Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

JohnTheJack said:
Some of us have written to @Action for M.E. about this statement. The exchange is below.

While it's not everything we wanted, I think it is a good reply from Sonya.

Thanks to all those involved, including one other who helped with the drafting.
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Thanks so much for doing this.
It seems they don't want to catch up to facts and science and are only doing it out of unrelenting pressure, they want the "comfortable" for them but well outdated views as long as they can justify them :cry:
A patient organization that harms patients for its own "convenience"... :emoji_face_palm:
 
I cannot believe how bad @Action for M.E. are... I try to give them leeway to improve, but why do they have to be so needlessly rubbish?! Maximum frustration...



edit: So the CEO of the Society of Occupational Medicine is making unfounded claims and hyping specialist care as a way of improving employment outcomes (just like White did to Unum, even when PACE showed CBT/GET failed to lead to improvements in employment outcomes), and @Action for M.E. respond by thanking him, and then sharing their own hyped employment project, which also lacks any evidence of helping people achieve their employment goal.

This at a time when so many patients are being pushed into poverty due to insurance companies/DWP/doctors/disability assessors/tribunals making unfounded assumptions about people's ability to improve their employment outcomes if they engaged properly with rehabilitation. Do they not understand what they're doing, or just not care?
 
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Jonathan Edwards said:
Does anyone know what this means?

'including leaving work well if they are too ill to continue'
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I would hope it would mean getting whatever financial support they are entitled to from their employment contract - compensation if dismissed on efficiency or attendance grounds, or occupational or private pension scheme benefits - Ill health retirement. And any state disability benefits.
 
What is the evidence that for people with ME trying to keep working promotes ‘recovery’ as asserted in this tweet. PACE provided no evidence whatsoever of having increased employment.

My experience is that trying to follow AFME guidance on pacing and phased return to work got me nowhere.
 
NelliePledge said:
What is the evidence that for people with ME trying to keep working promotes ‘recovery’ as asserted in this tweet. PACE provided no evidence whatsoever of having increased employment.
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None that I know of.

These tweets remind me of London Borough of Barnet Refuse Collection Department. They have stickers that in effect say 'however awful a mess you are in we are determined to persuade you that we are doing a brilliant job to look after your interests'. (We even have people paid to think up ways of saying that on stickers.)

I read 'leaving work well' as 'leaving work healthy' when of course it meant 'leaving work one up on the bastards who try to grind you down'.
 
Jonathan Edwards said:
None that I know of.

These tweets remind me of London Borough of Barnet Refuse Collection Department. They have stickers that in effect say 'however awful a mess you are in we are determined to persuade you that we are doing a brilliant job to look after your interests'. (We even have people paid to think up ways of saying that on stickers.)

I read 'leaving work well' as 'leaving work healthy' when of course it meant 'leaving work one up on the bastards who try to grind you down'.
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This article gives an overview of issues involved when your employer dismisses you on ill health grounds
https://www.moneywise.co.uk/health-insurance/work-family/your-rights-ill-health-dismissal
 
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Esther12 said:
I cannot believe how bad @Action for M.E. are... I try to give them leeway to improve, but why do they have to be so needlessly rubbish?! Maximum frustration...
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This is why we should not fall for empty gestures and slightly less playing both sides.
If they want to get our respect and trust they should have to earn it piece by piece.

They are not on our side, they are a thorn in our paws who play both sides and we should deal with them on that basis.
 
NelliePledge said:
Pity AFME didn’t make this point in their original retweet it appears to have been ignored. I hope they are pressing for a response.
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Also, that's a claim that's always spun to try to indicate that "not attributing the illness to physical causes" is a good thing. Of course, it's not surprising that those who believe that psychosocial factors are an important cause of their ill-health are more likely to benefit of psychosocial treatments... just as those who believe that cancer is a cause of their ill health are more likely to benefit from cancer treatments.
 
"Employment has a positive impact on recovery"

This is exactly wrong, how can we have got to this stage, with so much research, so many people who could just be asked (these people do love a survey!)? It is not ignorance because the facts are out there, so it has to be a deliberate CHOICE of facts.

Why do our charities (which are happy to take our money!) not come down on them like a ton of bricks. The BPSers continually repeat their lies until they become embedded so why can't our charities keep repeating the truth?
 
oh it's it's easy to see the 'reasoning' tho. People who are working, are less sick, as they are able to work, must therefore be more recovered, it's not much of a leap from that simplistic idiocy to "Employment has a positive impact on recovery".

Of course if you take it literally, yes of course it does, it positively has a negative impact upon recovery - but a negative impact is an impact, so they aint lying (although a certain amount of misdirection may possibly be occurring, just enough to completely reverse the actual facts, so hardly at all really, not by political standards).

or...some other idea's expressed using different words - possibly about puppies, maybe puppies in fields, which may also contain slot machines.
 
Mithriel said:
Why do our charities (which are happy to take our money!) not come down on them like a ton of bricks. The BPSers continually repeat their lies until they become embedded so why can't our charities keep repeating the truth?
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Because they believe the lies or are afraid to confront the BPSers; this means that the patient charities harm rather than help patients.
 
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Sly Saint said:
@Action for M.E.
this pdf on pacing from 2013 is still available.
https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf
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It is also the one linked to on NHS Scotlands website:
https://www.nhsinform.scot/illnesse...pinal-cord/chronic-fatigue-syndrome#treatment
@Emsho

and the information on GET and CBT is still also cited as being sourced from AfME

eta: Oxfordshire CFS clinic has same link but it goes to AfMEs Q&A pages
https://www.oxfordhealth.nhs.uk/service_description/oxfordshire-chronic-fatigue-syndrome-me-service/
 
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