What do people want me to ask Sonya Chowdhury on Friday

"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.[/QUOTE]@Jonathan Edwards

Thank you @Jonathan Edwards. I hope you not only have a go but make some progress.
You have identified a fair number of doctors but there may be others. Had you thought of including Nina and Dr Hng as part of a younger group, also Dr Bansal who has years of experience of holding the line against Pace inspired treatments?
It may seem that this will be including an even wider range of views which may be true but so long as no one in the group has a commitment or any link to the BPS school (Holgate?), it may be worth getting as wide a group as possible in one room to shake out ideas and see if any of them gel across most of the room.
You may feel this is not what you have in mind at all. As you say knowing how to set up the dialogue will be important.
I really hope you make progress.
 
Jonathan Edwards said:
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.
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OK, thanks, Jo. I absolutely take the second point and I think it's important not just in itself but for the sake of us all involved with ME that this does not happen. A load of junk studies will just undermine our credibility.

It is a real shame about the first. I was talking to Chris recently and it was very disheartening.
 
Jonathan Edwards said:
We have had quite lengthy discussions here on the forum with Peter White and I am sure Sonya has heard these criticisms directly. I am uncertain how realistic they are. They may be but I don't want to get into procedure. I am more interested in people's contributions as individuals.
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I had a brief email exchange with Sonya recently, letting her know about Malcolm Offord and APPG. I mentioned and linked to the thread we had here about the charities. She hadn't known about it, but did say she'd have a look.

It's her first day back today from her break, so it will presumably take a little while for her to catch up with some things.
 
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Binkie4 said:
It may seem that this will be including an even wider range of views which may be true but so long as no one in the group has a commitment or any link to the BPS school (Holgate?), it may be worth getting as wide a group as possible in one room to shake out ideas and see if any of them gel across most of the room.
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See the problem as more complex. Most of these people are unlikely to change their positions and I don't think the BPS position is the only problematic one by any means. My main hope would be that an approach to RCP from AfME could identify a spokesperson at RCP to have a dialogue with. Sonya is very good at getting the nub of a sensible message across. As soon as you have any others involved directly everything is likely to fall apart I think. As Andy has put it there are too many rudders steering things in different directions. e could get interested parties together to discuss where to go if the RCP had opened dialogue but at present there is nobody official to talk with. The coroner has called on the government to act but the people who need to sort this out are the RCP. At the moment the official position seems to be 'nothing to do with us thanks' - or 'talk to the rehab people'.
 
hotblack said:
Can AfME put up a prominent “Information for Journalists” page with key facts, figures and messages about ME they want to communicate?
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A good idea but who is going to write it?

I think practical things like that become useful things to discuss once we have closer dialogue. Another thing that I will be touching on is a closer relation between AfME or World ME Alliance and S4ME - just as something to exchange thoughts about. If there was closer dialogue we might get quite a lot done.
 
My thoughts turn to Maeve and what can be done to prevent this happening again.

The medics responsible for Maeve apparently had no idea how to interpret and apply the NICE guidelines for severe ME in a way which seems reasonable to us, even though the information about severe ME is available they treated it as if a contested matter of opinion.

This deserves to be discussed. Perhaps the JLA setting of research priorities could address such clinical decisions, to show scientifically what treatment is appropriate and expectations for outcomes, to prevent people dying from erroneous medical opinions.

It strikes me the absence of a reliable authority on ME/CFS is a contributary aspect of this tragic treatment failure, so maybe we should seek to encourage the establishment of a clinical centre of excellence, to exemplify appropriate methods and for desperate doctors to refer patients to.
 
Do rheumatologists (or some other specialism not neurology or psychiatry or rehabilitation medicine) have a separate body that could be approached with a view to asking their leadership to adopt ME/CFS as a condition under their umbrella?
The psychiatrists took 'ownership' of ME/CFS 35 years ago. How do we get another specialism to take a leadership role who would be willing to train their members with really good information?
 
boolybooly said:
It strikes me the absence of a reliable authority on ME/CFS is a contributary aspect of this tragic treatment failure, so maybe we should seek to encourage the establishment of a clinical centre of excellence, to exemplify appropriate methods and for desperate doctors to refer patients to.
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I agree that we need an academic unit that focuses on gathering reliable evidence both for clinical care, especially of severe cases, and to provide a patient cohort for research. The problem is who should run it. I dislike the Centre of Excellence term. It is a puff-up term. It goes along with fast-followers who waste money very often.
 
Trish said:
Do rheumatologists (or some other specialism not neurology or psychiatry or rehabilitation medicine) have a separate body that could be approached with a view to asking their leadership to adopt ME/CFS as a condition under their umbrella?
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Yes, the British Society for Rheumatology. There is also a rheumatology specialty set up at RCP although I know nothing about it. I don't know what the BSR would say but at present they say 'do not refer' to us. Moreover, my local colleagues in general are either not interested or have problematic approaches. I don't think BSR is going to be a useful champion at this point I am afraid. The chairman of the Government Working Group was a rheumatologist and may well have been appointed via asking BSR. The Working Group achieved almost nothing I think and could have done with some commitment. Bruce seemed to be more than satisfied with tinkering documents.
 
Jonathan Edwards said:
I agree that we need an academic unit that focuses on gathering reliable evidence both for clinical care, especially of severe cases, and to provide a patient cohort for research. The problem is who should run it. I dislike the Centre of Excellence term. It is a puff-up term. It goes along with fast-followers who waste money very often.
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I agree no entity can reasonably be entitled to claim excellence regarding the quality of their own offering.
 
Jonathan Edwards said:
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.
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Do you think they'd accept the position that in practice, patients know more about ME/CFS than doctors?

I wondered if they might be able to come together around a consultation with pwME/CFS on what they actually need from their doctors and other healthcare providers.

If they did, they might discover that it's as much as anything about clear messaging, insistence on evidence, and advocacy within and between the professions. About understanding that an ME/CFS diagnosis often results in very real physical and attitudinal barriers to every other type of healthcare. And acknowledging that being a world expert in ME/CFS currently involves understanding that all you really know is what the next patient is telling you.

AfME might be interested in something like that.
 
Jonathan Edwards said:
The one person who I think would accept that is Ilora Finlay but she is the most indirectly involved and in theory no longer involved. She is not allowed to continue in a NICE role because NICE rules do not have room for it.
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A bit depressing, but not surprising.

Doctors advising committees seem to feel that they need to have something to say, and that's when they start on unevidenced theories. They haven't got much else.

In reality, there's plenty they could say that would genuinely improve lives and health. But it means admitting there's a problem whose impact is at least equal to the lack of research leads, and probably bigger: the attitudes and practices of the healthcare system itself.

I thought it might help them avoid upsetting influential friends if that message came from patients.
 
Jonathan Edwards said:
I agree that we need an academic unit that focuses on gathering reliable evidence both for clinical care, especially of severe cases, and to provide a patient cohort for research. The problem is who should run it. I dislike the Centre of Excellence term. It is a puff-up term. It goes along with fast-followers who waste money very often.
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I agree finding good people is key and puffing-up undesirable. Maybe my terminology is not a fortunate choice.

I still think there is something to discuss with Sonya here. I found a BBC article "Treatment changes urged after ME patient's death" which summarises questions arising from the inquest.
https://www.bbc.co.uk/news/articles/czrgmdv4z0go
BBC said:
The inquest heard from medical experts who said there was no specialist unit for ME patients anywhere in the country.

It has highlighted the need for properly funded research and better understanding around the condition.

It also noted some doctors expressed doubt ME has a biological basis, a stigma that some groups are campaigning to change.

Sonya Chowdhury, of Action for ME, said: "We need a tangible pathway of care for people with ME and for people with severe ME, having direct access to experts.

"And we also need to see education and an acceleration of research because one day there will be treatments and that has to happen sooner rather than later."
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Maybe an academic unit could provide the kind of authority which would improve practice in future, without the need for a physical hub.

But is it too early to start a credible ME/CFS treatment unit? That is a bit omelette and egg, considering Germany has had one at Charité for decades... presumably by gathering clinicians and patients in one place they hope to foster understanding. Would that not assist academic study in the UK?

Re psychological perspectives stigmatise and cause mistreatment of ME patients, the problem of who should run such a unit also applies, lest the BPS lobby try to stuff an ME unit with believers. If a unit is going to start as a result of media coverage of the inquest, its important the right people are ahead of the game and in on the ground floor, as that will set the direction of travel. We dont want the UKs first specialist ME unit run along the lines of BPS ideology or fast-followers of fashion, or Tysonesque wolves in sheeps clothing.
 
hotblack said:
Can AfME put up a prominent “Information for Journalists” page with key facts, figures and messages about ME they want to communicate?
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They did create a media guideline in PDF format last year that they sought feedback on, but the final document was still problematic in a number of respects if memory serves. I don't know what the status of it is now, or if it was put to use.

https://www.s4me.info/threads/uk-action-for-me-media-guidelines-for-reporting-on-m-e.32363/
 
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