A CFA Member in Desperate Need

[Guest guest]

Hello,

I'm writing to you out of desperation. I have a friend, Mike Dessin,

who is in an assisted living facility in Tucson AZ. He is extremely

ill with M.E. He also has a viral brain infection, EBV,CMV, HV6/7,

Lyme, and many other things I'm sure. Mike has become virtually

paralyzed and cannot leave his bed. Today he has begun to have

visual disturbances. His mind is not as sharp as it was so he's

having problems communicating enough to make calls or send emails to

even try getting help. His other friends and I do believe that he is

dying.

Mike's physician at the facility knows nothing about CFS/ME and has

stated that he doesn't really know how to treat him. Today, the

facility called in a social worker who carted him off for a psych

evaluation. They feel he isn't making good medical decisions. He has

been on herbs, vitamins, and supplements. Now he would like to

consider antiviral.

My friend desperately needs an advocate who can speak for him.

Someone who believes that these illnesses exist and know how close

to death one can be when suffering from them. I have tried

contacting several organizations with no luck. Is there anyone at

all that you can connect me with who might be able to help? My

friend is dying. I have fibromyalgia and wonder if this could happen

to me. This shouldn't be happening in America.

[Guest guest]

_Fibromyalgia Network_ (http://www.fmnetnews.com/)

I found this site and hope it can be useful. My heart goes out to your

friend and to you. It is just so very sad to know these things are happening

and

our government just drags its feel. After all these many years I wonder why.

Please keep us posted and your friend will be in my prayers.

[Guest guest]

_Fibromyalgia Network_ (http://www.fmnetnews.com/)

I found this site and hope it can be useful. My heart goes out to your

friend and to you. It is just so very sad to know these things are happening

and

our government just drags its feel. After all these many years I wonder why.

Please keep us posted and your friend will be in my prayers.

[Guest guest]

Though I don't know of anyone, I will certainly be praying for an answer. I

hope someone else can come up with a name for you. I will be thinking and

praying for all of you.

Take care,

English

[Guest guest]

Though I don't know of anyone, I will certainly be praying for an answer. I

hope someone else can come up with a name for you. I will be thinking and

praying for all of you.

Take care,

English

[Guest guest]

I wish I had an answer or could help. Any way his doc would be willing to

give the Valtrex/Valcyte a try? Sounds like he might be a good candidate. I

can only send my

blessings and good thoughts. Maybe getting hold of Montoya (who is doing the

study) or one of the other experts, Elaine de Frietas, ,

Byron Hyde, jump in anyone, a lot of websites have info about these docs.

The Canadian Consensus doc might be a place to look, for a doc that cowrote

it.just brainstorming here. Can't stand that this is happening, and I fear

the same fate. Good Luck, Aylwin xox

[Guest guest]

I wish I had an answer or could help. Any way his doc would be willing to

give the Valtrex/Valcyte a try? Sounds like he might be a good candidate. I

can only send my

blessings and good thoughts. Maybe getting hold of Montoya (who is doing the

study) or one of the other experts, Elaine de Frietas, ,

Byron Hyde, jump in anyone, a lot of websites have info about these docs.

The Canadian Consensus doc might be a place to look, for a doc that cowrote

it.just brainstorming here. Can't stand that this is happening, and I fear

the same fate. Good Luck, Aylwin xox

[Guest guest]

Hello,

I am so sorry to hear about your friend Mike.

I could feel your sense of frustration in not knowing where to look

for help.

I did a google search for you and also checked my bookmark lists

that I use.

I am familiar with the Fibromyalgia Network newsletter but I didn't

realize they are out of Pheonix AZ. I checked online and they have

a list of support groups in the US. You can call and ask them for

help. I do not know if there is a support group in Phoenix but I am

sure whoever you talk to will do their best to help you out.

Here is the information:

Mailing Address: Fibromyalgia Network

PO Box 31750

Tucson, AZ 85751-1750

Phone Number: (weekdays 9:00 a.m. to 5:00 p.m. MST)

Toll-free; valid throughout North America

Valid everywhere else

Fax Number:

Their website is: www.fmnetnews.com

I admire your efforts for what you can do to help your friend Mike.

This is what any of us would want for one another if it was one of

us instead of Mike.

Don't give up!

in North Carolina

[Guest guest]

I don't know of anyone in Tucson - Have you looked into the Program in

Integrative Medicine at the University of Arizona's Health Sciences Center in

Tucson? Maybe they can refer you to someone with a background in ME or CFIDS.

Claudine