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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...

I think the difference is in our perception of how likely basic science is to produce a result. Surely we feel that good science done methodically is likely to produce a result that will lead to treatment. Whereas trying random drugs is much less likely to. Otherwise why are we all here?

From reading a lot of the patient stories and hearing what the researchers say it seems like some people benefit a lot but most don't respond or not much. So it could be that when the full study is published we see big responders and non responders averaging out here. Or it could just be placebo.

Posted at the same time! I caught the 3d muscle seminar, inadequate summary above.

Watched the 3D muscle presentation. To my layman's ear it all sounded absolutely facinating. They seemed to have found loads of significant differences in how the muscle responds to ME and LC serum compared to controls, and also in gene expression. Obviously I'm not a scientist but I think this...

The only genetics paper i remember is the SIPS one from a very small number of patients. No capacity to hunt it down now apologies.

That seems like a worthwhile project in terms of replication. Beyond frustrating that funding has been pulled. I hope that the government sees sense but not holding my breath. Perhaps there are alternative funding sources that could be explored, as discussed in the SequenceME thread?

Can you say whether the planned GWAS collaboration with Lipkin/Columbia was going to be in ME or LC?