Search results

But surely that's the point. GET suppposedly enabled some people to walk a little further in a 6 minute walk test, but if they crash just as badly the next day, their overall function hasn't improved at all. GET was based on increasing walking in a single short walking task each day. The...

Totally agree with this. Very well put.

Excellent demolition job by Brian Hughes.

I think that's possible by hyperventilating.

Other threads with articles by David Black: Blog series: "Orthodoxy on trial: the pathogenesis of a diagnosis" by David Black David J Black: Is anyone listening? Does anyone care?

Part 1: David J Black: The great health expenditure catastrophe – diagnosing a failed panacea Extract from the article: The crystallisation of Britain’s vendetta against the suffering was the notorious Malingering and Illness Deception conference held at Woodstock, Oxford in 2001. This was...

A very worthwhile project. The stories are clearly told, and the pictures show real situations, not posed models. Well done to all.

My 2 trips to Australia to visit family did nothing for my ME/CFS. In fact I suspect the exertion of the second trip was a contributing factor to the long term worsening that led to ill health retirement.

Fair point. I agree it's possible there's a subgroup.

I doubt that this thing about not catching infections is true. I suspect a lot of it is that we are out and about less. I'm pretty sure, though it's a long time ago, that I got the usual colds etc while I was still teaching and had school aged kids. Since being housebound I'm rarely if ever...

It asked me for email address and password.

If someone says, I rested for x years, then decided one day to test myself and found I could do more, there is no way of knowing whether that decision was influenced by the person's symptoms, even if subtly. So it's quite possible they had just experienced a spontaneous improvement or recovery...

It's horrendous. Such failure to prevent transmission through stubborn refusal by key people to believe that Covid is airborne. So no FFP3 masks for hospital staff, even now and even if the know they are infected, no improvements in hospital ventilation or hepa filtration. And numbers of health...

Me too. No way am I rejoining this shambles.

Ugh, I can't bear to watch it. COFFI seem to be relying heavily on a very small number of people who recovered from Long Covid or ME as their patient advisory group, and they are leading COFFI by the nose into LP la la land. And of course COFFI are willingly following. Funny, not funny, how...

So we have a pattern of BPS supporting articles from Neil Riley disguised as personal anecodotes, going back decades, and now a pattern of disrespectful and insulting responses to criticism. What's not to like! Seriously, how has the MEA kept him on as Chair of Trustees, and from the...

https://bsky.app/profile/mayalindemannrn.bsky.social/post/3lbteqexpfs2n Post on Bluesky: @meassociation.bsky.social epic failure to listen to the community continues. 1k people signed a letter demanding accountability for publishing insulting misinformation editorial from Chair. They call this...

I also think this feature of ME/CFS where people decline after crashes and don't recover to their previous level is really important, and not taken into account enough in descriptions of ME/CFS. Perhaps the only way of finding out is long term large scale longitudinal studies that use...

Hi @Caroline Struthers, I'm starting to prepare for a possible next step in the S4ME campaign, probably a complaint to the Charity Commission on the grounds of harm to vulnerable people, and to Cochrane's reputation, and failure to follow their own rules and promises, or something like that...

Not my experience. I've always pushed to my limits and suffered PEM as a result. The idea that I would stay so much below my limit that I never hit my boundaries, and therefore didn't know my boundaries had changed seems foreign to me. I'm always straining at the leash to do more, and suffering...