...in a nutshell, it feels like this:

Living with ME/CFS

Shannon

Dear Shannon,

My prayers and thoughts are with you daily. You will not go thru this alone, I am your friend, I am here for you. Anytime you need to talk I am here. Keep your faith and do not net this illness be soul-destroying for you. Do not lose hope, there is something that will help you and you will find it. I will help you with that and do research. One thing I can suggest now is to find a Native American Medicine Man or Woman and speak with them. I will send you a personal email any time I find something or someone who may be able to help you.

I wish you enough of all and anything you need. Hugs and prayers,
Phyllis

Phyllis, you are truly a blessed friend. I thank you from my heart. I wish you enough, my sister.♥

Hello Shannon
I watched the Youtube film - thank you for posting it. My 17-year-old daughter Isobel has had ME for about six years now. I would say she has it moderately but even so there are days when she cannot move she is in so much pain with her joints. She has missed quite a lot of school and she obtained much lower exam results than otherwise because she found it impossible to revise or remember the facts. She is now doing art and photography which she loves but it is still a great strain for her. We read about the new research and she was excited but I told her it could be years before any treatment is available. She was treated by the ME Research Unit at Kings College Hospital in London but that takes a psychological approach and as Isobel said, they are barking up the wrong tree, it's not in the mind, it's real!
How long have you suffered? I really hope there is an end in sight as Isobel just wants to live her life (as I'm sure do you)
best wishes

Hi Joanna,

I'm so sorry to hear about your daughter. She is far too young to be experiencing such a debilitating illness. I posted some vital information on treating/curing the XMRV virus, but I can't get it to open - can you? If not, I'll try posting it again - I've been having some trouble logging in and posting on BellaOnline.

I "crashed" about 2 months ago, after a long, slow decline - about 3 years. But I've never been the most robust of individuals, so I wonder if this has been lurking in my system since early childhood. I am unable to work, can barely walk and have terrible cognative problems - my brain is often like pea soup - reading is very difficult and sometimes impossible. Feel like I'm coming down with a terrible body flu 24/7 - there are days when I have to stay on the couch, unable to leave my apartment.

Yes, this illness is very real! The first doc I went to insisted that I was depressed after only 5 minutes in his office! I'm not a depressed person by any means, but he said that didn't matter, that people can be depressed in their body, while their minds are unaffected. LOL, what a bunch of malarkey! He actually got very huffy when I refused his prescribed antidepressants. Did you hear about the woman in the UK with cfs/me who died in a psychiatric ward? Evidence showed that she died of an illness that showed up in her spinal column. So, so heartbreaking that this type of barbarism and ignorance still goes on in the world today.

I'm now seeing a compassionate and caring naturopath who is doing everything he can to understand where this illness comes from. He is very interested in the new XMRV discovery.

Thank you for posting, Joanna. There is so much to be shared on this illness and so much to be learned.

Shannon

There seemed to be some problems yesterday with posting on Bellaonline but today is ok. I am sorry you are in such a bad way. I read your posts on the Democratic Party site - does this mean you don't have health insurance? If you have any news about treatment for XMRV, please let me know. It said the virus is passed on through breastmilk, blood or semen. Sounds rather like AIDS. Maybe the same drugs will help. Isobel and I have seen so many doctors over the years and we are none the wiser. We tried acupuncture recently but Issy found it just too painful. All she takes now are painkillers. I don't know if this is connected, but she bleeds very freely from a cut or nose bleeds or periods. Do you have the same? She also has a very fast heartbeat and when she stands still, her feet go purple as the blood appears to pool there. These are the only outward symptoms, otherwise she looks the picture of health - lovely skin, shiny hair etc. This is also a problem as she just doesn't look ill.

Joanna, I just posted a new thread on natural treatments for XMRV. It appears that they are considering AIDS drugs for XMRV, but they are sooooo toxic and loaded with CFS/ME type side effects! Most AIDS patients on these drugs die of liver failure because they are so toxic. They prolong the lives of AIDS patients, but don't make them into healthy individuals. (Also, the skin cancer that AIDS patients get isn't from the AIDS, but from doing "poppers" a common recreational drug used among gay men.)AIDS Meds Side Effects

I fortunately don't have the purple feet (though sometimes my toenails do go a blueish-purple) upon standing or the bleeding issues, but, yes they can be symptoms of CFS. A pounding heart is also typical, and I experience it mostly in the evening when my cortisol levels surge. Has Issy had the ASI saliva test? CFS patients always have issues with the adrenal system - the cortisol isn't in balance, which is the cause of sleep disturbances. Do you have access to a naturopath?

I actually do have health insurance which covers my naturopath, but not natural remedies. Insurance will only pay for toxic meds - go figure!

Shannon