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@mango Can you start a new organisation with people who have a more appropriate view of ME?

Well that shows me the TOP site but where did you find it at the CDC? Is it obviously accessible or did she go digging? It may be that the CDC need to be made aware. ETA: She is being disingenuous if it is not actually the CDC

Nina Andresen in one of her comments states: If facts are important for Olafsen, then I can state that the CDC (the health authorities in the US) still recommends both CBT (cognitive behavioral therapy) and GET (graded exercise therapy), as this is recommended in the treatment guide for health...

I think with stories as opposed to reading research articles there is the issue of the photograph vs the movie. The author wrote this at a specific time in his life and those were his thoughts of the moment. I agree with two points. He has every right to tell his story from his POV like...

I think there is something to consider in here. When there is a good and proper service it would be a good idea to spend some of the time in mentoring someone and nurturing the people around the decision making so as to have continuity in understanding and care when one inevitably leaves. I...

I think this is hard to gauge from past efforts. In the past it was more individual efforts and no one was been heard very well. That goes for either Tom Kindlon and his style or more strident actions of others. 20 years ago no-one gained any traction. I think the difference now is the...

Yes, thanks. I wouldn't have thought of it without the mention but it shows there are many unexploited niches where good ME information can flow.

I think that @Inara has hit on a good point. I hadn't thought about it that way before but if we are quiet or only play nice/by the rules others have laid down then we are abdicating the right to speak plainly and clearly as to the real harm being done. We are in a sense doing the whitewashing...

Was curious about the answer to @Barry 's comment about EMS workers education. So I went looking. There's a journal for everything I guess. Here's where to find where EMS professionals go for info: https://www.paramedicpractice.com/education

This might make a good study. Asking for input from allied health professionals (with no personal or professional contact with PwME) on their views of what ME/cfs is. Sorry this is once again a tangential remark.

And a question I wish I had the answer to is: The people of ACT UP did naughty things to get the message out there. They misbehaved. My question is how did these acts get framed in the press at the time? And did it have any negative impact or if mixed did it tilt toward a more positive result?

I'm inclined to think that the most impactful statistic would be a comparison of Quality of Life to other illnesses.

I'm uncertain here but I think it might be useful for those who write on the subject to highlight the lip-service only aspect of the physical and social issues of why people are ill -- the other 2/3rds of the BPS. How is it that only the psychological gets funding for research and why is only...

If only that were true. Then everyone would see through them. But we live in the age of goopism. Science is meaningless, sales pitch is what matters. Wyller knows his audience. It's getting really hard to tell fact from fiction and no-one is going to fact check--that's why they can...

And calling it out is the only way to expose it and allow people the chance to educate themselves on yet another fake news item. They will use these tools regardless of whether we do or do not say anything. Saying nothing is to their advantage.

I appreciated the metaphor of IAPT as a metastising cancer. Spot on as metaphors go.

Apologies for my confusion. With regard to SM's mistakes I'm not going to go there. Anyone is free to believe whatever she says regarding ME or not.

There are a number of articles in the science library on PACE. And much of David Tuller's work on the Virology blog is about the problems with PACE. https://www.s4me.info/threads/articles-that-are-critical-of-cbt-get.63/ http://www.virology.ws/mecfs/ ETA: also the general PACE thread would...

According to the NICE meeting minutes Theo Anbu is one and Michael Beadsworth also. Don't know who else.

Sadly, I think this cannot be sorted until there is better characterisation of what exactly depression is. There are ubiquitous links on the web to find how various organisations define it but it still seems very vague. The questionnaires I've read about actually seem to make it less clear...