UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

I personally think it more likely that the delay has arisen within the process itself largely because it is all hot air. People put in charge may have left because they had other things to do or others could not agree on anything or thought they needed to abide by some further politically correct rules.

These things are run by people who need to be "busy" but have no idea why.
 
Daisymay said:
Could the delay be due to more interference from the Royal Colleges again, on behalf of the BPS brigade?
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I'll be optimistic and hope it's that because of all the positive lobbying from charities like AfME, T4ME and FME they've finally realised they actually do have to add some real, substantive actions into the plan and then actually deliver them. The actions in the interim plan were feeble.
 
ME Research UK:
Apart from being published 'soon' what do we know about contents of the Delivery Plan? Further details of what the Delivery Plan may contain have been made public by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) in answer to queries by Sarah Gibson MP - https://tinyurl.com/4474hxzn

In summary - the Department has acknowledged

1. ME/CFS research is an under-funded area. However, they state that this situation is directly related to the number and quality of applications received by MRC and NIHR.

This is the same line taken by the government for decades and despite ME/CFS being a priority area for MRC.

2. No 'ring-fenced' funds for ME/CFS research as all applications will be in open competition with all other funding applications for all other diseases.

3. "... we are actively exploring next steps for research in ME/CFS, and we will outline in the delivery plan further research actions and the additional support we will offer to the research community to increase the volume and quality of applications."

4. "a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS"

NB - not just ME/CFS but for post-acute syndromes and associated conditions.

5. Planning "an NIHR and MRC hosted showcase event for post-acute infection conditions, including ME/CFS and long COVID"

NB - not just ME/CFS but for post-acute syndromes and associated conditions.
 
Cinders66 said:
Do they do that?
It does seem like it’s a dirty little secret they are keen to bury. If it was something good it would be something to promote as "we are finally the ones who're going to do right by this community & affecting 100s of 1000s and their families”
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well it isn’t legislative so no parliamentary involvement and it is a niche topic- unlike Sajid Javid who made clear his personal commitment none of the current ministerial team at Health is treating it with anything approaching that.

I think it is likely to be either a low key announcement or probably being kept on hold to provide material to use when DecodeME is published so that the Health department can be perceived as taking action.
 
NelliePledge said:
well it isn’t legislative so no parliamentary involvement and it is a niche topic- unlike Sajid Javid who made clear his personal commitment none of the current ministerial team at Health is treating it with anything approaching that.

I think it is likely to be either a low key announcement or probably being kept on hold to provide material to use when DecodeME is published so that the Health department can be perceived as taking action.
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Yes I think it is being tied to DecodeME and was used as a time filler until DecodeME publication, probably not expecting the year delay in that. Even with Sajid Javid, both meruk and Invest in ME were saying his wording at the start about funds for research being available from existing budgets meant intent to not designate more, + the latching onto lighter topics such as "language" etc that cost little to change. Speding decisions on research when there is just cause, as i believe we have, are usually influenced by public and media pressure, we have exerted little.
 
hotblack said:
Yes, I think it’s worth remembering that many of the lines and challenges are seen with other conditions too. I’ve been watching similar messages about funding and other areas in response to the Parky Charter, which has people with media experience and profiles behind it and a sizeable petition.
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What do you mean similar messages? I too have been watching that campaign, the government response is that Parkinson’s has already had £70+ million tax payer funding over a period of 5 years from 2019 (giving it a £100/patient / year government investment vs ME about £4). Those efforts of both clear & well organised campaigns & the state funding for Parkinson’s put those for m.e to shame..
 
Cinders66 said:
What do you mean similar messages? I too have been watching that campaign, the government response is that Parkinson’s has already had £70+ million tax payer funding over a period of 5 years from 2019 (giving it a £100/patient / year government investment vs ME about £4). Those efforts of both clear & well organised campaigns & the state funding for Parkinson’s put those for m.e to shame..
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I mean similar messages from the government. Saying they will not increase specific funding for Parkinson’s, referring back to the NICE guidelines, saying it is up to ICBs, talking about how research is funded through the NIHR and funding applications are welcome.
 
Google is sayimg Summer recess 24th July. Dr Charles Shepherd is Intimating the publishing date is imminent and I guess it’s likely the top level collaborator orgs know. I just want it to be over so that this pause that has been on us since 2018? When MEA started working with NICE where everything has been behind the scenes and Hush hush and elites only and excusing the absence of any activism, as well as preventing Any, is over.

2018-21 the NICE guidelines
2020-2022 the James Lind Priority setting partnership
2022- 2025 DHSC delivery plan
The APPG comms closed, the forward m.e minutes closed down. The CMRC suspended. #Millionsmissing acrivism Fizzling out.

The great pause, is over. 7 years of behind the scenes committees & minimal patient engagement - other action. A dream for some . Following dangled carrots. Not a lot of tangible change/ progress unless the DHSC delivery plan pulls something from its sleeve or DecodeME provides the ground breaking. For ME patients like me, It’s felt like the 7 years of famine in the Old Testament. Let’s see what is done now.
 
"Boost in support for patients with chronic fatigue syndrome or ME" (Gov.uk):

Link

"Doctors to be trained on ME in NHS plan to transform care" (The Times)

Link | Archive.ph | Txtify | PrintFriendly

"My daughter died from ME. This new plan fails her and others like her" (Sean O'Neill, The Times)

Link | Archive.ph | Txtify | PrintFriendly

"Government pledges to 'transform care' for people with ME" (Yahoo News) - Link
"ME care reforms promised after woman's tragic death" (The Independent) - Link
 
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Action for ME​

53m ·

❗️
DHSC publishes the Final Delivery Plan on ME/CFS
The Department of Health & Social Care has published the Final Delivery Plan on ME/CFS.
We have issued a detailed statement on our website
1f447.png

https://www.actionforme.org.uk/dhsc-publishes-the-final.../
The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.
We would like to thank everyone who has worked hard to produce the Plan and recognise the commitment that many have shown to its publication, including members of the ME community who used their time and energy to input into the wider consultation.
Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.

Statement by Sonia Chowdhury
"We appreciate the time DHSC has put into the Delivery Plan and their engagement with us and the ME community, many of whom have given up their limited energy to contribute to its
development. We welcome actions included in the plan to redress stigma and improving training of professionals. It's imperative to improve access to health and social care services for people with ME, and this is a good start. We particularly welcome a commitment to explore a specialised
service for people with very severe ME.
However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is
proposed in the plan will not offer this. Once again, it feels like people with ME have been
ignored.
Sonya Chowdhury
Chief Executive, Action for ME
 
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❗️ DHSC publishes the Final Delivery Plan on ME/CFS

The Department of Health & Social Care has published the Final Delivery Plan on ME/CFS.

We have issued a detailed statement on our website

www.actionforme.org.uk

DHSC publishes the Final Delivery Plan on ME/CFS - Action for ME

The DHSC has released the Final Delivery Plan on ME/CFS. Read our detailed response to the actions laid out in the Plan.
www.actionforme.org.uk www.actionforme.org.uk

The Plan’s release is an important step towards recognising the scale and seriousness of the condition and we welcome the Plan and the intent behind it.

We would like to thank everyone who has worked hard to produce the Plan and recognise the commitment that many have shown to its publication, including members of the ME community who used their time and energy to input into the wider consultation.

Whilst there are elements of the Plan that will have a positive impact, it simply does not go far enough to ensure that its desired outcomes will be achieved. In particular, the Plan lacks a strategic approach to research investment, ambition, and accountability structures.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #FundThePlan
 
Local neighbourhood centres the NHS will set up, to provide care closer to home.
That’s lovely, how many years until that will be set up? I’ll probably still be housebound though.
 
Very disappointing but not at all surprising. This pathetic delivery plan makes the DecodeME results all the more important. If they are as positive as I’m hoping the delivery plan may become largely irrelevant.

Nightsong said:
"Doctors to be trained on ME in NHS plan to transform care" (The Times)

Link | Archive.ph | Txtify | PrintFriendly

"My daughter died from ME. This new plan fails her and others like her" (Sean O'Neill, The Times)

Link | Archive.ph | Txtify | PrintFriendly
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Thanks for sharing the links. Good report in The Times, apart from the reference to “chronic fatigue” in the sub-heading (which would have been written by the sub-editor not the authors of the report).

Excellent commentary by Sean O’Neill.
 
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