UK Parliamentary debate today - Thursday 24th January 2019

Very lucky to have him as my MP. He's a good one.

 

Given that the CureME team at the UK ME/CFS Biobank had to get funding from the NiH that is obviously inaccurate.

 

Considering that it is not, and should not be, in the power of ministers to determine what research gets funded or what NICE recommends, the minister seems to have conceded about as much as he could. Certainly he seemed less combative than last time. Very little attempt was made to defend past decisions.

In addition to Monaghan another Scottish lady made a particularly well crafted speech about the problems with past research, which means that the key problems will be recorded in Hansard.

I have no experience of how things progress from a debate like this in a context like this but one might expect there to be some defensive statements made in public over the next 24 hours.

Certainly it looks as if advocates of a biopsychosocial approach have suffered a dent to their PR campaign.

 

Given that a major concern was the treatment of minors, sometimes enforced by court proceedings, the minister's response that patients are free to accept or decline treatment looked pretty lame.

 

I know this off topic but I can't keep my mouth shut on this! Just followed straight on from the ME Debate. Chi Onwurah just said that Liverpool only has one First Division football club (might not be First Division as I've totally lost track of what the various things are for footie clubs these days). Total falsehood! Everton is also in First Division (or whatever it's called now) and that is definitely within Liverpool. Just shows how much even someone putting up a Debate knows about something or even bothers to do their research.

Thank goodness we have, in Carol Monoghan, an MP who does her research properly!

 

He hardly mentioned children or the severe , yet quoted that the severe should get help via non existent specialists.

 

May have been my MP. She requested bullet points yesterday

 

Justine Greening popped in to say 'what's needed is research'.......didn't say what type tho.

Steven Pound; a lot of bluster but not much content.
Merryn Crofts MP still referring to CBT/GET treatment as 'PACE trial'.

A point that needs raising in that context is that the majority, if not all of those, currently considered 'ME/CFS' experts/specialists advocate CBT/GET and believe ME should be treated as a psychosomatic illness. We don't want more of the same.

eta: with regards to the result of the vote there is no way that the BBC can report this time about CBT/GET that 'some defended the treatments'.
I'm still waiting for a reply to my complaint about that reporting of the last debate btw.

 

Yes that’s good. If we had an appg all those MPs would know that important stuff . It’s good to see that line couldn’t wash after the DoH putting it out widely last year in the media that we were getting significant funds

 

Interesting. The co-existence of the Scottish Parliament (which I assume is led by SNP) and the UK Parliament, with SNP members, may add a layer of complexity to what is going on. Presumably the SNP-run Scottish Parliament decides on health care policy in Scotland (which is independent of NICE) and presumably it is in tune with SNP health representatives at Westminster. The Scottish Parliament seems to have taken seriously Emma Shorter's petition, and it sounds as if the SNP health lead at Westminster is aware of the material there.

Should we be expecting Scotland to announce some sort of policy shift in relation to treatments first? I don't remember this being raised but I may have missed it.

 

https://twitter.com/user/status/1088487798833930240

 

I second this. Not a good afternoon for me, did too much this morning, so grateful to be able to dip in and out of this thread.

Thank you to all who posted.

 

Does this justify the government funding utter prejudicial unscientific bullshit, even if it was true that people aern't compromised by refusing such "treatments" and parents put at risk of family interventions, child protection orders, school attendance officers and worse for "refusing treatment" for their children.

 

@dave30th: I really do think Brine needs calling out on this, because it is such a blatant cop-out from responsibility by his department, and I'm sure others I've heard in the past. Here in S4ME we are all pretty switched on, but we are not typical of the general ME population. A great many rely on the advice of medical professionals, because ... that's what people do when they themselves are confused and in need of help, and don't know where to turn to ... they turn to the obvious source of help. The last poor sod to know what is best for them is the patient, more often than not! And in any case, some of the medics would be persuasive anyway. Patients are so very vulnerable.

Brine really shows up how little his department understand or care. And he has done it very publicly. Unanimously carried, and he regurgitates bullshit like that. Tells its own story. Sorry, in rant mode.