Guardian Article on NICE pause

[Barry]

Informed consent becomes an important aspect now that there is acceptance of both lack of benefit and harm .

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

 

[Invisible Woman]

Take it not psychiatrist Prof Peter White, now retired, of Barts?

Unless he is connected with, for example, the build and management of the new website, it's unclear whether and what relationship he has with Forward-ME or if this is a misunderstanding on the part of the journalist.

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.

 

[Barry]

Since this brilliant tweet is from the very creator of Godwin's law, I suppose an application of that law could exceptionally be acceptable.
So, here to comment on Sharpe's idea that we are the ones preoccupied with benefits rather than science, not them:

That is an extremely common behaviour pattern of predatory personalities.

 

[Ariel]

Yes, it's not really comparable to the climate change "debate" in that the pro-CBT/GET studies are in high-profile journals that continue to defend them, and high-powered academic institutions behind these investigators. Journalists are not really equipped to adjudicate these complex disputes, even "science" reporters.

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.

 

[leokitten]

Hmm. For me it fails at the first hurdle. Not a single mention of PEM and the consequences of activity.

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?!?

 

[Arnie Pye]

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).

 

[Snowdrop]

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

 

[dave30th]

But that doesn't make it complex, it means they are ill equipped to recognise pseudoscience.

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.

 

[Hutan]

A post about Forward-ME has been moved here:
United Kingdom: News from Forward-ME Group

 

[Jan]

 

[Caroline Struthers]

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.

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

 

[Fainbrog]

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?

 

[Ariel]

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.

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.

 

[anniekim]

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

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.

 

[JoanneS]

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.

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

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

 

[Dx Revision Watch]

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

 

[Mithriel]

It may not be entirely relevant to this article, but, my wife and I were talking about PACE the other day (oh yes, livin' the dream, we wasted energy talking PACE) and it struck me that if Chalder, Wessely and co. who did PACE were so confident in their findings and that they could replicate the results in a way that would stand up to scrutiny, wouldn't they seek to do the whole thing again?

I know there have been other GET-related studies, but if they were that sure, they'd put their reputations on the line to prove beyond reason, that GET and CBT worked.

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.

 

[Fainbrog]

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 ).

 

[Invisible Woman]

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.

 

[chrisb]

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.