Phoenix Rising tweeting live now from Invest in ME 2014 Conference 30 May

[Sasha]

I guess that's our lot.

Thanks, @Mark - you did a fantastic job! Hope you enjoyed the conference.

Can't wait to get the DVDs now. Last year it took a couple of months at least, I think.

 

[Valentijn]

@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.

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.

 

[Nielk]

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.

I don't know @Valentijn - I just copied it from PR's tweet.

 

[Countrygirl]

Thank you, Mark. I appreciate being kept informed.

 

[Sushi]

@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.

Yasko found a very high % of ME patients had an MTHFR SNP--don't have the stats though.

Sushi

 

[Helen]

@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?

Thanks @Mark and everyone for reporting from the conference.

 

[Undisclosed]

Did you, or anyone, get who of the lecturers that told this?

Dr. Andreas Kogelnik.

 

[NK17]

@aboutmecfs: MTHFR -- have got funding to study the role of MTHFR in ME. Not causative in most cases, cofactor? Mutations are disproportional in ME.

My ME specialist Dr. Kogelnik is starting a clinical study based on his clinic's patient population MTHFR test results.
As far as I know he tests all his patients. I'm heterozygous for one mutation, have been supplementing with sublingual methylcobalamine and L-methylfolate (Solgar).

 

[Valentijn]

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 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.

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).

 

[aimossy]

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.

 

[Kati]

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).

i agree with you @Valentijn. i am looking forward to blinded clinical trials results from Dr K whenever that will be ready. Everything needs to be backed up by solid research.

 

[natasa778]

Did you, or anyone, get who of the lecturers that told this?

Thanks @Mark and everyone for reporting from the conference.

Kogelnik

 

[natasa778]

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.

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.

 

[Kate_UK]

Where were Fluge and Mella?(I can not remember spelling) Was this embargoed info at the conference?

They were due to speak the day before, see here http://www.investinme.eu/news.html

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.

 

[aimossy]

Thanks @Kate_UK I got mixed up and thought they were speaking on the second day.

 

[Undisclosed]

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.

He actually said 95 percent of the ME samples and about 40 percent of the general population.

 

[Firestormm]

They were due to speak the day before, see here http://www.investinme.eu/news.html

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

 

[Kate_UK]

http://www.investinme.org/Documents/Journals/Journal of IiME Vol 8 Issue 1.pdf

 

[Mark]

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.

No embargoed information was presented this year.

I think there are a lot of groups hard at work right now, and they will publish when the time is right, but I agree it's very frustrating when interesting or exciting research that is presented as embargoed doesn't reach the light of day and get published. I suppose there are many possible explanations for that and it probably doesn't do any of us any favours to delve deeply into why.

 

[Mark]

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

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...