What do people want me to ask Sonya Chowdhury on Friday

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.

 

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.

 

Thank you for this update, sounds very positive.

 

Thank you @Jonathan Edwards and Sonya

 

Thanks for doing this, @Jonathan Edwards , and for asking for opinions and ideas beforehand. Great to have patients represented in this way.

 

Thank you @Jonathan Edwards, your clear thinking and scientific rigour are an important contribution to ME/CFS advocacy, as well as your commitment to discussing through disagreements.

 

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.

 

Thank you @Jonathan Edwards & Sonya! That all sounds hopeful and positive especially that you both think that things "look as if they might change"

 

Curious. I was not aware of this, I thought it was just me. Can you point me in the direct of more information on this at all please? Thanks

 

There’s some more info in this thread.