Canada Bans People With Cfs From Donating Blood

[summer]

I thought this was interesting and says to me that people are starting to take this illness seriously. I'm sure it's true that most people with CFS and/or dysautonomia are not well enough to donate anyway. The link between the illness and XMRV must be pretty strong for them to take this kind of measure. I thought some of you might be interested too.

http://www.calgaryherald.com/health/Canada...5203/story.html

[juliegee]

Thanks for sharing, Summer. Very interesting indeed! If Canada is taking these steps, I would hope that the US isn't far behind.

My son is DXEd with CFS and I have displayed the symptoms as well for much of my life. I hope the research continues and we learn more that could point to more effective treatment. I've got my eyes on this.

BTW, you are sooooo right. Who with CFS would be donating blood anyways. We barely have enough as it is .

Julie

[summer]

Who with CFS would be donating blood anyways. We barely have enough as it is .

Exactly, Julie! Infact, when I was younger, before ever being diagnosed with CFS or POTS, and not having obvious symptoms, I did give blood once, and it made me very ill for a couple of weeks. I fainted a number of times following and was extremely fatigued and nauseated. I never did it again because it made me so sick. I am not a person with a weak stomach so I knew that wasn't it. I understand now that I was probably hypovolemic to start with. I'm sure I would never have been diagnosed with CFS at the time, but I think I had the potential, and probably had POTS, although mildly.

It will be interesting to see how this develops.

Summer

[Noreen]

I thought this was interesting and says to me that people are starting to take this illness seriously. I'm sure it's true the most people with CFS and/or dysautonomia are not well enough to donate anyway. The link between the illness and XMRV must be pretty strong for them to take this kind of measure. I thought some of you might be interested too.

http://www.calgaryherald.com/health/Canada...5203/story.html

'

It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

[Noreen]

Thanks for sharing, Summer. Very interesting indeed! If Canada is taking these steps, I would hope that the US isn't far behind.

My son is DXEd with CFS and I have displayed the symptoms as well for much of my life. I hope the research continues and we learn more that could point to more effective treatment. I've got my eyes on this.

BTW, you are sooooo right. Who with CFS would be donating blood anyways. We barely have enough as it is .

Julie

You are right about that Julie. But just think, like so much else, it is dependant on which dx the MD puts on our chart. I've met all the diagnostic criteria for CFS for at least 12 years but do not carry the diagnosis.

[summer]

It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

Noreen, I'm glad you posted that. I have not really looked into the research that led to this decision yet, but I'm planning to. Canada definitely wants to err on the side of caution because of serious errors in the past involving contaminated blood products. So, perhaps this really isn't a good indicator that the link is strong between XMRV and CFS. They just don't want to take the chance of having another tainted blood scandle like they did in the 80's/90's.

Thanks for pointing that out.

Summer

[Noreen]

It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers.

Noreen, I'm glad you posted that. I have not really looked into the research that led to this decision yet, but I'm planning to. Canada definitely wants to err on the side of caution because of serious errors in the past involving contaminated blood products. So, perhaps this really isn't a good indicator that the link is strong between XMRV and CFS. They just don't want to take the chance of having another tainted blood scandle like they did in the 80's/90's.

Thanks for pointing that out.

Summer

Summer-

While the reason may not yet be found, raising awareness is good especially if the dysautonomia component is focused on. I had been active in FMS support on the net since 1994 and a facilitator for twelve years of my local fibro/chronic pain group. When a rheumy specializing in fibro was moving his practice to upstate NY from NJ ten years ago he called me and we chatted. As he caught me in the evening after work, I was blunt and told him I thought that fibro was actually an autonomic problem. He agreed and said that he thought rheumatologists got it by default since neurologists weren't interested. He moved his practice, was a great guest speaker, became very active in the arthritis chapter and has helped many. I never saw him as a patient as by then I was dealing with much more than just FMS.

I really don't think it is too much to ask that all licensed medical professionals have a clear understanding of a vital component of human physiology - but it would seem that that is the current state of affairs given all of our posts here.

Noreen

[juliegee]

"It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers."

Hi Reen-

We've talked about the XMRV virus pretty extensively here. This seems to be a little bit more than "bad science." Maybe, it's early science . Here's a link, albeit from the researchers themselves, describing the possible correlation:

http://www.wpinstitute.org/news/news_current.html

Here's an April 5th, Wall Street Journal Article, addressing the subject of the US blood supply:

http://online.wsj.com/article/SB1000142405...1295988608.html

You're right, nothing is conclusive...but the research, IF someone besides WPI can replicate it, is compelling. I LOVE the idea that we'll have a simple blood test and treatment someday.

And you're so right about the DX- pure semantics.

Julie

[erik]

Interesting. Hope it doesn't turn out to be sexually transmitted too... there are enough limitations to this thing of ours!

[summer]

Interesting. Hope it doesn't turn out to be sexually transmitted too... there are enough limitations to this thing of ours!

I wondered about that too. I did a search yesterday to see what I could find. I found an article talking about that that pointed out that there was not a lot of evidence that CFS was being passed on to spouses/partners. It also mentioned that if this virus is passed on through blood and body fluids, it could be passed from mother to child during childbirth or breast feeding. There is evidence that cfs occurs in families. I tried to find the article so I could post the link. Of course, I can't . If I find it I'll post it.

Summer

[TXPOTS]

There was one study that linked XRMV to CFS, but 2 later studies failed to show the connection. There are many, many theories and no definitive answers yet. I agree that CFS patients should definitely not be giving blood anyway. I have hypovolemic POTS, and I feel terribly ill when doctors order multiple tubes of blood! Interesting topic. We need more solid research.... more studies with a decent number of patients published in reputable journals.

[Noreen]

"It looks like they want to stay removed from the fray. There has been a lot of bad science attributing CFS, prostate cancer, and types of lymphomono to XMRV. It can't be replicated in most cases. The science to confirm the theory is not ready for prime time. Makes for good press for some of the researchers."

Hi Reen-

We've talked about the XMRV virus pretty extensively here. This seems to be a little bit more than "bad science." Maybe, it's early science . Here's a link, albeit from the researchers themselves, describing the possible correlation:

http://www.wpinstitute.org/news/news_current.html

Here's an April 5th, Wall Street Journal Article, addressing the subject of the US blood supply:

http://online.wsj.com/article/SB1000142405...1295988608.html

You're right, nothing is conclusive...but the research, IF someone besides WPI can replicate it, is compelling. I LOVE the idea that we'll have a simple blood test and treatment someday.

And you're so right about the DX- pure semantics.

Julie

Hi Julie-]

I was following it in the science research blogosphere. By bad science I meant the question of some of their methodology and testing - they've gone back to very old testing techniques which are considered less than reliable by do many scientists on the ground (i.e. the lab) as the newer ones (DNA< RNA< YADA<YADA) weren't yielding the desired results. One of the authors of the 2nd paper did not want to go so public as she thought it was premature - her science methodology has been praised, however. My shorthand version was that it was not ready for prime time and you are right - r phrasing would have said early science.

Perhaps they will get somewhere, perhaps they won't - that is the nature of science and experimentation. As long as false hope is not being dished out, I do not have a problem with scientific research. I also don't have a problem with Canada being proactive and possibly erring on the side of caution for sake of the health of the people of the country.

It irks me that we do not fund research cleanly anymore. Scientists use to be able to work at an academic institution and do research. Now, there is no tenure and everyone better bring in a grant if they want to keep a job. The problem with this is that you answer the question asked - if the grantors are giving you $ for AIDS (e.g.), that is what you focus on. So, somehow an AIDS center will have an autonomic lab yet not link into other autonomic disorders through a search - they are being paid for AIDS. AIDS, by the way, is now considered a chronic disease in public health.

Thanks for the Wall Street Journal article, I hadn't seen it.

Noreen

[erik]

It is good science to explore research issues. It is good science to question all these things. The process is working itself out. The blood donation ban is pre-emptive and since it doesn't amount to a huge donor population (we "donate" enough blood to our doctors/labs anyway it isn't a very harmful premature stance. I wouldn't read too much into it beyond "early early concern" and probably have to have patience to know more.

I found that Web Conference series on that CFS site to be handy. They had a prior archive from earlier this year on XMRV and the researcher helped give clarification on much of this (but NOT on a donation ban since that hadn't happened).

[kayjay]

Erik- Just wanted to ease your mind about the sexually transmitted CFS. I like Reen do not carry the diagnosis of CFS but with a different doctor I would. I have IBS, POTS, Fribro. I really believe that it is an auto immune or allergy type problem... not a "blood' disease.

I just know in my case I could not have gotten it from sexual relations... also my husband and children are all (thankfully) super healthy.- Although I don't know if I have this virus or not

I am such a germ freak I never even drank after other people.

I suspect for many of us there may be a genetic tendency with an environmental trigger.

of course I have no reason to think this way except for my suspicions about my own case.

Funny thing for me I gave blood once in high school and felt so horrible... I never did it again and I have always felt a little guilty thinking that I should give blood because I assumed my blood was "good". HA HA - we hopefully this question will be answered soon.

[iheartcats]

I guess we'll just have to keep our eyes on it. Here's some info from the CDC:

http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

I wonder how hard it is to see if you carry this virus? I'd just like to know!

[Noreen]

I guess we'll just have to keep our eyes on it. Here's some info from the CDC:

http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

I wonder how hard it is to see if you carry this virus? I'd just like to know!

Thanks Cat -

I had checked in late january and saw nothing. I appreciate your sending the link.

Noreen