UK Parliamentary debate today - Thursday 24th January 2019

If the SMC put out their usual spin this time, every MP who was in the chamber or watches the debate will clearly see them for what they are. The SMC will probably continue until they are calling everyone else in the world a liar, but the number of people involved and likely to think "Hang on a minute, I was there ..." is growing all the time. So let them demonstrate their antics a few more times before the debate becomes about them, it will serve our purposes nicely.

Ah yes, there is always that to look forward to. Railing against all those MPs behaving in such an unbecoming manner.

 

They probably just won't report it at all.

 

A public enquiry maybe.

I'd like to see them give it a go, because they will be accusing a lot of prominent MPs in that case, so I doubt they will now. But it really highlights to a wider audience how empty and histrionic their previous accusations have been.

 

That was not what I was trying to imply. What I was suggesting was that Monaghan was convinced that she could have impact and rightly so, but not by forcing a minister to make promises in a debate. The point of the debate is to shift the perception. Maybe if perceptions shift enough and Nikki Morgan has a word in the ear of Mark Walport who has a word in the ear of Fiona Watt and somebody is quietly asked to stand down from their advisory position ... and so on. It is not the place for ministers to interfere with independent bodies but there is no harm in helping people to suddenly see things a bit differently. Science moves by shared perceptions. You cannot overrule that. The BPS people have worked through controlling perceptions.

 

Agreed. Asking MPs to vote for something that government has no remit to undertake, is just asking for the vote to go the wrong way.

 

I'm bracing myself for tomorrows media reports if any.

I expect them to be along the lines of what Steve Brine says. In that they seem to come out in support but then go on to undermine the support with untrue statements pretending to be authoritative facts on the subject. I expect that some of the media have been thoroughly briefed and will be bringing their 'A' game and using subtle barbs toward ME patients and advocates.

From reading/skimming above I take away two points (there may be more to mine and bring to light) from what S Brine said.

People can 'opt out'. Except we know that insurance demands it (even in Canada). And families with sick children run risk of child protection services.

Also, there were in fact biomedical applications submitted and worth funding as the NIH clearly thought so.

I think there needs to be a public rebuttal to his disingenuous responses.

 

I'm guessing the SMC will come up with some wishy washy half-baked news report on today's debate, or maybe not at all. Whatever it is, or is not, it would be good for the MPs who attended today's debate to have that brought to their attention in due course, so they can see how the SMC influences the media in this area (as I'm sure it does in many other areas).

Edit: X-posted with @Snowdrop.

 

I'm expecting the Science Media Centre crew to be working behind the scenes at this point, rather than doing more that risks making them the story. They didn't do anything openly about Cochrane saying they wanted to withdraw Larun's Cochrane review.

 

And the whole BPS crew praying that Michael Sharpe doesn't go on twitter.

 

Further to the topic on the 90 min online RCGP training course on ME for doctors the Minister mentioned in the Parliament debate today, Invest in ME have just written to tie in with the debate a great document on the main issues in ME. Pages 14-21 go into great detail on the lack of appropriate medical training and education. In it, it says, ‘no acceptable courses exist for ME for doctors that are not been based on these BPS theories of ME.” I will take that as further evidence that the RCGP online course is almost definitely bps based.

http://investinme.org/Documents/Fac...or Action - Parliamentary Debate Jan 2019.pdf

 

Which will be a case of silence speaking volumes. And less likely to go unnoticed. I suspect there may be a degree of hand wringing going on.

I think the health minister's response is of minimal concern, strange though it may seem. We all knew it would be nothing else. It's everything else that is so very good.

 

Full debate on YouTube:

https://www.youtube.com/watch?v=79BaSpvHywI

 

@EspeMor , do MEAction have any plans for a guide/easy to use tool for patients to be able to follow up with their MP about the debate. i.e. thank you for speaking at the debate/thank you for attending the debate/saw you weren't at the debate and this is what you missed (delete as appropriate) type of thing? Similar to what was created to help patients ask their MPs to attend?

 

I wrote the above just after watching the debate and having missed the first bit of Carole Monaghan’s opening speech. So only until I read the transcript did I see she touch on the psychs role in wrongly portraying ME as a primarily psychological condition and of course the failure of the PACE trial results in supporting their dreadful deconditioning theory.

 

What was this? I don't remember from last time.

 

http://bit.ly/2zafyfC

 

Steve Brine's words from last time around come across as time-filling and crocodile tears.

 

https://hansard.parliament.uk/commo...4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

The notes are out now

“ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted.


Surely it would just take a second!




. One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding.

Well they were given allotted funding too by the department of health for research as part of that package... But yes precisely, a comprehensive action plan was designed And implemented to stimulate the field. Where was his action plan for ME , there was no mention of anything to improve the situation.




The truth is—sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma—a point raised very well by the hon. Member for Lincoln; she looks delighted that I have mentioned her—and partly because of the division in the medical community. We need people to come forward with good research proposals in this space; that can only be advantageous.”


Stigma - caused by the medical profession, stigmas doesn’t just arise from illness being unexplained or complex. So the establishments fault.

Division in the medical community, well how is that going to change. We have been needing people to come forward since the MRC 2003 highlight notice but they haven’t. Stating something that isn’t happening and won’t just happen would be advantageous if it did, as if it’s the answer, is not helpful. I need a cure , that would be advantageous. Would the minister care to predict, on past and current levels of progress, how many years it’s away?