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

strategist said:
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Sajid Javid rethinking ME after young relative’s battles

"The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness.

Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.

Speaking at the launch of Rethinking ME, an all-party parliamentary group report, the health secretary disclosed that a close family member had been..."

Paywall, https://www.thetimes.co.uk/article/sajid-javid-rethinking-me-after-young-relatives-battles-kfbrwgf72

Edit to add:

Source for above,

"Looking forward to #r4Today doing a segment on the new approach to ME. Having covered the ground previously, do expect this major change to feature - Sajid Javid as guest! Sajid Javid rethinking ME after young relative’s battles | News | The Times thetimes.co.uk/article/sajid-…"

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Andy said:
Sajid Javid rethinking ME after young relative’s battles

"The health secretary has spoken of a young relative’s battle with myalgic encephalomyelitis (ME) as he promised a new approach to the debilitating illness.

Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.

Speaking at the launch of Rethinking ME, an all-party parliamentary group report, the health secretary disclosed that a close family member had been..."

Paywall, https://www.thetimes.co.uk/article/sajid-javid-rethinking-me-after-young-relatives-battles-kfbrwgf72
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I think the text in the images in this tweet is the text from article in The Times.
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Andy said:
He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.
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This is encouraging. Thank you, Mr Javid.

Will depend heavily on who is on the panel. Pick wisely, Mr J.

Thanks also to everybody who worked hard for a long time to get it taken seriously by the political mainstream in the UK. That is every bit as important for us as getting the science right. :hug:
 
I have read the report and am very pleased with it. For those with limited reading ability, the Executive Summary Andy posted here covers the main points.

One thing people getting excited about this report need to be aware of is this in small print at the bottom of page 1 referring to on the APPG website and presumably to the report itself:
This is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these webpages are those of the group.
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Edit to add:
And this on the report itself:
The printing of this report was funded by the ME Association and Action for M.E. This is not an official publication of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in this report are those of the group.
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There are hundreds of APPG's run by MP's with interests in anything from beer, jazz, yoga and cricket, to dozens of diseases, to broad topics like science and race relations. Most are probably just an opportunity to show the MP's constituents that they are taking their particular issue seriously, a chance for trips abroad for the groups on individual countries, and have no impact at all on government policy. They have no official standing with government in the way that Select Committees do.

The ME APPG is clearly doing fantastic work under Carol Monaghan's leadership, but, as we've seen with the Parliamentary debates she has managed to secure in recent years, had no effect on policy at the time.

I think what should make a difference this time is the coming together of the NICE guideline, this report and Sajid Javid's interest and promised actions, and the charities working together more effectively than they have in the past through Foward ME.

I really hope this makes a genuine difference, but there is a long way to go.
 
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strategist said:
After the report criticized the BPS approach harshly, it seems unlikely that the panel will contain any BPS oriented people.
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Though there is no guarantee that the BPS oriented will recognise themselves in the criticism. For example such as Prof Crawley say they understand ME is a biomedical condition while still believing it can be cured by talking, exercise and lifestyle changes. We should not underestimate the capacity for double think, and those that are successful in political and grant awarding circles may be very able to shift their wording to fit the current political climate without recognising the previous error of their ways.

Certainly when I worked in health in order to get the money your service needed you very quickly learned to regularly relabel the same thing in response to the shifts in political climate, whilst not actually shifting your underlying objectives. For example when there was central government funding for clearing waiting lists, everything was described as a waiting list, but then when you were penalised for having waiting lists, suddenly the identical situations became successful completed assessments resulting in identified unmet need.

However it is fantastic that Savid Javid genuinely seems to understand the issues and is being widely reported. If this is translated into action we will definitely see an onward trajectory building on the work of all those that helped get the seismic shift in the new NICE guidelines.
 
Andy said:
And the Summary of Recommendations (click on each image to expand it).

View attachment 17241

View attachment 17242
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In the summary of recommendations images posted by Andy (Post #99), the steps given in chapter 2 are directly at odds with what the Royal Colleges were saying they were gong to do just a few months ago (which was ignore the new NICE Guidelines, mainly), so it will be interesting to see if they can wriggle out of these new recommendation now that a senior politician has got involved.
 
The Rethinking ME report is an excellent piece of work, which together with all the background effort to tie in the Health Secretary, NICE and media exposure to a united front with all the main patient organisations is close to being a peerless bit of advocacy. In a different climate, so not a wholly fair comparison, but this looks to have far more punch than the 2006 Gibson report .

The main strengths of Rethinking ME are probably those aspects which demand cultural change, notably the Chapter 3: Children and Young People with ME recommendations

Health commissioners should ensure that all children and adolescents with ME have access to correctly trained hospital paediatricians and long-term community services.

"1. The RCPCH should ensure that all paediatricians receive specialised training on recognising, diagnosing and managing children and adolescents with ME to avoid misdiagnosing FII.

2. An independent second medical opinion obtained by a parent or guardian of a child with suspected or confirmed ME should be taken into account in any decisions regarding diagnosis, treatment or welfare.

3. The Chief Social Worker (or equivalent in the devolved nations) should ensure that the guide for social workers working with children and young people with ME or suspected ME (developed by social workers in partnership with Action for M.E.) is shared with all social care departments to ensure that children are not unnecessarily subjected to child protection procedures due to a lack of understanding of ME.

4. All children and young people with ME should have a care plan, in accordance with national guidelines and/or statutory requirements, that combines education and health. Schools, colleges, and universities should make learning and assessment modifications for students with ME. Home-based tuition and remote interactive lessons should be provided for those who are unable to attend classes."

and Chapter 4: Welfare and Health Insurance-based Benefits recommendations

"The Department for Work and Pensions (DWP) should ensure that people with ME have fair and equitable access to welfare benefits by taking steps to (1) account for the impact of ME on the ability to engage with the application process and (2) minimise potential negative health effects associated with medical assessments. These steps should involve:

- ensuring that claimants can carry out activities repeatedly and reliably without risking adverse health impacts and are scored fairly

- accepting supporting information from accredited medical professionals, other health and social care professionals and carers

-providing an extension for completion of ESA paperwork in line with those provided for PIP applications

- ensuring that medical assessors understand and work within the NICE guideline which explicitly states that GET should not be recommended or required."

Chapters 1 and 2 by contrast, while wholly valid are ultimately dependent upon overall UK research and NHS budgets being increased, the latter in the face of unprecedented demand. There may be some impact from Rethinking ME in terms of ME/CFS getting a larger slice of the existing cakes but it's not obvious that could or would happen to any substantial degree.
 
The UK really needs for people like Javid to be on side in getting rid of the nonsensical BPS beliefs. However, I fully expect that for their part the BPS will go crying into their single malt about how ME is being 'politicised' and look, see and then point to Javid.

So, it will be interesting to see if anyone is left to listen to the wallowing or if people now have the measure of the situation and have moved on.

The thing about the 'two sides of reality' with regards to ME is that we have had to work completely in the open and under scrutiny. Quite the opposite is true of the BPS position thus far where they have been able to 'have a quiet word' to the relevant person whenever they needed to ensure their own future as the 'experts'.

That resource is likely not gone but lets hope it has diminished.
 
This has gotten a bit of attention on twitter, through several tweets from several sources, and you can really see how right the BPS ideologues are about a small, vocal minority, which implies the existence of a large, silent majority. There are many comments, lots of discussion, that talk of the merits of a radical change away from a wildly successful business of rehabilitation currently experiencing an unprecedented boom time.

You can see that silent majority all over the places, in hundreds, nay possibly thousands, of comments that are just... not there. Not at all, not one. Not even from the usual sock puppet accounts, who somehow choose to stay silent at a moment where they should be emphasizing the strong, powerful majority of people who express gratitude and recognize the brilliance of the treatment model and the clinics.

At least as far as I have noticed, since I am blocked by most of those accounts who make up their own tiny vocal mutual admiration society. If they are there, they're within the margin of error, which is very fitting, as the entire body of evidence for psychosomatic medicine exists in the very wide margins of many errors.

It's a thing that happens a lot in politics, especially bad faith politics. Politicians who don't support a position will say something like "the public doesn't want X", when X has 80-90% support. To do this, as experts, as licensed medical professionals, on an issue where we are closer to 99%, to basically unanimous consent, really shows just how dishonest the whole enterprise has been, how psychosomatic medicine relies entirely on bullying and lying to get their way. Take the secrecy, the lying and the bullying away and they got nothing. It's the only way they exist: by coercive, manipulative statutory force.

Seriously though you could poll any random question that should never be anything but unanimously one-sided, basic questions such as "do hats exist?", and it would probably be less unanimous than the ME patient community is about the harmful malfeasance of the biopsychosocial ideology.
 
yes & im sure 'quiet words' will be had now, explaining to him that 'we know its real and serious and just because CBT & GET help doesn't mean its imaginary. And saying its physical not psychological - well mental health is just as serious and for a minister to suggest otherwise...... blah blah blah blah"
All sympathy & manipulation.

'Conduct unbecoming of a minister' no doubt, or perhaps not that exact slur, since he is a man.

FF may well use it as an example of how 'the harassment is working and must not be allowed to win', blah blah.

it's so predictable :emoji_rolling_eyes: It'd be boring if it weren't so harmful


just as a slight aside, because i recently read that spurious argument of 'mental health is very serious so i dont know why you are so irate about suggestions of psychological cause' (or words to that effect) again somewhere (i think in the SMC response to MEA @Lucibee posted in the SMC thread ?)...

I've often wondered whether people correcting others from another common ignorance (among the public) - that pernicious anaemia is about B12 not iron, whether they are accused of minimising iron deficient anaemia. "Iron deficient is just as bad, stop trying to minimise iron deficiency!"
I doubt it because it would be absurd.
 
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