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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...

I agree, I really think this is a study that people would be willing to fund, and I think a site in English and a well corordinated international fundraising effort would raise the funds fairly swiftly.

I think they're now planning to do 9000 from DecodeME and then collect 9000 from Long Covid patients. So cost wise probably around the same for sequencing but then you've got to factor in collecting the LC samples...

So thats what I heard, but yesterday(?) someone told me between 8 and 20 million. I don't know which is right, my bad.

This is a very good question and I would very much like to know the answer.

I guess it was probably an arbitrary distinction. But SequenceME is projected to cost between £8 and 20 million, whereas this costs 22 million nok which is around 1.6 million, so a much smaller target.

D.J. Nutt is Professor David Nutt, perhaps someone could contact him and ask about it?

Thanks, I've just donated too. Firefox couldn't translate the page so had to switch to Chrome *shudder*. Could we at S4ME get one going? We are an international forum after all. Of course we would have to be careful not to look like we favour the hypothesis behind dara or that we are promising...