UKCRC

Minutes of Meeting - Must be available to all

The minutes from an earlier meeting stated that future meeting minutes would be circulated to members of the Working Group and would be kept in confidence.
We stated that it would be best if the full minutes of meetings, as supplied to Working Group participants, should also be made available to patients and carers, and to the public (with the caveat that personal details could be removed, along with embargoed data and ad-hoc comments that are part of the banter of any meeting.
However, opinions and the reasoning behind them that influence decisions should be available for all to see.
Elsewhere in other documents provided we noted that objectives included building trust and demonstrating transparency. We felt that these points needed to be connected.
We stated that people with ME and their families have had to endure enough of being kept in the dark by influences beyond their control and felt that transparency and building trust is best served by being completely open.

Location of stored Minutes - Should Be Stored on UKCRC Site or Available to All

A previous meeting had decided that a high-level summary of topics discussed would be shared publicly via the Forward ME website.
We stated that if one location is to be used to sToRe documents then it should be on the UKCRC web site. Otherwise all should be able to sToRe them.
It was later stated in the meeting by the chair that documents would be available for all to share.

ME Specialism

Minutes from a previous meeting contain a reference to encouraging establishment colleges and societies to give a home to ME/CFS as a multi-system condition.
We believe that ME needs a specialism to be developed and academic consultant positions established.
We have already explored this at the centre in Norwich and had a willingness to establish such a position but there was a problem of finding a suitably qualified candidate, and then came the pandemic.

ToR Lack of Trust

The Terms of Reference mentioned a lack of trust between research funders, academics, charities and people with ME/CFS. and that there was a low capacity in the research community to respond to research needs.
We thought that the ToR ought not to stress this or should remove it. There was little point in merely stating that there was a lack of trust without mentioning why and therefore what should be done about it – as otherwise it perpetuates the same clichéd implication that has been maintained that patients are somehow at fault.
Distrust was generated by the actions (or lack of actions) from some establishment organisations.
Patients have probably had good reason to remain distrustful – but the fault lies not with patients.

ToR Commitment

We stressed that the time line for delivery should be short as many patients had already been dealing with the disease for decades – so urgency in getting research funded and started is crucial and should be stressed in the objectives.
We need to decide things urgently and produce an earlier fast track for research and hopefully there would be phases which allow early starts on research support.

ToR Decision-making

It was stated that the Working Group would seek to make decisions by consensus and would require a majority vote for actions or decisions to be carried forward
However, it seemed to us that some charities have double representation (and therefore double influence) by being represented once as themselves, and again as a member of the Forward ME forum.
If Forward ME is representing its member organisations, then there should not also be a voting right for individual members of that grouping.

Options to deliver on Working Group aims

In this section input was required to suggest how to achieve the aims of the Working Group. Also comment was requested on the UKCRC Working Group draft proposal to create three Subgroups.
We commented on these requests but also added our views on what really needs to be achieved and how that will affect much of the other desirables listed in the document.
One of the aims was stated as raising awareness of research into ME/CFS among funders and the research community.
We are not really sure what this means.
ME had a highlight notice against it for many years.
Invest in ME Research has also been arranging annual international conferences and international research meetings for researchers since 2006, regularly bringing researchers from twenty countries to London.
The charity also had correspondence to the CEO of the MRC as well as to the Chief Medical Officers of UK - and invited them to our international conferences.
We even had the chair of the Royal College of GPs speaking at one conference.
So it should not be necessary to raise awareness to these establishment organisations.
If the MRC is not aware of research into ME then the fault lies there and if this really is an issue then one wonders why.
Perhaps ask why so little funding is allocated, why peer reviews for applications for funding have not been seen to be objective and how this leads to little incentive to apply as applications take time and effort and are subject to poor outcomes.

Build trust between research funders, researchers, charities and people with ME/CFS and address Historical stigma

There should be no need for this. The fact that it was mentioned may then need to have the hisToRical perspective analysed and documented.
Interestingly, we have never found there to be any lack of trust between the researchers, clinicians and our patient/carer supporters with whom we are in contact.
At Invest in ME Research’s international conferences and research meetings that have been arranged since 2006 all have mingled and networked with no problems.
Stigma is often mentioned – but in fact it is just discrimination from health care areas usually based on ignorance, apathy or conflicted interests – and also by lack of enough research to provide evidence.
We stated that it any strategic approach to research would obviously build on research performed elsewhere as all research is likely to be influenced by evidence from elsewhere.

Consider What Already Exists

Other points such as consider which research would have the greatest impact for people with ME in the short-, medium- and longer-term; the sequencing of the research questions and dependencies on data and/or knowledge generation from other studies. and encouraging and supporting researchers to develop high quality research into ME/CFS with people with lived experience of ME were nothing new.
We have long been doing this so again it is obvious. The only way to achieve this will be via the provision of funding for research.

What needs to be done is for a base of fundamental research to be set up.
We feel this exists already in Norwich Research Park.
The only way to achieve this will be via the provision of funding for research.

Proactively Foster Increased Research Capacity

Objectives such as to proactively foster increased research capacity, building on the response to recent long COVID calls and bringing in a range of multi-disciplinary researchers were also what the charity has been doing.
The reality is that it depends on funding and proper assessment of applications.

Stating aims such as increasing capacity and bringing in multi-disciplinary researchers without tackling the underlying issues that exist is just more word salad.
This depends on funding.
With any skills gaps to improve capability - this will be evolutionary as a research strategy is started.
Currently, there is relatively little research and capacity due to funding constraints.
It will not be possible to support sustainable research without funding.

Questions for Members of the Research Working Group Regarding Further Sub Groups

Questions were posed to the research working group such as whether there was agreement to set up Subgroups to deliver on the aims set out in the ToR?
These subgroups were -
1. Research Strategy
2. Building capacity and capability
3. Raising awareness and building trust
Regarding the draft proposal on subgroups, we would also say that the objectives of the second and third subgroups proposed would likely be achieved by the first, and defining subgroups could be left to a later stage for deciding whether required. The other questions were all dependent on the first. We thought the second and third sub groups would be encapsulated by the first.
This is also dependent on how research is set up.

What Exists Already

We make a suggestion regarding What Exists Already that we feel should be considered.

We feel that what is missing is looking at what already exists – and what does not need to be reinvented.
Good foundations exist already to begin a phase of further development.
As stated in the ToR – for any “identified priority research questions for ME/CFS, it will take time for the research to respond”

So what is already present, supported and functioning should be considered for further investment.

The document at the link below shows what is being done and has been done already and we feel that Norwich Research Park already has established a good foundation that could be built upon already to achieve more of what is needed.

We also suggest that the model already established and underway in the Netherlands should be considered.

We have been talking to our Dutch colleagues over the past years and seeing them develop their research agenda and this could easily be harmonised as we have links already established.

Finally, we feel the group should also provide a push-back to the Department of Health and demand adequate funding already (see our proposal in the previous UK parliamentary debate to provide £20 million per year for five years).
All at this link [2]
The planned working groups being set up (even if they are allowed to contain participants who can think differently and want to make progress) are unlikely to achieve more than we already could do with existing ideas – but they will take time to produce whatever documents they make.
It could be years before likely concrete proposals or specific projects might be funded and implemented.
Obviously, any scheme will result in calls for research to be funded.
Yet that is the case now.

In summary:-

• 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).