Its not just them as individuals. QMUL is responsible for ensuring the quality of the research and they (through the associated Barts hospital) have a business based on selling GET to the NHS, they employee people based on this. They spend 1/4 Million trying to suppress data from patients and are still spinning PACE results (along with Kings who sell CBT services to the NHS and Oxford). If this were to happen in other industries lawsuits would be talked about.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Do more people recover from chronic fatigue syndrome with CBT or GET than with other treatments?
- Thread starter Dolphin
- Start date
Its not just them as individuals. QMUL is responsible for ensuring the quality of the research and they (through the associated Barts hospital) have a business based on selling GET to the NHS, they employee people based on this. They spend 1/4 Million trying to suppress data from patients and are still spinning PACE results (along with Kings who sell CBT services to the NHS and Oxford). If this were to happen in other industries lawsuits would be talked about.
You got there before me. I noticed the same thing. They seem to have added this in (in effect retrospectively revised their outcome on the sly again). If they move their own goalposts any further they will be lined up with the opposing team's!
Keith Geraghty
Senior Member
- Messages
- 491
one observation is they have lost 15 authors from the list of 19 that replied to my PACE GATE editorial
could some of them be at the end of the pier thinking there's not much further we can go - prehaps back off
I was most assumed by their defence that its the literature that supports them - eh no, the trial itself should support itself - if you have to trawl the literature to search the friends and colleagues pages to find anything close to your own to justify your findings, youre pretty much on shakey grounds.
We can all have a debate about how recovery is defined - sure lets do it, why did you use the term recovery in the first place, did recovery mean a return to normal activity levels, nope, sound of loud buzzer
another amusement was them trying to claim that 'very much better' and 'much better' are better indicators of recovery than just 'very much better' alone --- I mean, are they having a laugh. "patient I give you 4 options, much worse, worse, better, very much better --- now you must think positively for CBT to work --- now answer my questions again. This is how their science works.
could some of them be at the end of the pier thinking there's not much further we can go - prehaps back off
I was most assumed by their defence that its the literature that supports them - eh no, the trial itself should support itself - if you have to trawl the literature to search the friends and colleagues pages to find anything close to your own to justify your findings, youre pretty much on shakey grounds.
We can all have a debate about how recovery is defined - sure lets do it, why did you use the term recovery in the first place, did recovery mean a return to normal activity levels, nope, sound of loud buzzer
another amusement was them trying to claim that 'very much better' and 'much better' are better indicators of recovery than just 'very much better' alone --- I mean, are they having a laugh. "patient I give you 4 options, much worse, worse, better, very much better --- now you must think positively for CBT to work --- now answer my questions again. This is how their science works.
adreno
PR activist
- Messages
- 4,841
Alternative facts?
Worth noting the trial statistician is still backing the recovery paper despite their statistical errors. Although it is interesting he didn't bother to defend his lack of care in setting thresholds using mean and SD where the SD clearly doesn't characterize the distribution. I would also note that he is from the MRC trial unit which does their brand no good.
To fall back to the literature to defend methodology would be ok but it would read a bit like 'well they did it as well'. But to go back to the literature find similar results but with different methods is just perverse and makes no sense.
As I said earlier, this is a completely meaningless claim.
If you are researching how to refill pots that are nearly empty, when they should still be full, then you must have some criteria of how empty the posts have to be on entry to your trial. Otherwise, how else can you demonstrate that your remedial actions successfully recovered a meaningful number of nearly empty pots to their full state.
Stating that none of the pots were in the recovered/full state on trial entry tells you nothing of any use at all. It allows the absurd possibility that some/many/all(!) of them could in fact be virtually full, needing only a teardrop or two to tip them across the threshold and then be deemed full. And what would that then prove in terms of trial outcome, efficacy of your remedial actions? Nothing of course - other than the trial was a waste of time. There has to be the notion of something tangible that must be achieved by the trial outcome, some significant change in condition between trial entry and its conclusion, that the remedial action must achieve.
So if the defence of entry criteria rests on asserting that no participant met the full recovery criteria at trial entry - that is pretty sad.
Last edited:
So let me get this straight:
PACE was justified on the grounds that results in the existing literature were insufficiently robust and needed proper "definitive" testing. But when the results from PACE did not support those results from previous studies, nor hence the underlying theoretical model, the numbers were simply fiddled with until they did, and this was justified by saying the new numbers now agree with those previous studies, the same ones that were insufficiently robust enough that they provided the justification and necessity for the "definitive" PACE in the first place.
So the previous results being tested by PACE, because they were not robust enough, became the standard by which the results from PACE were determined to be robust or not.
Circularity City, or what.
Now that is classic weasel words, desperately trying to skirt around the null long-term follow-up result.
Worse, they said on a previous occasion that it showed the "process of recovery". A novel interpretation, I think it fair to say.
Last edited:
Esther12
Senior Member
- Messages
- 13,774
Just got bugged by this again.
Who did they consult with? Patients? Those whose careers were built on claiming CBT/GET lead to recovery?
When did they do this? After the Lancet paper came out, and in response to an FOI request for results for the protocol recovery criteria they said that these results were due to be released in a peer reviewed paper. When did they change their mind about this?
How can they claim that they were careful about this while failing to address the inaccuracies that they tried to use to justify their protocol deviations? Also, they dismissed as vexatious Matthee's attempt to get clarity on when the recovery criteria was changed: https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial
Who did they consult with? Patients? Those whose careers were built on claiming CBT/GET lead to recovery?
When did they do this? After the Lancet paper came out, and in response to an FOI request for results for the protocol recovery criteria they said that these results were due to be released in a peer reviewed paper. When did they change their mind about this?
How can they claim that they were careful about this while failing to address the inaccuracies that they tried to use to justify their protocol deviations? Also, they dismissed as vexatious Matthee's attempt to get clarity on when the recovery criteria was changed: https://www.whatdotheyknow.com/request/timing_of_changes_to_pace_trial
Cheshire
Senior Member
- Messages
- 1,129
Last edited:
When they say they were careful I think they mean they were careful to get the desired results not careful to be accurate.
They are still claiming a threshold of 60+ on the sf36 physical function scale means recovered. Here are the questions, each is answered with a limited by a lot, little or not at all with the different scores given.
The question is what sets of answers that add up to 60 would a normal person consider as recovered or healthy.
So answers such as these count as recovered and score 60
I can't do vigorous activities, or moderate activities, or climb several flights of stairs or walk more than a mile
I can't do vigorous activities and I am limited in doing moderate activities, climbing several flights of stairs, walking more than a mile, walking several blocks, lifting groceries, climbing one flight of stairs
Its hard to see how a reasonable person could see such answers as recovered.
Even with higher scores it is difficult. There original threshold was 85 which is still quite low for someone who has recovered. I can see something like
I can't do vigorous activities, and I am limited in climbing several flights of stairs
As a reasonable answer for 85 and perhaps ok to consider as recovered depending on age. But even this threshold is a struggle.
When they talk about careful consideration they clearly didn't go as far as thinking through the semantics of their proposed thresholds and what they mean in terms of the activities that people can do.
The question is what sets of answers that add up to 60 would a normal person consider as recovered or healthy.
So answers such as these count as recovered and score 60
I can't do vigorous activities, or moderate activities, or climb several flights of stairs or walk more than a mile
I can't do vigorous activities and I am limited in doing moderate activities, climbing several flights of stairs, walking more than a mile, walking several blocks, lifting groceries, climbing one flight of stairs
Its hard to see how a reasonable person could see such answers as recovered.
Even with higher scores it is difficult. There original threshold was 85 which is still quite low for someone who has recovered. I can see something like
I can't do vigorous activities, and I am limited in climbing several flights of stairs
As a reasonable answer for 85 and perhaps ok to consider as recovered depending on age. But even this threshold is a struggle.
When they talk about careful consideration they clearly didn't go as far as thinking through the semantics of their proposed thresholds and what they mean in terms of the activities that people can do.
Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
tl;dr
I'm guessing it's a rehashing of old claims and completely missing the point.
I'm guessing it's a rehashing of old claims and completely missing the point.
To score 60, someone would have to be "limited a little" in 8 of the 10 responses. If we assume the more extended activities (versus flexibility/movement/strength) result in the most universal limitations in ME patients, then someone scoring 60 would be limited a little in:
How recovered is a person who is even a little limited in walking one block and bathing? The PACE authors are either completely delusional or shameless liars.
Last edited:
Molly98
Senior Member
- Messages
- 576
Or both.
Looking at the ONS data the people who score 5 or 10 tend to rate the " Bathing or dressing yourself" as the thing they can manage. Since this was a population survey then this would include a few with ME but mainly other disabilities/illnesses.
Your point on flexibility/movement/strength vs extended activities is a very interesting one. One of the properties that should be there for a scale is a consistent ordering. The fact different disabilities will lead to different answer sets shows the dangers of using a questionnaire as a scale.
- Messages
- 83
When an ME sufferer is answering these questions is it from perspective of simply being able to perform the activity in isolation, or are they answering by including the impact of PEM.
e.g. Can you walk a block.
If answering yes the relevant points are allocated. However there is the payback impact with PEM, so while you can walk a block one day, you may end up in bed for the next several.
Or do they answer no because they have taken the PEM into consideration?
e.g. Can you walk a block.
If answering yes the relevant points are allocated. However there is the payback impact with PEM, so while you can walk a block one day, you may end up in bed for the next several.
Or do they answer no because they have taken the PEM into consideration?
Mohawk1995
Senior Member
- Messages
- 287
We used Dr Lerner's criteria. It is copyrighted so I will share the link. Much better measure for ME sufferers.
http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf
http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf
A.B.
Senior Member
- Messages
- 3,780
The PF-36 questionnaire is terrible for this illness. It is designed for predictable, static health problems that don't fluctuate and don't change in response to activity levels. Depending on how I interpret the questions, I get vastly different levels of impairment.
Mohawk1995
Senior Member
- Messages
- 287
This also includes some treatment protocols. Look to page 6 and 7 for the scale.