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The Decode ME project has a huge amount of patient trust, to the extent that I answered fully about my mental health history in the questionnaire, even in the wake of the NIH paper. Thank you for communicating so clearly about this delay and the reasons for it. I hope that preliminary results...

I am trapped on pregablin (75mg X2 daily) after five years. I went on it for 'anxiety' (actually ME related symptoms) and planned to be on it for a year. This was 2019. Then covid hit and my ME got much worse and I don't dare try to come off. My partner is also on it and she had a horrible time...

I will say it again: there needs to be a fresh push to expose these people for what they are, a group effort of advocacy showing what these people say and what it has led to. The post office scandal would not have been exposed if they simply tried to ignore the companies who were guilty of...

As a good literature student I knew my Freud and trauma theory, and was well informed on mental health issues due to suffering and having friends who suffered. Unfortunately this was a major factor in accepting a psychological explanation for my illness.

It's strange watching this unfold in the UK, where for like 1-2 years there has been no guidance apart from don't mention covid it's over lalalalalalaa. I basically stopped attending medical appointments when people stopped masking.

I mean when I had depression and not ME (as far as I know, it's all a bit up in the air looking back) I felt miserable when I was out in the world. When I tried to do things that used to cause me joy or excitement I often felt nothing. So I see your point but I don't think you understand...

Is there any mention of the drugs that they have said might benefit studying? I seem to recall they said they had candidates.

From the NIH press release “We think that the immune activation is affecting the brain in various ways, causing biochemical changes and downstream effects like motor, autonomic, and cardiorespiratory dysfunction,” said Avindra Nath, M.D., clinical director at NINDS and senior author of the...

Surely the recent Wust paper in long covid did find mitochondrial dysfunction and cell necrosis in people with ME type long covid post exercise (we can debate til the cows come home over whether this counts as PEM) and they have a paper on the way in pwME. If those findings are borne out in the...

Well, that seems pretty disappointing, as expected. I can't believe Nath talked this paper up this much. And I can't believe it took so many years to write up something so utterly vague. As someone with a history of head injuries I find the conclusions worrying. It seems like if their theory...

Precisely why we as a community cannot simply ignore him and the other bps researchers. He and the others have too much of an influence on everything. They campaign to thwart progress behind the scenes (remember ranty person on the nice guidelines). Perhaps an open letter listing all of the...

I see that. But what is the solution? Be silent and allow them to slander us in perpetuity incase we are misrepresented? This is the person who has destroyed so many lives. We just let him retire with every honour the state can throw at him without even trying to get justice or our voices heard...

I suppose the question is, what can we do in an organised, coordinated manner to get the message out about him? It would double as a campaign to get the message out about ME ofc.

They are his theories because he has embraced modernised Victorian prejudice and made it palatable to liberal modern sensibility, and he has spread them far and wide and profited from them. Yes the insurance industry is sort of behind all this, yes Sharpe and White deserve a lot of blame too...

https://www.cell.com/med/fulltext/S2666-6340(24)00041-2 A study at Cardiff university with similar findings (apparently not identical but my brain fog is terrible right now)

This man's theories literally stole my life from me, and the lives of so many others. I was a writer before this and am now too sick to write anything about it. But if I had not been convinced to keep pushing after I worsened from mild I might have been able to be vocally critical of Wessley etc...

Yes it seems a very odd principle to stick to when so much is at stake imo. Like an honourable thing generally but in this situation incredibly frustrating. But I'm glad this UK study is going ahead and heartened they have already replicated the US results.

If Decode ME has a postive result, should we anticipate the Ponting decode long covid study being revived? Or a similar project

'We didn't look very hard for anything therefore there's nothing there, don't ask us to look harder just think better thoughts and get off the couch' I actually skimned most of this article before realising it was BPS. The dawning realisation was quite unpleasant. What is terrifying is how...

Encouraging, and something that definitely needed to be trialed but no control group and an 18month to two year study time is deeply frustrating, even with positive results there will need to be more studies and more studies before patients have any chance of getting their hands on the drug...