If you fall in the mud puddle, check your pockets for fish.

post 10.22.09


If you fall in the mud puddle, check your pockets for fish.    – author unknown

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.

8 thoughts on “If you fall in the mud puddle, check your pockets for fish.

  1. Anyone scared of XMRV ??

    Never in my life will I forget the minutes, the seconds, when I was reading the New York Times article my daughter had forwarded to me.
    I felt nausea, my throat seemed to tighten and I felt shaky.
    I must have stared at that article for at least 30 minutes.
    I did not like it – but I knew it was very likely true.
    Actually, something I had been waiting for, for almost 25 years.
    I had always hoped I would live to hear the answer to this awful puzzle!
    And somehow, I guess, I assumed, I would be happy at that moment.
    Don’t ask me why.
    I mean, what was I expecting?
    A hidden Vitamin C-deficiency that can be fixed immediately with a special Vitamin supplement ?
    A bacteria that is sensitive to a certain combination of antibiotics plus something?
    A certain Mycoplasma?
    Off course, that could not be.
    Just as dramatic and horrifying as the disease, had to be the cause.
    Why did I not foresee that?
    And why is this brilliant scientific discovery not filling me with joy?
    Validation? I turned my back to worldly opinions many years ago.
    Treatment? Why do I not rejoice at the idea of Anti-Retrovirals?
    Why does the similarity to Aids worry me?
    Why do I feel that millions of families might have deep trouble
    with the question of transmission alone, not to mention a constant concern
    to not infect anyone else?
    Why does a Retro-Virus similar to Aids seems to me as nightmarish
    as the disease itself?
    The match then is perfect as far as suffering is concerned –
    So perfect that I will reconsider my complaints of my non-validated, non-proven and not-explainable, and, yes, worsening, illness.
    However – I do see it – like a dramatic cloud just rising afar,
    in front of us, or, better, among us, among all of us.
    Am I the only one? Am I a terribly negative person?
    I see a monster, a big monster, way surpassing its sibling and/or
    precursor, HIV,….XMRV looks much bigger to me!
    There again is that feeling I had at first.
    XMRV – Can I trade you for a metabolic disorder?
    Genetic defect? It seems, I cannot, not anymore.
    But, Jubilant, I can’t be – with XMRV –

  2. @ Sabine Yes, I had written “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.”

    I am afraid of more than just XMRV. At my age all sorts of things can pop up. But I’m more afraid of living with this illness the rest of my life without knowing what it is or what to do about it. There would be some certainty with a smoking gun. I knew it wouldn’t be something simple, not after all this time.

    FYI: Your link back to you only went to my Facebook?

  3. @ Blume it’s been awful for a long time though, as you know. We need to know what this is, so I hope they find out soon. There might be treatments, although some of us aren’t sure we could tolerate them.

  4. Wow, I come over to catch up and it’s all different! Hooray for change 🙂

    I can’t imagine what this must be like exactly, as I don’t suffer from CFS, but lst year I went through an arduous 6 months of illness and misdiagnosis for a problem I ended up diagnosing myself through the internet. I took the solution to the Doctor and had to argue for the cause of the illness to be removed – no cost to them other than a doctor’s appointment, gah! I do remember the huge relief at finally knowing what the hell was wrong with me after such poor help, so I think I can sympathise on that front.

    I hope that this report brings medical science a step closer to helping CFS sufferers.

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