UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

https://twitter.com/user/status/1011523761097576448

https://twitter.com/user/status/1011592188814352384

https://twitter.com/user/status/1011594639122550784

 

I'm sure I've seen it said somewhere that, while those who speak during a debate are obviously recorded, those who simply attend aren't.

On the subject, but not quite answering this particular question, https://www.parliament.uk/site-info...ivisions-by-individual-members-of-parliament/

 

So how does their fire safety work?

 

https://www.parliament.uk/documents/transparency/healthandsafety/Fire-Safety-Policy.pdf

You're welcome

 

https://www.s4me.info/posts/46352/

 

FWIW, I recently won my ESA tribunal having gained enough points to go back to work but the tribunal saying that my mental and physical health could be made worse by putting me back to work.

I read this (more or less) as the tribunal bypassing the WCA test.

FWIW (II) I did include references to the NICE guidelines review and the troubled PACE trial, amongst other things.

My guess is that tribunals are now more wary about the way the DWP deals with this diagnosis.

What I'm clumsily trying to suggest is that an activity group, possibly based on the science of 'work is good for you' could, I'm suggesting, possibly be challenged in a legal way.

 

I'm glad to read your appeal was successful @AR68. It sounds like they felt you met substantial risk to health under the ESA Regs.

It might be a slightly different kettle of fish wrt mandatory reconsiderations in particular but also the appeals process for WRAG-associated sanctions, simply because a claimant has already been adjudged sufficiently well for work-related activity. But of course that isn't to say were someone to appeal a relevant sanction on the basis of a general objection to GET/CBT that it wouldn't be worth producing (a proportionate amount of) evidence on the NICE review and PACE issues.

 

I appreciate your point but, without putting my appeal papers online (which go into greater detail), I think the DWP are on awkward ground if they attempt to go down the 'activity' route.

I do take onboard your point though.

 

I fully agree with this. But I've just had a response from my MP, who in stating this, seems to be using it as a prop for implying MPs should not be getting involved at all. I know this is a cop out on his part, but would like to be able to respond back with what I believe MPs should be doing ... but I'm having trouble pinning this down to something succinct and concrete - if I cannot do that then there is no point replying to him. I don't want to get bogged down into all the stuff we know, but would turn him off in seconds. But I don't want to just respond with nebulous generalities. Succinct and concrete. If I can do that then I can reinforce it by asking him to support Carol Monaghan in getting a House of Commons debate, or at least try to get him to attend such a debate. But I need one or two tangible and worthwhile objectives that MPs most certainly should get involved with, else he is not going to be convinced of there being anything to debate. I'm unexpectedly struggling with this.

Any help, from you Jonathan and/or others, would be much appreciated. Short notice, but would like to get a reply back to him tomorrow if possible.

Many thanks.

 

You could respond saying that you agree that it would be completely inappropriate for Members of Parliament to interfere with NICE's established procedures for reviewing a guideline. However given that NICE has publicly stated that one of the reasons it's reviewing the guideline is that there are doubts about the safety and efficacy of CBT and GET, it seems completely wrong that the NHS should go on recommending these treatments while the NICE review is ongoing. There are numerous testimonies (and patients surveys) showing that sufferers' health has been dramatically worsened by these treatments and other countries have now stopped recommending them.

The NICE guideline review should be allowed to be run its course - but you would like him to write to NICE and ask them to reconsider their decision to leave the current guideline in place for the next two years, while the review is carried out. There's no telling how many peoples' health could be negatively impacted by CBT and GET during that time.

 

Sadly from a parents' forum tonight i learned of an ill child ( has been assessed by a charity at parents' s request and advised as very ill - i am assuming moderate slipping towards severe) who at the fatigue clinic appointment was pronounced to be getting better and so should be commencing sleep hygiene and GET . The reason given - to address deconditioning.
Unless GET is kicked into touch how many more children will be harmed in the next couple of years.

 

I have been looking through old papers and came to the view that a possible source for the views for GET derived from a paper

Edwards RHT 1986 Muscle fatigue and pain Acta Med Scand Suppl 711:179-188

This, at any rate was quoted by Sharpe in 1993 as his source.

Strangely I have just come across this from Edwards:

Many patients report a strong link between exercise and an exacerbation of symptoms. If this is the case, there are no clear grounds on which to particularly encourage exercise. However, it seems reasonable that the undesirable consequences of inactivity should be minimised.

Muscle biochemistry and pathophysiology in postviral fatigue syndrome. Edwards RHT Newham DJ Peters TJ
British Medical Bulletin (1991) Vol 47, No 4, pp826-837 @p835

This does not sound like an endorsement of GET.

The whole edifice appears to be built on sand.

 

I agree with Stewart that it would be entirely reasonable for MPs to say to NICE that their understanding of the situation is that current recommendations are seriously in doubt and may even be considered unethical. On that grounds NICE should seriously consider withdrawing the recommendations in doubt (in enough doubt to have justified the review) immediately pending review decision. That is not interfering with their opinion, it is just saying bloody well get on with it!

 

Yes, the more I hear about the past events the more it looks to me that the BPS people made use of Edwards's work. Although he and Di Newham worked along the corridor from me I never got a clear idea of his view of ME at the time. I would have expected him to have a sophisticated enough appreciation of the problem to say what is in that quote. I suspect that the BPS people made use more of the work on muscle changes during training of normal muscle that was the groups main focus - i.e. misapplied it.

One thing that maybe one day I should do is contact Richard Edwards and ask if would be prepared to give his view on recent events.

 

While I think of it, did anyone get hold of a copy of the briefing that Michael Sharpe sent to MPs ahead of the debate? It would be interesting to see how his alternative facts are put across.

 

I think someone did but it may be confidential. My impression was that it did not say anything particularly new.

 

But that in itself would be interesting, after the huge volume of soundly based criticism that Michael Sharpe must have read by now. If he's still spinning the same old rubbish, it would be good to know.

 

I'm sorry to tell you that RHT Edwards died in 2009.