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Thank you that's perfectly clear. I thought I must be getting mixed up somehow! Brain fog and not being a scientist make these conversations tricky to follow sometimes!

So are you saying that there may not be as strong of a relationship between itaconate and type 1 interferon as other studies suggest because they use itaconate derivatives rather than natural itaconate? Could you elaborate on the great potential for connection you see between your work and ME/CFS

On the subject of DecodeME, @Andy @Jonathan Edwards Can you provide any update on when DecodeME is due to publish? Or is it still 'as soon as it's ready and hopefully before August'?

It is really unpleasant. I have gotten used to the more background level stuff, but to have your brain be like 'no, you need to die' and not even be well enough to call a friend is awful. And to know that you are in dire circumstances and your quality of life really is so awful makes it much...

Just anecdotally, I have suffered from suicidal ideation since my late teens. It became much worse when I got ME, has become even worse as my severity level has increased, and becomes very intense when I crash. I'm not sharing for sympathy but because it often feels like a consequence of...

Yes I completely get what you're saying. It's very interesting the similarities and differences in experience. FWIW I have a lot of autistic traits more commonly seen in women, which may have contributed both to my experiences and late diagnosis. Unfortunately I was diagnosed shortly after...

With respect, and not to minimise your experience at all, but I had very similar experiences of constant conditioning to perform 'masculinity' I was growing up (autistic man diagnosed late in life) with devastating consequences in terms of my mental health. Autistic men like myself often become...

That's entirely understandable. I wasn't expecting a phase 3 but this does look like a rehash of the pilot to me, rather than a step up.

I suppose so. I just want this drug tested thoroughly and as fast in terms of potentially getting it out to patients (if it works) as reasonably possible.

No mention of blinding or placebo, and only ten pateints again? Disappointing imo.

Yep also same!

The efgartigimod trial had a symptom questionnaire as an outcome (compass?) that many POTS patients say is not a good measurement for the condition. People reportedly had huge reductions in HR and symptoms during tilts, massively reduced PEM and increased step count. None of this was taken into...

Does Daratumumab also affect T cells etc? Or if that has a positive effect can we narrow down what is potentially being affected?

If IgG only lasts 100 days, how would lowering it cause the sort of long term remissions that were reported in the cyclo trial? Hypothetically speaking.

Efgartigimod also lowers IgG I believe...

I am really interested in whether the efgartigimod trials failed because they used a very restrictive POTS measurement. A lot of participants reported a benefit to PEM and POTS afterwards and were trying to get the raw data. BC007 i am more skeptical about because of the insane hype, but there...

If the science does not 'come through' for us, what do we have really? Mild people might have a positive response to mestinon or ldn and go back to work with adjustments. The odd moderate or severe person might get better, mild again even with lda but does it last? We don't have anything...

This conference should have a keynote speech on what went on with PACE. Perhaps in five or ten years conferences like this will do.

As someone who Is diagnosed with generalized anxiety disorder, I can see both sides of this argument. I was diagnosed by a gp age 19 because I reported insomnia, unexplained physical symptoms, what I now understand to be DPDR And depression. My entire life people have been telling me that I'm...

I think a lot of this is down to funding. If there were similar funding to other conditions, people would be much less opposed to semi random drug trials. In many ways I think this conversation is premature. If DecodeME and SequenceME point to something specific, trialing drugs that affect...