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

Indigophoton said:
Ricky Gervais retweeted this post by @Robert 1973,
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Thanks. I hadn’t actually noticed that, but I was wondering why it was suddenly getting so much attention.

Sean said:
Brine is just deflecting outrage onto Gervais and away from him and his government. Don't fall for it.
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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.
 
Wonko said:
Personally, and this is just me musing, rather than an apology from a rather bland and unfunny "comedian" I'd rather have at least some of the following;

PIP - which I was robbed of by an assessor who was both woefully untrained and dishonest;
SDP which I was robbed of as a consequence of being robbed of PIP
My local council to have the money to be able to offer me care, and the trained people who know enough about my conditions to deliver it.
My local council or housing associations to have enough money to have the property stocks so that I can have a ground floor property, a 3rd floor flat with no lift isn't exactly ideal.
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Just to say sorry to hear about all of that.
 
Robert 1973 said:
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.]
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yes good job on helping with getting it pointing back in the right direction @Robert 1973
 
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.
 
Gary Burgess said:
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.
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look forward to it @Gary Burgess
 
Jonathan Edwards said:
Yes, although no party names were mentioned, and that was in itself important, I got an impression from the accents (which are fairly party specific regardless of region) that we had Labour and Tory contributions. Monaghan is SNP and we know that Liberal Democrat would have been in there in the guise of Vince Cable if there were none there today. Monaghan was clearly very pleased when we spoke afterwards that the full range was covered.
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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
 
Brine: "The NIHR has, since 2011, provided £3.37 million of funding for projects and training on ME. That might not be termed biomedical research, but as with other disorders, given that the cause and mechanisms of the condition are still poorly understood, it is important that we carry out both biomedical research, to further our understanding, and applied health research, to improve the treatment offered to people with ME now and to help to improve their symptoms and quality of life."
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Hmmm... money for Crawley is no good thing.

Brine: "The Royal College of General Practitioners oversees GP training in England. It provides an online course for GPs and other primary care practitioners that includes an overview of the presentation, diagnosis, assessment and ongoing management of ME. The course highlights common misconceptions about ME and considers the challenges that surround that complex condition for patients, carers and primary care professionals. It is produced as part of the METRIC study, which is funded by the NIHR."
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Anyone checked the content of this? Site is currently down for me: http://elearning.rcgp.org.uk/course/info.php?id=93

Brine: "The DWP assures me that all healthcare professionals are required to read an evidence-based protocol on ME as part of their training, as well as engaging in a programme of continuing medical education that includes modules on the condition."
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Hmmm... wonder how 'evidence-based' this is?

Monaghan: "The Minister has rightly said that any patient has the right to withdraw from medical treatment. However, when the DWP is saying that patients must undertake graded exercise therapy, and when health insurance companies are saying that they must undertake graded exercise therapy, it puts the patient in a very difficult position."
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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


The study presented a unique opportunity to explore the extent to which CFS/ME training and resources can be implemented in routine primary care, leading to a better understanding of the barriers and facilitators to the adoption and integration of new practices associated with medically unexplained conditions. The use of theoretical models of implementation is recommended to enable researchers to identify the conditions necessary for interventions to be successfully adopted in routine primary care [10].
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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:
“not all doctors believe that there is Chronic Fatigue Syndrome and they just think it’s in the patient’s head.” (GPB01)

“[CFS/ME] is difficult, there are no easy answers. You know, why would you be interested in that? It doesn’t feel like there’s a big win for the doctor, I think.” (GPA05)

“It’s not attractive, I got forced in a way, going back right to the very beginning, by a belligerent husband, I had to do something, it didn’t matter what, do something… But, I do think the topic is off putting… it’s not easy going.” (GPA03)
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“I think early on, doctors divide into those who feel that they can manage difficult things and those who feel that actually they are primary care physicians, so they should be doing primary work, and that things that are more difficult need somebody else to do it. And I remember a GP saying to me once, what’s the point of learning all these skills for picking up cues and eliciting people’s psychological problems, if you haven’t got a counsellor to refer them to? In other words, they didn’t see its management as their job… it is the test of stamina for the doctor, undoubtedly” (GPA05)
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“I used to be very reluctant to make the diagnosis, because I thought it was quite stigmatising, and because I thought people did, kind of, act to the label; and I still think that does go on, actually (GPA05)
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“it’s the confidence in being able to make a diagnosis and actually the ability to get the patient’s story accurately and, you know… So, I probably under diagnosed.” (GPC01)
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“It’s constantly very busy… there are new QOF things to do, and then also there’s all the changes with commissioning et cetera, we’re to be more involved in that. I think it’s just a workload issue, and unfortunately, there are a lot of clinical areas where many of us are interested, but we just can’t get round to do.” (GPA01)
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“It’s not top of anyone’s agenda and it’s not realistic to expect it to be… I know my colleagues were disinterested in it because it was not seen… it’s one that you’ll see rarely, therefore, the amount of importance you can give it isn’t that much. It’s not interesting to [GPs] it’s not as important as somebody who’s having a heart attack or trauma or a schizophrenic breakdown or bipolar. So even in the mental health, physical crossover it’s not top of anybody’s agenda” (GPA04)
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The packs provided were often incomplete and did not include the information leaflets. GPs stated that this was due to a number of reasons which included misplacing the resource pack, or forgetting what should be provided. This meant that the objective of using the resource pack as a tool to build a positive relationship with the patient within the consultation was not achieved:

“I wonder did I mail them? I might have done one or two, but I was probably too mean to spend the postage. I might have mailed one or two.” (GPA03)

“Initially I thought it was very good but, again, because it’s paperwork and, having to be honest, I’ve no idea where it is and if somebody came in now and asked for it I wouldn’t have it because it’s paperwork. (GPA04)

‘I actually forgot there was a DVD… so I didn’t give her the DVD.” (GPA02)
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Bit of a relief to have GPs not take the information packs seriously tbh. Some of this stuff is pretty funny:

my pack has nothing in it.... When I went for it… I said I understand you’ve got a pack for me. Couldn’t find them… I had to go back for it. The receptionist went on the hunt for it and found it in one of the offices somewhere and gave me it, but it didn’t have any of this information. (patient 39)
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As a result of not receiving this information, many patients reported disengaging from primary care as this reinforced belief that GPs do not prioritise CFS/ME:

it was very frustrating to be honest, so I gave up in the end. I was just frustrated really. (patient 11)
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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:

“It made me much more confident that there was an appropriate approach… [I have] a more clear idea in my own mind of how to manage it, as opposed to how to treat it, and to be confident that those are sensible things to do, and that they are endorsed. It has made me more willing to use the label, because then I can follow up with saying; and this is what it means, and this is what we’re going to do, and this what’s likely to happen… You have to say, right, I’ll see you again in two weeks’ time… like a lot of things, you spend time to make time; if you invest that time and people get better, then it saves time” (GPA05)
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Where's the evidence that they actually were offering something of value to patients though?!

Thought this was a bit interesting:

Furthermore, some GPs said they did not want to discuss CFS/ME with patients who had not mentioned it to them for a number of years as this had the potential to increase their, already stretched workload. This issue was highlighted by the note screening process in one practice, where they excluded patients from the study who had been diagnosed with CFS/ME by another practice as they were not sure if it was an accurate diagnosis. Respondents said that CFS/ME had never been discussed with these patients:

What I don’t always endorse is people who arrive with a diagnosis that I haven’t made, because I think, I don’t know the basis on which that diagnosis was made… I wouldn’t bring it up” (GPA05)
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“I think you need more backup… you say; oh, you need graded exercise, you need a bit of physio, and you think; well, where the bloody hell are you going to get it? Sort of an ME specialist nurse or an ME specialist…even one for the whole of Manchester or the North West wouldn’t be a big deal because they could be accessed by phone. So, yes… if I had a specialist nurse, like I’ve got an MS specialist nurse, if I had an ME specialist nurse and they could cover hundreds of practices because there’s not a big uptake, that you could tap into their expertise and say; look, is there a day centre where they tend to get together or could they go to the…what’s that course? Could they go to a back to work course, at the moment they’re just feeling much better and when is an appropriate point for them to go to the low activity back to work?” (GPA04)
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Recommendations for practice
Barriers to the implementation of CFS/ME resources in primary care means that many patients will be left without the support they need to manage their symptoms and work towards recovery.
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What evidence is there that there the implementation of these CFS/ME resources in primary care would have helped patients recover?

The GPs in this study supported the idea that patients could bring information to the consultation, as long as it was from a reliable source.
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That rules out Wearden.

Our analysis demonstrated that when used correctly the information included in the resource for the diagnosis and management of CFS/ME was beneficial to both patients and GPs in the diagnosis and management of CFS/ME.
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How did it do that?
 
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Esther12 said:
Anyone checked the content of this? Site is currently down for me: http://elearning.rcgp.org.uk/course/info.php?id=93
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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......”
 
Esther12 said:
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'.
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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/
 
It's M.E. Linda said:
Medical information from Dr Robin Brown........
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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
HjykBuFcTyPknFM-48x48-noPad.jpg

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.
It's M.E. Linda said:
"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......”
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