Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

SNP MP secures debate on controversial DWP-funded ME trial
http://www.carol.monaghan.scot/2018/02/07/pace-trial/

 

It also has knock-on consequences for later state pension entitlement, because only certain DWP sickness payments accrue National Insurance credits, and are much harder to get if mis-classified as mental health.

 

See also @Sly Saint's new thread ...

"Government and Insurance companies - establishing the BPS model"

https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/​

... which looks very relevant.

 

Charles Shepherd from The ME Association and infectious diseases consultant Dr. William Weir had a meeting with Carol Monaghan yesterday. Here is a recap of the meeting and what they covered. It also says that it is likely the debate will be recorded by parliamentary TV.

The ME Association: Westminister Hall Debate: The PACE trial and its effect on people with ME - A meeting with Carol Monaghan MP

 

Ye, that's why the big networks and politicians are so good at predicting recent election outcomes cos its best to ignore social media and use your mates to tell you whats going to happen cos they are in the mainstream networks and so are you.

Ignore direct information from the people they have no idea that mainstream is surveying the people to present what the people will do and what they think.

Laughable.

 

Excellent news.

 

I think it would be a mistake for Carol to raise most of that stuff.

If we've got a chance to challenge someone from the Ministry of Health on the specific problems with the PACE trial there's no way it would be a good idea to start talking about "lack of proper multidisciplinary NHS hospital-based services", treating with antivirals, or mitochondria issues.

If she starts bringing that stuff up it will perfectly allow the Minister to respond with 'compassionate' waffle, and make CBT/GET seem like more evidence based interventions compared to speculative alternative treatments like antivirals. I don't understand why anyone would think that is a sensible line to take in a debate on PACE. [edit: It could be I'm being unfair here, and that the briefing was very largely about PACE, and then they just happened to mention a few other things in passing, without any suggestion she raise them during the debate. It's not clear from that summary, and I probably shouldn't read more into it than was there. I may have let my nerves run away with me!]

There are clearly indefensible problems with PACE that it would be difficult to properly cover in 10 minutes. Why not focus on them? I have to admit to being pretty baffled by that briefing. Hopefully Carol will still focus on the problems with PACE in the time she has available.

PS: Those currently being paid to provide "multidisciplinary NHS" services seem pretty keen on making misleading claims about CBT/GET, and have certainly not been of any help with highlighting the problems with much of the research surrounding CFS. I'm far from convinced that they're a sensible priority for funding.

 

As I understood it, these were items covered on yesterday's meeting, but that PACE will be main subject at Westminster Hall.

 

Yes - they seem much more useful topics to raise. I was also unsure if someone from the Ministry of Health was really appropriate for the response.

I wonder if they will still be able to find people willing to promote PACE's spin? What would be in it for a career politician at this point? In ten minutes, Carol would be able to undermine PACE, and most of the possible defences (and maybe explain some of the problems with Cochrane too). Maybe the Minister will not try to do much to defend PACE?

I'd have preferred a focus on PACE (there's enough to talk about!) rather than risk distracting things with more tentative findings.

 

I suspect the point of mentioning the various physiological things that CS lists was to illustrate that ME is not psychological, since the assumption that it is is a key flaw in the logic of PACE.

For people with no particular background in, or awareness of, ME, like, I expect, most MPs, pointing out that it is in fact biological rather than psychological is worth doing, otherwise they will probably default to assuming it's a mental health issue.

And I guess they raised some issues around biomed research (like antiviral trials etc) to illustrate the problems with funding, and how much was wasted on PACE.

 

I don't think that assumption is a key flaw in the logic of PACE, and all too often the 'psych vs bio' debate is a distraction from the real problems with PACE, and can let people portray PACE critics are just being afraid of the stigma of MH. It would be possible for a condition to be related to mitochondria problems, and for CBT/GET to be useful. PACE is seriously flawed regardless of what CFS may or many not be, and it seems a needless risk to bring up other research findings which are still uncertain.

Some people classing CFS as a mental health condition, or semi-MH, or whatever, can have important legal, financial and political implications, and I'm not saying we should just ignore this, but it's best to have that be as marginal a part of the debate about PACE as possible imo.

I suspect people like Lord Winston would be less keen on speaking out in support of PACE at this point. At the time it was clear that he and the others speaking in defence of PACE had no real understanding of what they were saying.

 

I doubt the DWP would have thought it worth contributing to the cost of PACE had they not thought it could yield a cure for ME, and thus get people off benefits. The DWP have apparently not paid towards any other clinical trials. They were keen to be involved based on the assumption that ME is psychological, and that CBT and GET might fix it.

Since taxpayer money, and a government department, were so directly involved in PACE, I think pointing out that the basic premise about the illness on which the trial was based is completely flawed is pretty relevant when talking about it to MPs.

 

It's a shame they couldn't all just watch David Tullers rip it up speech:

 

It's not really a clear cut issue though. They're promoting similar approaches for MS. A lot of the biomedical research around ME/CFS is still tentative. Whenever I've seen real debates about PACE, this is an issue which tends to go against critics, or lead to an uninteresting discussion and draw. It's an area where PACE defenders are best placed to push back, or muddy the water, so I'd try to focus on other stuff.

 

Thought I should add that, while not keen on some of the MEA briefing, I'm sure that they did a massively better job than Action for ME would have.

 

I take your point @Esther12, although I didn't think there was still debate about whether ME is physiological amongst those who've actually looked at the evidence objectively.

I guess I'm just not sure how well MPs will do with the technical/math arguments - I suspect they might switch off. From that point of view, and given that MPs likely know little about ME, giving them some of the bigger picture as it relates to PACE could help. I assume that's what the ME Assoc. were aiming to do.

 

There's so much uncertainty over what it even means for something to be a 'mental health' condition that there might always be some debate, and at the moment we're still lacking a solid understanding of the cause of ill-health with ME/CFS. I find that the whole area has a lot of room for cloudy dissembling that lets people avoid the clear problems with PACE.