Famous (and sort of famous) ME/CFS sufferers

jenbooks

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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.
 

Sushi

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I love putting it in its place like that Sushi.
BTW are you still doing gcmaf? I am probably going to get my nagalase tesed next week and possibly consider very very low doses if I have elevated nagalase. I'm very sensitive and end to inflammation, so...

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

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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.
 

Sing

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I was researching an apparent outbreak of ME at my college Brown and in Providence, RI where it is located after noticing several other people on PR went to Brown. Anyway, Leila Pahlavi, Brown '92 had ME and died at the age of 31. The death at first attributed to ME but was later chalked up to other causes. From the published accounts, I suspect the ME was a main cause. Her father, the Shah of Iran, died of Non-Hodgkin Lymphoma. I will get around to including her in the Wikipedia lists.

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

Sing

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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--
 

Sing

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I've always been a fan of Ken Wilber, and this video is really great. He said a lot of very important things.
I just wish he had mentioned that he was able to keep writing thanks to what I imagine is scores of devotees
taking care of his everyday needs.

I think this is one of the hidden, tragic side effects of this illness--just bathing, doing laundry, feeding oneself
uses up the tiny energy bank account and there is little, if anything, left over.

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

jenbooks

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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.
 

Sing

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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.

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--
 

Ember

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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 had no idea - and especially not that Ken suffers from one of the most terrible chronic illnesses around at the present day - A TRUE CHALLENGE. He didn't say what condition it is but my research confirmed that it's CFS, or ME as it's called nowadays, i.e. chronic fatigue syndrome (the colloquial term)....

I know loads of people with ME, in fact the amount is staggering and totally out of proportion compared to the size of my (general) social circles. I would so love to see Ken write something about all this, not least how one can manage better through spiritual practice. Ken says he does actively manage the condition inpspite of the flare ups and I would love to hear how. All this "managing" so easily takes over as one's main concern in life, and many of us simply cannot function in any ways that are pretedetermined by society or various philosophical systems. One truly has to invent one's own life - that in itself becomes a spiritual challenge.

Ken; please please write about the relationship between illness and spirituality and how we can overcome these new forms of spiritual challenges, i.e. all these terrible and weird illnesses that cause so much suffering in the form of debilitating fatigue and low self-esteem, among other things.
I imagine that you have to join Integral Life in order to leave a comment.
 

Sing

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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.
 

leela

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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.

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

Enid

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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.
 

rosie26

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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 :)
 

xks201

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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.
 

xks201

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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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