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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letter in which we presented the petition and explained why the 2019 review, Exercise therapy for CFS, should be withdrawn on the grounds of harms.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.

I imagine a much more subdued scene, with reassurances among Trustees that this social media froth will soon blow over, and staff keeping their mouths firmly shut and their heads down while feeling very uncomfortable. I'm guessing the trustees haven't even discussed it yet. The rest of the...

It's interesting, I think, that back in 2019 Riley got away with saying similar things in an article. We protested in forum discussion, but Riley was unrepentant, and clearly learned nothing from what our members explained. Now there are a letter with 1000 signatures, and 3 organisations that...

I'm with you on this, @Yann04. I don't think I feel sicker in terms of severity of symptoms now that I'm housebound and spend a large proportion of my day lying down, compared to when mild and able to work part time. The big difference is in how much activity I can do without triggering PEM. For...

There is further discussion of UK ME organisations on this members only thread.

Further discussion on this trial here: Bias due to a lack of blinding: a discussion