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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...

Well done, @Wyva. A thorough debunking of the article.

:hug:

I am trying to imagine a better spin on what is happening. Maybe the trustees are having emergency meetings to resolve the situation, including asking Neil Riley to step down with immediate effect. Maybe the trustees are asking Riley to apologise properly, including explaining why his article...

On the MEA Ramsay Research Fund, there's a post on Facebook today from Charles Shepherd: https://www.facebook.com/meassociation/?locale=en_GB The mention of a large and expensive clinical trial of a drug yet to be revealed is interesting. (I hope it's not LDN again. I think there are already...

She's friends with Wessely/Gerada. I think the only way some of that clique can hold on to their beliefs about ME/CFS is by demonising pwME. Some of their NHS colleagues now have LC, and I think Gerada even set up a support group for them, so it must be a hard disconnect to hold on to.

Probably ME research UK, or directly to either the UK ME/CFS biobank or Chris Ponting's team.

Couldn't the cause-effect be the other way around? In a fluctuating inflammatory condition, reduction in inflammation and the consequent reduction in symptoms leading to upturn in mood?

Thank you so much for all this effort, @forestglip. There was no way I was going to manage to watch these, and your summaries are great. I also like that you added a quick summary for each.

Week beginning 15th April 2024 Cochrane have sent a brief response to the latest Science for ME committee letter in which we presented the petition and explained why the 2019 review, Exercise therapy for CFS, should be withdrawn on the grounds of harms. "We will include the additional points...

Maybe muddling up different things here. From a pwME's perspective, of course symptoms are central to our experience, but it is the pattern of how exertion affects the severity of symptoms and consequent ability to function that matters in terms of impact on our lives. So assessing severity of...

All this shows is that depression questionnaires are not suitable for people with physically and cognitively debilitating conditions like ME and Long Covid.

I think the delay is standard for theses, so they can get papers published in the meantime without the big reveal coming from the thesis. In these days of preprints and supposedly open science it seems counterproductive.

I had my flu and Covid vaccines a couple of weeks ago. I am on my GP's list for elderly housebound home vaccinations. I managed to get my daughter on the list for the first couple of years of the pandemic, but if she wants it now we'll have to start the fight for it all over again. It's so...

It's difficult for those of us who stopped being MEA members a few years ago. I don't have voting rights or any right to have a say in what the MEA does. Yet what they do affects us all.

I hope you recover quickly, @AliceLily.