A general thread on the PACE trial!

https://www.nickross.com/science-evidence/

Re Healthwatch UK; they did include @Caroline Struthers wonderful piece in their Newsletter:
(page 8)
https://www.healthwatch-uk.org/images/Newsletters/Newsletter_114.pdf

 

Didn't do much for us.

 

Why do the same names and the same organisations keep reappearing in this story and in such paradoxical ways?

(A rhetorical question.)

 

Anyone interested in the history of Healthwatch might try Martin Walker's book Dirty Medicine. It can be found on the internet. Parts of it might even be true. It is hard to be sure. Healthwatch was originally Campaign against Health Fraud until it changed its name.

The other fascinating name amongst the alumni is Michael O'Donnell of the BBC and My Word fame. He was originally editor of World Medicine and later GP Magazine. That was the comic in which Richmond brought to the attention of a slightly wider world the 1989 Wessely, David, Butler, Chalder paper- prior to its formal publication, though O'Donnell was no longer editor.

Its a small world.

 

I only know of Nick Ross as a TV journalist from a while back. Various news programmes, and things like Crimewatch. Always came across as someone interested in fighting for the rights of those unable to do it for themselves. No idea how he fits into all of this though.

 

Just emailed a FOI request to Department of Work and Pensions [DWP] re Nick Ross:

"Nick Ross, on his website [https://www.nickross.com/clients/] states that DWP is one of his clients. I wish to know:

• when you began paying him,
• what period(s) he has worked for you, and
• what he was contracted to do during this period.

Xxxx"
@Caroline Struthers

 

Slight digress - discussion re AAPG's - including secretariat ship on the Paddy O Connell show - radio 4 [https://www.bbc.co.uk/sounds/play/m000ydnv - 50 minutes from start ish] referencing this article https://www.mirror.co.uk/news/politics/tory-mp-handed-paid-roles-24659796]

You may recall issues re previous APPG on ME and the secretariat ship of that group.

EDIT - so there are issues re APPG's being used as a lobbying vehicle (via the secretariat) guess many of you will have already been alert to this issue.

 

I was reading through Hilda's blog post on the pace trial: https://absolutelymaybe.plos.org/20...-the-me-cfs-exercise-dispute-matters-so-much/, and at one point she talked about how the researchers involved in the pace trial removed a lot of material that used to be in the public domain, which means it's actually impossible now to assess some concerns. What material is she talking about here? (I assume the raw data of the trial was never actually in the public domain)

 

possibly all the documents such as the training manuals, participants newsletters etc, that I seem to remember 'disappeared' from the original links. Luckily someone put them on ME-pedia

https://me-pedia.org/wiki/PACE_trial_documents

 

Looks like the new lie is that GET has no fixed increments, which no one ever said. Even though it's "graded", as in an incline, not "graduated", as in a standardized scale. Similar to the absurd justification for lowering the threshold of "recovery" to below the entry criteria and arguing that they never said people were recovered at the start, which no one ever said and is an especially absurd deflection.

Also, somehow, "unhelpful illness beliefs" is something they never said. Certainly not the main argument they have made over several decades. No, written record means nothing to charlatans.

How does no one outside of our small community not see how blatantly dishonest these people are? They play with words with less integrity than a doomsday cult leader having to justify why their end of the world date passed and missed, again.

https://twitter.com/user/status/1430618580337532937

 

Adding some documents about the
Actiwatch Plus by Cambridge Neurotechnology purchased for the PACE trial In case they are useful

Tracker Purchase info - PACE trial identifier
https://web.archive.org/web/20040715194646/http://www.bryantpr.plus.com/THE PACE TRIAL IDENTIFIER .pdf

Also uploaded the Actiwatch Plus Manual


Picture from another study
http://www.sen-instytut.pl/sleep_laboratory.html

 

Tracker images

 

It’s no more bulky than the Garmin smart watch I wear 24/7. I had been envisaging a bulky ankle monitoring device.

 

Obviously requires way more exertion than a regular exercise schedule.

Maybe it would be worth pointing this to the gullible journalist who repeated their lies. Then again if she cared about this it was very easy to check so if she wanted to check facts she would have.

The most amazing part is how transparent and easy to debunk the lies are. And it just makes no difference.

 

found myself drawn back into reading the protocol

"Assumptions
: At one year we assume that 60% will improve with CBT, 50% with GET, 25% with APT and
10% with UMC. The existing evidence suggests that at one year follow up, 50 to 63% of subjects with CFS had a positive outcome, by intention to treat, in the three RCTs of rehabilitative CBT,
15,17,18 with 69% improved after an educational rehabilitation that closely resembled CBT.

This compares to 63%
improved in the two RCTs of GET, and 47% improvement in a clinical audit of GET.

For usual medical care 6% to 17% improved by one year in two RCTs.

There are no previous RCTs of APT to guide us, but we estimate that APT will be at least as effective as the control treatments of relaxation and flexibility used in previous RCTs, with 26% to 27% improved on primary outcomes."

"3.20 Has any pilot study been carried out using this design?

We ourselves completed three out of seven of the RCTs of CBT and GET. The therapies and measures to be used are essentially the same as used in these successful trials. Because APT is less well tested, we will pilot this treatment in the first six months of the trial."

huh? they invented APT.

https://web.archive.org/web/20040715194646/http://www.bryantpr.plus.com/THE PACE TRIAL IDENTIFIER .pdf

eta: the more I read the PACE trial the more it reminds me of doing Economics A'level where we spent the first year learning all these theories and the second year seeing how they didn't actually work in the real world.

 

A few details about the Actiwatch and how the decisions were presented. Obviously the justification is transparently indefensible, and yet they don't have to defend anything at all, either journalists don't ask, or they avoid journalists who would. The system is completely broken when blatant lies like this can be maintained literally for years simply because no one cares about blatant lies.

Also I'm not sure how the statement by Sharpe holds up about PACE influencing the NICE guidelines when it happened after. PACE trial, the definitive trial that is both perfect and definitely did not happen. Obviously there are quotes by Sharpe plainly asserting that in his opinion PACE "proved" "chronic fatigue" is psychological, and yet again it does not matter that he lies openly about this, because no one but us care, they literally don't have to bother.

Thread:
https://twitter.com/user/status/1432473994289160194

https://twitter.com/user/status/1432658737089630209

https://twitter.com/user/status/1432671160966205440

 

Maybe Sharpe should read the PACE trial manual?

From page 18 of "Manual for Therapists, COGNITIVE BEHAVIOUR THERAPY for CFS/ME"

"According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance)."

 

the PACE protocol said

I'm sure that someone must have looked at the outcome measures of these 'successful' trials, but if they then used the same ones in the PACE trial, why did they then feel that they had to change them?

Presumably they were not considered 'too extreme' when they were 'successful'.