XMRV Virus leads Canadian blood service to ban CFS donors

Kati

Patient in training
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I's been sent already unfortunately, but I see what you mean, I mean I don't believe that they held a press conference themselves, and I feel they want to tell this info very quietly so nobody notices.

I would like them to make a public announcement, and send advisories to all the physicians in Canada with infor in Cdn Consensus.,


and make sure the right information goes out there. - too brain dead to think anymore... Let me know if there is more you'd like to ask me and I may edit and send it somewhere else, Thanks, Kati
 

bullybeef

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I have just sent the following email to a person I know at the UK Blood Society:

I have received a compelling announcement regarding XMRV, and an official blood donation ban has been put in place for ME/CFS patients in Canada.
Please see:
http://www.healthzone.ca/health/new...n-blood-service-to-ban-chronic-fatigue-donors

Obviously this is the first country to announce specifically, that ME patients would be deferred from giving blood. It is a huge public move, and highlights the potential seriousness of the situation. One thing to bare in mind is, I am unaware whether XMRV has been proven prevalent in Canada, and yet I know of numerous people here in the UK whom are XMRV+.

It does state at the end of the piece: An estimated 340,000 Canadians are diagnosed with chronic fatigue. But Devine says most would be too ill to give blood already and there is little chance the current supply has been contaminated.

Here is a inconsistency, and a worrying one. Most ME patients remain undiagnosed for years, particularly in the early stages of the diseases. I was misdiagnosed with Colitis, prior to it being confirmed ME in 2008. Looking back, I could have been carrying ME for over a decade, of which I would have had ample time to donate. I do know of people in this scenario whom have donated before they have received their ME diagnosis, and they are obviously worried that they have contaminated the UK blood supply.

Just based upon the laws of averages, it is highly unlikely that the UK, or any other country's blood supply, have avoided the XMRV virus. This virus has only so far been successfully discovered in the US and Japan. The UK have been unable to locate the virus. So if the UK researchers cannot locate it, it is highly likely that the UK blood supply may have inadvertently missed it. We all understand the concerns haemophiliacs have been having in contacting HIV and hepatitis over the last 30 years, and I would be very surprised if XMRV has infected no one by transfusion, or even transplantation.

I believe Canada has set a precedent, and this is something the UK should now follow, as well as other civilized countries. Caution is the best form of defence, and even though XMRV may have been infecting the blood supply for years, being privy to the knowledge that it is a potential threat, should enable the UK Blood Supply to finally make an official announcement.

The US is worried about it, as you can see here:
http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html?mod=googlenews_wsj

Thank you for taking your time to read my post, and I hope it is in the best interests of the UK's blood supply.
If we can all send similar emails to our own countries blood supply organisations, I am sure this would move mountains.
 
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This is a step in the right direction. Maybe the US will take this seriously and follow Canada's lead. They can no longer ignore this problem of chronic fatigue.
 
G

Gerwyn

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This is a step in the right direction. Maybe the US will take this seriously and follow Canada's lead. They can no longer ignore this problem of chronic fatigue.
chronic fatigue of course is only one symptom associated with ME and formany not the main source of disability
 

fred

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Would UK people please consider writing to their local MP to ask if the UK Government is going to follow the Canadians' lead?

You can find your local MP here.

http://www.theyworkforyou.com/

And the main party shadow health ministers are as follows.

Andrew Lansley, Conservative lansleya@parliament.uk

Norman Lamb, LibDem normanlamb@hotmail.com (he also has a Facebook page)

Several LibDems (including Norman Lamb, Paul Rowan, Annette Brooke) have raised the issue of protecting the blood supply from ME / XMRV on various occasions during the last six months - as has David Drew, Labour MP for Stroud.

Despite concerns being raised by these MPs (and The MEA and IiME), the UK Government maintains that pwME can donate blood when they are recovered.

Please consider sending the link at the beginning of this thread plus the simple question of 'when will the UK government follow the Canadians' precautionary measure?' to as many MPs as you can.

It is election time - they want your votes. We want our lives back.

Thank you.
 

Esther12

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I thought the UK has already said that people with CFS should not donate blood? - A policy that long pre-dates XMRV.

Please check on this before writing to anyone.
 
G

Gerwyn

Guest
Would UK people please consider writing to their local MP to ask if the UK Government is going to follow the Canadians' lead?

You can find your local MP here.

http://www.theyworkforyou.com/

And the main party shadow health ministers are as follows.

Andrew Lansley, Conservative lansleya@parliament.uk

Norman Lamb, LibDem normanlamb@hotmail.com (he also has a Facebook page)

Several LibDems (including Norman Lamb, Paul Rowan, Annette Brooke) have raised the issue of protecting the blood supply from ME / XMRV on various occasions during the last six months - as has David Drew, Labour MP for Stroud.

Despite concerns being raised by these MPs (and The MEA and IiME), the UK Government maintains that pwME can donate blood when they are recovered.

Please consider sending the link at the beginning of this thread plus the simple question of 'when will the UK government follow the Canadians' precautionary measure?' to as many MPs as you can.

It is election time - they want your votes. We want our lives back.

Thank you.
will do i will write later
 

fred

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I thought the UK has already said that people with CFS should not donate blood? - A policy that long pre-dates XMRV.

Please check on this before writing to anyone.
Neither the UK Government nor the Chief Medical Officer has stated definitively that people with ME can never give blood.

From The MEA (my emphasis).

http://www.meassociation.org.uk/ind...e-and-blood-donation&catid=30:news&Itemid=161

The Health Secretary has been asked to give reasons why people with ME may not donate blood. The request came in a written question from David Drew, Labour MP for Stroud, who has asked a stream of other questions about ME in the past few weeks (type 'Drew' into the search box to see some of the others).

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."
 

V99

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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.
 

Esther12

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Neither the UK Government nor the Chief Medical Officer has stated definitively that people with ME can never give blood.
Ta. I thought that the situation was the same in Canada, but have just seen they've banned anyone who has had CFS in the past too.
 

oerganix

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way to go Canada, but please stop calling it chronic fatigue! Kati, straighten them out for me, will you?
I immediately contacted them about their "factual errors": calling it chronic fatigue instead of CFS. I told them this is ME by another name, etc. etc. Then I told them that 3.7% of "healthy normals" also were found to have XMRV, so their statement that "virtually none" other than those with "chronic fatigue" have it, is also in error. Their robot wrote back that if they find an error, they will correct it. We'll see... If no correction soon, I suggest others write them and bring it up again.

The country that gave us the Canadian Definition should not be making this error, eh?
 

Kati

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Kati,

I don't know if you were wanting feedback, but I found your letter almost sounded like you disagreed with their decision. From reading your earlier posts I don't think this is the case. Just an observation. Hope it doesn't offend.

Have you sent it already?
Julius I wanted to express myself a bit better than what I did last night. While I felt it was a great thing that they decided to restrict their donors, I felt they did this very quietly and didn't even write anything on their website. My point of view is that if you are taking a stance, go all the way and explicitly explain what you are doing, make it clear!

Being a RN, I know their communications has to reach all doctors, and I would like to see it being done right.

I know my e-mail is not all honey!!! In one way, I am giving them a chance to express themselves to the media before papers publish whatever info comes their way.
 

julius

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Those of you in the UK, maybe a letter to the editor of the health page of BBC news would be interested in this story. ME was pretty hot recently, and a story of the Canadian gov't banning donors would probably get printed.
 

oerganix

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Those of you in the UK, maybe a letter to the editor of the health page of BBC news would be interested in this story. ME was pretty hot recently, and a story of the Canadian gov't banning donors would probably get printed.
Julius, or anyone, would you be willing to email this newspaper and remind them that it should read "chronic fatigue SYNDROME". I did earlier and they changed it in one place and left "chronic fatigue" in 7 more references to the "ailment". 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.

The story has a blue box, top center, where you can click "report typo or correction". If this story is going to be forwarded around the world, I'd like it to be accurate.
 

julius

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I always wonder about how much fanfare is really good. My first thoughts always go to the 'boy who cried wolf' story, or even 'henny penny (the sky is falling)'.

Given that most people are already cynical about us and our disease, maybe too much noise will just annoy them further. Also, if things in XMRV research take a turn for the worse, we may be chased right out of the village.

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 realize I could be totally wrong here though, so any thoughts or comments are welcome.