Input to DHSC/UKCRC Research Working Group Meeting
24 November 2023
ME/CFS Research Working Group Meeting - November 2023
This document carries comment from UK charity Invest in ME Research (IiMER) with the recent meeting of the ME/CFS Research Working Group held on 24 November 2023
This article is also available here -
Recap
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Invest in ME Research only received an invitation to participate in the
UK Clinical Research Collaboration (UKCRC) initiative after
the objectives, terms of reference, and working group structures had already been determined in
previously held meetings.
- We requested public release of the research working group meeting minutes in our first meeting in September 2022 submission [2], but the request was denied. Consequently, we opted to document our involvement to provide some transparency [4].
- In our September 2022 submission to the research working group [2], we emphasised the quickest and most effective pathway for change in the ME research environment that would expedite research and discovery for ME. We advocated leveraging existing resources, especially the centre of excellence being founded in Norwich Research Park, and adopting a well-established Dutch research plan that involved patient consultation, potentially merging it with a UK research agenda.
- We emphasised the need for the group to push back promptly to the government, asserting that any progress hinged on securing funding for the proposed developments.
- Our document was not distributed or discussed, despite our request to the secretariat. The issue was raised again in early 2023 by another member, but uncertainty remains about its full distribution and discussion. Nonetheless, we promptly made it available on our website and social media [3].
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We summarised with this paragraph –
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In the October 2022 meeting -
- Since then we have participated in some of the discussions frustrated that nothing much is being achieved (4).
- The sole tangible outcome appears to be the DHSC Interim Delivery Plan report, yet offering little new information. While some proposed actions are welcome, their impact hinges on swift and earnest implementation rather than mere suggestion.
- More delay while this survey is analysed - Urgency still not a priority overall and still no sign of any funding forthcoming specifically for research into ME
- The existing research centre in Norwich Research Park has not been recognised and its potential for rapid progress in research is therefore lost, with further delays to progress
- There now seems to be an intent to supply a set of recommendations for research by May 2024 - and no knowledge of what will definitely be implemented, what the content of planned education and information will include, and no definite research strategy being funded
- Eighteen months have passed since Secretary of State for Health Javid's announcement with nothing yet achieved that can be termed a change for people with ME
Latest Meeting
On 24 November 2023, we participated in an update meeting of the research working group where we heard that recommendations would be formed to be put to DHSC by May 2024, based on what had transpired in meetings up to that point, and any actions that had been taken.
This will have been the output from two years of discussions.
We passed these comments -
- We did not believe and had no confidence in this plan achieving anything
- We stated that we thought recommendations would just be another document that would achieve nothing and, with a pending election becoming imminent, the recommendations would be subject to whatever government was elected and the policies and decisions it pursued.
- We argued that passing recommendations without immediate funding allocation would maintain the current situation. Researchers would likely receive small, piecemeal funding through individual applications, potentially favoring only a select group of researchers.
- We also said that it was still at the mercy of MRC peer reviewing – and we all knew how suspect that has been for ME over the years.
- Just repeating the current situation with a few more web site pages updated, a dusting off of the eleven-year-old highlight notice and a few more documents to be added would achieve nothing.
- We reaffirmed our view that the document we submitted back in September 2022 in the first meeting to which the charity had been invited was still, in our view, the best way forward. These contained three recommendations –
- - Use what has already been developed and expand and augment the centre in Norwich with additional funding to act as a focal point for research, which will then be useable as a way to achieve the other objectives
- - Use the Dutch research agenda as a basis to develop the above. Avoid unnecessary duplication and build on a European model for research, which may in turn attract more funding.
- - Push back to the UK government stating that funding is required up front to initiate this (as has been performed by the Dutch government and the NIH in the USA already)
- We stated that we have the centre already firmly founded in Norwich Research Park with research at Quadram Institute and UEA, a university and university hospital collaborating, an ME clinic with clinicians and physios already involved, with more funding and research on its way; that we have European and international collaboration already formed with European ME Research Group and a European young/early career researcher network and clinicians group formed. We hold annual research colloquiums with researchers from around the world. Therefore, foundations were already in place and operating – with only funding required.
- All of this has been ignored.
- We believe that the Norwich Research Park environment with Quadram Institute and UEA offers the best location, the most expeditious pathway for progress in research and building of capacity and awareness, and the best value for (limited) funding to develop further the centre of excellence.
Yet our views have been overlooked. Why would that be?
So we suggested a collaborative approach, urging other represented research locations to join forces with the existing Norwich centre to create a comprehensive funding proposal for multiple centres of Excellence for ME.- We also stated that the MRC highlight notice (that had been present for eleven years) was ineffective and useless, despite some comment in the group seemingly believing that it would achieve something.
The APPG for ME now recognises the necessity and benefits of the Centre of Excellence for ME.
Others are finally acknowledging the concept, even disingenuously adopting the term
for their own purposes, despite never supporting our proposal for the Norwich centre since our work began in 2011.
While always hopeful, we remain skeptical of the DHSC
initiative's progress over the past eighteen months, disappointed at the lack of urgency and vision for
real progress.
We have provided feedback on the interim survey plan [4], but actual action seems further
delayed.
We await developments following our expressed views in the meeting.
Despite our ongoing advocacy, development, and funding efforts since 2011, the apparent solution of a UK/European Centre of Excellence for ME in Norwich Research Park is being overlooked.
Facilities, well-developed research, and established collaborations are already in place. While we continue to support what we see as an existing research centre with the potential to become the leading hub for biomedical research into ME in the UK and Europe, the missing piece remains: funding.
It should have been different. We wrote the following back in June 2022 [1] -
Return to Overview of UKCRC Comments
