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

Re the neurologist quoted in the Times
Send in the clowns - or, in this case, the neurologist ---
"some people find them helpful" --- great qualified support - I can find 1 person who found it helpful therefore the statement is correct!
"I don't think the voices of patients have been heard" --- a (small) minority of people with ME/CFS may support CBT/GET as an effective treatments however, the vast majority of people do not. Even if someone found CBT/GET effective the clinical trials didn't --- medicine is based on clinical trials --- as far as I'm aware;
"for people to resign at the 11th hour is unprecedented and represents a total failure of the NICE process"--
@Michiel Tack mentioned that another review (Holland?) had resignations just before the draft was endorsed --- so not unprecedented.

I'm thinking of responding to this --- never thought I'd respond to a Times feature ---can you respond if you are not a subscriber - or can I get a free trial and cancel?

 

Do we need several new threads? At least one on the responses to the new Guidelines and another on how services can be developed to bring them into line with what will tomorrow be the current guidelines.

 

Indeed, it's ambiguous in the print version of the article whether Dr Jo was referring to the original NICE CG53 2007 version or to the updated version being released, tomorrow.

 

I am not sure I have seethe whole article? All I have seen is the screenshot on the previous thread page. Is there more? I do not have access.

 

Our staff have a number of new threads planned which will be implemented in due course.

 

Seems a "MichaelS" is commenting to @Jonathan Edwards on the online article. From Twitter:

 

Sharpe's Twitter account is:

michael sharpe
@profmsharpe


That MichaelS account does not appear to be from a Twitter account. I've asked Matthew Dalby where his screenshot comes from.

 

@Andy just wondering if anyone is planning to respond to the article in the Times? More generally are you guys planning on responding to these type of articles over the next few days?

 

My apologies, I wasn't making myself clear. These are screenshots from the online article found on Twitter, is what I meant

 

It looks like it could be from the Comment section on The Times article, but I can't see the Comments.

 

Matthew Dalby clarifies:

"It's just a comment on the Times newspaper article. The author of the comment was only implied."

If that Times Comment has been authored by Sharpe, himself, I think transparency should be expected. He should have put his full name to it.

 

That looks like a screenshot of the reply from Sharpe on the Times e-version.

If anyone wants to tweet response to Sharpe's: Someone should tell Professor Jonathan...

I would love to say:
If it was well known that there is no other measure why did PACE set up actometry and abandon it when a Dutch study failed to show a positive? Methods differ between specialities but reliability of evidence is not negotiable (see my NICE testimony).

 

"CBT....should only be offered to support patients in dealing with the anxiety of being ill." (Italics mine)

If that is what the end text will say then the BPS crew has had their weasle point put in. That's will be the angle. Or, if not altered, then it will be the angle in the expected media attack.
Because the whole point of CBT was to deal with the health anxiety (hypochondriasis with hysteria flavor) that, according to their bullshit, causes the "illness behaviour": the symptoms (fatigue, from supposed avoiding of activity for no good reason), or the overly dramatic reaction to no-big-deal-everyday symptoms.

Original draft text:

"Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS." (Again, italics mine.)

A totally different meaning. Anxiety vs normal emotional distress from being ill and everything that comes with that. (Which a patient may or may not need help with. And would not be helped with if dealt with as anxiety.)

And of course discussing that point will lead to more nonsensical and dramatic "ME patients are discriminating against mental health issues" posturing.

 

Sharpe, Wessely, Chalder, White and co are sweating bullets right now. The medical community is about to find out about the biggest medicine travesty, and they are still trying to run away with it. They are likely going to say that patients were given too big of a voice on the NICE committee, and that they still stand by their ‘beautiful’ trial. They may even try to say that they have received death threats in the last week.

 

A press release/statement has been prepared by our Guideline team and approved by the committee. This will be sent, embargoed, to a number of contacts today and released publicly tomorrow. In general, we have no plans for responding to 'these type of articles' due to a lack of capacity.

Should anybody want to help the forum expand what we do and ease the load on our existing staff then please view this thread, Management committee announcement - Volunteers needed, which shows the opportunities.

 

There are three screenshots of the online article in this Twitter post:

https://twitter.com/user/status/1427536240711249927


you need to click through to Adam's post on Twitter then click on the left hand image to view it enlarged, then click on the arrow on the right of the image viewer screen to view the second and then third image (apologies if I'm teaching grannies to suck eggs).

 

Interesting that O’Neill is pushing against the NICE embargo in publishing this article today.

Technically no one ‘knows’ until tomorrow what NICE will recommend in relation to GET or CBT.

 

I guess this is why the quotes of a spokesperson spokeswoman and of "neurologists" had to remain anonymous?

I think it's fair to say that it is to be expected based on the draft and on the fact who left the committee in a manner that people now try to use to attack the review process. So not 100% sure but very close to 'known'.

 

My guess is that the print version needed to be shortened to fit the space, so someone other than Sean edited the paragraph without context. Sometimes you get told at 23.55 that an article is 20 words too long and the paper goes to print at midnight, so you just chop what's easiest.