What do people want me to ask Sonya Chowdhury on Friday

[Nightsong]

There is the broader question of the resources on AfME's website. After all this time they still haven't fixed things - while at least the care plan is gone the pacing guide and "This is M.E." guide are still online, with no indication of when they will be revised & replaced. Having one of the two main charities put out unreliable material without even a timeframe for its replacement isn't at all helpful. I'm concerned that they have such an ill-advised collaboration with the Bristol clinic & really concerned that no-one in AfME sees the issues with all the different material they put out when they are so very obvious to members here.

Something that would be useful to know is how the existing NHS clinics, which AfME will know more about, have all reacted and adapted to the post-NICE situation - we don't see many people on S4ME who have recently passed through the clinics; is any positive change occurring at all? And on the feeding issues is there any dialogue at all - have any professional bodies e.g. BSG given any indication as to their position, is there any understanding that serious action needs to be taken, has there been any movement in response to the media coverage?

Might also mention the "ThereForME" campaign. Also, is AfME doing anything in relation to medical education? Maybe the Scottish RCs might be a little more helpful on that - if I recall RCPE did an event with ME Action earlier this year. There does really need to be a dialogue with RCP although it seems unlikely at the moment.

The chairman of the Government Working Group was a rheumatologist and may well have been appointed via asking BSR.

Running a quick Scopus & PubMed search to see if he had authored anything relevant - assuming it is the same Ian Bruce there are two publications relating to parvovirus B19 associated CFS, including this one ("Chronic Fatigue Syndrome and Arthralgia Following Parvovirus B19 Infection", J Rheumatol 2002;29:595–602) & was co-author on a short IVIG treatment report ("Sucessful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19-Associated Chronic Fatigue Syndrome", Clin Infect Dis 36;9:1212).

 

[Trish]

There is the broader question of the resources on AfME's website. After all this time they still haven't fixed things - while at least the care plan is gone the pacing guide and "This is M.E." guide are still online, with no indication of when they will be revised & replaced.

On this aspect of AfME's work, the recent correspondence with Sonya over the care plan template fiasco may be of relevance. I have just posted Sonya's reply to my follow up letter on the thread:
https://www.s4me.info/threads/open-...upport-plan-template.39894/page-5#post-558106

 

[hotblack]

we don't see many people on S4ME who have recently passed through the clinics; is any positive change occurring at all?

I don’t want to publicly go into details and I am just one person, but given some relatively recent experiences I’ve had nothing has changed for the better in the NHS specialist service in my area.

 

[Sparkly Unicorn]

A few possibilities:

With the change of government it might be worth asking her if she/Action for ME have initiated or had any contact with the new health team - Streeting and Gwynne?

Not sure if this is possible as the charities aren't hugely staffed or funded and personal advocacy they do is lite. Yet, in the light of those with severe ME who have been hospitalised/ & or inappropriate safeguarding has happened is it possible for there to be a crisis team across the charities where there is a more coordinated response/protocol?

Both so they can help the individual and communicate with the public. There just seems to be a comms issue ATM.

Any news on the chair of the APPG?

And thank you @Jonathan Edwards for opening up this question thread

 

[Nightsong]

In 2019 ME Action ran a survey on the clinics in the UK. I'd like to see a follow-up survey, or some other kind of systematic data collection / experience documentation effort to see if anything has changed post-NICE. And whileever the clinics do (unfortunately) exist in their current form any opportunities to make incremental improvements should be taken; I'd like to know if AfME are trying to do that.

The idea of a small liaison group of professionals, whom NHS hospitals could turn to for advice when needing to treat a very severe patient (either for gastroenterological symptoms & malnutrition or for something else entirely) might also be worth exploring.

And yes, thanks @Jonathan Edwards, for doing all of this.

 

[Kitty]

is it possible for there to be a crisis team across the charities where there is a more coordinated response/protocol?

I've been thinking about this too, but as it was more about a crisis team of doctors, it's probably not for this thread.

It would be good to have a small group whose members could take part remotely in a case conference-type setup, to support colleagues in general hospitals who find themselves looking after a severely ill person (including capturing data that could be used in the development of hospital protocols). It would mostly be about feeding, liaison with families, and making the environment as tolerable as possible for patients.

ETA: cross posted with @Nightsong.

 

[Kitty]

I'd also like to thank @Jonathan Edwards. And to ask him to pass on thanks to Sonya for the work she and her team members are doing.

 

[Hutan]

Yes, thank you for asking, @Jonathan Edwards. And yes, definitely worth letting Sonya know that a lot of people think she is doing a good job.

There is the broader question of the resources on AfME's website. After all this time they still haven't fixed things - while at least the care plan is gone the pacing guide and "This is M.E." guide are still online, with no indication of when they will be revised & replaced. Having one of the two main charities put out unreliable material without even a timeframe for its replacement isn't at all helpful. I'm concerned that they have such an ill-advised collaboration with the Bristol clinic & really concerned that no-one in AfME sees the issues with all the different material they put out when they are so very obvious to members here.

Yes, as others have noted, there have been a series of 'substantially less than ideal' documents put out by AfME (before the care plan template e.g. the media guide, the pacing document). They are announced with fanfare, people here put a lot of time into responding and suggesting changes, and then it has sometimes seemed that nothing much happens. It could be worth discussing what AfME's writing and sign off processes are for documents. Is the problem that staff with little knowledge of ME/CFS are producing the documents? Is it that Sonya doesn't have the time to closely review these documents? Is there scope for this forum to help in a more formal and structured way in document production and proof-reading?

And yes, what on earth is going on with the collaboration with Gladwell, and can they please stop doing that? If not, why not?

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.

Related to this, I think AfME took over a charity that provides clinical services to people with ME/CFS. I felt uneasy about that, as it is spreading the attention of senior staff even more thinly, when improving the NHS services would, I think, be more productive. But, given they do offer clinical services, ideally, these services will be shining lights showing how clinical care of people with ME/CFS should be done. Others here will know more about the services, and whether they are promoting unevidenced treatments and ideas. So, perhaps this is a topic for a later time, but
1. I hope that Sonya and her team are scrutinising their own clinical services, and are completely sure that they are compliant with the NICE ME/CFS guideline.
2. Do they have a process to ensure that unevidenced treatments offered outside of trials and unevidenced ideas about aetiology don't creep into their clinical services?


(Another topic for another time, but just in case Sonya is reading this thread: googling AfME to check on the clinical services, I am reminded of https://www.afme.org.uk/all-about-me.html.
Is Action for ME aware of that site which promotes CBT and graded exercise as treatments, and is there anything they can do about it?)


Regarding the World ME Alliance, yes, I certainly agree that some discussion about how links between this forum and the WMEA could be strengthened would be very useful.

 

[JohnTheJack]

(Another topic for another time, but just in case Sonya is reading this thread: googling AfME to check on the clinical services, I am reminded of https://www.afme.org.uk/all-about-me.html.
Is Action for ME aware of that site which promotes CBT and graded exercise as treatments, and is there anything they can do about it?)

I didn't know about that. That's appalling.

 

[hotblack]

ideally, these services will be shining lights showing how clinical care of people with ME/CFS should be done.

Short experience I had with them before AfME took over was while some people initially seemed good they turned out to be completely inflexible. As far as getting advice from a Dr they refused to deviate from the hour long appointments or discuss methods of communication that would work for me. They had a way of doing things and that was that, take it or leave it. It felt just like dealing with the NHS where you have to fit around them and jump through hoops. I was very very disappointed and it wasn’t at all what I would call a shining light of how clinical care should be done.

 

[Natalie]

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.



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.

Perhaps you could include Nigel Speight? He's still very active in fighting for young people with ME and their families and is still working as a NHS paediatric consultant.

 

[Kitty]

Thought I'd add this here—a link to Sonya's reply to @Trish's letter about the care plan.

https://www.s4me.info/threads/open-...upport-plan-template.39894/page-5#post-558106

A couple of posts further down, I mention the possibility of S4ME participating in AfME consultations as a community rather than as individuals. If there's time at Friday's meeting, could this idea be mentioned? Not with any expectation of getting answer there and then, but as food for thought.

It might look more difficult to manage as an approach, but until it's tried we won't know whether the benefits could outweigh any drawbacks. And the charities do sometimes seek feedback via other social media platforms, so there's a precedent of sorts for putting ideas to groups of patients.

 

[Sean]

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.

While I agree that there is always the need to have new people coming in and moving up the ranks, it is also important to maintain the corporate memory from the old hands. New hands usually don't know where the bodies are buried, who to trust, the weaknesses in our and our opponent's arguments, and the tactics that get deployed against us. That can only come from hard experience.

the problem of who should run such a unit also applies, lest the BPS lobby try to stuff an ME unit with believers.

I think we can take it as a given that they will try to do exactly that. They always have at every possible opportunity.

is it possible for there to be a crisis team across the charities where there is a more coordinated response/protocol?

This might work, particularly in the interim until better system wide reforms are in place.

 

[bobbler]

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?

This

we need to be thinking about to unpick ourselves out of being avalanched under functional ‘initiatives’ that it seems may be insidiously pushed through the various areas pwme might end up in contact with. Like hospitals and GPs

but are working like some big third way that really doesn’t care what we are called or the divisions underneath but just about diverting anyone they think might be ‘Mus’ into a ‘special service’

I think changes for me/cfs need to be putting us back in a group where we are treated as medical, including any other conditions we have

but I suspect as long as we are still letting the same inappropriate old staff at the table (BAcme anyone) their approach isn’t like a biomedical mission to get to the bottom of one day but see us as part of that lump they’ve created and maybe just doing a sop within that to make it seem like the therapy is more serious

their personality type and attitude also doesn’t fit - and it wouldn’t because they were attracted to and hired for roles when the opposite was thought of what to do to ‘deal with us’ and the mental health harm of having people in a clinic or writing the very education fir anyone who comes across us is huge. As well as the physical harm. But I think they don’t realise having someone with empathy and active interest because they want to build their knowledge of patient insight is what everyone assumes if they get very ill and getting the opposite knowing those people won’t learn because they’ve a think they know better so it’s never going to get anywhere because we are trapped under them is huge.

I just think these tables need a rethink and all the superfluous professions and old guard need to be removed from them in order that it is only patient need and objective look at he illness on the agenda and not the jobs and beliefs of these old multidisciplinaries.

And if any of those professions could input it needs to be the opposite end anyway the innovators who were calling out spotting the issues like physiosforme , workwell, and there are likely good proper situational psychologists and OTs who might start with saying how we need empathy and listening to understand as a personality and skill set from people we have in clinics as ‘mental health/wellbeing’ considerations over ‘thinking courses’ so people get our illness, hear our situations and want to if they can do the small things to sort it or just at least make patients feel seen.

im not being mean in saying we need this old guard deprogrammed and made to listen to what their old stuff did to us and for us to hear they’ve heard and that in no way then should they be being involved in designing something for us. I’m not sure they are the right ones to work there mostly. I’m frustrated given we know the job description and care needed should be the opposite of what it was that they or anyone else isn’t thinking and assuming that means different people to them.

I know there is the who else (would staff a clinic/deal with us) but I’ve found people who are nice and good in the generic (ie non me-specific bits of medicine and indeed good consultants who don’t have this mindset so it is culturally ‘pumped in’ as ideas at least to many) in a way sadly the me-specific I’m afraid the personality type and attitude is generally unacceptable to the level I met one as a person paying privately to be treated for something else and was unfortunate to have come across someone who ‘worked in a clinic’ and I’ve never ever had half an hour of such basic abuse after abuse ever. I walked out back to my quite senior job and had to remember who I was the coercion and tearing me down to feel less powerful had been so utter.

But it was just something very unpleasant and very trained-in (to not notice the reaction), but something also very relevant to gerrymandering research results or feedback when you combine the impact of that attitude and created situation. I actually paid for it myself and technically could walk away with limited notes, who knows if I reported the damage caused physically by that woman - so she has no clue. But I couldn't and didn't because of the 'communication style' they'd been clearly taught to employ. That isn't how people learn 'expertise' worth contributing.

now they act like victims. But they aren’t. And to have them speak for me or about me to others who don't know cannot be productive or appropriate.

and what I keep watching makes me more sure each time that I think it’s time to call it. That the new does absolutely mean removal of those old staff from having a hold over our fate. There will be some fresh thinking that doesn't have to be in that 'box'. Because otherwise it’s just compromise of the needs of some wacky staff into everything that should be about making things simple and less complicated on what the illness is and steps to what is needed and must be built. And the cognitive dissonance making our illness sound wacky as they try and fudge sales pitches as to why what they want to offer makes sense. It isn’t helping.

 

[bobbler]

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.

This

 

[JemPD]

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.

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.

I don’t want to publicly go into details and I am just one person, but given some relatively recent experiences I’ve had nothing has changed for the better in the NHS specialist service in my area.

I'd also like to thank @Jonathan Edwards. And to ask him to pass on thanks to Sonya for the work she and her team members are doing.

es, as others have noted, there have been a series of 'substantially less than ideal' documents put out by AfME (before the care plan template e.g. the media guide, the pacing document). They are announced with fanfare, people here put a lot of time into responding and suggesting changes, and then it has sometimes seemed that nothing much happens. It could be worth discussing what AfME's writing and sign off processes are for documents. Is the problem that staff with little knowledge of ME/CFS are producing the documents? Is it that Sonya doesn't have the time to closely review these documents? Is there scope for this forum to help in a more formal and structured way in document production and proof-reading?

And yes, what on earth is going on with the collaboration with Gladwell, and can they please stop doing that? If not, why not?

Thought I'd add this here—a link to Sonya's reply to @Trish's letter about the care plan.

https://www.s4me.info/threads/open-...upport-plan-template.39894/page-5#post-558106

A couple of posts further down, I mention the possibility of S4ME participating in AfME consultations as a community rather than as individuals. If there's time at Friday's meeting, could this idea be mentioned? Not with any expectation of getting answer there and then, but as food for thought.

It might look more difficult to manage as an approach, but until it's tried we won't know whether the benefits could outweigh any drawbacks. And the charities do sometimes seek feedback via other social media platforms, so there's a precedent of sorts for putting ideas to groups of patients.

The above quotes represent my thoughts too. When i saw the title of the thread, one word came to my mind... Gladwell.

No offence to him personally, I chose to see him as well meaning until i have proof otherwise, but AfME's use of him to write their materials has been problematic, his influence seems to be everywhere, AfME, Cochrane, MEA PROMS, its troubling, when he clearly is a rehab proponent & isnt nearly as 'expert' as he/others think he is, regardless of all his years of experience in the clinics. If The Gladwell/Tyson offering cant even tell the difference between fatigability & PEM what ruddy hope is there?

It would be great for AfME to be able to collab more withS4, or even just, as has been said, seek feedback here, at least they'd have it before, rather than after the fact. No commitment to do as any of us suggest, but at least to be able to hear alternative views.

And huge thanks to You both Jonathan

 

[bobbler]

Yes, thank you for asking, @Jonathan Edwards. And yes, definitely worth letting Sonya know that a lot of people think she is doing a good job.


Yes, as others have noted, there have been a series of 'substantially less than ideal' documents put out by AfME (before the care plan template e.g. the media guide, the pacing document). They are announced with fanfare, people here put a lot of time into responding and suggesting changes, and then it has sometimes seemed that nothing much happens. It could be worth discussing what AfME's writing and sign off processes are for documents. Is the problem that staff with little knowledge of ME/CFS are producing the documents? Is it that Sonya doesn't have the time to closely review these documents? Is there scope for this forum to help in a more formal and structured way in document production and proof-reading?

And yes, what on earth is going on with the collaboration with Gladwell, and can they please stop doing that? If not, why not?



Related to this, I think AfME took over a charity that provides clinical services to people with ME/CFS. I felt uneasy about that, as it is spreading the attention of senior staff even more thinly, when improving the NHS services would, I think, be more productive. But, given they do offer clinical services, ideally, these services will be shining lights showing how clinical care of people with ME/CFS should be done. Others here will know more about the services, and whether they are promoting unevidenced treatments and ideas. So, perhaps this is a topic for a later time, but
1. I hope that Sonya and her team are scrutinising their own clinical services, and are completely sure that they are compliant with the NICE ME/CFS guideline.
2. Do they have a process to ensure that unevidenced treatments offered outside of trials and unevidenced ideas about aetiology don't creep into their clinical services?


(Another topic for another time, but just in case Sonya is reading this thread: googling AfME to check on the clinical services, I am reminded of https://www.afme.org.uk/all-about-me.html.
Is Action for ME aware of that site which promotes CBT and graded exercise as treatments, and is there anything they can do about it?)


Regarding the World ME Alliance, yes, I certainly agree that some discussion about how links between this forum and the WMEA could be strengthened would be very useful.

I hear good things about the doctors stuff and claire Taylor seems to be doing good things on social media

but yes obviously as the point is that it should be set up so that things can’t go wrong etc and that if so it would be picked up on so understand that leading by example on oversight and checks etc (vs what we’ve had for years) it's an important question

 

[MrMagoo]

I don’t want to publicly go into details and I am just one person, but given some relatively recent experiences I’ve had nothing has changed for the better in the NHS specialist service in my area.

Similar.

 

[Robert 1973]

The only person I can think of who could make headway on this is Stephen Holgate, who knows the machinery well.

What has happened to Stephen Holgate? My recollection is that Sonya got on well with him. Is there anything useful that she could persuade him to to at this juncture?

Notwithstanding your answers above @Jonathan Edwards, I would like you to speak to Sonya about strategies for advancing research. I can’t accept that there is nothing more that can be done at the moment. If the DHSC working group drew a blank, how can we get more of the right minds thinking about how to solve this problem? In the past I’ve suggest some sort of commission, along the line of the Roger’s commission. I don’t know if that’s feasible. We need more people with the right brains and experience, and without COIs, thinking about how to figure out what’s going on in ME/CFS.

I’d also like to see more collaboration between the charities and clearer division of roles to reduce duplication.

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?

Dr Bansal is retiring this year. I wonder if Sonya might ask if he would interested it helping AfME in any way. There are very few physicians in the UK with more experience of seeing ME/CFS patients.

 

[Adrian]

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.

I've spent a fair bit of time recently talking with Stephen Holgate and he certainly isn't BPS school. He is doing what he can to push messages for more research.