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Has someone got a screenshot of Neil's comment?

Yes, I think parts of Unrest are certainly dramatized. In fact Jen Brea in my opinion does not look like a typical ME/CFS patient. The fits and collapses are not representative of my experience. I suppose we only saw the 'highlights' (or 'lowlights' perhaps). Most of us are much more boring than...

I feel like this could work / be helpful, but only if the HCPs were in that role-play scenario for a whole day or even several days — not just a few minutes like if you wanted to simulate blindness.

This is what I thought at first, but now I think it's probably more along the lines of what @Jonathan Edwards is suggesting.

Well, it would be the actors in (2).

This just isn't clear enough. There's already confusion here. Are they (1) simulating dealing with a patient with severe ME (from the viewpoint of HCPs), or (2) simulating what it is like to be a patient with severe ME from the viewpoint of the patient? I am assuming (1) because (2) doesn't...

There's certainly an issue with patients blindly supporting studies from clinicians and researchers they see as allies (and, conversely, rubbishing all research they don't agree with, e.g., from known BPS types). Luckily there is on this forum a healthy scepticism for any and all research coming...

Here is a link to the 'campaign': https://meassociation.org.uk/campaigns/seeds-of-hope/

My browser blocks embedded X links, so I thought @Amw66's post was the original ME Association tweet. Here is the original tweet (which seems to have been deleted):

I'm glad numerous people on X have called this out. There really is a widening gulf between AfME and MEA these days.

Also a favourite of RecoveryGrift™ YouTubers

Possibly. I suppose I'll have to wait and find out.

I donated via text but it's not on my mobile plan bill. Has anyone any idea why? I expected it to be added.

I am in full agreement. It's not a way to do science. The LC world is now no less polarized than the ME/CFS world.

From the paper. Very poor going on multiple counts (REF).

You answered the question yourself. The majority of authors are active on X and are seen as 'patient friendly,' because they are not BPS or BPS-adjacent. That is what they have in common.

I thought it was ok, but not hard-hitting enough. Indeed, there was no explicit mention of PEM, just something about 'after activity', which I can't remember now. Nothing on the dire research funding situation. I don't expect the 'politics of ME' to be brought up on a 10-minute segment like...

https://www.bbc.co.uk/appeal/lifeline The segment is due to air today on BBC One at 14.50: https://www.bbc.co.uk/programmes/m002vqbh

Pain is not one of my major symptoms, but the only thing that really helps my muscles feel a tad better is a hot bath (if able). I guess it depends what sort of pain you get. I get a lot of fascial pain, and that sort of lactic acid burn/pain in muscles from doing too much / overwork (which...

Ok. That seems like a big assumption to me.