A general thread on the PACE trial!

It says mini documentaries, not documentary mini-series. To properly cover PACE, you'd need a documentary maxi-series with at least 7 seasons.

 

I used a doctored email from MEAction to contact my MP and MSPs - I have had an interesting response from one of the MSPs parliamentary assistants where I think they are confusing pacing with PACE - copied below without names
I have replied requesting a reference for the PACE info and raising the issue of informed consent and recording of harms - we shall see what comes back ...


Dear ,

Thank you for contacting the office of

I note that Scotland does not have a SIGN Guideline for M.E, therefore it is assumed the NICE guidance for Chronic Fatigue Syndrome is used.

NICE do advocate GET and CBT as therapies for M.E, but due to the controversy over whether this is the right approach the NICE guideline is to be reviewed in October 2020.

Some advocate the use of PACE rather than CBT and GET (which tends to push the patient a bit further beyond their limit and so creates more harm than good) whilst PACE 's strategy is to do what you can manage at the time.

As with any therapy, it is the patient's right to be able to make an informed consent and therefore treatments can be refused by patients if felt to be unhelpful or harmful.

Hopefully the revised NICE guidance will offer more choices and not be as rigid as currently.

NICE guidelines are evidence based recommendations for health care in England - National Institute for Health and Care Excellence.
SIGN guidelines are evidence based guidelines that identify and promote good clinical care in Scotland - Scottish Intercollegiate Guidelines Network.

Please do not hesitate to contact me if you have further questions.

Yours sincerely,

 

does no one check their 'facts' these days(?)

I don't know about questions, maybe a few links to things they maybe should have read before 'answering'.

 

It was unpublished but from the quoted part it looks like a poorly researched and one-sided article.

 

Yes
My letter had added links- including the MEAction treatment clinic survey, @dave30th 's version 3 letter to Lancet and the workwell pdf against graded exercise therapy ...

 

The article doesn't seem to be available at that link anymore.

Edit - the Herald article originally posted by Sly Saint and quoted by Tom Kindlon I mean. Sorry, for some reason having issues with quoting. Brain fog I suspect.

 

I noticed that too, I can't help but be a little suspicious as to the reasons why...

Cached:
https://webcache.googleusercontent....-cause-spike-cases/+&cd=1&hl=en&ct=clnk&gl=au

 

OK yeah that was a bad article.

Wrong. There are claims of this, not evidence.

Not what happened. At all.

Also wrong. The researchers did claim that during their PR tour. Neither the evidence nor the papers claim that. In fact the papers explicitly state it is not curative.

Odd framing without attribution that makes legitimate complaints sound unhinged or insincere. This is poor journalism.

"Being beneficial" is not a valid anything. It is also false considering the numerous surveys and studies showing otherwise.

It had a few good parts but overall very poor journalism. Better that it's not out there. Weak.

 

Some good suggestions have been made on FB emoji_wave: ) for you.....we just have to keep on educating these MP’s/ MSP’s.

It’s slow work, but we keep trying.

 

seems to be back up again

 

Rather than duplicating two of my posts here regarding PACE, I shall just provide the links to them.

https://www.s4me.info/threads/my-comments-to-the-cochrane-review.15154/#post-261200

https://www.s4me.info/threads/my-comments-to-the-cochrane-review.15154/#post-261255

 

Australian ME/CFS advocacy award honours Alem Matthees
https://may12th.org.au/australian-me-cfs-advocacy-award-honours-alem-matthees/

https://twitter.com/user/status/1260367777459695616

https://twitter.com/user/status/1262026317001867264

 

https://twitter.com/user/status/1263101177886990337

https://twitter.com/user/status/1263101861638201349

 

There is a section on the PACE Trial on this page ["Chronic fatigue syndrome treatment"] in Wikipedia, which seems to have been edited recently (I just got an update)

 

Current version:
https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment

Earlier, Sep 2019 version (not sure if web archive missed anything in between):
https://web.archive.org/web/2019101...a.org/wiki/Chronic_fatigue_syndrome_treatment

 

Man with a very prominent platform who calls a population of millions of sick people begging for help a "small vocal minority of very damaging individuals" has favorable opinions on being angry about bad research and health policies.

https://twitter.com/user/status/1270475064463540229


Not really PACE-related but given his insulting lies labeled at us for daring to question bad science, it is in very poor taste.

 

how is it that Horton is so unaware that he has been in a powerful position of aiding and abetting poor quality 'science'? So this is what happens. This is a direct result of elevating incompetent science / political people with only a superficial comprehension of science.

 

I think his sense of irony is broken.

https://twitter.com/user/status/1270473958094225408


https://twitter.com/user/status/1270455968699240448

 

Horton is rushing out a book on COVID19 this month.

I'm trying to remember what he was saying about travel restrictions and other COVID related issues back in Jan/Feb... It's easy to throw stones at people in glass houses...

edit - seems he was somewhat concerned from Feb 1st, but didn't make any specific recommendations.

https://twitter.com/user/status/1223264064719216640


https://twitter.com/user/status/1222874749329715207


https://twitter.com/user/status/1220606842449072128


https://twitter.com/user/status/1220609600900210689