Ace

[Guest guest]

Hi Walter & Ace,

very well said Walter. The old addage " if it sounds to good to be true, it

probbaly is " , definitely applies to anyone saying they can " cure " ME/CFS

especially when their patient populations, might have something besides CFS that

they maybe do help. That doesn't mean it helps true CFS/ME patients.

Especially without having a long term proven, verifiable track record of

continued results with no high remissions, of patients that strictly meet all

the CFS/ME criteria, using the Canadian Consensus Criteria as well, otherwise

the patient populations are full of not truly CFS/ME populations, so any results

would be skewed, and therfore, very inaccurate. Otherwise to me, they are snake

oil salesmen, and they in my opinion are full of it, and just wanting to lighten

your pockets. Your stats on the $$$$ to be made shows the true motivation behind

some of these people(if you can call them that).

I have the most benefits using prescription pain killers, Ambien for sleeep,

and L-Lysine, Bee Pollen, Vit C & Vit D in good amounts, Vit B complexes, and a

some others that do seem to help some most of the time. Still have pain, and fog

& other issues as we all do, but not as ravaged as I had been previously. Pacing

of chores, tasks, to me is the best advice I can give, even though I still can

overdue it and pay for it dearly later(like I am right now). it is a heavy

burden, and a delicate balancing act, and so hard to do sometimes, but I have

hope and continue to just do the best I can for MYSELF. Nobody else, no one

elses standards or whatever, do what you can, and let everything else go.

Hopefully soon we will have some true treatments that can effect a REAL cure.

Support the WPI and others that are doing the retroviral work, which I too

believe is the under-pinning of it all.

JMO, Take care, Randy

Ace

Posted by: " walter reed " mandorlaus@... mandorlaus

Sun May 1, 2011 5:27 pm (PDT)

i wish we had a central clearinghouse or information center that organized

treatment/outcome data in a systematic fashion whereby we could look refer to it

to determine... ...who got well doing what treatments

ACE, I think we have all spent lots of money on protocols we hoped would

work...or protocols that other people said " cured " them ... if u decide to

spend your money on getting amalgams removed, let us know if it helped you.....

my own belief, which may be wrong, is there is a very strong bias amongst many

" alternative " health practitioners to simply make a buck off of us.....Dr.

Teitelbaums website had a link on it for doctors informing them how to make

$400,000 working 20 hours per week treating CFS patients if they would pay him

to attend his " treating CFS patients " seminars.... ...the doctor I went to in

New York city back in 1990 ended up costing me $10,000 for 3 months of treatment

before he died of a cocaine overdose ... a doctor here in honolulu was charging

$200/injection of H2O2 which costs about a nickel at a drugstore...

your amalgam guy is probably gonna make some nice cash off of you and promise

you its gonna help you.....

every naturopath, chiropractor, holistic health doctor etc i have ever

interviewed has said they have cured some CFS patients.... maybe they have...and

maybe they havent....I just never meet or hear about any cured CFS patients....

a woman in my building said she recovered from CFS for many years....i asked her

how she is doing now....she said terrible but that it was just her thyroid and

she is under the care of a compassionate naturopath who is treating her

thyroid...not her CFS .. funny how her CFS and thyroid symptoms are similar.

thanks for posing the question.... i think we need to come together as a group

sometimes and ask ourselves... .Is anything working? What is real and what is

bullshit.

aloha

Walter