XMRV Virus leads Canadian blood service to ban CFS donors

garcia

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In a written answer provided on 10 March, Ann Keen (the parliamentary under-secretary of state for health) replied:

"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered. "

The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients."
Fascinating. We need to explore this more fully. Firstly I actually feel better when giving blood (e.g. for tests), so the first reason doesn't apply to me or many others with ME/CFS. So we are left with the second reason - causes not fully understood, precautionary measure to protect blood supply. So is the UK government saying that ME/CFS could be caused by an infection? Are they really saying that? If so how does their proposed treatment of CBT/GET square with this?

There seems to be a major contradiction here which needs to be exposed.
 

oerganix

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Julius, ay,yi,yi!!! a million apologies! Catnip and a can of sardines for you! (I have three cats, myself....no excuses...they like cockroaches and geckos...would you like one of those?)
 

julius

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Julius, ay,yi,yi!!! a million apologies! Catnip and a can of sardines for you! (I have three cats, myself....no excuses...they like cockroaches and geckos...would you like one of those?)
Mmmm......I'll take a large order, to go, please.
 

fred

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Fascinating. We need to explore this more fully. Firstly I actually feel better when giving blood (e.g. for tests), so the first reason doesn't apply to me or many others with ME/CFS. So we are left with the second reason - causes not fully understood, precautionary measure to protect blood supply. So is the UK government saying that ME/CFS could be caused by an infection? Are they really saying that? If so how does their proposed treatment of CBT/GET square with this?

There seems to be a major contradiction here which needs to be exposed.
It appears that there was some suspicion of a blood borne virus being the cause of ME in 1991. The minutes of a meeting of the UK Advisory Committee of the Virological Safety of Blood has the following:

"31 Dr Pickles said that it had been suggested that the Department should introduce routine testing of blood donations for ME to prevent transmission of the infection(s) responsible for this disorder. It was feasible that infection may be transmitted to transfusion recipients, a small proportion of whom might develop chronic symptoms, themselves.

"32 It was agreed that the evidence available did not support the introduction of a test. The Committee, however, would continue to watch any developments with interest."

More information is available on ME agenda.
http://meagenda.wordpress.com/2010/02/13/donations-and-transfusions-safety-of-the-uk-blood-supply/
 

fred

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The BBC are taking questions for the Prime Ministerial Debate.

If enough of us ask questions about ME, perhaps we will get one through.

http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm


I asked, if they considered it to be a neurological disease, then when would they be treating it like one i.e. biomedical research and treatments, not psychological therapies like CBT & GET, which have repeatedly been shown to be of little benefit or dangerous.

I'm sure others can compose this better than I.
Thanks, V99. I have submitted this question.

The Canadian Blood Service has just announced that, as a precautionary measure against potential contamination from XMRV (the newly discovered human retrovirus), it is prohibiting the donation of blood by people who have/had ME (or CFS) (one of the diseases with which XMRV is associated - another being prostate cancer). The UK Government's current position is that people with ME can donate blood when they are 'fully recovered'. Given that (a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA, should this country not follow Canada's cautionary lead and ban people with ME from donating blood - without exception? How would each of the parties handle this emerging health issue if they were in power? Given that this pathogen could have the same impact (both from a health and an economic perspective) as HIV, Hep C and vCJD, should it not receive cross-party, bi-partisan attention?
 

MEKoan

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I feel like this move by the gov't is a really positive one, and we should let it seep in to the public psyche naturally.
I agree. Blood Services deals with a number of threats to the blood supply and they balance that with the very real need to encourage people to donate and the ongoing anxiety of people who are dependent on blood products for their survival. It's not always an easy thing to do but it's what they do and, for now, I think they're doing it well.

There is a 30 question form people fill out which covers a number of issues: potential HIV exposure, CJVD, Hepatitis C, various drugs and medications along with other problematic issues. It's possible they will simply begin to screen for ME/CFS at that level. Our agenda aside, that may well be the most appropriate way for them to deal with this. The media interest in XMRV will do the rest and the reaction of CBS becomes evidence of seriousness. I think this is a responsible way for CBS to respond to what is still a potential link only.

I don't want to become a thorn in the side of people who are behaving responsibly and in a timely fashion. After all, we can use all the allies we can muster. There are plenty who are not behaving responsibly and I would like to put my thorny energy there. ;)
 

MEKoan

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The Canadian Blood Service has just announced that, as a precautionary measure against potential contamination from XMRV (the newly discovered human retrovirus), it is prohibiting the donation of blood by people who have/had ME (or CFS) (one of the diseases with which XMRV is associated - another being prostate cancer). The UK Government's current position is that people with ME can donate blood when they are 'fully recovered'. Given that (a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA, should this country not follow Canada's cautionary lead and ban people with ME from donating blood - without exception? How would each of the parties handle this emerging health issue if they were in power? Given that this pathogen could have the same impact (both from a health and an economic perspective) as HIV, Hep C and vCJD, should it not receive cross-party, bi-partisan attention?
This is a beautifully worded question!
 

Otis

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They also didn't change their error stating that Mikovits found no XMRV in controls, when in fact, they found it in 3.7% of controls, which is very pertinent to blood donation.
I agree. There seems to be an intentional twisting of the facts on this point. He writes:

In the paper, researchers found that many of the 101 study subjects who suffered from the condition also had been infected with the retrovirus.Meanwhile, virtually none of the studys healthy subjects showed any trace of it in their bloodstream.

How many equals "virtually none"? Is that 3.7% or something less. Let's say it's one person which is esentially 1%. That doesn't seem insignificant but I expect the ideas is not to scare people.

Sorry, I think that time is past. I for one want public outcry at this point. No more sweeping this under the rug. We need the help of the general public. Lives may be at stake and the only report is a benign-sounding news report. Huh.

They've taken a good step but with no education to reach Drs. and undiagnosed patients (and other things mentioned in this thread) there is much left to do to truly protect the blood supply.
 

julius

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(a) there is no scientific evidence that people do 'fully recover' from ME and (b) that a retrovirus (akin to HIV) can not be eradicated from the host's DNA,
Who needs scientific evidence when you have 'wessely-ific evidence'?
 

julius

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There seems to be an intentional twisting of the facts on this point.
That doesn't seem right to me. If anything I see the opposite. Several times the author compares XMRV to AIDS (not HIV but full blown AIDS). That is not the way to downplay an issue.
Also the wording in general, such as this "And a study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue." don't seem to be written by someone with a denialist agenda.

In the paper, researchers found that many of the 101 study subjects who suffered from the condition also had been infected with the retrovirus.Meanwhile, virtually none of the studys healthy subjects showed any trace of it in their bloodstream.... I expect the ideas is not to scare people.
Actually, that seems like an attempt to 'play up' the association between the virus and the disease, not to play it down in any way.


They've taken a good step but with no education to reach Drs. and undiagnosed patients

But if they did it now what information would they be bringing? Ethically they can't tell doctors that XMRV is the cause of CFS....not yet. Given the limited resources of the CBS, I would rather they make a push once the verdict in final on XMRV. If they do it now, they won't have the resources left when the time for the big push arrives.
 

Otis

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MEKoan

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Hey Otis,

I think they are showing precaution. Even though the link is not yet welded in place they are treating XMRV with the same seriousness they treat HIV, Hep.C, CJD, Malaria and other horrible, often oncogenic, sometimes swiftly deadly or horribly disabling entities.

This is a very big step for an as yet unproven connection. More than this would be hysteria. This is just right!
 

fred

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Hey Otis,

I think they are showing precaution. Even though the link is not yet welded in place they are treating XMRV with the same seriousness they treat HIV, Hep.C, CJD, Malaria and other horrible, often oncogenic, sometimes swiftly deadly or horribly disabling entities.

This is a very big step for an as yet unproven connection. More than this would be hysteria. This is just right!
Agreed. And thanks for your previous compliment. I hope the BBC likes the question as much.
 

Otis

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That doesn't seem right to me. If anything I see the opposite. Several times the author compares XMRV to AIDS (not HIV but full blown AIDS). That is not the way to downplay an issue.
Also the wording in general, such as this "And a study published last October in the prestigious journal Science suggested that XMRV was strongly associated with chronic fatigue." don't seem to be written by someone with a denialist agenda.



Actually, that seems like an attempt to 'play up' the association between the virus and the disease, not to play it down in any way.





But if they did it now what information would they be bringing? Ethically they can't tell doctors that XMRV is the cause of CFS....not yet. Given the limited resources of the CBS, I would rather they make a push once the verdict in final on XMRV. If they do it now, they won't have the resources left when the time for the big push arrives.
I'm writing on a cell phone (best I can do from bed most days) so I'm not elaborating very well and I'm SLOW. :ashamed:

Point taken on the prestige of a Science article but they do go on to point out other studies haven't confirmed a link between XMRV and CFS.

Forgive me but I didn't catch your point on the healthy controls playing up the association. I was looking at it from the message conveyed about the danger to the blood supply.

What I was getting at with education was strictly aimed at getting to more of the undiagnosed so they don't try to donate, not to push an XMRV message. Hopefully the screening questions will weed out some based on symptoms but that's the last line of defense.
 

Otis

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Let me take a step back and say that this is a great first step and I understand that given the current lack of a proven connection between ME/CFS and the presance of XMRV it's especially remarkable.

But for me the balance between not creating a panic (and god forbid it's a false alarm blamed on CFS) and sending an accurate message which would likely cause some public concern isn't black and white. And it's not all about CFS, prostate cancer is a valid concern as well. I admit to playing devil's advocate, mostly because as I read the article it was crafted to downplay concern and did not to convey what we know about XMRV if the Science article is the measuring stick. I did a poor job of making this point. I don't want a panic but if some public concern pushes testing/screening forward more quickly then I think everybody benefits.

And finally I tried to make the point that if people were being asked to not donate that those people need an accurate diagnosis, and that means getting people and Drs. better able to translate symptoms to a diagnosis. That bit has nothing to do with XMRV other than keeping the undiagnosed from donating blood.
 

MEKoan

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Hey Otis,

I agree with you - testing and screening really can't come fast enough for everyone. And, more people with this virus is not a good thing to contemplate!!!

It's more about who takes the message forward, in what way, and when, that we are discussing. The Canadian Blood Services reaction to the XMRV threat is right on the money as far as I can tell. A reasonable and considered response cannot be dismissed as being alarmist. This is a reasonable and considered response.

I think it's a hugely important step in recognizing XMRV as the threat we all believe it to be. Blood Services work together internationally producing and distributing blood products. It must, of necessity, be a very rational process. XMRV being recognized, and calmly discussed in relation to ME/CFS, in this context is huge!

HUGE!
 

julius

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Point taken on the prestige of a Science article but they do go on to point out other studies haven't confirmed a link between XMRV and CFS.
I think it's basic good protocol to mention if other studies have shown conflicting results. It would be irresponsible not to. But the author didn't give them much time.

Forgive me but I didn't catch your point on the healthy controls playing up the association
The more the virus shows up in healthy controls, the less strength the association with CFS. Hypothetically, if 68% pwc had xmrv and 50% of healthy controls had it, then the link between the disease and the virus is fairly weak. On the other hand if 0 heatlhy controls had it, then the link is very strong. So by downplaying the numbers in the healthies, you are actually emphasising the link between virus and disease.


What I was getting at with education was strictly aimed at getting to more of the undiagnosed so they don't try to donate.
This is something we could really use. It's been needed for a long time. I think articles like this and the ongoing research will finally see that happen. I don't know who's purview that would fall under however. I don't think it would be CBS.
 

fred

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The European Society for ME (ESME) is asking whether there should be a pan-Europe ban on people with ME donating blood.

http://www.facebook.com/?ref=home#!/pages/ESME-European-Society-for-ME/326113349124?ref=ts

You can join the debate there, if you wish - and perhaps write to your EU representative about the matter.

In the UK, Caroline Lucas, MEP for the Green Party, is very pro cleaning up the blood supply carolinelucas@greenmeps.org.uk

Also in the UK, you can find your local MEP here http://www.europarl.org.uk/