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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Disproportional according to what? The ME patients I've seen data for are about the same as non-patients, and I don't recall any research into the subject showing otherwise.@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.
@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.
@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.
Did you, or anyone, get who of the lecturers that told this?
My ME specialist Dr. Kogelnik is starting a clinical study based on his clinic's patient population MTHFR test results.@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.
I wouldn't take anything from Yasko seriously. She has proven that she can't be trusted to read and interpret research, so I can't say I have a lot of faith in her counting abilities either.Yasko found a very high % of ME patients had an MTHFR SNP--don't have the stats though.
I wouldn't take anything from Yasko seriously. She has proven that can't be trusted to read and interpret research, so I can't say I have a lot of faith in her counting abilities either.
We do have a fair number of MTHFR and MTRR mutations which can have a significant impact in gene functionality, but so does everyone else. They're fairly common ones, usually in excess of 10% prevalence in homozygous form in the general population, and 40%+ as heterozygous.
It's an interesting area, and I think treating existing methylation problems can be significantly helpful. But it isn't helpful when prevalence and efficacy claims are being so badly exaggerated. It gives the impression that 1) we're a bit hysterical on the subject and 2) we can easily be cured with a couple vitamins (or a dozen over-priced items from Yasko's webshop).
Did you, or anyone, get who of the lecturers that told this?
Thanks @Mark and everyone for reporting from the conference.
Disproportional according to what? The ME patients I've seen data for are about the same as non-patients, and I don't recall any research into the subject showing otherwise.
Where were Fluge and Mella?(I can not remember spelling) Was this embargoed info at the conference?
Norwegian Bergen Haukeland Researchers To Speak at BRMEC4
We are enormously pleased that Dr Oystein Fluge and Professor Olav Mella will be returning to London to present at the BRMEC4 research Colloquium organised by Invest in ME on 29th May.
Dr Fluge and Professor Mella are continuing their research and will shortly begin their phase 3 multicentre clinical trial of rituximab. Both will be attending the IIMEC9 conference on 30th May.
I believe he said (but was talking very fast, and this is from memory as wasn't taking notes by that point that they did deep sequencing and found certain MTHFR in 90% of CFS/ME samples, whereas they are present in only 30% of general population.
So not causative but if replicated over larger number of samples paints a good picture of vulnerability/risk.
They were due to speak the day before, see here http://www.investinme.eu/news.html
No embargoed information was presented this year.Where were Fluge and Mella?(I can not remember spelling) Was this embargoed info at the conference?
I must admit I am going to be very disappointed if there is no publishing of papers this year.
I think "very soon" or "imminent" statements about publishing is not really fair and they should be more honest and realistic with patients.
My guess - and it really is a complete guess - is that they encountered some difficulties finding a high-profile publisher for the follow-up study which had basically the same results as the first study, and pretty soon they found they were then into a whole new ball-game - funding and preparation for the big multicentre follow-up study must have been the top priority, and with the UK Rituximab study getting funded, we now have at least two replication studies in progress for the Rituximab results. So what would be the benefit of publishing the 2nd Rituximab study now? Minimal, perhaps...and maybe the cost/benefit just didn't justify the time it would have taken to complete it. I can certainly relate to the experience of being absolutely committed to doing something, and planning to do it, and then finding myself snowed under with even higher priorities arising from the original plan. One thing I'm confident of, they and our other top researchers are committed to progressing the science of ME/CFS as soon as possible, and all the researchers I've met are passionate and engaged and determined, and they have a lot more understanding than I do about the detail of these issues. I'd like to see that follow-up study published, but the two Rituximab replication studies are far more important...if it's a question of where to spend limited time, the two replication studies have to be their top priority...Anyone know if they said anything about why the announced paper at the conference last year has not yet been published a year later? Thanks