Blood Supply News?

CBS

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I'm starting this to try and sort out some of the discussion on the "Fight is on..." thread (I've been mostly lurking for a few days - ought to be on the 'Burnout Bench' - not SW's couch - in the lounge).

I have not heard anything on the blood supply question except a breif mention in the 11/19/09 minutes of the 'Advisory Committee on Blood Safety and Availability' - HHS.

Dr. Jerry Holmberg - (ACBSA Executive Secretary - page 22 - general comments at opening of meeting)

I also want to just let you know as a committee and it is very important as we talk about biovigilance and as we talk about organ and tissue safety, that we have become aware in the last month of another emerging infectious disease. It is emerging in the sense that we are finding more about this virus and the virus you actually do have papers in your handout is called XMRV and this is xenotropic murine leukemia related virus.

This was identified a few years ago to be associated with individuals with prostate cancer. And on October 8th there was a report in Science that the virus was also detected in individuals that had chronic fatigue syndrome. So I don't want to spend a lot of time. I just want you to be aware of this. That within the Department I have presented at The Chronic Fatigue Syndrome advisory committee to explain a little bit about what we are doing to monitor this and also to investigate some of the findings. And the Department is taking this very seriously and looking at, first of all, standardizing the tests that the researchers have used to detect this virus and then also potentially we will be looking at our recipients and donor repositories to investigate not only the prevalence but also if this virus can be transmitted by blood products.

So I just wanted to throw that article in your pile of information so that you have this and you will be aware of this. But at the present time, we will not be taking discussion on that. In fact, it is very premature in collection of the data but I wanted to make sure that you were all aware of that.
Just to put this in perspective, there are 391 pages of minutes for that meeting. XMRV gets a mention at the beginning and then on to other business.

I was talking with my GP last week. In November he had a healthy skepticism about the XMRV association. At this last visit we talked very briefly about transmission and the blood supply. I suggested that I did not expect to hear a word on the blood supply until the HHS could assure the public that "the blood supply was safe" and that there was "nothing to worry about."

If the XMRV association holds up:

1) Develop reliable test
2) Put reliable test in place and screen all new blood
3) Test all existing supplies
4) Announce to public that there is nothing to worry about and that the supply is safe.
5) Adopt policy that anyone with 'XMRV-related CFS' be excluded from donating blood or tissue

My GP's response - "Don't be too surprised."

It's not that the possibility of XMRV isn't accelerating the pace of research (I suspect that it is THE primary government motivation). We're just not going to hear anything on that side of things until we can all be reassured that 'we have nothing to worry about.' I can even imagine that there will be (is?) some tension between releasing results of positive XMRV studies and the HHS being ready to make those 'assurances.'
 
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Thanks for giving the blood supply its own thread Shane.

Here's this
fresh_eyes said:
Do you know about the dept of Health and Human Services XMRV Blood Safety Task Force?

Sounds pretty big - Wanda Jones says they have 50-person conference calls, from all sorts of fed agencies - but my understanding is it's all *very* confidential because they don't want to alarm the public.
and this from the CAA as well CFIDSLink Dec09: Guidance for Persons with CFS for Safe Blood Donation
 
G

George

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I concur. I expect this may be the heart of the embargo's on Dr. Mikovits first two talks. She may be limited in what she can talk about on the 22nd as well. HHS is most likely trying to get all the ducks lined up before they shoot this information to the public. I don't know how well that will work.

Anyone reading the medical papers will see that this is a blood born as well as sexualy transmitted virus. Lombardi's slip of the tongue regarding people wanting to be tested and being tested in order to keep from infecting others shows the gap between what the scientist "know" and take for granted and what the public has been "fed".

Sooner or later both the public and those of us who have XMRV are going to have to deal with realities. No matter how long they wait it just puts off the period of time that we will all have to muddle through somehow. I don't expect it to be pleasant.
 

flybro

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How many people are aware of this little gem

FACT: Any individual who has lived or worked in the UK since 1980 is no longer able to donate their blood in any other country in the world. The whole of the UK population is considered at risk of passing vCJD onwards through donated blood.

I'm British and had absoloutley no idea about this until, the WPI facaebook discussions. No major media outlet seems to be keeping the British imformed of this.
 

CBS

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How many people are aware of this little gem

FACT: Any individual who has lived or worked in the UK since 1980 is no longer able to donate their blood in any other country in the world. The whole of the UK population is considered ‘at risk’ of passing vCJD onwards through donated blood.

I'm British and had absoloutley no idea about this until, the WPI facaebook discussions. No major media outlet seems to be keeping the British informed of this.
My wife is excluded as she did a semester and then some in London. No offense but maybe the problem is the newspapers?
 

flybro

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No offence taken Shane,

My patriotism and national pride has been taken a pasting for over twenty years now.

Our investigative journalists and main stream media obviously have no balls.

Shame they would need them to tell the truth.

Cowards in a country full of bullies, just what we need.
 
K

kim500

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Just saw this posted at:

http://cfsknowledgecenter.ning.com/forum/topics/a-breakthrough-made-in?xg_source=activity

"This press release was posted on an ME list this morning.
Source: Daily Yomiuri Online, Japan
Researchers have discovered a protein in blood which can be used to diagnose The Chronic Fatigue Syndrome. According to their findings it is possible to be diagnosed earlier than the six month marker.
The research team was led by Hiroshi Kiyama, professor of anatomy at Osaka City University.
I don't know where it goes from this study.
The study was done first on rats, and then on a relatively small group of people.(57 pp)
It involved an extraordinarily high amounts of protein called alpha-MSH."
 

CBS

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CFS? alpha-MSH and fatigue

Just saw this posted at:

http://cfsknowledgecenter.ning.com/forum/topics/a-breakthrough-made-in?xg_source=activity

"This press release was posted on an ME list this morning.
Source: Daily Yomiuri Online, Japan
Researchers have discovered a protein in blood which can be used to diagnose The Chronic Fatigue Syndrome. According to their findings it is possible to be diagnosed earlier than the six month marker.
The research team was led by Hiroshi Kiyama, professor of anatomy at Osaka City University.
I don't know where it goes from this study.
The study was done first on rats, and then on a relatively small group of people.(57 pp)
It involved an extraordinarily high amounts of protein called alpha-MSH."
Hi Kim,

Thanks for the heads up. I don't see anything pubmed yet. I did find a recent study done by Dr. Kiyama. It looks like the article I was able to find looked at stress. I did not see anything yet specifically about CFS or diagnostic criteria. This would be interesting to keep an eye on. Here's the pubmed abstract on the alpha-MSH article from March, 2009:

J Neurochem. 2009 Jun;109(5):1389-99. Epub 2009 Mar 23.

Chronic stress elicits prolonged activation of alpha-MSH secretion and subsequent degeneration of melanotroph.
Ogawa T, Shishioh-Ikejima N, Konishi H, Makino T, Sei H, Kiryu-Seo S, Tanaka M, Watanabe Y, Kiyama H.

Department of Anatomy & Neurobiology, Graduate School of Medicine, Osaka City University, Osaka, Japan.

Prolonged stress affects homeostasis in various organs and induces stress-associated disorders. We examined the cellular changes of pituitary gland under the continuous stress condition using a rat model in which rats were kept in a cage filled with water to a height of 1.5 cm for up to 5 days. Among the pituitary hormone mRNAs, proopiomelanocortin mRNA was up-regulated specifically in the intermediate lobe (IL) of this rat model. Additionally, the peripheral blood levels of alpha-melanocyte stimulating hormone (alpha-MSH), a major product of proopiomelanocortin in IL were increased. The alpha-MSH secreting cells, melanotrophs, showed a markedly developed endoplasmic reticulum and Golgi apparatus in the early phase of the experiment. Subsequent continuous stress caused remarkable dilation of the endoplasmic reticulum, disruption of the Golgi structure, and the degeneration of some melanotrophs. In addition the dopaminergic nerve fibers from hypothalamus were markedly decreased in IL. A dopamine antagonist elicited the similar morphologic changes of melanotroph in normal rat. These findings suggest that prolonged stress suppressed hypothalamus-derived dopamine release in IL, which elicited over-secretion of alpha-MSH from the melanotrophs. The present study also suggests that prolonged hyperactivation of endocrine cells could lead to disorder of secretion mechanisms and eventual degeneration.
I just Googled this and it looks like it has also been posted on ProHealth: http://www.prohealth.com/library/showarticle.cfm?libid=15084.

From ProHealth:
[Note: The following press release was distributed Jan 11 via from the Japanese news site Daily Yomiuri Shimbun. We have not yet identified a journal article or other publication further detailing the study.*]

Researchers have discovered a protein in blood that can be used to diagnose chronic fatigue syndrome, a breakthrough that could help detect the ailment during physical checkups.

There are diagnostic criteria for chronic fatigue syndrome - a disorder involving extreme fatigue of unknown cause that continues for at least six months - that rely primarily on subjective symptoms, but there have been no objective markers such as blood tests.

The research team led by Hiroshi Kiyama, a professor of anatomy [in the Graduate School of Medicine] at Osaka City University, examined the intermediate lobes of the pituitary glands of rats in which they induced extreme fatigue by making them exercise for five consecutive days. They found that the lobes excreted extraordinarily high amounts of a protein called alpha-MSH and that alpha-MSH levels in the animals' blood also increased.

The neurotransmitter dopamine inhibits the secretion of alpha-MSH, but the rats' ability to produce dopamine declined as their fatigue grew.

The group also tested the levels of alpha-MSH in the blood of 57 people diagnosed with chronic fatigue syndrome and the blood of 30 healthy people.

The average level among the 37 people who had been diagnosed with chronic fatigue syndrome less than five years before was about 50 percent higher than in the healthy people.

Source: Daily Yomiuri Shimbun (Japan) press release Jan 11, 2009
Not XMRV but could prove useful. Maybe a good post for its own thread?
 
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I am wondering about the blood studies also.

I thought Holmberg said there would be some statement within a couple of weeks of the CFSAC meeting, even if it was announcing a plan of action. Surely one of you guys knows what's up with that.

I suspect they don't want to announce until they have testing in place for all the current blood. Because if they don't, then all current blood is bad. It's a case of positive for XMRV until proven otherwise. But this will not solve the problem of having to admit that many people may have been infected in the last 25 years through blood.

If XMRV is in the blood, and it is shown to cause CFS, or cancer for that matter, or any illness for that matter, then there is no winning for the blood folks. Announce it and they lose, hold off and they lose (along with new people being infected losing).

I wonder if there are a lot of meetings happening now with men with their heads in their hands, worrying about what to do.

Tina
 
D

DysautonomiaXMRV

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Didn't someone official at the CFSAC meeting say it would be at least 6 months?
I forget who. Looking back I think the problem is they cannot decide if/when to ban
blood for CFS, until the WPI/VipDX test is finalised and agreed upon to be the 'finished'
product to detect XMRV. If and only then, would the WPI technology be used to screen
the blood - to determine how much there is out there in the community.

I'm guessing off the top of my head it could be June/July 2010 before we hear some
news.

If is is proven infectious and blood stores need to be protected, that's another 'game changer' for sure.
And another CFSAC meeting will take place of epic proportions. Which is always a good thing.
 

Martlet

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FACT: Any individual who has lived or worked in the UK since 1980 is no longer able to donate their blood in any other country in the world. The whole of the UK population is considered at risk of passing vCJD onwards through donated blood.

I'm British and had absoloutley no idea about this until, the WPI facaebook discussions. No major media outlet seems to be keeping the British imformed of this.
My husband discovered this when we moved over here. He had donated all his life, but it seems the Americans are worried about that roast beef and Yorkshire pudding. :D