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Camps Bay Sunset December 2010

Posted by amber | Portfolio | Posted on December 22nd, 2010

Blood Donation and CFS

Posted by amber | Meds | Posted on December 20th, 2010

Blood Donation, XMRV & Chronic Fatigue Syndrome

(please click this link to see actual link)

The questions came up soon after the first study of XMRV in chronic fatigue syndrome — should people with chronic fatigue syndrome give blood?

Canada says “no.”  Canadian Blood Services acknowledges that there’s no conclusive link between the retrovirus and chronic fatigue syndrome, or any other disease for that matter, but the agency says it prefers to err on the side of caution.  It’s the first country to make this move.

I’m sure some of us are worried about a stigma that could arise from something like that, and I think it is a valid concern.  However, it seems to me like a choice between being considered “crazy” and “infectious.”  Yeah, it’s lousy either way, but at least people can’t say you aren’t sick and be afraid of catching it at the same time.  That kind of stigma is bound to be the flip side of the condition being validated as an infectious viral disease.

Overall, though, I think the Canadian folks have probably made a wise decision.  If research eventually finds XMRV doesn’t cause disease, fine — lift the restriction.  If, however, future research shows a definite causal like to chronic fatigue syndrome, prostate cancer, or any other illnesses, how many people will the ban have protected?  Hundreds?  Thousands?

It’s hard to quantify, but if the original research was right, about 3% of healthy people could carry XMRV.  If 3% of blood recipients get tainted blood, they could then pass XMRV along to their children, sexual partners (according to preliminary transmission studies), and anyone who gets blood any of those people may donate down the road.  We don’t yet have the full picture of how XMRV is transmitted, so there may be other ways to spread it as well.  Pretty soon, you’re looking at a whole lot of people who are infected and could have the potential to develop something pretty nasty because of it.

XMRV is only the 3rd retrovirus to be conclusively identified in humans.  The first was HIV.  The second one, HTLV, is linked to leukemia and lymphoma.  So out of 3 known retroviruses, we know 2 can be deadly.  So far, XMRV is tentatively tied to 1 potentially fatal disease (prostate cancer) and 1 life-long debilitating illness (chronic fatigue syndrome).  To me, it makes sense to keep XMRV from further contaminating the blood supply until we know more about it.

In the U.S., the group that assesses threats to the blood supply is called the AABB.  It last met in August — 2 months before the research linking XMRV to chronic fatigue syndrome was published.  A Wall Street Journal article talked to an AABB committee member who said she’d give it a “yellow” threat designation, which is the groups’ lowest ranking.

Taking the donation idea a step farther, one of my Twitter friends recently posted this:

“Changed my organ donor status coz didn’t think it would be a good idea 2 put organs from someone with CFS into someone else.”

Because I don’t have chronic fatigue syndrome and research into XMRV in fibromyalgia is too miniscule to even be called preliminary, I’m not to the point of changing my organ-donor status.  If I had chronic fatigue syndrome, though, I’d have to give it some serious thought.  I certainly don’t want to inflict illness upon anyone, especially when their health has already taken a serious beat-down.

What do you think?  Do you think it’s too early to worry about it, or should we err on the side of caution?  Would you give blood or donate your organs, knowing about the possible XMRV connection to your illness?

Merry CFS and a Happy M.E.

Posted by amber | My Diary | Posted on December 20th, 2010

Christmas time is not for the faint hearted and definately not for those of us with CFS.

1. LATE NIGHTS – there are many of these at this time of the year and this does not suit the vertically challenged as we need our 8 hours.

2. ALCOHOL – i am  not sure about you but I can not drink with out feeling truly gross the next day and Christmas and New Year is all about adding more punch to your punch.

3. HOT WEATHER – if you live in Cape Town as I do, this time of year is really hot and all I want to do is find a huge bath of ice and lie there. I do not do heat.

4. COLD – if you are however in the northern hemisphere and have CFS, cold, wet weather is no treat either. Actually I think I am more fortunate experiencing the hot.

5. TOURISTS – Cape Town in December = chaos. Too many people, too many bad drivers; very busy malls; very busy restaurants; packed beaches. All too much for those of us wanting quiet, calm, silence and nothing that is too bright or noisey.

6. SHOPPING – this just takes longer for CF’s . If you didnt start in October, you are so behind its best you start celebrating your Christmas around Valentines Day.

7. ACCIDENTS – this time of the year we have a massive increase in road deaths due to the fact that everyone is rushing to be on holiday; drinking too much and driving; or just generally shorter of temper. And requests for blood donations go up. But don’t you guys worry as this does not mean you … i have just read that CFS sufferers are not allowed to donate blood until more is known about the virus. Is this a plus????

So on the brighter side … what is good about Christmas…

I love having a Christmas Tree even though it is summer here.

I love receiving presents.

I love giving presents.

I love my moms trifle and her Xmas dinner.

I love that my brother and his girlfriend are here to celebrate with us this year.

I love that we get to drink more champagne and don’t need a reason.

I love dressing up.

I love opening presents on Xmas day as I have done for 40 years with my family!!!!!!!!!

I love that we are nearing the end of this year and that next has to be better.


The Mountain

Posted by amber | My Diary | Posted on December 13th, 2010

Thought since my last super depressing post I had best find the positive. So I am working on my mountain and the best way to the otherside.


Posted by amber | My Diary | Posted on December 5th, 2010

I can quite easily say that the last 6 weeks have been amongst my worst, if not the worst. I started a course of cortisone, plasmoquine and ethipramine. I don’t think the cortisone is to blame as I have had 6 weeks of it before and the other 2 tablets are unknown to me. BUT i can say that 5 days after starting the 3 tablets CF took on a new and unpleasant buddy. PAIN. I woke to legs that felt like a they were made of cement and were burning with pain.

Up until now I have never had body pain. And maybe it was just a matter of time before i got this symptom … but my god its hard!

My whole body almost could be described as lame, that even walking a distance of 3 metres is hard. And the pain seems to move; thighs, calves, elbows, upper arms…very weird.

But as hard as that has been to deal with is the stark reality of reaching a point where you no longer believe there is a cure…

I find it devastating that i might well have reached this point. I think that initially I knew that there had to be a cure. I believed beyond a shadow of a doubt that there was a cure. I imagined each doctor I saw was the one with the ANSWER.  And I dreamed of being well.

Now two and a half years later; many doctors, physicians and healers since; many books read and Internet sites trawled; blogs followed and tablets ingested, I know different.

There is no definitive cure. My dreams no longer see me skiing down snow covered peaks or climbing Lions Head … There is the stark reality. There is the true black and white of it – no splashes of colour or flower doodles. The truth is cold and lonely and overwhelmingly sad.

I cry for me.

I cry for the loss of innocence.

I cry for the loss of hope.

I cry for an unfair world.

I cry for the end of dreams.

And I hope and pray that I find the end of the rainbow soon.