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

I agree with my learned colleagues ...pursuing RG is just a waste of time... .it’s a smokescreen put up by a minister trying to waste our energy by diverting us away from the real issue ...I’m glad he enjoyed watching unrest but I want a little bit more than just platitudes.

 

Thanks. I hadn’t actually noticed that, but I was wondering why it was suddenly getting so much attention.

That was the point I was making in my Tweet. Hopefully, the Minister’s tactic will backfire and draw more attention to the failures of the DHSC et al.

[Edited to add – it’s been a good week for own goals.]

 

I didn't like Ricky 's joke either, but frankly I have had much worse said and done by disbelieving or ignorant doctors and people assessing me.

This distraction by blaming a comedian didn't work in the past for a prime minister and I'm hoping it won't work now.

 

Just to say sorry to hear about all of that.

 

To be fair we've been blaming a bunch of comedians ever since they authored the PACE trial.

 

Hi all - slightly tangental, but I hope still relevant...

Just to let you know episode 10 of my podcast The ME Show (out in two weeks) will be dedicated to this parliamentary debate and feature key highlights from it, if you were looking for a 'cutdown' and narrated version to listen to.

Ideally, I wanted it to be the episode coming out this Monday, but it's just too much to turn around that quickly.

Incidentally this Monday's episode is a very moving one with a full time carer of somebody with severe ME. If you haven't already, you can listen to the whole series at www.meassociation.org.uk/podcast or search The ME Show on iTunes, Spotify and most podcast platforms.

Best wishes, all.

 

https://www.youtube.com/watch?v=oShTJ90fC34

 

For non-UK members, the main speakers were

Carol Monaghan SNP (Scottish National Party, SNP) Glasgow North East. @CMonaghanSNP
Sir Edward Davey (Liberal Democrat, LD) Kingston & Surbiton. @EdwardJDavey
Michael Tomlinson (Conservative, Cons) Mid Dorset & North Poole. @Michael4MDNP
David Drew (Labour Co-operative, Lab/Co-op) Stroud (Gloucestershire). @DavidEDrew
Alex Chalk (Cons) Cheltenham (Gloucestershire). @AlexChalkChelt
Jim Shannon (Democratic Unionist Party, DUP) Strangford (N Ireland). @JimShannonMP
Kerry McCarthy (Labour, Lab) Bristol, East. @KerryMP
Stephen Kerr (Cons) Stirling (Scotland). @stephenkerrMP
Kelvin Hopkins (Independent, Ind) Luton North. (no twitter)
Liz McInnes (Lab) Heywood & Middleton (Greater Manchester) @LizMcInnes_MP
Luke Pollard (Lab/Co-op) Plymouth, Sutton & Devonport. @LukePollard
Stephen Pound (Lab) Ealing North (no twitter)
Gavin Newlands (SNP) Paisley & Renfrewshire North (Scotland) @GavNewlandsSNP
Sharon Hodgson (Opposition spokesperson) (Lab) Washington & Sunderland West @SharonHodgsonMP
Steve Brine (Minister = Parliamentary Under-Secretary of State for Health & Social Care)
also (Cons) Winchester and Chandlers Ford @BrineMinister

North, south, east and west.
Scottish, Northern Ireland, English main speakers and a Welsh MP Ben Lake (Plaid Cymru) Ceredigion (previously Cardiganshire) helped apply for the debate, made an intervention but did not make a speech.

Hope this is helpful

 

https://twitter.com/user/status/1011371334113382401

 

Hmmm... money for Crawley is no good thing.

Anyone checked the content of this? Site is currently down for me: http://elearning.rcgp.org.uk/course/info.php?id=93

Hmmm... wonder how 'evidence-based' this is?

Is that a bit too strong on the DWP? I've heard of insurance companies telling people that they must have GET, but with the DWP it seems to be more subtle, eg people appealing decisions to the tribunal get the impression that they are being judged unfavourably because they have stopped/do not want to do GET. It seems a bit more underhand than being sent a letter saying 'you must do GET'.

 

WTF... METRIC is that thing from Wearden and Chew-Graham. The masterminds behind the FINE trial. That's been promoted as a good thing?!

https://www.bmh.manchester.ac.uk/research/projectdetails/?ID=3117

To me it looks like they've taken the stuff related to this BS project off-line, which must be a good thing. [edit: Actually it looks like some stuff was just off-line last night] Odd Brine would mention it in his talk.

edit 2: The page says:
"Reviewed: April 2018" - so it could have all changed recently: http://elearning.rcgp.org.uk/course/info.php?id=93

edit 3: Apparently it hasn't really changed. I've been told anyone can get a free account to log in and have a look, and it relies heavily on PACE/FINE.



I thought I'd post my notes on this 2016 paper, in case it's of interest.

"Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study"

https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8

Reading that made me think 'bet their outcomes were poor'. I've not been able to see anything about whether they released any data on what impact METRIC had on patient's health (which one would think is important).

I think that the transcripts of comments from GPs would have been more interesting than the paper, just because its always interesting to get a look at what GPs say about ME/CFS in private. Some quotes:

Bit of a relief to have GPs not take the information packs seriously tbh. Some of this stuff is pretty funny:

GPs who completed the training said that their knowledge of CFS/ME had improved and they had established a positive relationship with their patients as they felt they now had something to offer:

Where's the evidence that they actually were offering something of value to patients though?!

Thought this was a bit interesting:

What evidence is there that there the implementation of these CFS/ME resources in primary care would have helped patients recover?

That rules out Wearden.

How did it do that?

 

Here's a METRIC conference poster: https://www.birmingham.ac.uk/Docume...ojects/nspcr/TraineesPosters/LouiseFisher.pdf

 

Medical information from Dr Robin Brown........

Some thoughts from Dr Robin Brown on Dr Hng's ME/CFS Friends FB group regarding moving on from (the) debate in Westminster.

“.......
3. Inform our MPs that while the Royal College of GPs do have an online training course for GPs on ME, I have personally checked it out and I can confirm that it is wholly inadequate and provides little real information. It takes no more than 1 hour to do, and GPs will still have little idea what ME really is, and the only treatment they are taught to offer is talking therapy. The course is useless. GPs would do better just listening to their patients.

4. Ask MPs to urge the Royal College of GPs, the Royal College of Physicians, the Royal College of Paediatrics and Child Health and Medical Schools to give ME an appropriate place in their curriculum. ME is not in the curriculum of any of these Royal Colleges right now, and not in the curriculum at many medical schools including the largest one in the country.

5. The content of Medical Education on ME should be developed by collaboration with practicing ME physicians who take a biomedical approach to ME (not Psychiatrists who call themselves CFS specialists) and doctors who have ME......”

 

Both CAB & Benefits & Work say roughly the same thing in relation to condition management for the ESA work-related activity group.

Benefits and Work:

"ESA work-related activity group members have to attend work-focused interviews and may have to undertake work-related activities, such as training or condition management programmes, but support group members do not."

https://www.benefitsandwork.co.uk/e...esa-glossary/1345-work-related-activity-group

CAB:

"The work-related activity you’ll be asked to do depends on what’s available in your area. It could be something like:
[...]

• new ways to manage your condition or disability

"The activities are all things that the DWP thinks will help you to eventually get into work."

https://www.citizensadvice.org.uk/b...while-youre-getting-esa/about-the-esa-groups/

WRAG claimants can be sanctioned for not participating in compulsory work-related activities they've been asked to partake in. Successfully challenging a sanction on the strict basis that a person shouldn't have to participate in condition management activity that involves NICE-sanctioned interventions because they believe those interventions to be counterproductive or even harmful would probably be difficult as things stand in relation to the Guideline currently.

https://www.citizensadvice.org.uk/b...owance/while-youre-getting-esa/esa-sanctions/

 

I'm clearly a bit slow on the uptake but am guessing this is the Robin Brown who started the petition to remove GET and CBT from the NICE guidelines

Robin Brown started this petition to Director, Centre for Guidelines, NICE. Prof. Mark Baker and 2 others

 

This quote from Dr Brown is good and it would great if there was input from GPs with ME in the training material for GPs.