Re: CDC statement-early treatment can cause 50% cure

[Guest guest]

" yakcamp22 " wrote:

> 1/2 can return to their pre-CFS level of health if treatment is

> begun early?? What treatment would that be?

>

> Someone please say something good about the new CDC initiative before

> I fire off an angry email.

> Mike C

>

The GOOD news is that Komaroff said that the twenty years of debate

over whether CFS is psychological is OVER.

The bad news is that CFSers are probably going to have to spend

another twenty years asking why the " management " strategy for CFS is

psychologically based when the illness is admitted by the CDC to be

not psychological.

But at least the pot of controversy has been stirred!

-

[Guest guest]

Yeah, that part worried me, too, Mike. They will evantually have to face their

folly if the are proposing crap, but an awful lot of people would suffer first.

Adrienne

CDC statement-early treatment can cause 50% cure

This statement below is from the 'new' CDC awareness initiative.

<<Because no cause for CFS has been identified, treatment programs

are directed at relieving symptoms, with the goal of the patient

regaining some level of function and well-being. Patients' prognoses

greatly improve with early intervention. At least half of those with

CFS can return to their pre-CFS level of health if treatment is

begun early.

<<< end quote>>>>

It came from this site:

http://www.cdc.gov/od/oc/media/pressrel/r061103.htm

1/2 can return to their pre-CFS level of health if treatment is

begun early?? What treatment would that be?

Someone please say something good about the new CDC initiative before

I fire off an angry email.

Mike C

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]

I read the whole transcript at

http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=364<http://www.cdc.gov\

/od/oc/media/transcripts/t061103.htm?id=36410>

10 <http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=36410>

and I don't hear anyone, not even Reeves, saying the treatment is

psychological. I hear people talking about activity managment, drugs for

pain and sleep problems. Reeves is a snake and we should still try to get

rid of him, but I got the distinct feeling that he's been made to heel. The

presence of Komaroff and Klimas at this thing speaks volumes, though I

wonder how they got Komaroff and Klimas to talk so nice about the CDC.

The activity managment and sleep stuff is critical. I still don't know why

they think 50% fully recover, if that's what they're saying.

It does look like we might avoid the CBT/GET nightmare now going on with the

British NHS. Nothing in this transcript sounds like Simon Wessely. In fact

Wessely is probably having fits right now over this.

- Bob Niederman

On 11/3/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

>

> The GOOD news is that Komaroff said that the twenty years of debate

> over whether CFS is psychological is OVER.

>

> The bad news is that CFSers are probably going to have to spend

> another twenty years asking why the " management " strategy for CFS is

> psychologically based when the illness is admitted by the CDC to be

> not psychological.

>

> But at least the pot of controversy has been stirred!

> -

>

>

>

>

> 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]

www.ihmf.org/journal/download/HHV-6Report.pdf

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I am not sure if THIS version of the meeting highlights has been

posted, someone posted something similar from HHV-6 foundation--

(if this wasn't the paper then the VGC is working), at least it

deserves a bump for those who haven't seen it.

HHV6a-R is CD46 (isn't that the same R for HIV?), so they need to find

receptor for 6b so it can be blocked.

Assays section says antibody avidity assay and electrochemiluminescence

assay differentiates active vs. latent. Came across the loop

amplification technique elsewhere, but it also seems sensitive and

specific (95%).

Antivirals section at end-- what is CMV423 (new drug)--google=

http://cat.inist.fr/?aModele=afficheN & cpsidt=1059897

http://cat.inist.fr/?aModele=afficheN & cpsidt=15514497

(YES, it hits viral TK, and looks very safe, non-nucleoside analogue,

AVENTIS)

and ether lipid esters of cidofavir more potent (these sound more

lipophilic).

So CMV423 and the next gen cidofavir coming...

[Guest guest]

this is something else entirely. interesting, though.

On 11/4/06, spite.check <spite.check@...> wrote:

>

> www.ihmf.org/journal/download/HHV-6Report.pdf

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> I am not sure if THIS version of the meeting highlights has been

> posted, someone posted something similar from HHV-6 foundation--

> (if this wasn't the paper then the VGC is working), at least it

> deserves a bump for those who haven't seen it.

>

[Guest guest]

I have read all the CDC studies and cant think of any reason for them to say

this! Its kind of an unreal statement - I assume it comes from one of their

ongoing studies. I sure saw a physician early - didnt do any good with me. The

only treatment they could be talking about is CBT - thats the only one with alot

of studies. I think you should fire that e-mail.

yakcamp22 <yakcamp22@...> wrote: This statement below is from

the 'new' CDC awareness initiative.

<<Because no cause for CFS has been identified, treatment programs

are directed at relieving symptoms, with the goal of the patient

regaining some level of function and well-being. Patients' prognoses

greatly improve with early intervention. At least half of those with

CFS can return to their pre-CFS level of health if treatment is

begun early.

<<< end quote>>>>

It came from this site:

http://www.cdc.gov/od/oc/media/pressrel/r061103.htm

1/2 can return to their pre-CFS level of health if treatment is

begun early?? What treatment would that be?

Someone please say something good about the new CDC initiative before

I fire off an angry email.

Mike C

---------------------------------

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[Guest guest]

cort johnson <cortttt@...> wrote:

>

> I have read all the CDC studies and cant think of any reason for

them to say this! Its kind of an unreal statement - I assume it comes

from one of their ongoing studies. I sure saw a physician early -

didnt do any good with me. The only treatment they could be talking

about is CBT - thats the only one with alot of studies. I think you

should fire that e-mail.

>

Agree.

Dr Gerberding includes " myalgic encephalomyelitis " as one of the other

conditions which " mimics chronic fatigue " .

Do you know of anyone familiar with ME who could formulate such a

sentence?

I think we all need to fire off that e-mail.

-

[Guest guest]

I only have one word to say to that ...

crap!!!

I got my CFS diagnosis fast (within 6-8 mths of me getting ill,

considering one has to have the exhaustion etc for 6 mths before

diagnosis can be made, I couldnt have gotten it any quicker. Early

diagnosis helped me none. They have no real treatment as we all know

for it anyway..

I think they have a very long way to go with all this.

>

> This statement below is from the 'new' CDC awareness initiative.

>

> <<Because no cause for CFS has been identified, treatment programs

> are directed at relieving symptoms, with the goal of the patient

> regaining some level of function and well-being. Patients'

prognoses

> greatly improve with early intervention. At least half of those

with

> CFS can return to their pre-CFS level of health if treatment is

> begun early.

> <<< end quote>>>>

>

> It came from this site:

>

> http://www.cdc.gov/od/oc/media/pressrel/r061103.htm

>

> 1/2 can return to their pre-CFS level of health if treatment is

> begun early?? What treatment would that be?

>

> Someone please say something good about the new CDC initiative

before

> I fire off an angry email.

>

> Mike C

>

[Guest guest]

Kknowng early that you have CFS may not do you much good as regards

treatment, but if you are properly informed about the disease, it can mean

that you cut back on exertion and thus avoid worsening your condition, sort

of reverse CBT.

Naomi Weisstein

Re: CDC statement-early treatment can cause 50%

cure

> I only have one word to say to that ...

> crap!!!

>

> I got my CFS diagnosis fast (within 6-8 mths of me getting ill,

> considering one has to have the exhaustion etc for 6 mths before

> diagnosis can be made, I couldnt have gotten it any quicker. Early

> diagnosis helped me none. They have no real treatment as we all know

> for it anyway..

>

> I think they have a very long way to go with all this.

>

>

>

> >

> > This statement below is from the 'new' CDC awareness initiative.

> >

> > <<Because no cause for CFS has been identified, treatment programs

> > are directed at relieving symptoms, with the goal of the patient

> > regaining some level of function and well-being. Patients'

> prognoses

> > greatly improve with early intervention. At least half of those

> with

> > CFS can return to their pre-CFS level of health if treatment is

> > begun early.

> > <<< end quote>>>>

> >

> > It came from this site:

> >

> > http://www.cdc.gov/od/oc/media/pressrel/r061103.htm

> >

> > 1/2 can return to their pre-CFS level of health if treatment is

> > begun early?? What treatment would that be?

> >

> > Someone please say something good about the new CDC initiative

> before

> > I fire off an angry email.

> >

> > Mike C

> >

>

>

>

>

>

> 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]

" tania_selth " <tania_selth@...> wrote:

>

> I only have one word to say to that ...

> crap!!!

>

> I got my CFS diagnosis fast (within 6-8 mths of me getting ill,

> considering one has to have the exhaustion etc for 6 mths before

> diagnosis can be made, I couldnt have gotten it any quicker.

Early diagnosis helped me none. They have no real treatment as we

all know for it anyway..

>

The original describers of CFS have no six month waiting period.

Never did and still don't - despite what some are saying. (Probably

just another one of the innumerable " digs " that are taken to try and

undermine the entire concept of " chronic fatigue syndrome " ).

What they said was " Illness PERSISTS at least six months " .

Not " Illness MUST persist AT LEAST six months " .

We were sudden onset cases - literally dropped overnight.

Went from active to disabled in a day, (and the idiots still

say " deconditioning " )

When new cases " dropped in " to Dr Cheney and Dr s office

with all the same symptoms - the tests were done and they were

diagnosed - no waiting.

I can just imagine the ridiculous imposition of this stupid " six

month " waiting period before diagnosis.

You go to the doctor right away, and he says " OK. You may have CFS,

but not yet. Come back in six months " .

And then you sit there counting down the minutes:

5. 4. 3. 2. 1. BINGO! NOW I have CFS.

As you say, early treatment made no difference.

-

[Guest guest]

I agree Naomi. But the CDC said early treatment, not diagnosis is

very important. After I had an infectious disease doc dx my w/ CFS,

my primary doc told me to " return to normal activities " . So, they,

the CDC and medical community in general w/ some exceptions, still

haven't caught on to the fact that if you are dx'd w/ CFS, you should

*lower* your levels of exercise and exertion, as you say below.

As someone else said, the CDC statement about early treatment really

lessens their credibility in regards to CFS, unless, of course, they

mean that early treatment *is* lowered exertion for a while.

Mike C

In , " Naomi Weisstein " <utopia1@...>

wrote:

>

> Kknowng early that you have CFS may not do you much good as regards

> treatment, but if you are properly informed about the disease, it

can mean

> that you cut back on exertion and thus avoid worsening your

condition, sort

> of reverse CBT.

>

> Naomi Weisstein