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Live tweeting from IiME conference, Friday 3 June 2016

bertiedog

bertiedog

Senior Member
Messages
1,743
Location
South East England, UK
daisybell said:
I'm taking a biotin-based supplement marketed for hair growth (as my hair is falling out). I noticed an improvement in my general energy when I started it.... Am thinking I might double my dose!
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I looked to see how much biotin was in my multi and its around 110 mcg whereas when I had my OAT test done a few years ago based on my Citric Acid Cycle results only 35 mcg was recommended so I don't seem to have the problem in my cycle he talked about but I did have high Succinic Acid and Isometric Acid, otherwise all the other metabolites were quite good. However I do have quite good basic energy its just it runs out quickly with exercise.

Pam
 
Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
bertiedog said:
I looked to see how much biotin was in my multi and its around 110 mcg whereas when I had my OAT test done a few years ago based on my Citric Acid Cycle results only 35 mcg was recommended so I don't seem to have the problem in my cycle he talked about but I did have high Succinic Acid and Isometric Acid, otherwise all the other metabolites were quite good. However I do have quite good basic energy its just it runs out quickly with exercise.

Pam
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Do not fret @bertiedog

They are running the cohort as you know on the severely sick, and there have been substantial differences between them from what I can make out, but many things in common also (I.e. Potential biomarkers). I think Whitney was the only one mentioned with a biotin deficiency so far. You expect this play out so to speak, with the heterogeneity of M.E.

You have issues with the TCA, which Davis will no doubt find subsets for. The TCA seems to be a/the main factor, as many have suspected for a long time. It's just what is causing the cycle to run so poorly (CDR?).


B
 
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Janet Dafoe

Janet Dafoe

Board Member
Messages
867
CeciliaSwe said:
I would like to be that fly on the wall! No, I would like to (leave this bed and) bring coffee to all of you, Janet, Ron and Linda. Your part in this, Janet @Rose49 is so incredible important. I cannot see a single minute of film with you and Ron without crying those tears of gratitude. Grateful that you invite us all to your life to bring awareness to this awful thing called ME/CFS. And that you despite the tragedy of your own use so much of your time and energy to encourage us all and contribute to a healthy future for us. Including me.
Thank you so much! I often pray for Whitney and all of your family.
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Thank you so much! This means alot to me and to us! It really is hard, as I know you know. Last night was a really hard one for me with Whitney, and I almost tweeted about it, but decided not to. Anyway, I just wish this would all go faster so everyone could get their lives back. What an immense tragedy this is.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
IiME on FB said:
Now back to Southampton and Norwich and other places following the last of the meetings yesterday evening which continued the collaboration theme in biomedical research.

We will make a report of the conference.

The team is very encouraged by the achievements being made which we believe will underpin future years of research leading to real results.

For far too long the oil tanker of ME research has been steaming in the wrong direction. Now we have managed to halt that tanker and begin to turn it around to the right direction - the right stuff.

Also happy with EMERG working together to create real opportunity in Europe to partner USA and Australia/New Zealand.

Thanks BRMEC6 and IIMEC11.

Thanks to all the researchers and participants at both events which has brought huge hope for change.

Thanks to all the delegates at IIMEC11 for making the day so enjoyable.

And thanks especially to IiME supporters for making it all possible.
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https://www.facebook.com/groups/5804522506/permalink/10153714949747507/
 
CeciliaSwe

CeciliaSwe

Messages
7
Location
Sundsvall, Sweden
Rose49 said:
Thank you so much! This means alot to me and to us! It really is hard, as I know you know. Last night was a really hard one for me with Whitney, and I almost tweeted about it, but decided not to. Anyway, I just wish this would all go faster so everyone could get their lives back. What an immense tragedy this is.
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Oh, how hard it must be for Whitney and for you, with no relief from the worry and the pain. I understand that you need to let all those feelings out somehow, and hope there are friends that can listen. My heart breaks a bit when I think about how much you - and others with severely ill relatives - have to struggle. It reminds me to be grateful to what I still can manage and grateful that I have healthy children.
My thoughts are with you and the research is our hope. I continue on my side of the ocean - together with other Swedes that always think of your family and Ron's research - to fundraise for the project.
 
mango

mango

Senior Member
Messages
905
mango said:
@Kina Do you have any comments on this? Did Whittemore really say this during her talk today? And of so, whose ambition? Patient advocates' or NIH's? Do you have any more info about the details?
https://twitter.com/i/web/status/738674729293352960
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So, I asked Dr Whittemore about this. Here is her reply:
[...] here is what I think I said: “The patient advocates in the USA would like NIH to fund $250 million in research grants on ME/CFS. It won’t be possible to get to that figure right away, but we can build the research funded by NIH to hopefully eventually get to that figure.” (or something along those lines).

This is not an official statement from NIH, but is the request from the patient advocacy community. There is certainly enough research to be done, including clinical trials, to eventually get to that level of funding, but we will need to build our efforts to get there.
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S

Sasha

Fine, thank you
Messages
17,863
Location
UK
From Ron Davis's abstract, talking about taking samples from bedbound PWME:

Ron Davis said:
We send a medical team to each home in the San Francisco Bay Area to collect blood, urine, saliva, tears, and stool. We will be collecting more molecular data on each patient at one time point than has ever been collected in any study in history
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:jaw-drop:
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
More! :woot:

Broken up for readability:

Ron Davis in IiME Journal said:
While we were seeking funding for the Big Data Study we tested some of the technologies on a few severe and not severe CFS and healthy control patients.

We discovered that the metabolome (the small metabolites found in the blood and urine) of the serium gave clear indication of metabolic abnormalities.

Preliminary results indicated that glycolysis may be impaired with glucose being routed to fatty acid synthesis.

Possibly more important, the metabolites in the citric acid cycle in the mitochondria were lower than in healthy controls and some almost undetectable.

This cycle generates most of the energy (ATP) for the body. It makes it clear that this is no psychosomatic disease. From preliminary analysis it would appear that not only ATP is low but also ADP, AMP, GTP and in some cases uracile.

These cofactors are involved in hundreds of molecular reactions in the body including in the brain. Their decrease would cause a large number of body functions to be abnormal.

We don’t know which cells in the body are being affected (possible all cells) and are currently studying the various white and red cells with a variety of commercial and custom technologies.
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I'd be interested in thoughts from clever people.... :nerd::nerd::nerd:
 
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