A Metabolic Trap for ME/CFS?

Wishful

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I'm pretty sure that my ME symptoms aren't affected by bowel upsets, so it's not an effect for all ME/CFS victims. My guess is that your bowel upsets involve immune system activation, triggering ME symptoms...unless it's purely fatigue that isn't ME/CFS fatigue.
 
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@Janet Dafoe (Rose49) @Ben H

Hello,

I understand that Dr. Phair et al. want to keep a lid on the metabolic trap until you have investigated further, but I wondered if it might be possible to query Dr. Phair as to what supplements/drugs might have the potential to worsen the trap...

e.g. whey protein, amino acids, DCA, Q10, NAD+, B vitamins, Mifepristone, rapamycin, etc.

Definitely not looking for an endorsement of any of these substances, but, if possible, a red flag indication that perhaps one or some of these have the potential to potentiate the trap....

Thank you.
Hi,
They are working on this as fast as they can and discussing this question. I am unable to answer it myself. Believe me, we are feeling just as urgent as you are. I'm sorry you have to wait even one second longer. But I don't have anything more I can tell you right now. I'm itching to try whatever it is on Whitney, too! We are all just needing to hang in there. Hard.
 

pibee

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Has someone else, as well, got a response from dr Phair that their 23andme data is strongly consistent with this theory?
I just wonder, how often this is the case with these 3 out of 5 variants available on 23andme.
 

Jackb23

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Found an interesting study online that talks about glycolysis in the brain. -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4661798/#!po=4.22078

“Glycogen is not evenly distributed throughout the brain. Microscopic examinations show that the concentrations of glycogen are highest in regions with the highest synaptic density [9], suggesting its role in synaptic transmission, with the concentrations in gray matter about two times greater than in white matter [10]. High levels of glycogen can be found in the medulla oblongata, pons, cerebellum, hippocampus, hypothalamus, thalamus, cortex and striatum [9].”

Interestingly, glycogen is most common in the limbos system and brain stem. Nakatomi found that these exact areas to be inflamed in his study (they correlated with cognitive impairment severity) even though further replication of the study is warranted.
 
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I provided my Genos whole exome data, but the email response indicated my 23andme data didn’t provide the necessary info. I’m inferring my Genos doesn’t provide the needed set of SNPs. In case anyone else was considering submitting their Genos data. Big thanks to all the researchers!
You might want to let him know it's not 23andme. From yesterdays OMF tweet Dr. Davis's desk shows Genos kits.
Genos.jpg
 

Jon_Tradicionali

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Hi,
They are working on this as fast as they can and discussing this question. I am unable to answer it myself. Believe me, we are feeling just as urgent as you are. I'm sorry you have to wait even one second longer. But I don't have anything more I can tell you right now. I'm itching to try whatever it is on Whitney, too! We are all just needing to hang in there. Hard.
Hi Janet,

You may have already been asked this question but is Ron aware of Cortene’s hypotheses and their upcoming phase 2 trial?
 

raghav

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@Janet Dafoe (Rose49) Can we expect the treatment protocol max. by summer end i.e August 30 ? Will it require prescription drugs and will it require a doctor to administer the treatment or can we do it ourselves ? I hope I am not asking too many questions. Thanks in advance.
 

jaybee00

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@Janet Dafoe (Rose49)

Thank you for the reply to my query...Also wanted to empahsize that I am more interested in compounds that might be contra-indicated, i.e. cause further damage. This might be easier for your crew to tease out, rather than identifying whether something might be effective. If we try something and it doesn't work, then only money and time is wasted, but if it makes us worse, then...not so good.

Thanks again.
 

jaybee00

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@raghav

Dear Raghav

I thinks it is probably better not to request a specific deadline from their group to produce a protocol, because I'm fairly sure they don't know themselves........If they have to develop a new drug, then you are looking at many years.....
 

Hopeful1976

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@raghav

Dear Raghav

I thinks it is probably better not to request a specific deadline from their group to produce a protocol, because I'm fairly sure they don't know themselves........If they have to develop a new drug, then you are looking at many years.....
So depressing... 'many years'....
I have no hope left. I need to be better now. I am so sick of this disease it's unreal. I feel so sad.
 

FMMM1

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So depressing... 'many years'....
I have no hope left. I need to be better now. I am so sick of this disease it's unreal. I feel so sad.
Nancy Climas used drugs which had already been licensed i.e. to see if they would work for Gulf War veterans and shorten the delivery time. So there may be a workaround in terms of drugs once the problem is clearer. I think the first hurdle is to understand what people with ME/CFS are suffering from i.e.the disease mechanism (what Ron has been saying from memory). I that Lipkin may be correct i.e.that ME/CFS comprises a number of diseases. Phair is looking at metabolic stuff; some of those with ME/CFS may benefit from the outcome of that work. Bergquist is looking at steriod hormones --- there's a bunch of stuff and each one may benefit some people. I agree we want diagnosis and treatments.
 

raghav

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I read somewhere, dont remember exactly where, that they said a solution will be out by summer end. I think I read it in Cort's interview with Dr. Phair. That is why I mentioned that date of August 30th. I dont want to put pressure on OMF in any manner. Just trying to hang on in there.
 
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That’s right @Murph . Absolutely live and breathed it (the ‘lifestyle’) was my ‘job’ and had plans to naturally compete..then became ill.

Yes I was on a few supplements. I was a natural bodybuilder, so no steroids etc, but supplements such as Whey protein, L carnitine, ZMA, possibly the occasional pre workout NOS drink. The usual stuff really. I wasn’t on BCAA’s separately bar those in the whey. Some people took them aswell as whey.

I would have had a very high (200g at least) protein intake for obvious reasons, and I also dieted heavily ketogenically (mainly) to get to around 6-7% bodyfat.

I am very, very interested in the hypothesis. Robert Phair is a really clever guy, also really lovely too.


B
@Ben H ,

That is so interesting, I am in the exact same boat as you. Everything you just said sounds just like me. Can't wait to see how Robert's theory plays out!

-Brian
 
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