Search results

The whole programme is about children being pressured into psychological therapies. Sure, the BPS got a bit more organised after this, and became more prominent, but the philosophy behind how patients were treated was much the same in the late 90s as it was in the 2000s and 2010s, and in some...

Yes, I did consider this, but ultimately I want the story to be on ME because it really hasn't been told on primetime TV. The roll-out of the new NICE guideline links with long covid because many are being referred to ME clinics (and finding that they really have nothing to offer).

Yes, this is the only other Panorama on ME, I believe. It's a good doc. I uploaded it here:

I generally like Panorama, and I thought the recent doc on anti-depressant withdrawal was quite good. It had similar themes as what I'm proposing. However, this could be directed to Dispatches if people thought that was a better/less risky option.

Thanks Jonathan. You've picked up on a few things that I've edited out and changed, so perhaps I need to edit them back in!

Thanks for your comments. Will definitely use this thread to discuss any potential concerns.

Text: For several decades, the views and research of small but powerful group of British psychologists and psychiatrists have determined the medical care and treatment of the estimated 250,000 people in the UK living with the life-changing illness myalgic encephalomyelitis / chronic fatigue...

As noted in some discussions on the forum, many of us feel that a Panorama-style programme on the PACE trial and the wider story of ME/CFS is much warranted and overdue. There are people on Twitter who feel the same. I have decided that it would be good to contact Panorama (and potientially...

I used to get quite bad hives after exercise (or showering after exercise), usually on my legs near the bottom of my shorts. Always thought it was heat related, and hadn't made this link before.

I would not like to do data analysis of those reddit subforums. /cfs is a bit of a mess.

I finally had an email response from the authors (after an email to the editor). Your comments on our study were sent to us by the editor of CID. We apologize for not responding directly to your mail. Your email ended in our spam box and was missed by us. Below we respond to the 4 remarks. We...

Can you expand on this? What symptoms specifically, and how does it help? I was prescribed this early in my illness but never took it.

Apparently, nearly 50-year-old Robbie Williams' breather between songs on a German date during his world tour is PEM! (He went from the Netherlands to the Isle of Wight the following day and played 'one of the gigs of his life' that evening). EDIT: Perhaps my post isn't clear. This isn't PEM...

Yeah this is a terrible question, and a complete waste of time.

The corrected proof has been uploaded. Note this is basically just a journal typeset of the paper—there's no actual corrections as far as I can tell.

I think this is the way forward. Focus on ME. It will limit the scope and make the proposal more targetted, but the method/results could be generalised and applied to other illnesses.

Obviously, this is an NIHR proposal and there's no NIHR highlight notice for ME/CFS, but I am aware of projects where part of the funding comes indirectly from other sources (i.e., a mix of MRC and NIHR). Have you seen this...

I think that's probably worthwhile. My question is how much is your proposal specific to ME/CFS? It seems the overall concept of the research is more general, but you would use ME/CFS as a sort of case study?

Personally, I don't think we should be using unproven hypotheses to explain illnesses to patients. We had this with the dysregulation model stuff for ME/CFS back in late 2021. I happen to think it matters whether the explaination is true (or not)!

Honestly, I hate all this stuff. We don't even understand the basics of fatigue or brain fog and we're playing around with neurofeedback devices and AI. This just feels like researchers playing with toys of their choice. Also, the way this project is framed makes me think that this is motivated...