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I get this too when I'm really crashed and it's horrible. Sorry to hear this, and I hope it passes soon.

If Daratumumab does work for ME/CFS, could either of these be the mechanism it is affecting, rather than LLPCs?

I also discovered that regulatory T cells express FOXP3 (which has been associated with ME iirc) and need TGF beta to differentiate (develop) from naive CD4+ cells. TGF beta has been flagged once or twice as elevated in ME iirc (I know it was mentioned in JE's hypothesis)

I have just discovered that gamma delta t cells, which these genes are linked to, and one of the alleles in the new Fluge and Mella et al genetic paper is also linked to, are most prominent in gut mucosa. Could this be something to do with the awful gut symptoms many experience, especially at...

Interesting - more of which type of studies specifically? Yes I just realised γδ is gamma delta! The plot thickens!

I edited my comment before seeing your reply because I saw you edit of the comment above mine haha. Thanks for the info!

Yes that's what I was thinking of I believe! Shame it will take 2 years though... if it succeeds it will perhaps be available around the same time as the dara phase 2 results for ME if all goes well on the funding front.

Ah I was under the impression from previous discussions it was all forms of it, thanks for correcting.

@Jonathan Edwards is this one of the genetic studies you had advance sight of?

Right now we have absolutely no reliable evidence that Daratumumab works, and the drug is very expensive. If the price drops next year after the patent expires, and the phase 2 is positive with similar remission level improvements, then you might see a good deal more people trying to get it off...

Thanks for your response, that all sounds intriguing. Filling holes in our fundamental knowledge is really vital. I hope your project related to the DecodeME gene is able to go ahead, it sounds like a worthwhile endeavour.

Pretty much the first noticeable thing that went wrong for me during what I suspect was a prodomal onset was my circadian rhythmn being thrown completely out of whack, with both insomnia and hypersomnia, for what it's worth.

Thanks for your reply. It's interesting that you think that some central elements of the hypothesis are somewhat strengthened by DecodeME. I am waiting for the HLA element of DecodeME with interest. I don't know if you saw Chris Ponting's reply to me in the DecodeME thread a week or two ago...

@DMissa can you give any update on the potential projects mentioned in this post? Would be very interested to hear whats occuring on that front.

I agree, the Justice for ME campaign shows just how quickly funds could be raised with effective international marketing. I think it is really important that we reach out to the organisers and attempt to persuade them of this. My energy is limited but I would be happy to help draft an English...

If @jnmaciuch is right that type 1 interferons are a driver of symptoms ME/CFS, couldn't using this spray daily make pwME feel worse?

Hi, @Jonathan Edwards I am curious how well you think your hypothesis stands up post DecodeME? Are there any parts you think the results support, or any you think they refute to some degree? And I'm also just wondering your thoughts about it generally a few months on from publication.

This started happening when my ME went from mild to moderate, and is really bad now I'm severe. I had two MRIs (brain and spine) a year or so later to rule out MS. But it could be something else that's been missed of course.

I didn't have noticeable PEM/flueyness but I did feel quite queasy a lot of the time, feeling faint, lots of random aches and pains. But as I said I'm not sure I had 'pure' depression so I'm probably not the best example.

This. Precisely this. Even if we never get justice for what has been done to us, I hope one day we get to a point where our resilliance is at least acknowledged. Is this true? I am genuinely asking, I began to feel unwell at the same time as getting depression and was told it was very common...