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I am glad they aren't spending more money on it. It's dangerous. Do we really want more PACE studies, forever?

I have not signed it. The quality of research for Long Covid currently is pretty poor, lots of BPS influence and themes. We don't want more of that; none is better! The "recognition" given to Long Covid (in the UK) is currently to fund the same kind of flawed research that has been seen not to...

Reads to me like these categories are supposed to be something akin to (possibly competing) interest groups to give the impression of a "plurality of voices" being represented (to use a phrase I believe OFCOM uses), whereas while politically plausible, is not what is required for a...

I am very glad that there will be some representation of severe ME. However I am concerned that this is being put together in the manner of a bunch of consumer interest groups coming together in a public relations exercise. It is not about science. I am glad there is inclusion of so-called...

I am wondering whether she has blocked anyone else in the replies for example, which aren't too keen on the piece - if she has, perhaps this could be mentioned - would not be the first person to be blocking ME/CFS patients and advocates on twitter

Is there any effort to stop people from using the term "chronic fatigue"? It's one of the most difficult things I encounter in actual medical appointments, with illness constantly dismissively referred to as "your chronic fatigue", as though it's some imaginary pet.

Dismaying that most people just seem to not care about this kind of consideration and are being encouraged to believe that people are all lying or conspiracy theorists

The idea of a VR head set is a total no go area for me! Yikes!

Needs to be a change in leadership at BMJ at many levels of the organization. I hope more and more people come to this view.

LOL Thank-you for this comment; cheered me up :heart:

I don't know if anyone here knows Joseph Arthur's music, but he has been posting a lot of anti vaccination content and conspiracy theories both on his Insta and on Twitter. Only seems to be intensifying. Having previously liked some of his music, it was strange to watch and interesting to watch...

Yes, I was also concerned about Dr Shepherd's reference to "changes" in the draft - although I doubt it is anything major, I was concerned about weakening of the language that would constitute loopholes. There is already far too much reference to physical activity in the draft and I can see how...

Shudder. The mindset. Very revealing. From what I gather, this is not a very helpful organization in the first place so I am hoping it does not make too much difference.

Does anyone know if these appointments usually last several years? This seems like dire news to me with ME/CFS guideline and long covid situation as well.

Thank-you for the link to the full text. I have read it. I am very sad reading that from 2007. Conversation is the same; there has been so little progress it seems. Hard to read. 2008 was when I became severely ill. How many of us could have been helped?

Perhaps we will be hearing a lot more from them in the upcoming weeks, in that case?

I am really angry that the BMJ has consistently taken this line, and so aggressively. Regardless of outcome, this kind of thing just (intentionally) sows confusion and makes it more difficult for patients and healthcare providers alike. Irresponsible, unethical, petulant behaviour.

Does anyone have any idea what is within the reasonable scope of possibilities for negative changes to the draft? On a personal note, as a person living with this illness, I often really cannot believe that people are spending their time trying to ensure harmful interventions are imposed on...

This sounds like a great way forward (time and energy permitting); in relation to these documents mentioned, I had wondered whether anyone at AfME is actually aware of these concerns/criticisms as I am unaware of who drafted materials, etc, and for what purpose (are they patients?). This is a...

If documents harm patients they should be withdrawn. If organisations fail to do that they are part of the problem. I am in agreement with this quote; where is the value in trying to pretend that the nature of this illness is different than what it really is? Does more harm and no good; I would...