What do people want me to ask Sonya Chowdhury on Friday

Research.

At the moment there is a great campaign and some efforts by charities, but in my view it lacks a realistic target and a realistic plan on how to get there. It needs greater coordination and focus, and Sonya is the only one in my opinion who can provide it. It seems to me that Sonya is the ME CEO and Charles Shepherd the ME medical adviser. They (and I also think you) and others need to try to find a way to increase massively, realistically, in a way that provides value for money, research into the illness. There are good people out there ready to do proper research (including Chris and eg Danny Altmann).

How do we get it done?
 
I hear what you are saying John, but I cannot think of anything much that Sonya and I can do to take this further between us. It was discussed extensively at the Government Working Group on Research. Two things stood out for me. Firstly there is the question as to whether good grants have in fact been turned down because of poor policy by MRC and NIHR. We had people there who could have been engaged in dialogue but they hid behind protocol. Things should have been pushed but were not. So we don't know the facts. The only person I can think of who could make headway on this is Stephen Holgate, who knows the machinery well. I have no direct involvement in grant giving bodies. The chairman, Ian Bruce, could have pressed things but did not seem interested. I suspect that there is a real problem but both Sonya and I know that and have no means to take things further.

The other issue is that if you open up the coffers you immediately get parasitic individuals bidding for funds and the way things work in science is that these people always get funded rather than true innovators. True innovators have to make a case for something nobody else has thought of. Large sums have been poured into Long Covid research in the USA and they have been sopped up like blotting paper by the fast followers and I suspect nothing will emerge. If money gets wasted on empty projects there will be even less chance of decent funding. People like Chris and some Australian and European groups are putting in good grants and at least some of the time being funded.

I don't think Sonya would claim to be in a position to get involved in ensuring peer review works well.

Someone who may be in a relevant position is David Strain. David is a medical advisor to AfME but his role in research is separate from that. That is something we might discuss though.
 
I have posted on Twitx as well, but I think it would be useful to ask why the elearning is a slideshow and doesn't make use of such amazing patient produced resources such as Dialogues for a forgotten illness, or the wealth of podcasts about lived experience of ME and LC or the extensive library of YouTube videos and interviews with researchers and people like Todd Davenport or linking to physios for ME etc.

There is so much existing good stuff out there and I thought AfME were all about patient participation and co production after DecodeME and the James Lund Priority Setting Partnership?

This stuff already exists, so it wouldn't cost anything, it just needs selecting of the good stuff and not the speculative stuff.

Thank you
 
As well as doing research, I think it important to dismantle the old/ current views of ME/CFS. Doctors are currently treating patients from within a perspective that is not based in science, as 2021 guidelines made clear, and in the process are harming patients. That is actually what killed Maeve. While this situation prevails, there will be more deaths.

Yes, we need research but even more, at this moment, we need to strip away the old thinking essentially based in PACE. Sonja can help this by ensuring that AFME's medical advice is sound. Having just read @Jonathan Edwards, perhaps there is a way of moving David Strain more into research and away from his current role. And Jonathan, the medical establishment needs to move. The Royal Colleges need to be updated. You would be ideal. Are there any key people in RCP and perhaps RCGP and other most relevant Colleges who could be approached, a meeting convened perhaps, off the back of the Times' campaign? How close are the Colleges to being ready to move?


edit: I suspect the answer to my question is - they are not-but could you suggest any way of getting inside perhaps involving Nina Muirhead if she is fit?
 
JellyBabyKid said:
There is so much existing good stuff out there and I thought AfME were all about patient participation and co production after DecodeME and the James Lund Priority Setting Partnership?
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Yes, I am definitely going to raise the e-learning project. As I understand it AfME is not specifically involved in this other than as stakeholders at the Govt Working Group that initiated the project. The project now seems to be even out of their hands.
 
A vital issue for me is the importance of accurate and relevant information that is NICE compliant put out by the NHS and how to ensure there is training for all new doctors and access training for current medical staff that explains as much what can not be done as what can be done, ensuring medical provision recognises the need to adapt to sensory issues and understands PEM and the risks from triggering PEM. Also that this recognises the need for prompt consideration of the full range of alternative feeding methods for the very severely affected.

Though long term we should be looking towards better research and the development of specialist doctors and nurses, much could be achieved by current medical provision that meaningfully recognised the implications of sensory issues and the dangers of PEM, and simply listened to the patient and their carers.
 
Binkie4 said:
Sonja can help this by ensuring that AFME's medical advice is sound. Having just read @Jonathan Edwards, perhaps there is a way of moving David Strain more into research and away from his current role.
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There are certainly issues here. The care plan project should not have got past advisors. David Strain has taken up a government position relating to health care research in general and I think he would now have a conflict of interest if he advised AfME on research. He has not actually published any research of his own on ME/CFS anyway.

Binkie4 said:
The Royal Colleges need to be updated.
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This is a good one for my list. The last involvement of RCP was their objection to NICE 2021 and Lynne Turner Stokes's defence of old ways at the NICE round table. There have been two new presidents since but the current one has resigned. Lynne will still be there. The gastroenterologists will no doubt still believe in 'gut-brain axis' functional problems. But somehow a dialogue needs to be set up. One of the problems is that we need to be singing from the same hymn sheet. The other physicians I know who have an interest are Binita Kane, Willy Weir, Stephen Holgate, David Strain, Ilora Finlay, Michael Beadsworth, Terry Segal (paediatrician). Not a single one of those is singing from the same sheet as any other. One of the reasons for talking to Sonya is that she seems to see the sense in the middle. A dialogue is needed but it is hard to know how to set it up. I raised this with people linked to the old Forward ME and we got nowhere much. I need to have another go.
 
How do we push the ‘do no harm’ message? To me this is key.

There’s lots of people trying to do ’things’ but they are often hijacked or derailed or simply misguided. I feel we almost need to start by not doing things. And by recognising it’s ok to say ‘we don’t know’. A lot of harm is done well meaning people.

I absolutely agree education and research is the future. And it’s not that I and others don’t want (and need) more help and support. But the first step seems to be to dismantle the barriers and structures that are problematic.

I think this is along the lines of what @Binkie4 is saying too?

I’d also ask how she thinks we can reduce the amount of duplication of effort. Many at the moment seem to be trying to write their own versions of the NICE guidelines rather than unite behind them.
 
Along with the known issues with NHS care and the Delivery Plan (which the NHS seems to have swallowed whole), I am very concerned about the research landscape. We're in a very bad situation. There are currently only two biomedical ME/CFS projects funded by government: DecodeME and a project on autoantibodies (https://gtr.ukri.org/projects?ref=MR/Y003667/1). I have data on MRC proposals from an FOI and the situation is shocking. There were only *two* ME/CFS proposals to MRC in 2022–2023; both rejected. This, at a time of the MRC ME/CFS Highlight Notice, is an abject failure.

So, I would like to know if Sonya is aware that MRC simply aren't getting the proposals. *NOBODY IS APPLYING*. CMRC/MERC was set up to bring funders and charities and researchers together to boost research. I don't even know what the current status of MERC is. It was on its last legs when I left its Patient Advisory Group in 2022, partly because the Delivery Plan work started up. I would really like to know what the Delivery Plan research working group is suggesting, because things can't continue as they are. We are not going to get anywhere with only charity-led research programmes. We need to get the MRC and NIHR funding good projects—we've been triying to do this for two decades!

In 2022 AfME advertised for a Research Director. https://www.actionforme.org.uk/uploads/images/2022/03/Research_Director_Application_Pack_1.pdf I would like to know what happened to that position, given I believe it was never filled. I would like to know why and if they had trouble recruiting.
 
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This
Jonathan Edwards said:
The gastroenterologists will no doubt still believe in 'gut-brain axis' functional problems. But somehow a dialogue needs to be set up.
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and this

Peter Trewhitt said:
how to ensure there is training for all new doctors and access training for current medical staff that explains as much what can not be done as what can be done, ensuring medical provision recognises the need to adapt to sensory issues and understands PEM and the risks from triggering PEM. Also that this recognises the need for prompt consideration of the full range of alternative feeding methods for the very severely affected.
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Perhaps underline that some of the more experienced heads in the community are really concerned about the direction the charities' collaborations are taking, to the extent it risks long term damage to their credibility?

IAfME and the e-modules, MEA and the PROMs—both are hopeless missteps that should have been apparent before they were taken.

ETA:

Sorry, I meant the care plans, not the e-learning. I know the latter isn't one of their own projects.
 
Jonathan Edwards said:
Suggestions welcome. I will be raising the very severe care problems, e-learning, and the Government Delivery Plan in general. I will also thank her for responding so quickly to concerns about care plans.
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I recommend contacting https://x.com/mediumwhite

He has criticized the charities and I think he has a point. I don't remember all the details. He pointed out the charities are ineffective at fundraising and at spending funds, and that they have been run by people who have been there for far too long.
 
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InitialConditions said:
I would really like to know what the Delivery Plan research working group is suggesting, because things can't continue as they are.
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Even I am not very sure, having sat on it. The main specific proposal was to encourage re-purposing drug trials but nobody much could come up with drugs except naltrexone and a proposal on that was turned down. There was talk of a bid for £50M for an 'ME/CFS Hub' but I could not get clear exactly what this was supposed to involve and my concern would be that it would immediately be taken over by second rate people and vanish.

InitialConditions said:
In 2022 AfME advertised for a Research Director. https://www.actionforme.org.uk/uploads/images/2022/03/Research_Director_Application_Pack_1.pdf I would like to know what happened to that position, given I believe it was never filled. I would like to know why and if they had trouble recruiting.
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An interesting point. I will put that on the list to ask Sonya.

Kitty said:
Perhaps underline that some of the more experienced heads in the community are really concerned about the direction the charities' collaborations are taking, to the extent it risks long term damage to their credibility?
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This is certainly on my agenda. Sonya knows my own misgivings because I signed the letter about the care plan.
 
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