United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

Yep, that could work. The issue with FME is that they don't have a social media presence and their website is not well known or well visited.

 

Thank you to those who have posted on this recently. I had been feeling very unclear about what is happening but another reading of the recent posts should bring me up to speed. There is a lot to take in.

After all the work of the last several years and the intense work on the NICE guidelines ( thanks to Committee members) and the speed with which the Rt Hon Sajid Javid got underway, there seemed a bit of a lull in information which is now being progressed. Looking forward to hearing reports on how each of the 3 working groups move forward.

Thank you again to those contributing and sharing.

 

This is the latest information on the Delivery Plan

 

I think that anyone who has spent any time in Whitehall would recognise that flimsy paper as most likely to be the last gasp of an initiative which no longer has any senior supporters or champions. What an enormous shame.

 

Posting full text of the attached file for ease of reading.


INFORMATION FOR STAKEHOLDERS

Work underway to support the development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

20th September 2022

Introduction

The purpose of this publication is to provide a summary of the meetings held to date to develop proposed content for a draft cross-government Delivery Plan on ME/CFS.

Working groups have been established to do this work. An explanation of these groups was published by the Department of Health and Social Care (DHSC) on 17 August 2022 and shared with all working group members for wider distribution. Many organisations have published this information on their websites – for example :

DHSC proposal on the Delivery Plan on M.E./CFS | Action for ME

The DHSC have released details of their process in the Development of a Delivery Plan on ME - #MEAction Network

Development of a Delivery Plan on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | The ME Association

DHSC TASK GROUP UPDATES | Forward ME (forward-me.co.uk)


Delivery Plan Task and Finish Group

This oversight group has met three times since June 22. Terms of Reference have been approved for this group and the other working groups, to ensure that all members are clear about the purpose of meeting and the scope of their responsibilities. Members have heard about progress being made by each of the three working groups since June. Risks and issues for the Delivery Plan have been discussed with mitigating actions agreed in response. Members have had the chance to ask questions to ensure understanding, as well as challenge and offer suggestions.

Research Working Group

This group met first to discuss ways of working and the Terms of Reference which sets out the aims of the group, and how to deliver on these aims. Their work will build on the discussions that took place at the Research Roundtable held 8 June 2022, chaired by the former Secretary of State for Health and Social Care, and the top ten plus research priorities from the James Lind Alliance Priority Setting Partnership on ME/CFS. At the second meeting on 1 September, it was agreed that the work would be taken forward in 3 separate sub-groups, focusing on :

1. Research Strategy

2. Building capacity and capability

3. Raising awareness and building trust


Attitudes and Education Working Group

This group met first to discuss Terms of Reference and an initial set of the problems to be addressed, in relation to professional attitudes towards ME/CFS and professional education about ME/CFS.

Feedback from group members has been submitted to DHSC about these problems, their causes and effects on children and adults with ME/CFS (including people with severe and very severe symptoms), their carers and professionals. As a result, the set of problems were refined.

Further feedback has recently been submitted on the desired impacts to be achieved by this work and possible actions that will help achieve this impact. These impact statements and suggested actions were discussed at the meeting held 8 September 2022. A draft list of actions has been developed which need further exploration.


Living with ME/CFS Working Group

This group has met twice. At the first meeting, we discussed Terms of Reference and the set of problems to be addressed with regard to the provision of services to support children and adults with ME/CFS (including people with severe and very severe symptoms) and quality of life.

Following feedback from group members, causes of the problems and their effects were discussed at the second meeting.

Topic-based workshops are taking place in September and October to gather views on the desired impact to be achieved and possible actions to address the agreed set of problems and deliver this impact. The topics for the workshops are – 1) Adult Social Care, 2) Quality of Life, 3) Welfare, Employment, Adult Training and Education, 4) Health Services and 5) Children and Young People. Relevant experts, including additional people with lived experience, are being invited to attend these workshops.

Engagement Advisory Group

This Group will first meet in September.

[end]

 

I managed to download this document having no idea what to expect. The detail was thin.
I have felt detached from what has been going on ( if anything) for the last several months and I simply don't have enough energy to tackle making sense of it currently. I hope it isn't " the last gasp of an initiative which no longer has any senior supporters or champions."@Shadrach Loom.
Is there a way of getting it going again? I don't think I'll be writing to Therese Coffey.

edit: thanks for posting the full text of the file @Andy. It makes it much easier to assess what is/isn't going on. And thanks @MEMarge for your efforts.

 

The killer is “possible actions”. Not planned, not preferred, not prioritised, not phased, not procurable. Just . . . possible. You might as well go full Liam Byrne and simply write a note saying “there is no money”.

 

It’s not weird at all for there to be no visible signs of change a year after the guideline. But what there should be at this stage is signals that the territory and budgets are being fought over. What you want to see in this sort of document is new team structures with FT roles for various engagement leads, and someone at deputy director level or above who is charged with deconfliction and coherence across pathfinder initiatives. That’s what happens when everyone with turf and headcount to defend knows that the minister’s team has latched onto an agenda, and its absence is pretty telling.

 

I am more sanguine - as a member of the working group. Things are just getting up and running and the inevitable initial noises off are being got through. I don't think this was ever going to be a specific programme driven by a government department. It is a way of allowing constructive voices to interact. That has already happened.

What matters is that useful ideas are allowed to generate real research. We have DecodeME up and running now. I am pleased to see the new Haukeland actometer study - a small start but a positive one showing that more can be achieved. We can have a useful debate about repurposing drugs for ME. We could get a working group set up on outcome measures for trials.

Things have to be driven forward by people with the relevant expertise. The government initiative was always to a degree going to be window dressing, but sometimes that matters. The bringing together of patients, carers and professionals is particularly important.

 

Fair enough - if convening is going to build its own momentum and that will change behaviours in primary and secondary care without any need for change programmes in DHSC, or without clear central directions on where trusts should and shouldn’t be spending money, all good. I don’t know enough about it and am generalising from unrelated HMG programmes.

A priori, though, allowing constructive voices to interact, outside of funding structures, is going to be better at getting bad stuff stopped than good stuff started, unless there is industry or special interest cash involved - which comes with its own baggage and governance challenges.

 

This is more of a status update that work is happening. No actual details.

 

I see that as more important than government programmes anyway. Top-down initiatives are often poorly designed and targeted, and are vulnerable to being dropped as soon as the political wind changes.

Real progress is possible when professionals with expertise and/or influence become interested, engaged, committed. They can spot opportunities, make the most of their networks, and get messages out; they know which approaches are likely to work and which aren't. If they also involve patients and carers in a genuine partnership, it's a much better way forward than some Whitehall initiative.

 

Don't know much but yes there's a danger that the last Minister's agenda/interests aren't supported by the next incumbent/Minister. The APPG is the obvious route to challenge lack of progress/implementation. E.g. if there's evidence that health trusts are not following the NICE guideline then the APPG should be able to highlight that and potentially get action taken to address it. I think one of the challenges is the competing interests: cost of living crisis (cost of home heating, food ---), war in Ukraine, UK (Westminster) election 2 years out (focus on what can be delivered to boost chances of re-election)---.

 

Obviously checkout Jonathan's comments above. My impression is that this looks OK -
1. Research Strategy
MRC expert group led to GWAS +ve ---- funding research which cannot possibly tell us anything [unblinded & subjective outcome indicators AKA questionnaires]* -ve.
2. Building capacity and capability
Presumably would require commitment to funding(?). With an interested Minister that's much easier to achieve, but let's see. Regularly re-running the MRC review group, which led to GWAS, might be a useful way to build capacity and capability.
3. Raising awareness and building trust
Given the PACE scandal/scam, undermining trust, this is necessary; the NICE Guideline has helped to build trust. A move to address the entirely reasonable objection to the (Government) funding of research which cannot possibly tell us anything* would also help to build trust + it's free (Government's always like that - no budget to find!).

 

The topic list does not include what is potentially the single largest definable sub group of PwME in the UK - that is those over the age of 50.

Although we don't have sound demographic data on the UK ME/CFS patient population, unless there are very high rates of recovery (i.e ME/CFS is not predominantly lifelong) and/or there are exceptional rates of early mortality in PwME, then it is a statistical probability that around half the PwME population is aged 45+. Older age is strongly related to acquisition of multiple health problems even in previously health people, thus older PwME have a high probability of experiencing exceptional health challenges.

There is very little literature on ME/CFS in older age and almost no research includes cohorts of 60+ - probably because it's difficult to exclude age related confounders - but the overall research picture is of ME/CFS not being a disease of older people despite this being counter to what seems demographically logical. If the NHS is to effectively support "Living with ME" then it needs to have clarity over what ME/CFS means for older people, and include that in its 'elder care' programmes https://www.england.nhs.uk/ourwork/clinical-policy/older-people/improving-care-for-older-people/