What do people want me to ask Sonya Chowdhury on Friday

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.

 

"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.

 

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

Yes it is. Structures that are barriers to making progress need to go.

 

A quick and perhaps easy one..

Can AfME put up a prominent “Information for Journalists” page with key facts, figures and messages about ME they want to communicate? This seems to work well for other charities when a journalist needs something to copy and paste, er, research, for a news story.
See https://www.s4me.info/threads/groundbreaking-project-seeks-to-illuminate-the-complexities-of-parkinsons.40336/#post-55534

 

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'.

 

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.

 

Yes, I plan to see her 'between trains'. Hopefully she will be energised and refreshed and raring to go!

 

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.

 

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.

 

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.

 

I agree no entity can reasonably be entitled to claim excellence regarding the quality of their own offering.

 

The hype is as much a behaviour of funding bodies and charities wanting to sound as if they are funding the best chaps.

 

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.

 

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.

 

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.

 

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

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.

 

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/