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In Germany there was also a football team whose fans showed pro MECFS advocacy messages during games. Something like this would boost visibility and public awareness.

I was supposed to have an EMG three years ago but never got it. Partly due to the prospect of travelling half an hour to be repeatedly shocked so that the data could be sent to a neurologist who looked at me like something nasty in a petri dish and clearly thought I was insane. Every time I...

I wonder if there is an equivalent of Germanys campaign with the empty beds outside government buildings...maybe just stealing that? Or a campaign highlighting the behaviour of the psychobehavioural school, the illogical arguments they use and the harms they have caused. I think we need a...

It's been five f-king years since RECOVER was announced! Five years. And they are giving themselves a congratulatory pat on the back for their trial design having achieved absolutely sweet f-a. They have squandered a billion and a half dollars on treatments that were almost certain to fail and...

'No not that one, maybe try over there' *gestures indecipherably towards a different part of the shore*

Whereas I am standing on the cliff up above yelling 'maybe look over there! Or over there!' to nobody in particular whilst gesticulating wildly at various stretches of beach.

Fair enough - do you mean like information to offer in return that they might find interesting? Do you think it might be more timely now?

Did you end up contacting these researchers @Jonathan Edwards?

As far as I know, Wirth has no findings, only theories, because he has done no research himself. I know the work of this group has been called into question a few times though.

A two for one on BPS stalwarts on S4ME today! Sharpe and Chalder, my least favourite double act since Horne and Corden.

TC throwing healthcare workers during pandemics under the same bus she happily threw us all under. I will never forget the video of her laughing and telling a physio whose patient reported being in bed for weeks after GET 'that must be a really health anxious patient'. I suppose these are just...

Is there any connection between this gene and MECFS? Any studies that mention it? A quick search threw up these posts:

I've been thinking about this because this is exactly what happened during my prodromal onset - everything has felt 'different' ever since, even during periods where I felt better overall there have been weird quirks of sensory input that I have had to ignore. After my definite onset and...

Good to hear! Is the timeframe for the HLA analysis similar?

I wondered this back when RECOVER first announced they were funding it and it would therefore be expanded. Obviously it is a double blinded trial so you would hope they cant tell but I have heard one person who claimed to be a participant state that one of the doctors told them they were seeing...

For whatever its worth, my family home is right next to a farmers field where they grow crops. And of course they spray the fields with pesticides in the summer. And both me and a neighbour across the street have MECFS. Maybe completely coincidental.

Do sarin and organophosphates share any chemical components?

This is bullshit. It's apparantly too expensive to help people with level 1 autism so we just get thrown under the bus. They trot out an 'expert' like this to say we're just people who struggle with life and want a diagnosis to make us feel better about it. Doesn't that sound familiar? I wasn't...

I've heard a lot of dodgy stories about the situation with MAID in Canada. People being offered it inappropriately to save the state money and stuff.

Has there been any news of follow up/replication work on this?