Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Agree, the Guardian has been woeful in its coverage of ME.

 

I'm generally a deep believer in things being cock-up rather than conspiracy*. Despite being more aligned politically to the Grauniad than the Mail, I think the former has been worse on ME because it has a worldview that is more deferential to doctors/scientists/the NHS. Whereas the Mail loves a ‘boffins got it wrong’ story. Either prejudice can get it wrong - the Guardian on ME, the Mail on MMR - but it is depressing to see a paper that proclaims to be on the side of the vulnerable often end up punching down.



*Talking of conspiracy, I think the Canary article by Steve Topple is likely to harm rather than help our cause - given his history of engaging in conspiracy theories and tropes many might consider anti-Semitic, he’s an ally I can do without thanks. If you wanted to give the impression that ME ‘activists’ are conspiracy-minded loons, he’s precisely the person you’d have advocating on PACE.

 

@Carolyn Wilshire We're discussing the TSC and TMG meetings over on this thread, if you'd like to join us: https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/

 

https://twitter.com/user/status/979819812854599681

 

I believe it's more about the fact that the health editor seems to have a very restrictive view of the illness. I wrote a very polite email to her when she wrote a piece about the benefits of the Lightning Process, which she responded to very curtly and said she wouldn't be replying to any further emails I would send

 

https://twitter.com/user/status/980807292173148160

 

https://twitter.com/user/status/981292339292286976

 

Healthwise's "Contact Us" webpage was broken, and their webmaster was grateful to me for letting her know about it.

Once fixed, I sent Healthwise a link to the paper, asking them yet again to consider removing CBT/GET from their ME/CFS materials.

Unsurprisingly, Healthwise didn't respond.

 

https://twitter.com/user/status/981201284526235648

 

https://twitter.com/user/status/979274940649299969

 

Code:

https://twitter.com/PeterTatchell/status/981248768677904384

https://twitter.com/user/status/981248768677904384

 

An apology would be nice, but what they actually owe us might bankrupt the health service.

 

I think John Slater's comment (see post #190 above) really emphasises how vital it is for clinical trialling of behavioural remedies to control not just for trial-intervention-compensatory behaviour outside of the trial, but for illness-adjustment-changing behaviour outside of the trial, which as John clarifies was dramatic. The more I learn about PACE, the more it seems not just a badly controlled trial, but an out of control trial.

 

Via Peter Tatchell's twitter (linked above) I got to this link :

https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b

A quote from the DWP on that link :

Whenever I read any kind of comment like this it always make me think of the Auchwitz entrance with its motto "Arbeit Macht Frei" (Work Sets You Free).

 

I wrote this in a comment the other day but deleted it before publishing because of Godwin's Law. It's also the motto behind PACE, I feel.

 

To the above tweet Michael Sharpe simply said "Except it doesn't."

It is clear he does not give a shit about patients.

 

Iain Duncan Smith actually said "look work actually helps free people". Lord Freud abstacted disabled people into "Stock". I can why you would get the impression that that could only be done, publicly, in a society that approves of punishing poor people and other undesirables. (i.e the real world we live in)

The whole philosophy is a bastardisation of the banal fact that people with enough income to satisfy their wants and needs are healthier on average. Income was turned into 'work' because another way to increase income is by wealth redistribution policies to the poor.

 

Spoiler: warning: moving gif

I always think of this gif when Sharpe and Wessely attempt to defend PACE.

 

Can you or someone else please tell me how to stop such moving images moving?! They do my eyes and sometimes my head in!

 

Afraid you cannot do that without blocking all or most images I'm afraid MeSci. (I think)

I'm sure Art didn't mean to cause annoyance, it's just one of those things we do without really thinking.