Another study came out yesterday (Aug. 23rd) linking M.E./CFS to a retrovirus.
I've been following the news about this retrovirus since last October (when a study of positive association between M.E. and XMRV came out). It's been gut-wrenching, to say the least. Mostly I try hard to suppress any feelings of hopefulness about the possibility of tests and treatments for this illness and live the best life I can, despite being so ill.
Priority-wise, M.E./CFS gets an abysmal amount of money or research. I've been sick 8 years and there's barely been a dent in figuring out the illness....that is until the Science paper on the retroviral link first came out last fall.
With the paper published yesterday confirming an association with M.E. and a class of retroviruses, my mind turns towards possible testing and treatment. I even started imagining a life post M.E./CFS which I haven't done in YEARS!!!! Dangerous, yes I know.
I recently signed up to be part of the CFIDS association's Blood Bank. I've now signed consent and filled out the medical questionnaire. I'm hoping that perhaps I might end up in a clinical trial or something (SOON!!!) if I get accepted.
I want out. I want out of this illness if there is a possible way. I want to live a life free of having constant fatigue, weakness and flu symptoms!!!!!!!!!!!!!!!!!!!!
I'm even considering paying out of pocket for the blood test for XMRV at the private lab. Otherwise I may be waiting more years to know if I'm positive or not.
Of all the media articles on the release of the paper, this is perhaps my favourite: http://www.nytimes.com/2010/08/24/health/research/24fatigue.html?_r=2
Health wise I'm up and down the last two weeks. Compared to other Augusts, I'm probably a little sicker than usual. This past week I have a mouth full of canker sores. It's a minor thing, but makes it hard to eat. And they just don't seem to be healing. I wonder if the low WBC is playing a role?
Believe it or not, there was information regarding this in my small town local newspaper this morning. I was so happy and thrilled. Thanks for the link to the NY times article as it is much more informative.
ReplyDeleteI can only hope that this will open doors for all of us.
I agree Dawn! It is exciting isn't it? And the most important thing is that us ill people who are losing our lives to this (dare I say) disease get appropriate treatment targeted to the actual illness rather than symptoms.
ReplyDeletePlease forgive me if I've already asked you this question before, but have you had your Vitamin D and B12 levels checked recently? I was told that especially the latter will lend itself to canker sores in immunocompromised individuals.
ReplyDeleteJust a thought. And yes, hooray for a glimmer of hope. It's been a long time coming.
Wishing you better days for September.
jenji
Thanks for asking jenji, It's been a few years since my D levels have been checked. They were extremely low. I've been taking suplemental D vitamins on and off lately. But my B12 was just checked and it was fine. I have low ferritin, low WBC and neutrophils and occational elevated liver enzymes. Besides that, every thing "looks normal".
ReplyDeleteOh, I see. I had very low D, B12 and ferritin and I have to say I highly underrated the power of The D. Once I was put on prescription strength D for about four weeks the tongue sores went away. Then again, I started weekly and then bi-monthly B12 injections at that time too. Not to mention mass quantities of Boost. Ew. I can't help but wonder whether I have some sort of absorption issue going on, as my diet has been quite healthy for years.
ReplyDeleteIt gets supremely frustrating when one is trying to always solve the equation, doesn't it? Hopefully you're treating your ferritin levels, as low levels can exacerbate sleep issues or so says my sleep doctor.
best,
jenji
Hi jenji (and others),
ReplyDeleteYou might prefer whey protein to boost. It is much less sickening and still full of amino acids. Kaizen makes one that is sweetened with stevia. If you could mix it with cocoa it might be good for ferritin. I drink cocoa to keep iron up, since I don't like to eat meat on a daily basis. I used to have really low ferritin but it's better these days.
D.
Hi again jenji - I might try the vit. D prescription. Especially since you think it made a difference. My Dr. did give me one which I never filled out. As for the iron, my stomach has trouble tollerating it so I've been doing heavy duty floridex, however, my last ferritin was still only 10!! so I'm questioning how well it works....or like you said, maybe I'm just not absorbing these things.
ReplyDelete