The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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*NEW* Trial of therapy for CFS as mitochondrial dysfunction at Columbia

Discussion in 'General ME/CFS News' started by livingwithcfids, Nov 20, 2011.

  1. livingwithcfids

    livingwithcfids

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    Onto some enlightening news....

    As more data are acquired, we and others believe that CFS is actually a metabolic mitochondrial dysfunction resulting in insufficient energy production. (are they being too narrow minded? CFS is a multi-factorial illness involving the CNS, immune system, and metabolism.

    Researchers at Columbia University will be recruiting soon for a trial of four nutrients that they believe have the potential to support improved mitochondrial energy production in Chronic Fatigue Syndrome (ME/CFS) patients. This 6-month trial of a therapeutic intervention, set to start in February, will be randomized, double blinded, and placebo controlled.

    The trial - "Chronic Fatigue Syndrome: Correction of Mitochondrial Dysfunction by Conditioning Exercise and Nutraceutical Therapy" - is now listed in ClinicalTrials.gov (http://clinicaltrials.gov/ct2/show/NCT01471652). It is based on research suggesting that:

    ME/CFS involves an energy-draining mitochondrial dysfunction of the brain and skeletal muscle of genetically susceptible individuals, often preceded by a viral infection.

    Both patients with mitochondrial disorders and patients with CFS manifest elevated serum lactate levels after exercise, and demonstrate elevated brain cerebrospinal fluid levels and decreased brain glutathione levels on nuclear magnetic resonance (NMR) spectroscopy.

    Certain nutritional supplements have been beneficial in treating patients with mitochondrial disorders and have improved the clinical conditions of individual CFS patients.

    Therefore, this trial will administer these nutrients to the treatment group:

    - Coenzyme Q10,

    - Acetyl-L-carnitine,

    - Alpha-lipoic acid,

    - DHA (docosahexaenoic acid) - an omega-3 fatty acid found in fish & krill oils.

    - And a multivitamin
    The placebo group will receive fake supplements

    Both groups will undertake conditioning exercise

    Results will be measured in terms of change in fatigue and other CFS symptoms, tests of cerebrospinal fluid, glutathione and lactate levels in the brain, and more.
     
  2. Enid

    Enid Senior Member

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    Must say I've tried them all at various stages - not much difference resulted. But this a controlled trial so something good may come out.
     
  3. Holmsey

    Holmsey Senior Member

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    Scotland, UK
    Wales got their first

    This is the theory behind much of the treatment regimes of Dr.Myhill (Wales / UK) who offers access to testing by a private lab to assess the energy both being produced and passed accross the mito membrane. (When not defending her practice against the GMC that is).

    I did these tests a year past March and got quite a shock reading the results so I went for supplementation in a big way. I have to say that I did see an increase in function which didn't kick in until around 2 month's later than predicted at 5 - 6 months, in fact I'd started to think it was just another dead end and had said as much but was encouraged to stick with it until at least 9 months before giving up. Glad now that I did.

    Simoultaneously though I took time out and really rested, I also took a very low dose anti depressant to improve sleep, which it did, a sauna regime and some radical diet changes so there's no guarantees it was either the supplements or only the supplements. But in fairness to Dr. Myhill, she beleives in the whole practice not just the supplements. Interesting to see it's much the same set though, always gives you confidence there's something in it.

    Of those listed I was (am) taking CoQ10, Acetle L-carnitine and Veg EPA which is supposed to have clinical proofs as an essential fatty acid with activators in the correct proportion.

    While I indicate that I've experience some improvements, I'm still clearly ill, so for me at least this route isn't a cure but I'll be waiting with interest to see what the clinical measurements say after the study has ran.

    Of late I feel I'm getting less benefit from the whole bundle of interventions and that I've actually started to fall back despite my efforts, and in my wholey unqualified opinion, the mito connection is a symptom of the illness not a cause. But again, that's only an opinion.

    Good luck to them.
     
    amaru7 likes this.

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