Guardian Article on NICE pause

Especially if what Margaret Williams says is true (I imagine it is) that medics by law should be aware of the “totality of the evidence-base”.

https://www.s4me.info/threads/legal-advice-for-nice-process.22135/page-2#post-369742

 

There is a Peter White who is a patient who has made afew good comments on twitter and in response to various things on social media. I don't know if it's the same chap though.

 

That is an extremely common behaviour pattern of predatory personalities.

 

On the substance and content of the "debate" I agree, but I think the framing device of a "debate" is being used in bad faith by e.g. the BMJ and in a similar rhetorical style to the framing of climate change as a "debate". It is simply a method of creating room to manoeuvre and an unclarity about what is going on by parties who seek to cover themselves. It shifts the paramaters in an advantageous way for those who wish to obfuscate and push on the boundaries of what they can get away with.

I know it's hard to report on without a lot of context. Journalists can often frame everything as a debate by default, and it does not help in this case that medical journals are themselves framing things as "debates" for political reasons when they should not. So I imagine it's even more difficult for science reporters to sort out. But the "debate" framing should be challenged in my opinion as it's often used in manifest bad faith and is causing great harm in particular by poisoning the atmosphere in the medical community at a time when education is so important.

 

Yes, this is what so many people who understand little about ME seem to miss when they give their two cents. That unlike other chronic conditions like, e.g. heart disease, diabetes, etc, doing significant physical or mental activity is actually damaging to ME, you feel like you have been poisoned afterwards and it has the opposite effect I ever had to exercise before ME. You don’t feel good or even neither good or bad, you always feel bad afterwards and it has nothing to do with deconditioning it started happening the moment I got this illness when I was still in excellent shape!

It’s actually physically damaging and for other diseases like MS for example you would never EVER do things like GET because getting too hot and exercising beyond a threshold can cause a worsening of MS, so why is it so hard to understand you cannot do this as well with ME?!?

 

I thought the psychiatrist Prof Peter White was sometimes referred to as Peter D. White. (D for Denton - dunno where I got that snippet from.) The person I assume is a patient has never had a middle initial mentioned or any kind of title (edit: that I've ever seen).

 

The Peter White being discussed is here: @PeterW I believe.

 

it means they have a hard time, like most people would, when having to deal with respected experts presumed to know what they're talking about.

 

https://twitter.com/user/status/1432262624222269448

 

It's a different Peter White. Unfortunate coincidence on the name! He is not an ME patient but was misdiagnosed with ME a while ago. He has a different condition. He is very sympathetic to the cause

 

My wife just went a bit nuts when I told her about this article over lunch.. She was like, ffs, what do these people think? You all want to be ill forever?

 

I would have more sympathy with this if not for the blatant conflicts of interests involved. It's fairly obvious people are going to defend their own research and activities.

 

Thank you to you and others confirming it’s not the psych Peter White and further info. I was pretty sure it wasn’t but good to have confirmation.

 

This is Peter White on Twitter discussing the Guardian article. He is open to feedback on improving communication with journalists.

https://twitter.com/user/status/1432272653553999873

 

Confirmation received, today, from NICE's Media Relations Manager that no press releases had been sent out prior to the announcement on August 17th.

https://www.s4me.info/threads/nice-...ue-17th-august-2021.21897/page-84#post-370211

 

There have been lots of studies done on CBT and GET since PACE. They have all been reported as successful but are all of the same dire standard.

PACE was meant to be the definitive large study to confirm previous small, successful studies. There were lots of objections to how it was set up as it seemed to be cherry picking patients to get a good result. I dreaded the publication because I expected it to be glowing and difficult to refute and explain how the results were forced. Instead it showed no effect. What a shock, even with all their manipulations their reults as they published them left 70% sick!

Redoing the trial is just throwing money away. Like with studies of vaccines causing autism, the studies are all negative and it is time to look elsewhere.

 

I agree entirely with what you say, though, I think my point was more about Wessely et al putting their reputations on the line in 2021 or beyond to try to prove beyond doubt that CBT/GET work. Which they clearly won't because a) it doesn't suit their narrative of 'we already did this and it showed that it worked', b) they probably wouldn't get funding and c) their reputations would be in tatters if left to proper scrutiny etc.

I don't want another penny spent on CBT/GET studies for people with ME, but it was just an interesting thought (to me at least ).

 

If Wessely et al were serious about anything - their hypothesis, rigorous research - they had ample.time and .opportunity to do something about it.

They were convinced ME was due to deconditioning or abnormal beliefs fed by symtpoms of deconditioning.

So why not study deconditioning? Why not compare the difference between the two?

Maybe because they are so obviously different? Many of us who developed ME as adults will have experienced deconditioning and reconditioning in our lives pre ME and we can all say with certainty they are completely different things.

The thing here is they have no real interest in the illness, they are interested in a treatment. The treatment is what was being researched, not ME.

 

I think that deconditioning was simply part of the package which they inherited. There has never been any evidence of any thought having been given to the matter.