A general thread on the PACE trial!

Sir Simon seeking to re-write history? A screenshot of the tweet is attached in case it 'disappears' for mysterious reasons. @dave30th

https://twitter.com/user/status/1306523508382601216



This tweet is being discussed on this thread
https://www.s4me.info/threads/bmj-letter-from-longcovid-doctors.16887/#post-288633

 

https://twitter.com/user/status/1306624502797758466


Some interesting discussion in the thread making the point that it's not the psychological nature of the assumptions that we object to, but the fact that they are merely assumptions and completely wrong at that.

I think the point got across and he seems to understand it, but it shows how pervasive the framing of the BPS gang, that it's the psychological nature that is rejected, not the fact that it's plainly wrong.

 

I wonder whether he has heard the corollary, that rejection of the psychiatric label constitutes stigmatisation of other psychiatric patients.

 

I don't think Wessely has ever used the term PEM before. He always dismissed it as deconditioning, normal symptoms of physical activity interpreted with catastrophe.

This is Soviet politburo-level of gaslighting.

 

Speaks volumes

 

Just as an aside, PEM being different after cognitive & physical exertion is not the case across the board.... For me PEM after too much cognitive effort is identical to that experienced after too much physical activity. The crash is identical after laying in bed reading for too long as it is from standing/walking/moving too much, & as it is after too much sensory input. It all always involves the same physical & cognitive difficulties. I could never make the heart rate monitoring method of pacing work for me because of that.

I feel sure that this has been discussed on the forum before & i remember not being the only one to have this experience of the PEM being the same after both, but it was a long time ago so I dont remember anything else.

 

For me PEM is PEM, and can come from either cognitive or physical exertion

Sure, I might have greater muscle aches after physical exertion, and perhaps a headache after cognitive exertion, but the rest of the nasty stuff is very similar either way.

 

I see Garner still holds the belief that good "rehabilitation" is what's needed. That leads to the trap of thinking there is some ideal way of navigating the path to recovery.

He's in the early days, and I'm sure that he hopes there is such a way, and such a path. But those sorts of assumptions are part of the problem.

 

Indeed, and they seem so ingrained in recent medical culture.

 

It's understandable that people want to see a path forward that leads to recovery.

The attention is focused towards recovery, and very little attention is given to asking the question of how realistic it is to try and achieve recovery from an illness that we have essentially no understanding of, or whether approaches like rehab programs could do more more harm than good.

 

GET seems to be at least in part the result of people's inability to accept reality. People feeling the need to pretend there is a path to recovery to avoid feeling bad.

 

And of course part of the problem for people who don't recover is that some people do recover. But there is still no way to know who is going to be in what category.

That would require someone somewhere to do the science necessary to find out. And sometime before we all drown in an ocean of virtual psychology research paper.

 

It is not acceptable to say "Oh cancer, I had that once" dismissively to someone who has not recovered or to use the fact some people are cured to tell people who don't that they must want to be ill.

So why should it be different for us?

 

This worries me as I see Long Covid patients not truly learning the lessons from CFS, ME, PVS and PVFS and taking 5 -10 years before it finally dawns on them.

 

it took me ten years to finally except that living with this disease was my new reality of course that had a lot to do with the useless medical advice in the nineties

 

Absolutely. It seems even worse as hyper-aggressive BS is going to hit them from a dozen different angles all at once. I don't envy people trying to make sense of things in that situation. I can't see how it will work out well unless Important People are able and willing to take the lessons on board. (Of if everybody spontaneously recovers.)

 

Exactly. The idea that if you get a bug that doesn't actually kill you, and you would not then fully recover from it, is way beyond what a normal healthy person can countenance or properly understand. If you go down with it ... then you understand. If a loved one goes down with it ... then you might gain some insights, if you are prepared to try.

 

I was re-reading the PACE PI's statement about PACE on talkhealth: https://www.talkhealthpartnership.com/forum/viewtopic.php?f=451&t=4800#p13962

They talk about their recovery results: "found that both CBT and GET were about three times more likely to lead to recovery than the other two treatments."

Then go on to say:

This seems like more tricksy language by them, as the changes to the recovery criteria were not in the statistical analysis plan and the minutes from their oversight committees don't provide any indication that they gained approval for the recovery criteria used in their 2013 papger.

 

This ...

"and was completed before any outcome data were examined"
​

... carries little weight in an open label trial, where the treatments entail therapist/patient interactions and observations. The investigators and therapists will have a very good idea which way the wind is blowing as the trial progresses, long before any outcome data is formally available.