Successful Pilot Study Treating PDH Deficiency in ME/CFS (B1 / CoQ10 / ALA / Algae + HOA)

[Jesse2233]

A Novel Nutriceutical Treatment of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS): “What it is and what it is not”

Frank Comhaire* Emeritus Professor at Department of Endocrinology and Metabolic Diseases, Ghent University Hospital, Belgium
Published date: September 30, 2017
Internal Medicine. Research Article

Abstract Ten patients suffering from pathology considered to be refractory ME/CFS have been prospectively offered treatment with a novel nutriceutical that increases the activity of pyruvate dehydrogenase and enhances mitochondrial energy production by the aerobic metabolism of the Kreb’s cycle.

Whereas half of the patients presented highly significant improvement of their health and condition, the other half did not experience any benefit. The latter patients were found to suffer from different pathology that should be classified as “ME/CFS-nondisease”.

http://www.openaccessjournals.com/s...-is-and-what-it-is-not-2165-8048-10002452.pdf

 

[Jesse2233]

This is a pilot study with a small cohort and no placebo, but the author seems well informed, and the results are encouraging

It’s also interesting to note that this is the first trratment trial basing intervention on Dr Ron Davis and Drs Fluge / Mella’s discovery of PDH impairment

@Janet Dafoe (Rose49) @Ben H @AshleyHalcyoneH @JaimeS

The study author Frank Comhaire might be a good collaborator for OMF / Stanford team

 

[Jesse2233]

The treatment used...

the author has developed a composite nutriceutical containing the sodium salt of one of the halogenated organic acids present in a particular genus of algae, vitamin B1, alfa lipoic acid, acetyl-l-carnitine, and the oxidoreductase ubiquinone Q10 (patent pending).

And this is quite hopeful...

None of the patients reported adverse events or side eوٴects. In 5 patients (responders; group 1, Table 1) health situation was significantly improved with respect to their physical performance capacity, brain function, and the reduction of muscular pain and exhaustion. Нe scores on the questionnaires decreased significantly (students’ paired sample t-test: P=0.01) from an average of 74.4% (SD: 15.2%) (FSS score 5.21) before treatment to 40% (SD: 23,5%)(FSS score 2.80) aіer 1 month of intake of the nutriceutical, corresponding to a mean reduction of 49.2% (SD: 26%). During follow-up the improvement was maintained or enhanced further.

 

[Jesse2233]

Interesting mention of a potential biomarker

A possible diagnostic method for detecting deficient enzymatic activity of the PDH and selecting patients for nutriceutical treatment would be by measuring the concentrations of pyruvate and of acetyl coenzyme A in the patient’s monocytes. Нis method is presently being explored, but it requires advanced laboratory technology

 

[junkcrap50]

the author has developed a composite nutriceutical containing the sodium salt of one of the halogenated organic acids present in a particular genus of algae, vitamin B1, alfa lipoic acid, acetyl-l-carnitine, and the oxidoreductase ubiquinone Q10 (patent pending).

There's nothing novel in this nutriceutical, except mabe the algae. Those nutriceuticals are in several supplements and I'm sure many cfs people have taken this combo before.

 

[Jesse2233]

There's nothing novel in this nutriceutical, except mabe the algae. Those nutriceuticals are in several supplements and I'm sure many cfs people have taken this combo before.

Agreed, though I'm interested in dosages and the specifics of the algae

 

[pattismith]

There's nothing novel in this nutriceutical, except mabe the algae. Those nutriceuticals are in several supplements and I'm sure many cfs people have taken this combo before.

that's true, but some ME patients already showed some improvement with this cocktail

I am one of them.... but it doesn't mean that my disease is necessarily PDH impairment associated.
Some patient with primary mito disease will respond as well with this coktail.

 

[Marky90]

that's true, but some ME patients already showed some improvement with this cocktail

I am one of them.... but it doesn't mean that my disease is necessarily PDH impairment associated.
Some patient with primary mito disease will respond as well with this coktail.

Nice, what kind of improvements did you get?

 

[Sidereal]

Do we know which form of thiamine was used in this study?

 

[pattismith]

Nice, what kind of improvements did you get?

I used Thiamine injections (also tryed oral Benfotiamine, but I feel better with T injections) in my cocktail.

I started 6 months ago, as I was in a very bad position, and it helped for :

heavy legs and harms
muscles twitching
energy
hyperlactatemia
general fatigue
post-prandial exhaustion + brain fog

brain may be better but I still suffer from headache/migraines, so I have to pay attention to supplement that can worsen this symptoms like Ubiquinol.

(To be honest my cocktail contains many other supplements, but these ones have helped , and to be honest I'm not cured, I just can function better)

 

[Aubry]

I see professor Frank Comhaire in december. I wonder what he will do with me ...

 

[pattismith]

I see professor Frank Comhaire in december. I wonder what he will do with me ...

It's very interesting that a professor in Belgium is publishing clinical trials about ME patients, it means a lot to me, let us know what investigations he will do for you!

 

[JaimeS]

Wonder if that algae extract is DHA? Vegan sources of it are from a particular sort of algae. In that case, I have taken all of these at one time, and am taking everything but the ALA now.

I don't doubt it's helpful, or will be a good supplement for some pwme, considering the benefit I've found from these... so long as the doses are right and the sources are good.

 

[TreePerson]

It's interesting I just started this particular combination a couple of days ago. (minus the algae) I had tried most of it before but not in combination with thiamine. I'm still on quite a low dose but it does seem to help me I feel energy moving round my legs. Normally it feels blocked. So something is happening.

I can't remember how this relates to PDH and blockages Dr Davis and Fluge and Mella found earlier in the year. But I vaguely remember thiamine being mentioned then.

 

[Ravn]

I got an error message on the link from @Jesse2233 but found another version of the article here, in case anybody else has problems with the original link:
https://www.omicsonline.org/open-ac...d-what-it-is-not-2165-8048-1000252-93818.html

Good to see the non-responders in the study were analysed so thoroughly. One, they got some potentially useful differential diagnoses and treatments and two, it highlights the importance of very careful patient selection in ME research.

 

[rodgergrummidge]

Hi @Jesse2233 ,

The study by Comhaire has been published in a journal run by OMICS Publishers that are widely viewed as Predatory publishers. Typical of such predatory journals, the publishers have allowed Comhaire to publish results with absolutely no description of the nutraceutical formulation in terms of dosing and scheduling. There is also no description of the the 'sodium salt of one of the halogenated organic acids present in a particular genus of algae'. Such deliberately vague descriptions where key 'drugs' used in humans are not described are not allowed in high quality scientific journals for obvious reasons: Scientific findings should be testable and repeatable by independent labs and that unethical research involving humans should be avoided at all costs.

Sometimes, such papers are simply promotional tools used to advertise new drug treatments on the internet. Sometimes it can be difficult to distinguish between publications reporting genuine research from publications being used as advertising material under the guise of scientific research. This paper has a number of issues that raise concerns about the findings and their significance in CFS.

Rodger

 

[TreePerson]

There is another study using almost the same supplements here.
https://www.sciencedirect.com/science/article/pii/S2212958817300915
Only this one seems to add in in N acetylcysteine. As far as I can see from google it supports liver health and glutathione production. I haven't tried this. Has anyone any experience of using this?

 

[Jesse2233]

@TreePerson good find, that study had a similar result too

 

[JaimeS]

There is another study using almost the same supplements here.
https://www.sciencedirect.com/science/article/pii/S2212958817300915
Only this one seems to add in in N acetylcysteine. As far as I can see from google it supports liver health and glutathione production. I haven't tried this. Has anyone any experience of using this?

NAC is a chelator, and I know some people who've had pretty poor reactions from it because of that -- maybe? It's hard to tell with a chemical that has so many potential jobs in the body. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922724/

 

[TreePerson]

NAC is a chelator, and I know some people who've had pretty poor reactions from it because of that -- maybe? It's hard to tell with a chemical that has so many potential jobs in the body. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2922724/

Thank you. Does that mean it removes heavy metals? I'm very wary of everything because I often react to even very small doses. And it's hard to find small doses so I end up trying take bits of a capsule.

I've been taking the others mentioned for several days and had felt better but then developed insomnia and the pre- crash feeling that I have been using more energy than I've got. A bit like drinking coffee. I've had this sort of thing happen so many times with the B vitamins etc. They help but they mask a deeper tiredness.

I keep trying because I know so many people who have succeeded in getting back up to a higher level with these sorts of combinations.