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CFS,mitochondrial diease, autism

Discussion in 'Other Health News and Research' started by Frickly, Jan 26, 2010.

  1. Advocate

    Advocate Senior Member

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    I'd love to know if this is found in healthy controls at a lower rate. Gail Kanksy, of the NCF, just announced on CoCure that people can get the "ciguatera" test for free, for a limited period of time. I think it involves sending a specimen to Hawaii.
  2. CJB

    CJB Senior Member

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    I talked to the Hawaii folks. They will do the testing for free, but you have to pay to have the blood collected, spun and shipped. ((I was told they will pay the FedEx on the first ten volunteers) I'm not in a position to do that now, but if anyone can help out, they should. They really want our blood.
  3. boomer

    boomer Senior Member

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    Why is chronic fatigue syndrome not mentioned specifically?
  4. Advocate

    Advocate Senior Member

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    Rich, I hope you do try again.
  5. Advocate

    Advocate Senior Member

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    We have a few XMRV+s who participate here. It might help our cause if they would do this--if they were well enough to do this.
  6. Advocate

    Advocate Senior Member

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    Oh, how difficult this must be for you! I hope you and your son can get into an XMRV research study.
  7. Koan

    Koan Be the change.

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    Just for the sake of accuracy, Gerwyn, most of these diseases are progressive, not particularly amenable to treatment (with a few exceptions) and devastating.

    If we are to join forces with the broader community of people dealing with mitochondrial dysfunction, I think we must stay informed as to the effects of other conditions where mitochondria is implicated.
  8. Gerwyn

    Gerwyn Guest

    These diseases are not always progressive as in other mitochondrial disorders which almost inevitably end in death.The majority are treatable and arrestable whereas the genetic mitochondrial diseases are usually not.the authors name the disease as chronic.Things like osteoporosis obesity diabetes and so on can be managed by diet and excercise especially in the early stages.If" caught" they dont progress.the same goes for heart disease ,angina and so on.Progressive in this sense means inevitably going from bad to worse such as the congenital mitochondrial diseases .So I,m afraid that I don,t agree that these diseases are not particularily amenable to treatment.Arethoma for example can completely eradicated.Type 2 diabetes can be totally controlled in most people similarily osteoporosis and so on.There are new and effective treatments available even for Parkinsons and Alzheimer admittedly more difficult to treat--contrast this situation with classical mitochondrial disease where there is no proven treatment at all--these are truly progressive.I totally agree that we need to be informed as to the effects of other conditions where mitochondrial are implicated .
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    boomer, I thought the same thing. "Let's not touch that one with a ten-foot pole."

    Tina
  10. Gerwyn

    Gerwyn Guest

    Are these people even aware of CFS Feduka does not even suggest a mito disorder The canadian symptom complex does.My point is perhaps the WPI could make them aware.perhaps by inviting comment on the symptoms reported in terms of being consistent with a Mito disorder.At least it would draw the attention of this highly credible independent group
  11. JPV

    JPV Senior Member

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    In addition to Sarah MyHills recommendations on Mitochondria repair, I found this article very interesting...

    Excerpt from: Enzyme-Rich Foods for Mitochondrial Repair

    I wonder if anybody with more experience on the subject can comment on these recommendations?
  12. Koan

    Koan Be the change.

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    Hi Gerwyn,

    I totally misunderstood the point in your first post. Sorry - my error. :ashamed:

    Thanks for taking the time to explain.

    Koan
  13. Gerwyn

    Gerwyn Guest

    Hi Koan,

    My pleasure My wording could have been better i have spent too much time dealing with the medical profession and I can slip into "shorthand" I will have to watch that in future sorry if it wasn,t clear in the first place
  14. Advocate

    Advocate Senior Member

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    I never thought of that! That's a terribly important distinction. Is there one part of the Canadian consensus definition that suggests that, or is it the combination?
  15. FernRhizome

    FernRhizome Senior Member

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    This is a great letter! Two of my mitochondrial doctors signed it: Vamsi Mootha and Dr. Bruce Cohen. There are already two other threads on this forum about mitochondrial cytopathy and CFS. I suggest we merge this letter with those threads?????

    Yes, the mitochondria world is VERY VERY VERY aware of CFS. Don't worry! They know that we are part of their group. As I've posted in the other mito thread, Vamsi Mootha is working on some phenomenally designed new testing that will let a single drop of blood from a finger prick be tested for all 200 enzyme reactions in the mitochondria. That will bring fast diagnoses. It's being done in animal models and hopefully will be available for humans within a couple of years.

    Also, if we don't move this thread could someone add the word "mitochondria" to the thread title? That's important as that's the topic of this letter and then other folks will find the thread, though perhaps merging with the other thread is more sensible?

    See the other mitochondrial threads for more information. ~FernRhizome
  16. FernRhizome

    FernRhizome Senior Member

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    Hi folks:
    Check out the Letter to Obama which appears just a few titles above this thread title. That letter is entirely about mitochondrial disease and research funding and is signed by two of my mito doctors: Bruce Cohen and Vamsi Mootha. I've suggested on that thread that they add the word "mitochondria" to the thread title and/or merge it with this thread. It's a great letter!!! And yes, those mito doctors know about CFS and want to help us too. ~FernRhizome
  17. Frickly

    Frickly Senior Member

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    Thanks FernRhizome! JPV, your post prompted me to go warm up my juicer. :)

    Fern, Whats the title of the thread?
  18. Julia Rachel

    Julia Rachel

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    Thank You FernRhizome!
    As a CFIDS caretaker (my son) and Patient.....we were tested for this disease immediately by our sepcialist at our first visit, to rule out Mitochondrial Disease. I would think all CFS/CFIDS/ME/FIBRO Docs would do this testing if they suspect the disease could be present. Especially when they see a sick Mother and child.
    Blessings,
    Julia
  19. Julia Rachel

    Julia Rachel

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    JPV:

    One has to be careful with Pineapple (it reacts with many meds) and red Beet Juice (It affects the Blood-use in small doses!-Wonderful...). Some of what you speak of is in the ALT Rotational Diet that my son and I were put on. This is a common diet for Cancer, AIDS and Transplant Patients. The diet cleanses and Nourishes, but will not replace nutritional deficiences immediately, so it is important that diet and supplements be used together in the beginning. It is my experience that medium-severe deficiences should be addressed immediately by a licensed specialist who can take the appropriate samples, then based on test results ....prescribe/compound the appropriate vitamins and minerals. Once the deficiencies are cleared....diet will work great alone. Blessings, Julia...
  20. CJB

    CJB Senior Member

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    I know that the saccharomyces yeasts are present in kefir. Obviously, not sure about that particular strain. I'm really interested in trying to compose a diet rich in the nutrients we need. So far, the kefir seems to be a great starting point.

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