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Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

Woolie

Woolie

Senior Member
Messages
3,263
Wolfiness said:
Maybe we should be treating chronic fatigue as another kind of physical fatigue puzzle, rather than taking the Hummingbird route of looking down our noses at them and telling them that if they don't have PEM they don't properly exist as a clinical entity.
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Double for this @Wolfiness!

We, as a community, should be speaking up for every person who has been subjected to unsubstantiated Psychosocial BS, not trying to rescue just a select group and throwing everyone else under the bus!
 
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Amused

Messages
65
Location
UK
Wolfiness said:
I had OT privately with someone who had been a therapist on PACE and like @Amused , it just got nowhere because I kept doing too much - I got manic and couldn't keep to the baseline, even though I do keep to a baseline on my own 90%> of the time. The fact that they came across as a well-meaning but plodding mediocrity with no insight into the condition probably didn't help. But people being manic and unable to control the urge to do stuff whatever the consequences is yet another reality of ME that BPS believe you can just choose to overcome.
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That manic urge to do stuff? I've realised that for me it's like things hurting or feeling sick or dizzy, it's one of the symptoms and also a warning sign that I'm doing too much. It took me ages to realise it was 'false' energy and not available for using. I use an egg timer. 10mins rest, 10mins doing. At the beginning I resent the resting. When I begin to resent the doing, that's when I know my brain is getting the right info about my energy levels! I do find it helps hugely. But I only worked that out about 5 years after I finished on PACE.

I do honestly feel that I have no real idea about this illness and how it affects me (cos when it's affecting me I can't always tell, like with the urge to do stuff) and anyway it fluctuates for me. And everyone else seems very different to me in many ways and the way my illness has gone. So I don't really expect anyone else to be able to understand. I expect an overview big picture from a professional who's specialising in it - who has broad ideas of how it might go and suggestions of how to deal with it (which is what I got from the PACE Trial people except the painkiller SMC fiasco meeting I've mentioned before). But I don't see how I can expect more than that, when no more than that is actually known?
 
Mithriel

Mithriel

Senior Member
Messages
690
Location
Scotland
"
Maybe we should be treating chronic fatigue as another kind of physical fatigue puzzle, rather than taking the Hummingbird route of looking down our noses at them and telling them that if they don't have PEM they don't properly exist as a clinical entity."

This misses the point. If you do not have PEM you don't have ME, like if you don't have high blood sugar you don't have diabetes, but it doesn't mean you don't have a disease only that it has not been found yet.

Chronic fatigue is a symptom of many illnesses but if the diagnosis stops at that by calling it CFS, then people will be harmed. They could well have something treatable, or deadly or which needs changes in lifestyle to resolve. Fever is common to all bacterial infections but if fever was the diagnosis, antibiotics would never have been discovered.

My son was very fatigued and was told exercise might help and it was left at that. His sister with similar symptoms was lucky enough to get a blood test for coeliac disease (because her GP had had a flat mate with it!) so he was then tested and it was discovered he was coeliac too, he changed his diet and is now fine.

My mother's post flu fatigue turned out to be an aggressive cancer. My friend had cerebral palsy and was often exhausted after exertion simply because it took so much effort for her to move a reluctant body.

Any patient with fatigue needs to have it investigated properly and, of course, many people are exhausted because they actually have exhausting lives where social help would make a difference.

On a different note, when the PACE trial started, the participants were so cherry picked - I think it was something like 640 from 3000 names put forward and with no explanation except that they were the only ones suitable - that I expected about 80% to recover in the proper sense of the word.

I wonder if it was because they could not fudge the people in the clinics the way they could in a study they controlled themselves.

Mithriel


 
flybro

flybro

Senior Member
Messages
706
Location
pluto
Good info here https://peterkempblog.wordpress.com/2016/09/26/coercion-of-participants-in-the-pace-trial/

my comment

I can’t remeber when this was, but I remeber seeing an advert in healtha nd fitness magazine, with a list of cfs symptoms, and saying if you have some of these symptoms contact your GP.

I did so, and months later I attended wareham clinic(in the psychiatric unit) and met a rather rude rhuemy called selwyn richards’. He diagnosed me with Fibro and MCS.

I walked out because of his arogant, rude, condescing attitude, and never went back.

This guy was part of group doing ‘sports injuries’ and ’emotional processing’, site with NHS logo plus they seemed to be running training for pateints on how to use NHS.

I wonder if others remember seeing the ads?
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E

Emma

Messages
41
This may have been discussed already (apologies for not being able to read the entire thread), but doesn't a blog publication like this jeopardize publication in a peer-reviewed journal, which is what we really need at this point?

Anyone who is in touch with the re-analysis authors, please pass on my hearfelt thanks for the fantastic job they have done and are doing. We owe them - I'm extremely grateful, and impressed.

@Dolphin and others
 
BurnA

BurnA

Senior Member
Messages
2,087
Emma said:
This may have been discussed already (apologies for not being able to read the entire thread), but doesn't a blog publication like this jeopardize publication in a peer-reviewed journal, which is what we really need at this point?
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I was wondering the same and don't remember it being discussed.
 
V

Valentijn

Senior Member
Messages
15,786
Emma said:
This may have been discussed already (apologies for not being able to read the entire thread), but doesn't a blog publication like this jeopardize publication in a peer-reviewed journal, which is what we really need at this point?
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It might make it harder, especially if trying to publish exactly the same material. But it might not be a problem if plenty of other material is included.
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Alem has posted a comment on the PubMed "Recovery from chronic fatigue syndrome after treatments given in the PACE trial." paper that was released back in 2013 by White et al.

Much has been written about the problems with the revised recovery criteria in the PACE trial and the poorly or erroneously justified deviations from the published protocol after the trial was over. There have been calls for a re-analysis of recovery using the protocol-specified recovery criteria. While a formal publication is still pending, a preliminary re-analysis of 'recovery' using individual participant data has recently been released on Virology Blog [1].
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http://bit.ly/2czouiF
 
PennyIA

PennyIA

Senior Member
Messages
728
Location
Iowa
My favorite quote (my emphasis):

Individuals who defended the revised PACE trial recovery criteria, including in the UK House of Lords [4], argued that the results were impressive or meaningful because it means no longer having CFS. Unfortunately, the PACE trial data shows or confirms that these people have been misled.
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W

worldbackwards

Senior Member
Messages
2,051
This made me laugh out loud:
Not meeting Oxford CFS criteria in the revised recovery criteria is not what it sounds: participants were counted as not meeting Oxford CFS criteria if they had a CFQ (bimodal) fatigue score of less than 6 or a SF-36 physical function score of more than 65, irrespective of whether they still met Oxford CFS criteria or not. Approximately half of those who 'no longer met Oxford CFS criteria' according to the revised recovery criteria still actually met Oxford CFS criteria.
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