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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?

Any word of a follow up or replication attempt of this study? Or an attempt to find similar in MECFS ?

I hope so too. I also wonder it their methodology/technology would be able to attempt replicate the Mensa/Armstrong/Cambridge CD24/CD38 finding, as that one seems important. Also the Ryback finding, cant remember the name of the molecule - something-30. It would be good if this study was partly...

I sometimes feel this way too. But I don't think it's a good way to look at things really.

Well, that's another point in favour of my theory that my alcoholism was a factor in my developing MECFS. Although I had a clear infectious trigger at least for my definite onset, and my prodromal onset (or whatever) happened during a winter when I was going to a lot of pubs and parties, and...

What situations are those?

That is a huge difference! What could be the reason? Vaccinations, toxin exposure, concussions from explosions/heavy gunfire?

When I have the energy I will try and reply to this in detail.

This is what I was referring to. I wasn't aware of the medical distinction. Agreed, we desperately need better understanding of very severe. Although to be clear about the paralysis episodes, for me these episodes started when still mild but starting to deterioate. My partner is moderate but...

Posts moved from ME/CFS Alliance 20th anniversary event - the Pavilion, Winchester Cathedral 4th March 2026 A lot of people including myself have transient episodes of paralysis. I think it would be misguided to dismiss this as it is a quite commonly reported symptom, even if it is not universal.

I understand your reservations but to me it felt reassuring that Ponting feels that way, as he is generally very measured in what he says, I think in deliberate contrast to other researchers who have promised far too much.

That's really good to hear. Will anything be put up online do you know?