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

Yes, I’ve had a similar issue even when I was in a separate side room. It was awful. In my case though, no one else even seemed to think it was an issue, when I was there.

 

Feel free to delete if it has been posted already
https://twitter.com/user/status/1326209955586863110

 

Sorry, think my point should have been clearer. The reason why I said “normal environmental levels” is that even in situations when noise levels are not “high” or irritating to others, ie just normal conversation in a normally busy corridor, with me in enough proximity to the conversation, is enough to cause deterioration. As JemPD says, it’s hard for others to understand that these apparently “not noisy” situations can be extremely difficult as well, let alone actual (for others) noisy situations.

 

Phil Parker tweeted 6 hours ago:

"nice guidelines change removing GET. It always seemed quite a blunt instrument to me..."

Then posts a link to the Guardian article, completely failing to mention to his readers that NICE also specifically said lighting process not recommended!

https://twitter.com/user/status/1326125924241330176


I looked at Wessely, Gerada and Sharpe twitter pages and none of them mention the draft guidelines at all.

 

Both laughable. The committee was stacked with BPS cheerleaders who would have rubber-stamped any evidence if they could have gotten away with it. That they could not do so in that process, with all the advantages, says a lot about how mediocre it is.

Same for b), frankly, the committee was stacked, experts were literally excluded from the process because they agreed with the patients, as if this is a conflict of some kind, just not the other way around. All the odds were against even reading the evidence. Let's not forget that this was the starting point in 2017: no need to even review anything. That's how ideologically stacked in favor of BPS this all was.

They will make those claims but they will look ridiculous.

 

I wish Miriam Tucker had written that article for Medscape
https://twitter.com/user/status/1326216046844448774

 

The replies from the BPS gang are for the most part incoherent, barely relevant to what they are commenting on. Meandering and very dishonest, the SMC made no pretense of being a for-hire PR firm here.

But Peter White's comments cover him in ridicule. In the 2007 guidelines, he expressed total disbelief about the fact that GI symptoms are relevant to ME. Now here he literally misuses the term PEM, which he clearly does not understand, and somehow argues that PACE evaluated PEM, even though they literally do not understand what it means at all, confusing PEM with fatigue and arguing, post hoc without ever mentioning it, that this is what PACE was about, even though it clearly wasn't because these people have never used the term, never recognized it exists, have never understood a damn thing about it.

Some "expert". White should remain retired. Incoherent ideas sound even worse when they are incoherently expressed, well, even more so than usual anyway.

 

The Action for ME quotes in the Guardian article are not helpful - I wish they could just keep their heads down.

 

Seems to be a week for throwing toys out of the pram .

 

This is a good compromise. It's very hard to name things right here but fatigability is much more relevant than fatigue. And malaise never really worked well here, it's very much part of the illness but PEM isn't just malaise, it increases it and nearly everything else.

Small steps forward given how difficult it remains to apply in practice, but they do count, especially with the removal of the infinite steps backwards. This was difficult work and it came out... pertinent. Incredible given how the odds were stacked.

 

The framing isn't wholly fair, it's not that it can't be offered anymore, it's that it is not considered a valid treatment anymore, thus removing the very option of offering it, because why would anyone offer treatment that is useless? It's as much of a loss as "losing" a tumor could be considered a "loss".

But this is surprisingly fair and, shall I say, accurate. Accuracy is underrated. I like accuracy, I would very much to have more of it in the future, hell, even in the present.

 

What AfME quotes? Do you mean the ones from Miller?

My bolding.

 

Clare Ogden manages to miss the point abut 2007, and since.

 

https://twitter.com/user/status/1326167564536455175

https://twitter.com/user/status/1326186261086941184

https://twitter.com/user/status/1326172740093665281

https://twitter.com/user/status/1326178786870759424

 

Maybe Dr Miller had not read my expert statement at that point.
Re-reading it I thought that was quite, you know, bold, in places...
Or maybe italic?
!**

Edit: I also think they must have redacted Simon Wessely. That seems a bit harsh.

 

Just skimming:

Yes. Stay within energy envelope and to not push through activity - good. Rest as need be - good.

Good.

Good overall, albeit possibly some fine tuning. I like the last point especially, because it highlights never to opt for automatic increases in activity, and that may have to drop back. Much more in the vein of pacing. Helping people to understand their energy envelope, if done sincerely and competently, is good.

Wary of this bit. Presumes things will eventually stabilise or improve. Not sure of evidence for that, though many may stabilise not all necessarily will.

Not looked in any more detail yet, but seems promising.

 

One notable thing here is how it cements the fact that the BPS ideologues are entirely self-serving and do not consider patient input or outcomes to be of any relevance to their work. This process was the end-result of years of arduous patient involvement and efforts, relied in part on years of patient reports of harm, or at best uselessness, and also conducted a large community survey, for all practical matters equal in terms of evidentiary value to any part of the body of evidence for the BPS model, as it is entirely based on questionnaires (with fewer respondents). It is also received with praise and enthusiasm by the patient community, for its accuracy and respect for basic facts.

And they are angry. Angry that patients were listened to, even if in a highly biased process that nevertheless managed to work this time around. Angry that patient outcomes have to be considered important. Angry at the suggestion that we should be treated like people, capable of agency and reliable witnesses to our own life experience.

They are in fact very much trashing patient reports and input here, promoting instead their own biased opinion, literally eminence-based medicine, arguing that in their capacity as "experts", their opinion is more valuable than any piece of evidence, far above patient reports and outcomes.

All while they pretend, even claim, that it is they who are listening to the patients. As they are literally trashing the entire patient community. These people are nothing but self-serving ideologues. They represent everything that is wrong with medicine. Nothing makes that point clearer than being irrationally angry at a good outcome for patients, because it is bad for them, for their career, for their little self-serving egos.

What an incredible failure.

 

conveniently omitting the other earlier patient surveys that showed the same.

 

Ahhh, i read that article 3 times never noticed her even being included never mind saying that

sorry @Esther12 I am clearly too muzzy headed to even read sensibly i will crawl back under the bed