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

@adambeyoncelowe @Keela Too
Not expecting you to respond to any of this, just wanted to say i am thinking of you both & how stressful this must all be for you

 

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

 

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.

 

Fantastic @Trish I hope you manage to submit & it get published asap.

 

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?

 

I had thought there were 4 patient reps, including Charles.

 

You may well be right, but the article states 5 lay members plus a co-opted member of the MEA.

We know how scrupulous the BMJ is on matters of fact.

 

Yes, it is depressing.

 

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

 

"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!

 

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?

 

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!

 

I'm not really up to reading thru all this atm, so can i ask a quick question: is any of this likely to make any difference to anything important?

 

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

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.

 

A very well reasoned argument from Brian Hughes in his article.

I hope it gets wide distribution.