have shifted so substantially"
Well maybe a redraft
"raises significant questions about the quality of the review which led to the 2007 Guidelines"
I.e. how come the "experts" who conducted the review which led to the 2007 Guidelines didn't spot the fact that the "evidence [including PACE] was low or very low" quality?

"how the evidence could have shifted so substantially" as above

"unusually high number of patient representatives, prompting suggestions that this may have led more weight being put on patient views than on published scientific evidence"
Actually if one person responds and their input provides significant evidence then that's supposed to be enough - umpteen people making irrelevant points shouldn't sway a committee.

"centre for evidence synthesis in Global Health" - say's it all really --- "synthesise" to "make (something)" -- well seems to sum up what they did!
 
Ariel said:
Thank-you for the link to the full text. I have read it. I am very sad reading that from 2007. Conversation is the same; there has been so little progress it seems. Hard to read.

2008 was when I became severely ill. How many of us could have been helped?
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It is very depressing. What gets me is that I was diagnosed in 1984 just at the time when scientific interest was being taken into ME as a diseases that needed proper scientific research. If it had received a fraction of the biomedical research money it deserved due to the number of victims and severity of the disease where would we be now?
 
Mithriel said:
It is very depressing. What gets me is that I was diagnosed in 1984 just at the time when scientific interest was being taken into ME as a diseases that needed proper scientific research. If it had received a fraction of the biomedical research money it deserved due to the number of victims and severity of the disease where would we be now?
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Absolutely. I got ME in 1983, it was considered a physical illness, and the research being conducted was biomedical. The psychiatrists barging in, the renaming to 'CFS' and the notion that CBT/GET was any kind of 'treatment' for this serious physical disease, had not yet happened. Yes, if only biomedical research had continued and psychs hadn't been allowed to hijack it all. By now there would have long since been valid treatment, and those with LongCOVID would be helped instead of thought of as some new mystery (or written off as anxiety like most of us were). Depressing indeed.
 
My son became ill in early 1999, a couple of years after the publication of the Joint Royal Colleges 1996 Report. It was one of the first documents I downloaded, in 1999, on ME, CFS. I can remember feeling shaky as I read it.

22+ years later, we can look forward to Dame Clare Gerada taking up the position of President of the Royal College of General Practitioners in November. Aaagh!
 
Yes it is depressing how difficult it is to achieve change but the point I was trying to highlight is this time it is the staff not the patients who have resigned and I’m thinking that is possibly a positive sign.

unfortunately fighting the U.K. establishment for change is in many cases - Hillsborough, infected blood etc a process of multiple decades chipping away with some bigger steps forward. I’m still hopeful that the new version of guidelines will be a positive step away from the status quo
 
Brian Hughes in his ever inimitable fashion points out the failings of the BMJ’s recent article suggesting the three NICE guideline committee resignations indicate the failure of the entire process, see his Blog The Science Bit
https://thesciencebit.net/2021/08/0...q7Qd_HUAT8oaEvYuuFheO3eHIN4Vw0FEkNP7SfVF7OET4
https://thesciencebit.net/2021/08/0...q7Qd_HUAT8oaEvYuuFheO3eHIN4Vw0FEkNP7SfVF7OET4

Is it just me, or is the BMJ’s take on those NICE guideline committee resignations maybe a little biased?

… … …

It is ironic that the ME/CFS dispute, at its core, is an argument about the merits of cognitive behavioural therapy. In CBT, it is often said that “you can’t control events…but you can change how you interpret and feel about them.”

It seems to me that the lingering clique who are intent on retaining CBT as a core treatment for ME/CFS are especially adept at employing this very strategy themselves. They have an uncanny knack of seeing the same facts as the rest of us — but of interpreting them in ways that advance their own cause and which boost their sense of self-worth.

In a clinical context, this would be called reframing.

In journalistic contexts, it is called bias.
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We just need to ensure at least as many people read this as read the original article.
 
That was a good point by Brian. The details are supposed to be secret. So do they know things they shouldn't know? Or are they just speculating? And which is worse? Because neither are defensible. But since they don't have to defend anything I guess it just doesn't matter.
 
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