A general thread on the PACE trial!



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.
 
Snow Leopard said:
The "PEM" post mental exertion is very different from the "PEM" post physical exertion and I wish more people would acknowledge this.

I personally do not experience any excess physical fatiguability after mental exertion (say, a Uni exam) over the next few days, provided I had sufficient sleep and so on. The only physical issues relate to the muscles that were used, eg eyes, hand/arm.

But if I was to physically exert myself, then this leads not only to physical fatigability, but also extra mental fatigue and brainfog over the next few days.

But I agree, it is not about reaching some sort of magic "anerobic threshold" heartrate. PEM can be induced without reaching this threshold heartrate. The tight coupling of heart rate and anerobic threshold only occurs during a ramped increase in exercise output (like on a CPET test).

The brain uses a lot of energy, and the two main hypotheses that explain the 2 Day CPET findings - endothelial dysfunction and afferent nerve peripheral sensitisation (potentially type II, III and IV fibres - Alan Light and others have investigated this sensitisation) and their spinal feedback loops do have analogues in the brain. The purpose of these afferents is inhibitory feedback, to increase predictability of output, when there is something unusual going on peripherally that leads to inconsistent performance, such as fatigue. The headaches also strongly suggest vascular involvement.
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Trish said:
I think this is something that needs to be explored further. I have just reinforced that supposition for myself recently with a congnitive crash that lasted several days after a couple of weeks of significantly more cognitive effort than usual for me. It was competely different from my much more familiar physical crash - the symptoms were almost entirely cognitive - much slower processing, far more mistakes when typing, short vacant periods where I had no idea what I had been intending to do, losing track when listening to the radio.
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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.
 
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.
 
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?
 
Woolie said:
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.
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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.
 
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ukxmrv said:
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.
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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.)
 
I can understand why all these people are talking in terms of recovery and rehabilitation because why would they think any different. None of them who were previously healthy including the GPs have any specialist understanding about what it’s like to have a long term post viral illness.

Think back, how long did it take you to have any sort of basic understanding about being chronically ill and prognosis.

For me it was a year after diagnosis that I began to understand how serious ME could be. I had met some people on line who had ME for more than ten years I saw Unrest and the situation of Whitney and the Jessica and the others with very/severe ME was made visible. Then between 18 months and two years I had read the purple book and the information there about prognosis began to sink in and I saw an ME specialist who said there was very low likelihood of me making any sort of substantial recovery and confirmed I had had ME for years before diagnosis.

there is so much to take on board, just coping day to day, being held accountable by family and employers, there is uncertainty for each of the long covid people. It’s not surprising if they feel they are somehow unique that message about it being a completely new virus is very strong.
 
NelliePledge said:
I can understand why all these people are talking in terms of recovery and rehabilitation because why would they think any different. None of them who were previously healthy including the GPs have any specialist understanding about what it’s like to have a long term post viral illness.

Think back, how long did it take you to have any sort of basic understanding about being chronically ill and prognosis.
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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:

Changes to the trial protocol

Some people have criticised the trial for changing some things after we started the trial, such as how we analysed the results. This happens not infrequently in trials, and we stated at the very beginning that we would write a detailed statistical analysis plan as we went on. This was done in order to improve the analysis and interpretation of the data, and was completed before any outcome data were examined and approved independently by the two trial oversight committees. This link gives more explanations for those changes that were made http://www.pacetrial.org/faq/
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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.
 
Esther12 said:
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:

Changes to the trial protocol

Some people have criticised the trial for changing some things after we started the trial, such as how we analysed the results. This happens not infrequently in trials, and we stated at the very beginning that we would write a detailed statistical analysis plan as we went on. This was done in order to improve the analysis and interpretation of the data, and was completed before any outcome data were examined and approved independently by the two trial oversight committees. This link gives more explanations for those changes that were made http://www.pacetrial.org/faq/
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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.
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This ...

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