UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

Thank you and apologies, I now think I've read that already and also agreed on another thread but couldn't remember when I saw the post I replied to here.

I also now skimmed again some of Javid's statements that sound even more encouraging.

Yet I still think it would good if S4ME could be added, if not as a regular member of the advisory panel, then perhaps to a list of organizations/ people that could be invited to specific events/ discussions?

Better discussed perhaps on another thread? Hope I will able to comment soon there: https://www.s4me.info/threads/exploration-of-the-idea-of-a-register-of-patient-advocates.27854/

So much happening at once and so many things to discuss and coordinate, in the UK and elsewhere.

Mainly a reason to be happy about, and grateful, just very challenging pacing-wise.

As I don't live in the UK I should refrain a bit from commenting on the APPG and Javid's plans anyway. Just think that this is such an exceptional opportunity that, if successful, could help so much, also help implement the new NICE guideline and thus preserve the important work of everyone involved. Could be a game-changer not only for the UK.

So it's hard to be confined to the role of a spectator and be patient....


(Edited to replace peoples with people )

 

Box ticking then. The thing is that 'any money' for 'no effectiveness' is just 'a waste'.

I know it is CCGs that they've been going through one-by-one to sell IAPT into different parts of the country and 'build it up'. I've heard people say that for GPs it at least gives them a short-term break whilst the patients are distracted by this - but the data/proper research seems to show it doesn't actually reduce GP appointments overall.

But by this point, and the huge amount of money spent, and number of pilots run then really it is a national issue of huge amounts being spent that could actually be going into real treatments for some of these things - which as you say might be better value if the accounting period is longer than say 6mnths.

But if these alterntives no longer exist/have closed lists because the only thing available is this it becomes circular as it is the de-facto treatment by being the only thing a GP can offer for most things, marks its own homework/doesn't have any of these things checked and because the people who bought it need to defend that choice they are less likely to want to do an audit showing they've wasted money on something that doesn't work/want to paint such decisions as a success story?

 

I'd say feel free to add - the best inspiration often comes from comparing how things work in different systems for different conditions, and someone asking the 'obvious questions' that when you get used to something operating a certain way you don't see anymore e.g. 'why do they do that' might be unsolvable a number of times but be just the breakthrough needed every so often.

Plus it is interesting and useful to see what everyone's thoughts are x

 

"Response to the report published by the UK House of Commons All-Party Parliamentary Group on Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME): implications for cardiometabolic risk" by Low, Brookes, and Heald

"Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) is associated with affected individuals being more sedentary and having a reduced breadth of activities with attendant significantly increased cardiovascular and metabolic risk [1].

The recent report by the all-party parliamentary group on ME presents an ambitious vision for ME/CFS which is to be welcomed [2]. It calls for the creation of centres for ME/CFS research excellence and updating medical training on ME/CFS, something which is to be applauded. However, we noted the critical tone in which the biopsychosocial model [3] was discussed."

...

"We do not believe that the answer to improving the lives of those living with ME/CFS is in discouraging the use of the biopsychosocial model. Surely, individuals living with ME/CFS are best served by a holistic biopsychosocial formulation considering all aspects of the reality of living with this very disabling condition. ME/CFS is a complex condition that requires a multi-track not uni-track treatment approach in all aspects of its management. Any intervention that can result in greater activity levels is likely to reduce cardiovascular risk."

https://journals.lww.com/cardiovasc...o_the_report_published_by_the_UK_House.3.aspx

 

The problem is not a biopsychosocial approach rather the problem is that the term is almost invariably used to covertly mean only psychosomatic. I would not object to a meaningful bio-psycho-social approach that would include the biological underpinnings and social factors such as doctors’ knowledge and benefits and support for activities of daily living. However I do object strongly to a term that invariably only includes the psychological and ignores factors that would have much larger impacts for more people.

Holistic is fine if genuinely holistic rather than an excuse to ignore the things that really could make a difference.

 

Given that Heald has published papers on the Perrin Technique with Raymond Perrin himself, as well as providing a foreword for Perrin's book, I'm struggling to believe

"Conflicts of interest

There are no conflicts of interest."

 

The Chu paper looked at anti-rejection medication compliance in the context of depression. From their abstract —

Concluding —

So the authors of the above response draw the inference that depression is causing worse post-transplant outcomes. Always mind -> body. Never considering mere association or <shudder> the reverse direction.

Lung transplants require actively manipulating and degrading the immune response. Any possibility those attempts may have reduced / undesirable effects? Could you just imagine for a moment the mechanisms of host-vs-graft and graft-vs-host at play? Could the blood-brain-barrier be affected or immune-mediated encephalopathy develop that causes symptoms that you diagnose as "depression"? It's not as if depression caused by autoimmune encephalitis is unheard[1] of[2].

 

https://www.politico.eu/article/uk-parliament-rishi-sunak-mp-westminster-warned-to-clean-up-its-act-on-parliamentary-groups-branded-total-jokes

it’s being floated that charities and other interested parties shouldn’t be allowed to provide secretariats for APPGs, as AfME and MEA do for the APPG on ME.

 

MEA
APPG Report: Inform your MP about the key issues relating to ME/CFS!

download report at link
https://meassociation.org.uk/2023/0...r-mp-about-the-key-issues-relating-to-me-cfs/

 

"The ME/CFS All Party Parliamentary Group will meet on 21 March 2023. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including a presentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules."

https://appgme.co.uk/meetings/annual-general-meeting-2023/

 

This meeting needs to be livestreamed. We had years of only seeing the Minutes of APPG meetings. From the years when the meetings were open to the public it was clear the Minutes did not cover much important content of the meetings.

Other health related APPGs livestream their meetings, why not the APPGME?

 

Cost ? There's no Parliamentary funding only what outside interests (in this case MEA, AfME) provide. Not all APPGs are equal - some have well healed backers: Westminster Accounts: 'The next big scandal' - Informal groups of MPs given £20m from external organisations since 2019

"All-party parliamentary groups (APPGs) have received over £20m worth of funding from external organisations since the 2019 general election, with registered lobbying agencies dominating the ranks of biggest benefactors.

Companies are required by law to sign the consultant lobbyist register if they engage in direct communications with ministers in relation to government policy or legislation on behalf of paying clients.

APPGs are informal interest groups of MPs and peers that facilitate cross-party work on an issue, a country or a sector, but the chair of one of Westminster's ethics watchdogs has told Sky News they could represent "the next big scandal".

 

Is livestreaming expensive? Assuming you have some control over participant seating and acoustics, you can run it off a single laptop and a Jabra microphone using commodity conferencing software. It only gets costly if the number of users goes beyond a certain point, and there are probably only about 50 people ME-geeky enough to tune in to an APPG meeting, a quarter of whom are on this thread.

 

In this case I think cost = general resource. I don't know who is attending from the MEA and AfME but I wouldn't assume they are comfortable with the tech or the process of introducing it in the context of Parliament (specific regs ?) . And the MEA and AfME are answerable to their members/supporters and therefore may not see that additional resources beyond the important function of facilitating the APPG are needed, given that both will a) represent their members/supporters views and b) report back via their respective organisations probably capturing half of those who might be geeky enough to tune in to an APPG meeting.

Actually keeping an APPG going is an achievement, MPs are often fickle about their attachment to a subject/cause - it may seem small but adding another admin burden might actually feel like a unwanted hassle for the secretariat on top of enthusing MPs to take part. But maybe they would be open to the suggestion, probably more acceptable from a member or supporter.

 

Has AfME' s constitution changed ?
Members previously couldn't vote on anything .

 

That's why I used 'supporters' - they have "Supporting Membership" which gets around the fact AfME is, unlike MEA, not a membership organisation. As of last year Supporting Members can vote for Trustees: https://www.actionforme.org.uk/get-...es/supporting-member-votes-for-trustees-2022/ see bottom of that page for explanation.

Any non profit organisation is at base answerable to its supporters because in the end supporters can remove their support, AfME is clearly responsive to its supporters at a level that supporters accept because there's enough supporters keep paying subscriptions and making donations for AfME to remain viable. At the very least it's a tacit acceptance that AfME is doing what its supporters want.

 

I have just written to my MP requesting he send a representative to next week's APPG. The content seems particularly important this time as @Andy earlier outlined. We shall see if anyone attends. If the meeting were live-streamed, I would personally want to watch.


"Invite Your MP To Join The Next Meeting Of The All-Party Parliamentary Group On M.E
March 8, 2023


The next meeting of the All-Party Parliamentary Group (APPG) on M.E. will be the Annual General Meeting on Tuesday 21 March 2023 from 3:30pm-4:30pm. In addition to reconstituting the APPG, the AGM will include:

• a one year-on review of the implementation of the new NICE guideline including apresentation from Action for M.E. on the results from a Freedom of Information request regarding the implementation of the revised NICE Guideline responded to by 106 ICB’s and NHS Trusts.
• a discussion of support for those with severe ME
• consideration of our workplan for the coming year.
• Minutes of the AGM will be shared in accordance with APPG rules.

Your MP can get further information by emailing Carol Monaghan, MP (Chair of the APPG on M.E.).

Action for M.E. and The ME Association jointly share the secretariat responsibility for the APPG."

There seems to be a lot of meat in this meeting. The results of the
FOI request responded to by 106 ICBs ( Integrated Care Boards) and NHS Trusts should be interesting. How far are the new guidelines being adhered to? At a guess......nil. The inadequacy of the treatment of severe ME has been to the forefront lately and desperately needs addressing.
Minutes- do we know what APPG rules are?

 

From https://www.parliament.uk/about/mps-and-lords/members/apg/rules-on-appgs/

21. Groups must be transparent about their nature, membership and funding. In particular, they must avoid presenting themselves in a way which could lead to confusion with Select Committees. They must make full disclosures of any support received for their publications. An APPG must:
...
c. publish on its website (or provide on request11) the following information:
...
iii. minutes of past formal13 meetings (which should record both attendance and decisions);

 

Thanks@Andy