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I agree with what you've written & thank you for doing that. Sometimes there's nothing that can (currently) be done & the Doctors job is just to say that -- not come off with some misleading crap. Oh & Doctors should point patients to this type of forum - I was tempted to say this forum may not...

I'm be interested in reading this - access?

If rituximab kills all antibody producing B-cells then, if the "'messy' antibodies" are solely produced by B-cells, rituximab should work? Suppose the another option is plasma cells i.e. producing antibodies? Is the regulatory mechanism (for checking antibodies) is common to both B-cells &...

Very interesting thanks - I wonder whether GWAS [common variant genetic study - DecodeME], or indeed a rare variant genetic study*, would provide an independent route to test this e.g. certain genes increasing severity --- likelihood of this outcome & if so then what genes? *NIH - a rare...

Thanks - interesting insight. @ME/CFS Skeptic

Karl Morten attempted (crowdfund) to raise money to fund ME/CFS research but didn't succeed.

Evidently "one of them" was DecodeME - I'm wondering what the other was?

Akiko Iwasaki is at Yale & Yale researchers have been working on a technique to identify autoantibodies*. However, I do still wonder if this is a reliable technique - you'd like to think that the proposed +ve result [autoantibodies] has been tested using a number of techniques...

Surely if you go a Doctor & they cannot explain your symptoms then one explanation is -- well the Doctor is poor? If the Doctor asks colleagues maybe the % decreases --- apart from identifying gaps in medical knowledge I don't think this tells us much. Yes, I can imagine Paul Garner might...

I recall that @Jonathan Edwards wrote that the MRC group (he was part of) proposed funding a GWAS [common variant] genetic study [DecodeME] - the only other promising area was a sleep study - actimetry? I'm also interested in sleep since my family member has poor sleep quality; therefore I...

The only time I attended Nath & Vicky Whittemore were both there --- mingling after their talks. Vicky highlighted that: a rare disease she was responsible for had just had a breakthrough - causative gene identified and thus drug development could begin; and the underlying cause of ME/CFS...

I wonder if Nath is/was hen pecked i.e. by Walitt? Either way, Nath should have held the line that the evidence wasn't there to support the claims made in the paper!

I rather like your (SNT Gatchaman) post (from memory) i.e. "Doctors need to demand diagnostic tests ---". I'd tweak that slightly i.e. "we need to co-operate with Doctors and vice versa --- to deliver diagnostic tests (biomarkers) ---". @Jonathan Edwards is a brilliant example of what we...

I recall Angela Vincent saying that 10+ years ago. Yes, I'm a bit worried the Decode ME data may be too heterogeneous i.e. a number of diseases (different pathologies) get the label "ME/CFS". In dementia the first gene turned up relatively early [apolipoprotein] but the subsequent (2?) genes...

Surprised no-one has referred to Bhupesh Prusty i.e. since he was/is interested in mitochondrial fission in ME/CFS.

@Lena Kjempengren , re potential harms, @Tom Kindlon has published on this.

I think I noticed that Jonathan commented that there had been serendipitous cases i.e. where rituximab had been given to people with autoimmune arthritis and the improvement in their arthritis noted - indicating autoimmune antibodies. So there are "natural" experiments going on - does that...

Thank you - interesting that "Ian Lipkin applied for a NIH grant for a small GWAS" - hopefully the approach means that the data could be combined with DecodeME. Interesting re Jarred Younger/Kiz Worthy i.e. rare variant study -- yea sample size (& selection criteria) would be interesting.

Thanks Simon & don't feel obliged to reply to this. Interesting --- don't suppose NIH would fund a whole genome sequence study i.e. based on the DecodeME samples! I've noticed that using families with 2 or more members affected, and at least 1 severe, has been suggested - not clear what the...

Maybe first step would be to see what DecodeME turns up [results due to be published by middle of 2025?] -- if that supports this theory then the barriers (re biopsy) become a bit easier to overcome + bodies like MRC (UK) & NIH (US) may be more supportive/proactive.