Re:was CFS/ME Top Doctors/ Recovered...

[Guest guest]

When I mention PWC's who had recovered, i said " even if it's

90% -- and some of them are on this list. "

Two of them who seem to me to be 100% well, say they're more like 95%. Others

tell me

they're at about 75-80%. I think they all recognize they could become sick

again, so they

avoid certain issues that may have helped screw up their immune function, like

chemicals,

allergens, and yes, too much stress. They eat whole foods, avoid plastic

containers, (one

carries his water in glass bottles), microwave ovens, etc.

Several are yes, back at work -- working LONG hours too. One came to speak at

our

support group, and by the time he left, he had been at meetings, including ours,

for a total

of over 12 hours. And he's signed up for medical school in the fall.

To me, that's recovered.

d.

> " kattemayo " wrote:

>

> > When you say PWCs have recovered...again...what definition are you

> using, how severe, how long, etc.

> > Recovered meaning 100% cured, or back to work, or greatly

> improved, with limitations?

> > Katrina

>

> Exactly.

> When the " Yuppie Flu " went through, huge numbers of people caught

> it, but most recovered. Then we started hearing about people who

> just never did and started talking to each other about how long

> this " flu " was lasting. For most people, it went on for twice as

> long as a normal flu - about 4 weeks. But when the duration

> exceeded six weeks, then we started getting worried.

> It looked like six weeks was the " cut-off " for recovery.

> Anyone who went beyond that had a good chance of becoming a chronic

> case.

> It was those people who came out of the " Yuppie Flu " early that had

> the precursor condition that one could describe as " Chronic Fatigue "

> which could last for months or years - but was just a pale shadow of

> CFS. Neither of them called the CDC on account of these fatigue

> cases - they just weren't scary enough.

> It was the people who couldn't stand up, feed themselves, read, see

> think, pump blood, that looked like the living dead - that fell

> apart in clusters that was scary enough to call in the " big guns " .

> Those people who went on to total devastation were the ones used in

> the definition of " Chronic Fatigue Syndrome " .

> Dr Cheney and Dr did not consider these lesser or recovery

> cases to be part of the chronic condition and do not include them in

> their statistics.

> That's why you'll see other CFS doctors claiming 60-95% recovery

> rates. They don't differentiate between CF and CFS.

> Their CF patients would likely have improved anyway - even without

> their therapies and excessive " specialist " charges.

> And before anybody jumps on me and blames the name for causing this

> problem, it does no good to tell them " Myalgic Encephalomylitis " or

> anything else. Dr C and P's concept of differentiation was

> symptom, pattern, AND immune based. When those other " includers "

> fail to take the entire picture into account, they had no means of

> differentiation, so they STILL throw everyone into the same basket.

> -

>

[Guest guest]

Adrienne,

There was work written up recently...published...and in Science? magazine, on

some type of stem cells for heart disease...with virtually 100%

recovery/restoration to normal!!

Dr. Cheney is formulating plans for something similar.

Katrina

>

>

> This is why stem-cell research is OUR issue, people.

>

> Sara

>

>

> ***Pardon my real ignorance: have stem cells been used to successfully fix

anything yet?

>

> I am old. I am pessimistic at best about what the next five years are gonna

bring me.

>

> Adrienne

>

>

>

>

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discussed here, please consult your doctor.

>