A Metabolic Trap for ME/CFS?

[Sushi]

From today's emailed newsletter: ”If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

That is where the quote began, so I guess "if this is the case" relates to the theory behind the metabolic trap. Anyway, very hopeful.

 

[Solstice]

From today's emailed newsletter: ”If this is the case we should be able to push the patients out of this state by a specific metabolic intervention. We are very hopeful that this could be a one time treatment, take only a few days, and be relatively inexpensive.”

That is where the quote began, so I guess "if this is the case" relates to the theory behind the metabolic trap. Anyway, very hopeful.

From what I read that didn't relate to Phair's work but to the severely ill study, right?

 

[Neunistiva]

Could you direct me to the interview?

https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/

That is where the quote began,

That's actually the end of the quote, you can find the whole text in this thread

From what I read that didn't relate to Phair's work but to the severely ill study, right?

You can read the full text I linked for Sushi above. The potential treatment is based on the metabolic trap hypothesis which Dr. Phair developed after seeing metabolic result in the Severe ME/CFS Patient study, according to the interview I linked above.

So the answer would be, it relates to both.

 

[perrier]

Pls clarify: is it that 23and me has NOW changed and some years back did test for some of what Dr Phair requires.

I ask because we have an older test.

Thanks

 

[Neunistiva]

Pls clarify: is it that 23and me has NOW changed and some years back did test for some of what Dr Phair requires.

I ask because we have an older test.

Thanks

Hi guys,

I have just spoke to Robert Phair (what a wonderful guy), and he now has enough 23andme data and does not require anymore-thank you to everyone who sent some in.

However if anyone has WES (whole exome sequencing) or WGS (whole genome sequencing) he is still interested in having that data.

Thanks,

B​

From this thread

 

[mariovitali]

@perrier

My understanding is that only Dr Phair and all researchers aware of his Research know exactly which SNPs they are considering.

Perhaps your chip version has all of them but the only way to know whether this is the case , is to contact Dr Phair and send him over your DNA data.

The above is to the best of my knowledge, perhaps someone else knows more.

 

[valentinelynx]

i.e. some initial viral infection or whatever triggers the disease in a matter of days or weeks

Or, as in my case (and I recall reading if others like mine) it happened in a matter of minutes! One moment I was fine, the next I was exhausted. While on my way home on a short hike.

 

[bthompsonjr1993]

@Janet Dafoe (Rose49) , I am curious, do you have any insight as to whether the metabolic trap theory is compatible with Mark Davis' findings of T-Cell activation? Would the T-Cell activation make sense given what Dr. Phair is theorizing for the metabolic trap?

Thank you so much for everything you do, the hope you and Ron bring is what gets me through each day!

Best,
-brian

 

[used_to_race]

I am curious, do you have any insight as to whether the metabolic trap theory is compatible with Mark Davis' findings of T-Cell activation? Would the T-Cell activation make sense given what Dr. Phair is theorizing for the metabolic trap?

Obviously I'm not the person you were asking, but having read some of the publications on the cell danger response and its metabolic effects, It seems like the T cell expansion, low NK cell function, B cell driven autoimmunity, and all that stuff could be downstream from a metabolic deficit, and the mechanism of action would be purinergic signaling. I could be wrong because I'm not a biologist or doctor, let alone a metabolomics expert, but see some of these papers:

• Purinergic signaling in inflammatory cells: P2 receptor expression, functional effects, and modulation of inflammatory responses
• Immune cell regulation by autocrine purinergic signalling

 

[Janet Dafoe]

@Janet Dafoe (Rose49) , I am curious, do you have any insight as to whether the metabolic trap theory is compatible with Mark Davis' findings of T-Cell activation? Would the T-Cell activation make sense given what Dr. Phair is theorizing for the metabolic trap?

Thank you so much for everything you do, the hope you and Ron bring is what gets me through each day!

Best,
-brian

Ron says that it is possible that the metabolic trap is causing the T-cell activation. It is not known yet whether this is true.

 

[bthompsonjr1993]

Ron says that it is possible that the metabolic trap is causing the T-cell activation. It is not known yet whether this is true.

Amazing! Thank you!

 

[Kenshin]

Are there any key points about how sleep effects the metabolic trap, and vice versa?
Many people with M.E report feeling terrible after napping in the daytime.

Amazing! Thank you!

Collaborative evidence emerging.

 

[raghav]

@Janet Dafoe (Rose49) @Ben H By now the team working on the metabolic trap hypothesis should have completed "Proof Of Concept" testing in at least the white blood cells. Can we know whether the hypothesis is valid ? Are they able to push the cells back to a healthy state ? We ME patients dont want to build castles in the air and then see them vanish. So can you find out from Dr. Ron Davis and Dr. Phair whether the hypothesis is valid ? Thanks

 

[Neunistiva]

By now the team working on the metabolic trap hypothesis should have completed "Proof Of Concept" testing in at least the white blood cells.

"Phair said they should know if the metabolic trap is present in the white blood cells of ME/CFS patients by the end of summer."
​

Are they able to push the cells back to a healthy state ?

"If the metabolic trap can be demonstrated experimentally in cells from CFS patients and not in healthy controls, we’ll begin the search for ways to return such cells to normal."​

https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/

 

[raghav]

I am quoting from OMF newsletter of May 24th in which it was said with the new 1 million dollar donation they will be able to accelerate the research. They should hopefully be able to complete the testing before summer end. That is the reason I asked whether there was any substantial progress.

OMF received a $1 million anonymous pledge to escalate Dr. Ron Davis’s systems biology approach with Robert Phair, PhD, at the ME/CFS Collaborative Research Center at Stanford University. This will expand the search for and testing of their “metabolic trap” hypothesis, and will enable Dr. Davis to hire an additional scientist with experience in complex metabolic analysis to accelerate this research. Watch for research updates to keep informed about their progress on this exciting project.

 

[Neunistiva]

@raghav I am aware of that wonderful announcement, but it's only been 3 weeks. I feel it's unrealistic to expect that they managed to hire new personnel AND finish the project in matter of weeks which was supposed to take 4 more months.

Not that I don't share your impatience, but making statements such as "should have completed" seems to put unrealistic expectations and unfair blame on people who are working as fast as they can and always giving us prompt updates.

 

[Sushi]

will enable Dr. Davis to hire an additional scientist with experience in complex metabolic analysis

This alone will take some time--he is looking for an expert who would then have to finish current responsibilities before joining in this project. Dr. Davis, himself, has also been traveling to other conferences with researchers lately.

By now the team working on the metabolic trap hypothesis should have completed "Proof Of Concept" testing in at least the white blood cells. Can we know whether the hypothesis is valid ? Are they able to push the cells back to a healthy state ? We ME patients dont want to build castles in the air and then see them vanish. So can you find out from Dr. Ron Davis and Dr. Phair whether the hypothesis is valid ?

They will let us know as soon as possible--count on it! They have a son whose life they are trying to save so their motivation couldn't be higher.

 

[Janet Dafoe]

@Janet Dafoe (Rose49) @Ben H By now the team working on the metabolic trap hypothesis should have completed "Proof Of Concept" testing in at least the white blood cells. Can we know whether the hypothesis is valid ? Are they able to push the cells back to a healthy state ? We ME patients dont want to build castles in the air and then see them vanish. So can you find out from Dr. Ron Davis and Dr. Phair whether the hypothesis is valid ? Thanks

I have no idea why you think "by now ... should have completed .... xyz". They are working on it.

 

[maybe some day]

ME patients dont want to build castles in the air and then see them vanish

Why do you think we are building castles? Do you fully understand the tremendous intensity it takes just to get us this far in research?

Look at it this way, we are where AIDS was in the 80's.

Im grateful for how much OMF has done. You can bet they've saved lives by giving us renewed hope.

Respect.

 

[valentinelynx]

I have no idea why you think "by now ... should have completed .... xyz". They are working on it.

Obviously, some folks have no concept of how research proceeds! It's a painstaking, often tedious, frequently frustrating business. And real answers don't come according to a desired timeline. Sadly, a lot of publications today are examples of shoddy research, in which the authors publish "answers" although their data does not support them. Remember the PACE trial? It's far easier to twist the data to show the answer you want to find than it is to do good, solid science that approximates the true nature of things. This is not what we want for ME/CFS research. We want to know what is really going on, not yet another theory not supported by data. Ron Davis and his colleagues are true gems in the field of medical research, doing good science, not out to support their pet theories, but rather out to find real answers that can really, finally, help us all!