Society Logo
ME/CFS Australia Ltd
Please click here to donate ME/CFS Australia (SA) Inc
 
 
Facebook
 
ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

Disclaimer

ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

Blood donation, XMRV, and ME/CFS

Tuesday 13 April 2010

Blood donationThe thorny topic of people with ME/CFS giving blood has cropped up recently due to the disease's possible link to XMRV.

ME/CFS Australia reports on the official response in Australia and the UK:

The Australian Red Cross is advising people who have been diagnosed with or suspected of having ME/CFS not to donate blood. An email from the Red Cross to a potential donor on the 10th of December 2009 indicated:

"Current advice within the Australian Red Cross Blood Service is that chronic fatigue syndrome patients are not eligible to give blood until the condition is resolved and recovery confirmed by a treating doctor."

The current advice from UK Blood Services in relation to ME/CFS has been further clarified: "Individuals suffering from ME/CFS are deferred from blood donation until their condition has resolved and they are feeling completely well."

The above originally appeared here.

The UK's ME Association expands on the UK position as well as the official responses from the the US and Canada:

XMRV and blood donation: Canada, UK and USA

Wednesday, 07 April 2010 18:08

Countries round the world are starting to reconsider their policies on taking blood donations from people with ME/CFS following the recent accouncement from the Whittemore Peterson Institute in Nevada about the XMRV virus.

CANADA:

The Canadian Blood Service has now announced that people with ME/CFS should not donate blood.

It is not clear from this report whether the Canadian ban also applies to people who have recovered from ME/CFS.

UK:

The position in the UK, as clarified in correspondence between The ME Association and Sir Liam Donaldson, the Chief Medical Officer, is that people with ME/CFS should not donate blood until their condition has resolved and they are feeling well.

MEA letter to the Chief Medical Officer, in which we asked for this advice to be extended to people who have recovered from ME/CFS.

Reply from CMO

The latest statement on UK blood donation and XMRV was in response to a House of Commons question from David Drew MP, Dr Charles Shepherd's parliamentary representative in Stroud.

USA:

Information relating to the position in the USA.

Elsewhere in the world:

Please let us know if you have any firm information regarding blood donation restrictions or bans relating to ME/CFS in other countries. We will then add this information to the next MEA summary.

You can email us easily by clicking here.

That information originally appeared here.

And here is About.com's Adrienne Dellwo with her views on blood donation:

Blood Donation, XMRV & Chronic Fatigue Syndrome

Saturday April 10, 2010

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? Leave your comments below!

Learn more or join the conversation!

That article originally appeared here.

 


 

blog comments powered by Disqus

Previous Previous Page