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Well, these psychologists need to get their game together then i.e. if the illness is psychological and their "treatment" works then most people would be able to return to a normal life! I think @Hutan has highlighted that given these are unblinded trials, with subjective outcomes, the reported...

Paul Garner "The Faith Healer"? https://en.wikipedia.org/wiki/Faith_Healer

I had a brief look at the debate on treatments for cystic fibrosis and there e.g. some people, from UK, went to Argentina to buy the generic product (£25K/year) since the NHS refused to pay £100K for the patented product. The company, which owns the patent, didn't/couldn't patent in Argentina...

Apologies, trying to get my head around this. So "rituximab induces an overall depletion of CD19+" i.e. short lived plasma cells since these express CD19+; similarly CAR-T therapy depletes CD19+ cells. However, long lived plasma cells are CD19- so unaffected by rituximab & CAR-T therapy. So...

Are "PD-1 blockade drugs" linked to this paper - "Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome"? https://pubmed.ncbi.nlm.nih.gov/28018972/

Entertaining listen. Professor Sir Harry Bhadeshia is now an established scientist; however, his discoveries didn't go down well with the establishment. He discusses the shenanigans lightly --- without any bitterness - "scientists are human beings". Reminds me of Jonathan Edwards's insights &...

Seems links, to the recordings, are being made available here i.e. as they are uploaded to YouTube* Nervous System - Immune System - Metabolism & Genetics -- uploaded so far. *https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/

I recall Jonathan welcoming the study on fatigue at Aberdeen University*. Given the percentage of people who have a smart phone, presumably it should be possible to monitor the activity levels of a representative sample of people with a long covid diagnosis and thereby estimate the prevalence...

Nailed it, problem is that post rituximab there's no good evidence supporting autoantibodies -- is there another sort of "autoimmunity"?

The science underlying this is way beyond my very limited knowledge - so I'm probably missing the point --- Vicky Whittemore, in the NIH genetics webinar, and the rest of the panel, seemed to be very positive re the need to do a large GWAS [including sequence mtDNA (to find rare variants?)]...

CORRECTION - mt DNA loci are contained in the DecodeME study. The limitation is that it is all common variants. So (future) US study could look for rare variants. Interesting Q&A at the end of this section [Genetic correlations with ME/CFS Results]. Seems mitochondrial [EDIT - rare variants]...

ME/CFS Genetics/Genomics Webinar presentation. Slide titled - "Genetic correlations with ME/CFS Results"* Diseases listed include: objectively diagnosed (?) diseases - "Raynaud" & "Sjögren" & "Asthma"(objective?) - makes me wonder if the ME/CFS symptoms could be due to those? (presumably)...

Liked the fact that Chris Ponting made the case for US (NIH) running a large ME/CFS GWAS study - 50K participants. Recommendations, re research NIH should fund, will be submitted next May (2024) - hopefully this will be funded. 1 hour 11 minutes from the start of the ME/CFS Genetics/Genomics...

So "Serum levels of neurofilament light chain" is a biomarker for MS but not a diagnostic test?

I seem to recall that the groundbreaking (recent) paper linking MS with EBV was based on an MS (blood) biomarker. That (biomarker) makes me wonder why it appears that MS diagnosis is so problematic. But yes, you'd like to think they screened out MS.

Aaron Ring (Yale University) autoantibody/antigen work he's using genetically modified fungi to produce target protein - but not sure even that has really worked i.e. to identifying autoantibodies. Possibly Aaron's approach is better than peptides though. Aaron's looked at ME (Nath) and I think...

Think (disrupted) sphingolipids turned up in a (metabolite) study in ME/CFS a few years ago, can't recall the researcher (Jonas Bergquist?) but a search on this site would probably turn it up.

Yea, as per the above comments, it annoys me, when I read claims re MCAS on Twitter etc, since we need to focus on asking for research that could actually help e.g. for genetic studies like: DecodeME; & studies aimed at finding rare variants i.e. which identify genes & pathways to focus...

Just wondering if looking for rare cases like this* could be a way to identify the disease mechanism for large(r) groups of people with ME/CFS? *"increase the expression of AKR1C2 while limiting AKR1C1 activity, resulting in a relative increase of inhibitory neurosteroids and impaired...

Seems strange to reply to your own post --- Noticed this in the summary [see link to Facebook post with summary of EMA meeting] - "Director General Sandra Gallina from the European Commission, on the other hand, seemed to be the only one at the meeting that thought "more insights into pathology...