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

Discussion in 'General Treatment' started by Jesse2233, Nov 21, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    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
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    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
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    The treatment used...
    And this is quite hopeful...
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    Interesting mention of a potential biomarker
     
  5. junkcrap50

    junkcrap50 Senior Member

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    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.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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

    pattismith Senior Member

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

    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.
     
    Last edited: Nov 22, 2017
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Nice, what kind of improvements did you get?
     
  9. Sidereal

    Sidereal Senior Member

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

    pattismith Senior Member

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    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)
     
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  11. Aubry

    Aubry Senior Member

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

    pattismith Senior Member

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    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!
     
  13. JaimeS

    JaimeS Senior Member

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    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.
     
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  14. TreePerson

    TreePerson Senior Member

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    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.
     
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  15. Ravn

    Ravn

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    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.
     
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  16. rodgergrummidge

    rodgergrummidge

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    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
     
  17. TreePerson

    TreePerson Senior Member

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  18. Jesse2233

    Jesse2233 Senior Member

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

    JaimeS Senior Member

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    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/
     
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  20. TreePerson

    TreePerson Senior Member

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    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.
     

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