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Interview from 1996 with author of Chronic Fatique book, "Osler's Web"

 
Anonymous Coward
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09/09/2011 02:32 PM
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Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
[link to www.cfs-news.org]

I wish that I could break the rules and just post the entire interview here. Not just for the topic of CFS, Chronic Fatigue, or Mycephlic (sp?) encephalitis, as they are calling the condition these days, but A-because it is so "old" by www standards that I fear it will be lost, and B-because aside-from the discussion as it relates to research on this one disease, it gives a glimpse into the politicization of medical research and some fascinating things that the US and other governments did not want people to know.
Here's one quote that stood-out for me:
(quote)During the writing of Osler's Web, how were your investigations received
by the NIH and CDC officials?

Hillary Johnson (Speaker)

For starters, the nation's reputed expert in CFS, Steven Staus, refused
all requests for interviews for nine years. When I tried to acquire
records and documents that would have revealed the true nature and scope
of his research in this field, I was illegally denied them by the Freedom
of Information Act Office at NIH. I was told by Freedom of Information
Act officials at the NIH that I could not have these documents because the
public already knew everything it needed know about CFS.


I stumbled-upon a lot of new information about chronic fatigue by Dr.Googling after I experienced a hormonally induced, (I think), episode of "crashing fatigue". (it only lasts about 20 minutes-kind-of like nodding-out from narcotics looks-like)
I don't know much about the so-called, "biologics", a class of drugs that is being used for all sorts of things lately, but I also found it interesting to notice that the current CF patients who are also activists for their cause, (no joke inserted here, they really don't think those jokes are funny and they track them in the media!), are extremely interested in Ampligen, and how the recent news of the famous tennis-player Venus William's diagnoses with Sjogren's Syndrome, may set the stage for more awareness and possibly treatment with this drug-which has apparently had trouble with the FDA, and the stock market as well.
Anonymous Coward (OP)
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09/09/2011 02:40 PM
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Re: Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
And more than ten years later, a companion website by the journalist and author of Osler's Web-it looks like she still thinks that fatigue is contagious.
[link to www.oslersweb.com]
Anonymous Coward
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09/09/2011 02:44 PM
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Re: Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
Wow, thanks for posting this. I wish more people would keep up with this topic -- it is pertinent in so many ways.
tinygreen

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09/09/2011 02:46 PM
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Re: Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
i have chronic fatigue. i use cannabis to treat mine.

drugs don't work. you simply keep putting one foot in front of the other. sleep when you have to. exercise and try not to eat crappy fast food and white sugar.

best of luck to you.


5***** for bringing this subject into the light.
'it is not the duty of the police to protect you. their job is to protect THE CORPORATION and arrest code breakers.'

(sapp vs tallahassee)
Anonymous Coward (OP)
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09/09/2011 03:47 PM
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Re: Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
Sorry to hear that you have the chronic kind, and yeah I deal with mine the same way, (take a brief nap-not like I really have a choice, when it happens and then move-on), less the MJ because what I am experiencing is very temporary and related to menopause, it's more of a novelty for me like these darn soaking-wet-hot-flashes.
And yeah, I really thought that we had heard all there was to hear about it, but somehow patients got organized and they have demanded better treatment.
I also like the aspect of checking-in on someone's work/life over a decade. The author in question has some very strong opinions about the condition, and I'm sure that is what drove her to uncover certain facts----she goes-on in a more recent speech to blame the condition for her never having children. Almost accusing the disease of mass-genocide, which I bet it feels like that for her, but she was able to write and travel, and care for her dying mother for 3.5 years so unless her treatment prevented her from having healthy pregnancies, I feel that that was her own personal choice.
One thing that worries me is that it appears that sufferers have collectively rejected the idea of exercising or physical activity as an energy-booster.
If a person cannot physically get out of bed to get some momentum going, or if physical excersise really does leave them more depleted, that's one thing-but for myself I have found that physical activity gives me more energy throughout the day even-if it is hard to get started sometimes.
It does look like they have come closer to diagnostic test results too, which is something that left them open to "there is no proof/test"-syndrome, which put them at the mercy of shrinks for a real physical condition.
I hope that it is not contagious as this author seems to believe, but I bet that the next time that we hear about the ailment more in the media that they will be coming-from a stronger position, and hopefully some good treatments.
Personally, I think that you can put a lot of people diagnosed as "drug addicts" into a disease like this because a lot of the people who take drugs initially are taking them to feel better or get more energy to help them stay awake.
strangeVolt

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09/09/2011 09:44 PM
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Re: Interview from 1996 with author of Chronic Fatique book, "Osler's Web"
i have chronic fatigue. i use cannabis to treat mine.

drugs don't work. you simply keep putting one foot in front of the other. sleep when you have to. exercise and try not to eat crappy fast food and white sugar.

best of luck to you.


5***** for bringing this subject into the light.
 Quoting: tinygreen


Of course drugs don't work. You're attempting to fix something with a drug that isn't related to something broken in your system. This is most likely caused by long term deprivation of nutrients.

Look into magnesium deficiency and a gluten free diet. The medical establishment isn't going to tell you nothing that isn't dependent on the pharmaceutical industry.

[link to www.krispin.com]

[link to www.google.com]

It should be noted that magnesium, while a great stand alone mineral, should be taken with a full spectrum of minerals and vitamins.

You really want to get rid of the fatigue? Research the above and adjust your diet accordingly. Take magnesium citrate, calcium citrate, D3 and a full spectrum B complex.

Wheat and gluten are not your friends. Gluten blocks absorption of nutrients in the small intestine. Wheat is promoted as being healthy when it is not.

If that isn't enough, look into CODEX Alimentarius. The FDA and the WHO are trying to make essential vitamins and minerals a prescription. This is real scary stuff.

[link to www.google.com]

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