Search results

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!

As someone with quite severe cognitive PEM, the thing that most reliably triggers it is keeping track of mutiple variables at once. So for example, editing a short story or essay, tracking all the grammar, punctiation issues, things that need rephrasing, sentences that should go in another...

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...

Oh and very impressed that the samples were from severe patients, very sensible!

Also I just want to say that to my layman's eye this 3d muscle stuff looks very impressive. If as @wigglethemouse quotes Morten here, the follow up needs a large grant, is there any way we can aid them in this funding process? Would be interested to hear any criticism of the study/methods. I...

To clarify I was referring to this post, in which Murph had been in contact with the author by email

Had this feeling last night and this morning, first time in a couple months. Absolutely unbearable.

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...