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PACE Trial and PACE Trial Protocol

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user9876

Senior Member
Messages
4,556
Dolphin said:
Ellen Goudsmit:

https://www.facebook.com/MEActNet/posts/1683984895217243?comment_id=1684299818519084&comment_tracking={"tn":"R0"}

Aside: Don't agree with her on the likert/bimodal point. Think the bimodal threshold of 3/4 is better than the Likert threshold of 18/19. There are some other problems with likert scoring e.g. some people report scores better than healthy people.
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The'Likert;' scoring which isn't actually likert scoring is not more sensitive. There is a difference of between 0 and 1 for a 'better than normal' however someone wants to interpret that but between the normal and bad and worse bits they have a range of 2 so its non-linear as a scale and hence not 'more sensitive'. There was a reason Likert said that scales should be symmetrical. They also didn't quote any 'evidence base' to demonstrate increased sensitivity.

But the 'scale' is so bad I feel any statistician using it and quoting means should seriously considering retraining.
 
Esther12

Esther12

Senior Member
Messages
13,774
In case of interest, this is from a piece by Alison Paice in December 2015 edition of the reMEmber newsletter:

I was referred to the Sussex ME Service and after a year on the waiting list I saw Dr Broughton, who carried out an extremely thorough consultation and confirmed the diagnosis, also ruling out depression. He suggested that I consider taking part in the PACE trial, on the basis that I could help to contribute to meaningful research into the treatment of ME/CFS, whilst receiving a course of treatment for 12 months. I was assured that at the end of the trial period I would be offered the choice of further treatment from the selection offered under the trial. I was randomly selected for the Graded Exercise Therapy (GET), and initially I was hopeful that I could slowly increase my activity and use this as a route to recovery — I always maintained a very positive attitude.

My exercise program consisted of walking approximately 50 metres in the morning and 50 meters in the afternoon, and the plan was to slowly increase the distance over the year, aiming to be able to complete approximately 600 metres, twice a day. After a promising start I suffered my first setback, and rang for advice, and was told to continue with the daily exercise despite feeling so unwell. I was provided with a heart rate monitor at the start of the trial period and had been monitoring this daily while I walked (recording the resting heart rate beforehand, the highest recorded rate during the walk, the rate at the finish, and the time taken to return to the resting rate). My heart rate was showing higher readings as the trial progressed and I became more and more unwell as the exercise continued daily. I was reporting back to a physiotherapist and after several months with this trend increasing she did say that they had not expected this result from the heart rate monitor — and several times asked me to re-turn the monitor as she felt these results did not bring anything useful for the trial, so she suggested we stop keeping records of the heart rate readings. I refused as I felt they were important and did not under-stand how a medical trial could possibly be impartial if the criteria were changed to ensure only expected results were recorded? I'm not an expert, but I certainly felt that my results were not being viewed impartially.

As the study continued I felt increasingly unwell and my own conclusion is that GET was harmful for me. When I received a report at the end of the trial it stated that nobody was harmed by GET, and I question the interpretation of my personal results. Also, I felt that the purpose of the trial seemed to be to get ill people to work, rather than to find ways to improve their health and wellbeing. Personally, I found the PACE trial set me back by several years, and improvement since has been very slow. I declined the offer of a different course of treatment, as the travelling was onerous and opted instead to be returned to the Sussex service. However Dr Broughton had left the service and there was very little help forthcoming. My GP oversaw my care, and whilst he was very kind, he did not have any specialist knowledge of ME/CFS. Since then I have undertaken a course of 6 individual sessions of Cognitive Behavioural Therapy (CBT), which served to confirm that I had a positive attitude towards my illness, with realistic expectations. However, there was nothing in the course that helped me to improve my health, so I would say it was neither helpful nor harmful.
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worldbackwards

Senior Member
Messages
2,051
I was reporting back to a physiotherapist and after several months with this trend increasing she did say that they had not expected this result from the heart rate monitor — and several times asked me to re-turn the monitor as she felt these results did not bring anything useful for the trial, so she suggested we stop keeping records of the heart rate readings.
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Nice to see the three wise monkeys in full effect. What a scumbag.
 
Artstu

Artstu

Senior Member
Messages
279
Location
UK
I found the PACE trial set me back by several years, and improvement since has been very slow.

As the study continued I felt increasingly unwell and my own conclusion is that GET was harmful for me.
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I'm not sure I'd have been so generous about it.
However, there was nothing in the course that helped me to improve my health, so I would say it was neither helpful nor harmful.
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Dolphin

Senior Member
Messages
17,567
Comment from somebody on Facebook:

One aspect to the recruiting "volunteers" to the PACE study which I haven't seen mentioned in any of the articles, exposés, etc lately but which niggles at my memory from back then. I remember people talking about how they didn't get a choice ... or rather they were threatened with being sectioned into psychiatric hospital if they didn't "volunteer" and some whose doctors refused to consider treating them, or even seeing them, unless they complied. I can't recall names but surely some of these people could be tracked down to have their experiences documented?
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leela

Senior Member
Messages
3,290
The PACE trial is a serious breach of ethics. The better part of the BPS treatment model is a serious breach of ethics. It seems like Serious Breach of Ethics = Standard Operating Procedure when it comes to this group.
 
D

Dolphin

Senior Member
Messages
17,567
Bob said:
Without seeing evidence, I'm slightly sceptical of this claim. This would be a major serious breach of ethics.
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I wonder could they have been thinking of anyone forced to undertake CBT or GET under any circumstance rather than people specifically in the PACE Trial.

Some people in the thread on the report from the ME Association on the effects of CBT, GET and pacing interpreted all the comments as being on the PACE Trial when nearly all of them presumably aren't.
 
Esther12

Esther12

Senior Member
Messages
13,774
Dolphin said:
It looks to me that it may overstate the removal of objective outcome measures.
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I've seen a couple of people get confused about this recently. I think that there was a line in Tuller's pieces about PACE downplaying or abandoning objective outcome measures, and maybe some readers forget about the 'downplaying' we have seen? (Not read this new piece yet).
 
Esther12

Esther12

Senior Member
Messages
13,774
OT: Was watching a Wessely talk because it showed up on @maxwhd's twitter stream, and the first paragraph of this made me think of the PACE researchers, their spinning or results and refusal to release data:

32:50

Because if you really want to understand Chronic Fatigue Syndrome, ME, whatever we're going to call it, you have to do so in possession of all the facts. Not just those facts that you like, but all of them. You can't pick and choose. And the history of science tells us very clearly that turning your back on things that you don't like, things that aren't going the way that you want them to (and there are very many examples of this) at best leads to false conclusions and bad decisions, and at worst leads to bigotry and intolerance.

It is not good enough to dismiss the research we've discussed as nonsense, or those who've followed it as knaves, charlatans or varlets because they’re none of those things – if you want to help sufferers you have to see the world as it is, in all its complexity and not just parts of it.
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slides here: http://twitdoc.com/view.asp?id=2426...hd&doc=295685380&key=key-SBKqHl5c0YiZ7FdNiLTI

I think that their turning their backs to reality has led to false conclusions, bad decisions, bigotry and intolerance.What a surprise.

I like how Wessely and that lot talk the good game about science and dealing honestly with the evidence, but fight so hard against following through on it.
 
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