I had meant to post today about changing my blog template yesterday. Yes, of course I use a template. Yes, I use WordPress.com not WordPress.org because I retired from being a designer and have no patience for html. But argh(!) 77 templates to choose from and I liked none of them for my blog. This was the only one I could live with, and now I’m not sure I can live with it. The templates are great for writers, who need lots of little cubbies for information, but I wanted something romantic, something compelling and delicious, and I didn’t want to pay for it. I also didn’t want to look like a 16 year old girl, a business person, or a real writer. I am an artist. I write about moods, mine mostly. And now I can’t find anything for my blog to wear on my budget.
But enough about small things, let’s talk about big things – huge things! Let’s talk about…
The mud puddle
I have Chronic Fatigue Syndrome. Chronic Fatigue Syndrome (CFS) has been in the news for the last two weeks because of a dramatic scientific research article about the discovery of a retrovirus called XMRV in CFS patients.
Some simple facts, “Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications…
…CFS is characterized by debilitating fatigue and chronic pain, among other symptoms, but diagnosis is generally made by ruling out other diseases, and there are no specific treatments….
…Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person’s immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore-Peterson Institute and one of the lead authors on the paper.” – Wall Street journal
So, somewhere around 17 million people are stuck in a mud puddle mislabeled as Chronic Fatigue Syndrome. Currently there is no test or cure to offer sufferers. I have been cycling back and forth between excitement that XMRV might be the cause of CFS and fear that XMRV might be the cause of CFS.
Retroviruses like XMRV and HIV are fearsome creatures! Who wants to be diagnosed as having HIV? Raise your hand. I thought so. Who wants to be diagnosed as having XMRV? Maybe someone who, for twenty years, has had no idea what she has, no idea why she never regained her health, why she keeps relapsing into a severe flu-like illness, and why she has lost over half her ability to function and support herself as she was accustomed to before illness struck.
Why fish around?
Because finding the cause will legitimize CFS as a disease, not some amorphous syndrome. Testing will be developed and and a more definitive title will be applied. Treatments will be found. I can’t bring myself to hope for a cure yet. To have my life back… I can’t imagine.
There has been an appalling lack of government funding for scientific research into the disease. It took private funding at a private lab to make this discovery. Annette and Harvey Whittemore have a daughter suffering from CFS. They founded the Whittemore Peterson Institute, which made this new discovery – a retrovirus currently active in the blood of CFS patients, one that can hack into the immune system, into your very DNA.
I need to know what this is in my lifetime. I had given up believing I would. There is no silver lining to having CFS. But maybe this new finding will be the help we need to get some action on this now – now that it may be affecting the blood supply as undetected HIV did in the past. Fish in pocket.