Re: Dr. Cheney

[Guest guest]

No, I have never been to see him but might consider. Please report back

your thoughts, tests, etc.

For that amount of time and money I would hope that you will get relief from

all your symptoms.

Keep us posted.

Lois

> I have an appointment with Dr. Cheney at the end of July. The big question

> is, have any of you been to see him, and were you helped? It costs $600 per

> hour!! There will be two full days of " stuff " , so I figure we're looking at

> 14 hours times $600. This doesn't include any of the lab work. Or the flight

> from the west coast and the motel etc. I am so tired of being sick for

> decades - I'm willing to see Dr. Cheney, but sure would like some more

> concrete feed back before I go to all this expense.

[Guest guest]

Hello,

Yes, I saw Dr. Cheney and yes, I was helped. It was in 2005-06, w/3 years on his

protocol for my specific case. ( Sick w/sudden viral onset ME/CFS since 1985,

and many subsequent complications ).

I had that period's window of family members' funding, compared to my usual

little funding. It was completely worth it to me and them, and I would return in

a heartbeat, if able.

I am again declining, since losing the money for most treatment. I actually have

less than before, due to extreme budget cuts and the " recession "

FWIW, he explains clearly, tho complexly? to each patient how and why his

thinking/their treatment evolves and changes.

Plus, he's keeping up with other research/researchers on ME/CFS. Through

Conferences and personal contact, they communicate more than they did in some

previous years.

As for " resolving all symptoms " , we have, as of now, an extremely complex and

incurable disease. Many of his patients, including me, were close to dying, and

are here, years later, so that says alot. But I also had a significant

mprovement in quality of Life. And even now, still benefit from what I learned.

Dr. Cheney himself was dying a few years ago, and closed his practice. He then

had a successful heart transplant. While he was recovering, an NIH study

(Peckerman/Natleson) wa published, which revealed another heart abnormality in

" CFS " patients, which also predicted the severity of disability....Diastolic

Dysfunction, which was barely being studied in Mainstream Cardiology.

So, as he improved, he re-opened his clinic to pursue this exciting research

development. That was early 05 and I went in the Spring.

His work has advanced by leaps and bounds since then, using several " cell signal

factors " , for instance, and now, he's actually doing (cord) stem cell therapy on

10 or so patients, with promising results so far.

The Cardiac findings are " an organising principle " , around which he works, tests

and treats. But are not considered the cause, and it's all wayyyy more complex

than just cardiac alone. Multiple " downstream effects " , from whatever was the

original cause and the heart abnormalities.

I'd suggest catching up on his recent lectures/presentations via DVD and text.

I think all are available on the Dallas Fort Worth CFIDS Support Group's

website.

You can also look on the website of The ME Society of America, for some research

findings.

At least, you will become accustomed to his style and some of the language of

the findings.

Even more important is to get yourself organised. Meaning your medical records

and methods of note taking, taping, etc., plus, of course, yourself, and brain.

You will be in a comfortable office and receive much attention and information

you'll be absorbing for a long time lol. I learned more than I had in 20+ years.

Dr. Cheney is a brilliant and fascinating Doctor, and his continued enthusiasm

in studying/treating ME/CFS and via YOUR particular case, is quite infectious,

so to speak!

Hope this helps...if you are set up with appointment, and want to backchannel

me, you can.

TC,

Katrina