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

[Guest guest]

That would be nice, cranking along at speed, but I would not call myself

recovered as long as I was taking gobs of pills every day- and even worse having

a relapse over my head. Especially if I was reminded of it not by how much I can

do but by how I felt if I overdid it at all. To me recovery would not just

reflect functionality, but also peace of mind about my status.

This is just my opinion, for me.

We do know here of people who worked hard at it, " recovered, " and then relapsed.

Maybe I need to distinguish between recovered and healed. I would settle for

recovery, but what I really would want is healed.

Adrienne

----- Original Message -----

From: kdrbrill

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.

> -

>

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

On Jul 15, 2006, at 10:06 AM, Adrienne G. wrote:

> That would be nice, cranking along at speed, but I would not call

> myself recovered as long as I was taking gobs of pills every day-

> and even worse having a relapse over my head. Especially if I was

> reminded of it not by how much I can do but by how I felt if I

> overdid it at all. To me recovery would not just reflect

> functionality, but also peace of mind about my status.

> This is just my opinion, for me.

> We do know here of people who worked hard at it, " recovered, " and

> then relapsed. Maybe I need to distinguish between recovered and

> healed. I would settle for recovery, but what I really would want

> is healed.

Adrienne, thanks. This is the same point I keep making here. I am not

" cured " as long as I'm having to monitor energy expenditures, suffer

injections, and take bowls full of pills and potions every day to

maintain my current state -- however good that state might be. These

things can do a lot to aid recovery -- but as long as my recovery is

dependent upon them, I am in no sense " cured " or " healed. " Even if I

should ever get back to 100% functionality, the fact remains that all

I'm doing is managing my illness successfully. I've still got it, and

will still be wrapping my life around its demands.

And, as you point out, in this state, there's always the very real

risk of relapse. That's what I mean when I say that I suspect " real "

CFS has no cure rate. It's like AIDS, or diabetes: you have it for

life. The best you can hope for is good-enough management that will

enable you to make the most of that life. It's not going away.

There's good news, though. If Rich's current lines of inquiry do

yield a common set of genetic SNPs, then gene therapy may hold out

hope of a real, honest-to-God cure -- the kind that will allow us to

give up the treatment regimes and simply get up and go have full,

busy days like everybody else does.

Sara

[Guest guest]

There's good news, though. If Rich's current lines of inquiry do

yield a common set of genetic SNPs, then gene therapy may hold out

hope of a real, honest-to-God cure -- the kind that will allow us to

give up the treatment regimes and simply get up and go have full,

busy days like everybody else does.

Sara:

My understanding is diametrically opposite; that if genes are interfering with

detox they will always do so, and the best to be expected is more targeted use

of supplements etc. That is, just more successful management. Since we cannot

entirely avoid toxins. (Esp. those that are generated w.in?) I would like to

hear from Rich if I got that right. I have cc'd him.

Adrienne

[Guest guest]

On Jul 15, 2006, at 12:13 PM, Adrienne G. wrote:

>

> There's good news, though. If Rich's current lines of inquiry do

> yield a common set of genetic SNPs, then gene therapy may hold out

> hope of a real, honest-to-God cure -- the kind that will allow us to

> give up the treatment regimes and simply get up and go have full,

> busy days like everybody else does.

>

> Sara:

>

> My understanding is diametrically opposite; that if genes are

> interfering with detox they will always do so, and the best to be

> expected is more targeted use of supplements etc. That is, just

> more successful management. Since we cannot entirely avoid toxins.

> (Esp. those that are generated w.in?) I would like to hear from

> Rich if I got that right. I have cc'd him.

That's the best we can do *now.* But if the causative genes can be

identified (which is what Rich is actively trying to do at the

moment ) and then corrected so they function properly (which is

possible on a limited basis with current genetic medicine techniques

-- although these are still fairly primitive compared to where

they'll be five years from now) then we will no longer need to

supplement. The problem will be fixed at its source, for good.

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

Sara

[Guest guest]

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

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

On Jul 15, 2006, at 1:20 PM, Adrienne G. wrote:

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

> successfully fix anything yet?

You may have missed it, but stem cell research is all but dead in the

United States, and let's give a big shout-out for that to the people

who also brought you abstinence-only sex education and " intelligent

design. "

However, it continues apace in Europe, Asia, and Canada, where the

breakthroughs that will yield medicines are happening very quickly.

The field is changing on a month-to-month basis now.

In non-stem-cell based medicine, there are already gene therapies

that use specially-cultivated bacteria to infect aberrant cells (like

cancer cells) and implant new, more functional genetic material. It's

absolutely possible that our dysfunctional genes, if identified,

might be altered the same way.

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

> are gonna bring me.

There's big reason for hope on this front, particularly if you live

somewhere other than America. This is the next big tech revolution,

and the US government has pretty much decreed that the country is

going to stay in the Dark Ages rather than have its share of it.

Sara

[Guest guest]

I think Cheney talked about somebody in Europe named Drexler who

injected a patients with his own bone-marrow and got good recovery -

of either CFS or cardiomyopathy. I think he said later it was

something in the marrow iother than the stem cells.

- Bob Niederman

On 7/15/06, kattemayo <kattemayo@...> wrote:

>

> 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