What do people want me to ask Sonya Chowdhury on Friday

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.

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).

 

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.

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

This

 

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

 

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

 

Similar.

 

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.

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.