What do people want me to ask Sonya Chowdhury on Friday

Trish said:
I haven't managed to read all the replies to this. I just want to say, I agree it's a big problem.

I'm sure that before my last 10 or so years' experience of learning from discussion with others on forums, I would have been pretty useless as a patient rep advising on resources, even though I'd had ME/CFS for decades.

It's only through prolonged exposure to many people's experiences and in depth discussion of research in a forum environment that I've gradually gained both better understanding and the confidence to speak out.

I don't blame the patient reps in other organisations for their limitations, but I do think it's important for patient organisations to recognise that for many of us it takes time and experience to reach the stage of being able to comment usefully. They need patient reps with not just lived experience but wide relevant knowledge and understanding of the issues.
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I propose S4ME guides & explainers. Insurgent literature.

Based upon work done so far. Extract the knowledge and point of view from already written letters papers and threads.

In cases of criticism of existing material offer relevant party time limited chance to correct.
After no more than three contacts and six weeks without resolution, cease responding directly to individual organisations about cases of unhelpful literature, those producing and endorsing other literature that is inaccurate inadequate or misleading. Move on. Create own leverage. Speak about and not to.

Make own guidance and promote as documents published by S4ME. In plain accessible language.


Note this document is produced in response to; list all relevant NHS pages quality or literature from another party that is of low informational quality and or utilises prejudicial terms phrases or associations.

Note these documents are produced in conjunction with; list any collaboration; from organisations or individuals and with deep appreciation to; any source.

The hope might be that the quality of the literature improved. But if it doesn’t then had been spent time finding collaborators and S4ME might just step back into a corner of research references and other organisations could cover the advocacy and social impact sides.

I think it would only take a handful of smaller documents and a couple of larger ones to make a point.
 
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Lou B Lou said:
I'm so sorry you were put through that @RainbowCloud. The man you spoke with sounds like the Chair of the Sussex and Kent ME/CFS Society, Colin Barton. He was also deeply involved in setting up Sussex 'Fatigue Services', still is involved, and he is involved with BACME.

I had a near identical conversation with him circa 2 decades ago. I badly needed the name of a legal advocate, re medical malpractice and (separate) criminal offenses against me whilst severely sick.

The Sussex Chair's response was "Oh Dear, Oh Dear - are you taking any medication?"

When I told him that I'd been prescribed the SSRI Lustral (Sertraline) despite not having depression, but that I'd stopped it due to horrific side effects - The Sussex Chair replied

"Oh yes, lots of our member take that, they find that helps!"

Helps with what? I needed a legal advocate, not medicating. I left that Society in frustration and despair.




This is Sussex/Kent ME/CFS Society Chair Colin Barton, smearing ME patients in the international media, Reuters 2019, where he also says that 'talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life.'


A REUTERS SPECIAL REPORT
' Online activists are silencing us, scientists say '

'Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.'

https://www.reuters.com/investigates/special-report/science-socialmedia/
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I love that this article feels really dated and old.
 
Sonya and I had an excellent meeting.

We were in agreement on just about everything, even if we are limited in different ways in how we communicate that to everyone else.

We had a useful exchange of information about ongoing events - where one or other of us knew a bit more than the other. I was consistently reassured and encouraged by things Sonya said, some we can discuss here and some (mostly unimportant detail) has to be confidential but will probably emerge in due course.
 
Jonathan Edwards said:
Sonya and I had an excellent meeting.

We were in agreement on just about everything, even if we are limited in different ways in how we communicate that to everyone else.

We had a useful exchange of information about ongoing events - where one or other of us knew a bit more than the other. I was consistently reassured and encouraged by things Sonya said, some we can discuss here and some (mostly unimportant detail) has to be confidential but will probably emerge in due course.
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Thank you for this update, sounds very positive.
 
A lot of my discussion with Sonya was a frank exchange of opinions on how events were unfolding, including some of the personal dynamics, implicitly as part of a private conversation. All I think I should say is that I was reassured that we saw things in very much the same light

What I think I can reasonably say more about is that I was impressed to the extent to which Sonya had her finger on the issue of research strategy. She may not be intimately involved in the scientific methodology, although she is certainly involved in active projects, but she is very focused on the strategic side and made a number of encouraging comments about shifts in the landscape. I agree with her that things finally look as if they might change and I am impressed by her commitment. Moreover, I think that she knows how to back the right horses.
 
Jonathan Edwards said:
A lot of my discussion with Sonya was a frank exchange of opinions on how events were unfolding, including some of the personal dynamics, implicitly as part of a private conversation. All I think I should say is that I was reassured that we saw things in very much the same light

What I think I can reasonably say more about is that I was impressed to the extent to which Sonya had her finger on the issue of research strategy. She may not be intimately involved in the scientific methodology, although she is certainly involved in active projects, but she is very focused on the strategic side and made a number of encouraging comments about shifts in the landscape. I agree with her that things finally look as if they might change and I am impressed by her commitment. Moreover, I think that she knows how to back the right horses.
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Thanks, Jo. That's very encouraging.
 
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