Open Medicine Foundation (OMF)

I am not sure if this was discussed somewhere else but I am curious about a study that appears on the OMF website :

https://www.omf.ngo/genetic-and-metabolic-markers-of-bh4-deficiency-in-long-covid/

“We have determined that individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome are more likely to have pathogenic variants in BH4 synthesis genes compared to the general population, and we have also identified a corroborating metabolic signature that predicts BH4 deficiency”

Could someone link to the ME studies where such variants are included ?

I know @mariovitali discussed this hypothesis long ago.

 

@Aroa To be fair : BH4 has been mentioned by others before I did. What I found was an SNP on a gene called Sepiapterin (SPR) and this was shared with Stanford. Additionaly, the software I use has identified BH4 as a "major research target", in other words it confirmed the relevance of BH4 to ME/CFS before Stanford decided to conduct a study about it

 

As far as I can see there are none. There is nothing on the forum, and Google doesn't find anything either. My guess therefore would be that it is unpublished data that they are talking about.

 

"We have determined" isn't exactly precise language - does it mean in vivo research carried out by OMF itself, or does it mean OMF researchers have carried out systemic studies of previously published work ?

I'm not encouraged by a following sentence which seems to indicate a lack of scientific objectivity: "If we are successful, we will show that ME/CFS and Long Covid have a common underlying disease mechanism that includes deficiency of BH4." A negative finding would be just as scientifically valid.

Search on BH4 & ME & CFS on Google Scholar gives these (first two pages only):


1. [PDF] The NO/ONOO-vicious cycle mechanism as the cause of chronic fatigue syndrome/myalgic encephalomyelitis
ML Pall - Hauppauge (NY): Nova Science Publishers, 2009 - researchgate.net
… in the de novo pathway for the synthesis of BH4. Thus high dose IV ascorbate will be expected to increase the availability of BH4 by stimulating its synthesis via the de novo pathway. …

2. Myalgic encephalomyelitis/chronic fatigue syndrome: the human herpesviruses are back!
ME Ariza - Biomolecules, 2021 - mdpi.com
… synthesis of tetrahydropterin (BH4), a substrate required for serotonin and dopamine synthesis by … down-regulated key genes involved with dopamine and serotonin synthesis as well as …

3. Marginal BH4 deficiencies, iNOS, and self-perpetuating oxidative stress in post-acute sequelae of Covid-19
WA Villaume - Medical Hypotheses, 2022 - Elsevier
… of other syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), … mutations of GCH1 and related genes lead to marginal deficiencies of BH4 that are typically …

4.Nitric oxide synthase partial uncoupling as a key switching mechanism for the NO/ONOO–cycle
ML Pall - Medical hypotheses, 2007 - Elsevier
… cases of illnesses including chronic fatigue syndrome, multiple … The combination of high NOS activity and BH4 depletion will … and there is evidence that genetic predisposition plays an …

All looks pretty speculative with no obvious line of priority to research.

Edit: 2. above discussed here: https://www.s4me.info/threads/artic...uman-herpesviruses-are-back-2021-ariza.18888/

 

From the Open Medicine Foundation website:

OMF & Patient-Led Research Collaborative
Pioneering Progress for ME/CFS and Long COVID

https://www.omf.ngo/pioneering-progress-for-me-cfs-and-long-covid/

The Patient-Led Research Collaborative website is here - https://patientresearchcovid19.com/

 

That's pretty interesting.

There's been very little investigation into non-restorative sleep in ME/CFS.

 

I don't see anything wrong with that. They're doing research into a neglected disease. Of course they're delivering hope.

 

Hope sounds more realistic than cure which is what they were promoting a few years ago.

 

Much hype, zero results so far.

 

I think they may have delivered some false hope but also some real hope.

Hope for progress from research helps keep me going: it has helped me avoiding ever becoming depressed. Maybe there will be a breakthrough in my lifetime, maybe there won’t be, who knows, but the hope that there might be keeps me going. I think hope can be useful.

And if there is little or no research going on, it’s harder to have hope.

 

The hyping seems to be to drive donations and I get that, I think they have had a decent influx of cash because of that and funded some good researchers.

*edit* What @Dolphin says basically.

 

I don't believe tall tales from anyone, and the OMF won't achieve anything magical few years. But they're one of the biggest research charities and fairly prolific. Hopefully their treatment trials, which they announced at the end of last year, will get off the ground. I'm not expecting the world, but promising preliminary results may allow bigger studies to get funded.

 

OMF (and the research they fund) seem not to be tied to any one line of research. So the fact that one (or more) line of research they have previously funded hasn’t led to clear progress doesn’t mean another angle may not work.

But if people prefer to fund another research group, feel free. What concerns me is some people may not donate to, or fundraise for, any research. I don’t think not funding research privately is a good strategy if one wants research progress.

 

Maybe it's just me, but I feel like OMF has lost a lot of momentum compared to the earlier years (despite having more money than ever). It feels like the research coming out is the bare minimum to show they are doing something. They may be doing a lot more behind the scenes, but if they don't publish anything or let anybody know then it's kind of pointless isn't it? Medical research is a collaborative effort, it's not like you see the lone scientist doing experiments in his secret labs for years and then suddenly he comes out with the cure for cancer.

It is sad for me personally but it is what it is. I don't have much hope seeing all the research that came out from the past 10 years (not just OMF), even despite all the long covid money i don't see anything substantial ever happening. The tide can always turn of course, and if some people have a lot of hope, more power to them!

 

I look at Whitney as the 'proof in the pudding'. If he one day gets up and walks outside his house on his own power, I'll know that OMF found something.