Forward-ME Group Minutes - 8th May 2019

“Sam Bromiley (AfME)asked about the debate in the chamber of the House of Commons last January. Had anything more come out of it? Katherine Ladd (researcher to Ms Monaghan MP) said Carol Monaghan would like to take things forward but so far nothing had happened.”

This would be a concern if nothing has happened because the MP feels stuck as to how to move things forward ...The response from the minister who had attended two debates was entirely unsatisfactory , basically nothing will change and repeating tired old excuse of not enough research interest whilst offering nothing to change this, such as a financial lure.

What about that meeting with RCGP lead, did that happen.

I thought that #MEAction uk was driving on Parliament getting progress for us.

 

I was at uni with Katherine Ladd. She's brilliant!

 

I agree with you @Dx Revision Watch, the wording of the minutes are often ambiguous.

Shame Dr Karl Morten ‘of Oxford’ can’t update his NHS Trust!

 

Yes, I agree, @Cinders66 . My MP is still working on educating colleagues in DHSC, although he has now been moved to be a PPS (Parliamentary Private Secretary - back bencher who works in a Govt Dept) for Defence from Health (which is a pain, as he hasn’t got the same amount of access to educate about M.E. as before!)

I have also suggested to @EspeMor that #MEAction England South East (who cover Steve Brine’s constituency) could see whether they could now ask some constituents to ‘adopt’ Mr Brine (as he resigned from the DHSC position) and turn him into a supporter of PwME - as he knows a lot about it.

I believe actions are also still being followed up about the letters that were addressed to Steve Brine, following the January 2019 debate, regarding improving education for GPs (see Nina Muirhead’s work in progress).

Finally, details of the meeting with the Minister for People with Disabilities, which took place last week:

https://www.s4me.info/threads/me-as...eting-with-dwp-minister-about-benefits.10157/

 

Thanks for your informative comment. Do you think Stephen brine gave any indication of being an ally though? He slammed us back in the box afaic despite listening to two hours of informed MPs saying that the status quo had to be improved on...
Dr Charles Shepherd said on MEA that whilst the rcgp guidelines were unsatisfactory (the ones SB was actually holding up as look there’s good education) they probably won’t budge until NICE changes. I however felt the RCGP GUIDELINES were much more undiluted BPS clap trap than NICE.

Edit I actually thought the stand out MP ally at the debate was dr Philipa law? As a dr scientist her view carries authority on health and scientific matters, she’s also a great orator. If the Scottish MPs could unite and really push on this it might get somewhere, at least on the requests of the #MEAction manifesto. I can’t find a manifesto for #MEAction UK So I don’t know on biomedical research funds what they want.

 

No idea re Steve B, but I have quoted a previous message of mine from another thread for you to have a read. A Labour MP was grateful for helpful info that SB passed on.
He also has a constituent who recently has been having problems with UC (basically ‘computer says no’, despite claimant doing the correct procedure.....also see above), so this may also assist his understanding of the frustrations of applying for benefits in the U.K.

I know work is “ongoing” regarding the quality of RCGP ‘ME education’. I believe there are two training modules and only one of them is problematic (therefore have needed to be careful). Awaiting further updates from Dr Muirhead - see the recent Forward-ME minutes published.

I also believe a further request has been made for that ‘round table’ discussion with RCGP that the Minister promised Carol Monaghan.

Problem with Government is that everything moves exceedingly slowly! Suppose it gives a brain cell chance to recuperate after busy times

 

I'm not sure that #MEAction South East is much more than a Facebook Group.

However, I think that @chicaguapa, who organised the Southampton event might know him/be in his constituency. I think she has been in touch with him directly.

Apart from @EspeMor I think MEAction runs on UK volunteers with input/guidance from USA as appropriate. These people generally have ME or are carers, so we know how variable the capacity can be.

 

There were 3 posters on the medical education work that Tina M plus students are doing, at the IiME conference.
I didn't notice them till towards the end of lunchtime and was having v useful convo with Mary Dimmock at the time. Am sure that info must be available from someone, or maybe on the You tube videos.

 

Thanks for posting.

The NICE stuff doesn't sound particularly positive.

 

I think Willie was misunderstanding something. We've only been setting protocols. We haven't discussed treatments yet, only the protocol we'll use to look at the evidence for treatments.