The Mitochondria Man Gets His Money and The UK Goes MEGA: ME/CFS Research Moving Forward

[LavenderDojo]

@LavenderDojo Dr Younger does
Monthly YouTube live streaming where you can ask questions about what he's talking about that day.

I'm not sure when the next one is but maybe you can ask him about the microglia

The next onr will be posted here I'm sure.

Great! Thank you.

I found a video from last year: Jarred Younger, Ph.D. - Microglial Modulation in the Treatment of Fibromyalgia

 

[Merida]

I have a published report from 2003 that states, " Disorders of the mitochondrial electron transport chain enzymes of oxidative phosphorylation have neurological, musculoskeletal, opthalmologic, cardiac , and GI manifestations."
( Chitkara DK et al. Abnormalities in gastrointestinal motility are associated with diseases of oxidative phosphorylation in children. American Journal of Gastroenterology .2003 Apr; 98(4): 871-7)

Interesting that neurosurgeon Skokei Yamada found that it was the mitochondria that became dysfunctional ( specifically the cytochrome system) in nerve cells that were stretched in tethered cord syndrome. I expect there will be many ways in which the mito can become dysfunctional.

I try to stay hopeful.

 

[Ron]

Good find by Never Give Up on PR.
http://forums.phoenixrising.me/inde...in-collaborators-blog-post.44886/#post-729764
http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/

"Dr. Robert Naviaux and I have submitted for publication a study, now under peer review and expected to be published in the fall of 2016, looking at 450 metabolites in 43 people with CFIDS/ME and 43 age and sex matched controls. We found a characteristic chemical signature differentiating the patients from the controls. We just received a grant, that along with donations to our newly established non-profit, will allow us to replicate this study. If our findings are indeed replicated we will have a biochemical test for CFIDS/ME. This will help the suffering of the who knows how many patients with CFIDS/ME who lose their friends and families because they don’t look sick and have normal blood tests. It will also allow more directed research to the treatment of this illness".

 

[Merida]

Thank you, Dr. Davis, Dr.Naviaux and colleagues. I am so incredibly grateful.

 

[Justin]

We'll see! I think there are subsets all over the place. I just communicated with someone who did some really intrusive testing to see if her mitochondria were working - they were working fine - the thing that got her during exercise was her autonomic nervous system; it was pretty kaput!

This is what really gets me....I like the theories but I have this lingering suspicion that Ramsay and Dowsett we right about yhe neurological disease.

I have a feeling that the ANS and CNS take a hit hard with a subset.

I believe a CENTER OF EXCELLENCE is needed. Followed by symptomatic groupings and trigger onset. Then group and study......not just lets study all of them....many have different symptoms clusters and severities.

I say group us based on symptom and severity. Then study.

 

[Laurie P]

Thank you, Dr. Davis, Dr.Naviaux and colleagues. I am so incredibly grateful.

Yes, thank you very much!

I'm also very grateful to see Dr. Bell and Dr. Cheney working with these researchers and for their decades of dedication to us.

 

[Cort]

Hey, thanks for quoting me, Cort

Let's hope this planned study does get funded.

My guess is $10m is the minimum required for doing this study. One of the good things about this is that they are collecting samples that will be available to the research community for analysis - a 10k cohort (plus 2k children) of well-characterised patients would be a huge resource. Plus, omics researchers generally are big on open data so my guees is that their data will be available to others too.

Great points Simon! Thanks for pointing that out...It's a different research world now.

 

[Cort]

It's possible all these things are correct and interrelated. Mitochondria can release DAMPs (Damage-Associated-Molecular-Patterns); DAMPs can activate microglia (and if I recall correctly that's what Dr Younger is looking at, microglia); activated microglia can dysregulate the autonomic nervous system. Perhaps the signal cascade triggered by mitochondrial DAMPs can persist after the mitochondria themselves have recovered?

Love the mitochondria - ANS connection; whatever is going on it has to include the ANS IMHO...

 

[Cort]

I am not sure if I am similar to this. As long as I haven't got a throat or the beginnings of a UTI I regularly walk 8500 steps a week or more but if I push more than that I just run out of glucose to keep my blood sugar up. I know one's blood sugar is supposed to be fine when at a reasonably low level but I cannot do anything when mine is like that and my energy plummets, my heart races, I sweat profusely and walk like a drunk I am so dizzy.

But after using my oxygen concentrator for 30-40 minutes a lot of energy comes back but not sufficient that I could go out and repeat the walk. I have to do more sitting down tasks and also some horizontal rest but definitely my central nervous system is massively involved in my illness.

I think there are a lot of subsets in this disorder Bertiedog. If I remember correctly Rachel has big problems with hypoglycemia. I know that blood sugar must play a role in my ME/CFS because I can't handle sugar very well - it saps me. I imagine that you're in a pretty common subset actually.

 

[Cort]

Oh come on, we need to be smart. Scientists are human with egos, often very large egos that need massaging with thanks and praise. I'm the first to condemn the so called science of White, Wessely and co. but if we can see hope of substantial funding for objective science by UK scientists then that is not something to ignore. Wessely and co. will only vacate the territory they hold when objective science forces the issue. Get behind those who now promote the search for objective truth in the UK. Top class science in top journals will defeat PACE and impact upon NICE.

Amen to that.

 

[Bertiedog]

Actually my post should have said I regularly walk 8500 steps a day not a week, on some days it's even been as high as 11,000 steps but that would have included lots of rests too. No way could I do that everyday an as mentioned when I have a virus or throat issue brewing then my CNS goes haywire and I might only manage 5000 or less steps in a day.

I am sure there are lots of subsets in this illness too, no way are we all the same.

 

[cheesus]

There is now a petition to support the UK MEGA research application to the MRC

https://www.change.org/p/support-th...-its-application-to-major-uk-research-funders

 

[BrianH]

I love that this major study is being done in the UK. I hope the PACEholes are taking notice!

Unforunately one of the 'PACEholes' is chair of the stering comittee has caused severe anger among patients on the sterring comittee and is souricng patients from psychological clinics. Make what you will of that.

 

[BrianH]

This is what really gets me....I like the theories but I have this lingering suspicion that Ramsay and Dowsett we right about yhe neurological disease.

I have a feeling that the ANS and CNS take a hit hard with a subset.

I believe a CENTER OF EXCELLENCE is needed. Followed by symptomatic groupings and trigger onset. Then group and study......not just lets study all of them....many have different symptoms clusters and severities.

I say group us based on symptom and severity. Then study.

Now I had my mitos tested and the results were truly awful! My endorcrine results were severely out of whack on all three axes (Adrenal, Thyroid, Gonadal). Which brings us back to the point, we havg subsets of people with quite different causes.