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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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Famous (and sort of famous) ME/CFS sufferers

Discussion in 'General ME/CFS News' started by margib, Oct 26, 2009.

  1. jenbooks

    jenbooks Guest

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    Sushi if it's dilantin neurontin and that kind of thing it's interesting because one of the famous folks mentioned early on in this thread told me how he completely recovered from CFS, and it was by chemically modulating brain function so that any stress response was instantly stopped in its tracks. He was bedridden...now he exercises and travels. Wouldn't work for all of us but central sensitization in the brain can be like brain injury, tbi which can result in CFS too.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I still take GcMAF. It continues to help. The most noticeable changes came in the first year but even after that there are slow changes for the better.

    If your nagalase is high, it is good to test some other things before trying GcMAF--like IL 8 (the pro-inflammatory cytokine that is most likely to rise on GcMAF), C4a, sCD14. The more pathogens we have, it seems the more likely we are to get a noticeable inflammatory response as macrophages "go after" those pathogens.

    Inflammation also can creep up on you so starting with a low dose seems important.

    Best,
    Sushi
    jenbooks likes this.
  3. searcher

    searcher

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    jenbooks - do you mind revealing what your contact took to stop his stress response in its tracks?
  4. jenbooks

    jenbooks Guest

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    searcher I don't know all the details but neurontin was one of them--anti seizure like dilantin (wilber). Hopefully he'll do an interview about it soon.

    i found his approach interesting not so much because of the medications (which I myself probably would not tolerate and get totally zonked on) but the reason he took them and his understanding of the mechanism. He said if a newspaper page turning made you feel like you were going to have a seizure, or if the plot of a tv comedy was so stressful you'd relapse for the day (and he wasn't joking)--the stress response had gotten wildly exaggerated and the brain and immune chemistry as a result. I'm paraphrasing. So the second he started feeling a familiar stress response he'd stop it in his tracks. I think this eventually dampened the central sensitization in the brain--

    It reminds me of traumatic brain injury which needs to be treated with drugs (and also nutrients) for healing. All of us are different but it seems possible to me that trauma, stress and chronic CNS inflammation might all upregulate the "stress" flight or fight response.
    Enid and merylg like this.
  5. Sing

    Sing Senior Member

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    Was her mother Rita Hayworth? Northern ancestry is what I am getting at. Have just seen Kenny De Meirleir's interview.
  6. Sing

    Sing Senior Member

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    Back to Ken Wilbur, he is a good communicator, isn't he? It takes such a lot not only to manage this illness physically, but to learn some way of communicating it to others. Communication involves inclusion and joining in some way. "Annoying" is an idea which everyone can relate to. Adding "incredibly" so, then moves the idea in the right direction, but is still something people might relate to. I think our experience becomes so bizarre, we fall off the map in terms of social culture as well as medical culture, so communication is quite a challenge--
  7. Sing

    Sing Senior Member

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    Leela, I was really touched by this. Thank you! I am with you in the same experience.
  8. jenbooks

    jenbooks Guest

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    Re: Ken Wilber and his scores of devotees, read Grace & Grit. He gets married, his beloved gets aggressive breast cancer, he is the sole caregiver through horrendous times, he gets CFS during this period. He had no scores of caregivers when he went through all that. Maybe because he is a genius and an adept he has generated a following and a foundation, but if you read his description of being hospitalized after seizures and kidney failure, he inspired the entire hospital staff rather than wingeing.

    We could all take a lesson from him.
    Sushi likes this.
  9. Sing

    Sing Senior Member

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    Yes, it is really an extraordinary story! Another message in it for us is that spiritual consciousness is not closed off for us but still an open door--
    jenbooks likes this.
  10. Ember

    Ember Senior Member

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    In her comment following the video, Vivi-Mari Carpelan asks Ken for advice in overcoming “these new forms of spiritual challenges:”
    I imagine that you have to join Integral Life in order to leave a comment.
  11. Sing

    Sing Senior Member

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    Ember, thanks for bringing this onto the thread. I had not read the comment section. What a clear, direct plea this is. It sure is a big individual challenge not to be either completely "managed" by this illness or to be subsumed in a continuous effort to manage it--but instead to experience one's freedom, direction and meaning independently. It doesn't seem as though it would be possible, but it is, in moments.
    merylg and leela like this.
  12. alex3619

    alex3619 Senior Member

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  13. alex3619

    alex3619 Senior Member

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    It may not be obvious, but I think there were Vikings in the Middle East way back when, even employed as mercenaries. They DID get around.
    peggy-sue, Sing, Enid and 1 other person like this.
  14. leela

    leela Slow But Hopeful

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    Sing, how eloquently and poignantly said. And yes, almost miraculously, it is possible.
    Thank you for being a shining reminder.
    jenbooks and Sing like this.
  15. Enid

    Enid Senior Member

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    Following some points in the conversation through, I'm beginning to understand the benefits of my course of high dose Gabapentin/Neurontin (to Epilepsy levels) as a modulating aid. Slept virtually day and night for about 2 to 3 weeks and came out "feeling" so much better.
    jenbooks likes this.
  16. Sing

    Sing Senior Member

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    They probably went south for the winter!
    Enid likes this.
  17. rosie26

    rosie26 Senior Member

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    I don't know if this subject has been talked about at length here before.

    But I have often wondered why we don't have more high profile people affected by ME. And why we don't seem to hear of them or about them ? Are there any high profile people out there who have ME that I have not heard of.

    I did read somewhere that Stevie Nicks from Fleetwood Mac sufferers with ME ?

    Do you know of anyone else?

    Edit. I started this as a thread, but didn't know one had already been done and Sushi has added this on to this original thread :)
  18. xks201

    xks201 Senior Member

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    There was a famous cyclist who supposedly had it. Supposedly they took an electron microscope to examine his mitochondria and found them to be deranged. He is normal now. I think in his case (according to him) it was the result of overtraining and the resulting hormonal exhaustion.
    rosie26 likes this.
  19. rosie26

    rosie26 Senior Member

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    Yes, sounds like it wasn't true ME but overtraining exhaustion and getting run down. ?
    aimossy likes this.
  20. xks201

    xks201 Senior Member

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    There's no such thing as one true cause of M.E.. M.E. means brain inflammation with muscle pain.

    This is what is limiting the treatment of this set of symptoms. It is a set of symptoms, not a disease. There is not just one cause.

    I don't know entirely the nature of his story.

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