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Global Campaign to ban blood donations from people with ME

fred

fred

The game is afoot
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400
fred

fred

The game is afoot
Messages
400
Letter to UK Blood Society

This was posted by bullybeef:

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/news...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/SB1000...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.
 
fred

fred

The game is afoot
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400
UK MP contact details

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.
 
fred

fred

The game is afoot
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400
UK Gov statement on ME blood donations

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/inde...ews&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."
 
fred

fred

The game is afoot
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400
BBC PM debate

Posted by V99:

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_politi...10/8589502.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.
 
fred

fred

The game is afoot
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400
BBC PM debate question

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?
 
fred

fred

The game is afoot
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400
ESME and UK MEPs

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#!/...3349124?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/
 
fred

fred

The game is afoot
Messages
400
US National Hemophilia Foundation

In the US, please consider contacting the National Hemophilia Foundation with your concerns.

This is the main website page.

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=0&contentid=1

Here is a list of regional Chapters - there are LOTS of them to contact - as well a link to other bleeding disorder organisation sites.

http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=51&contentid=193

And the NHF has a Facebook page.

http://www.facebook.com/NationalHemophiliaFoundation
 
parvofighter

parvofighter

Senior Member
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440
Location
Canada
Thank you Fred!

Great Idea Fred, and thanks for setting this up.:Retro smile:

Here's a letter I wrote to the Canadian media that you guys are welcome to cut/paste & use in any way that's helpful. FYI this is exactly the kind of action-focused initiative we are wanting to disseminate on XMRV Global Action. Kind of a leap-frogging initiative to help us learn from other countries' initiatives. So that we're not re-inventing the wheel with our limited energies, and so we're leveraging connections with other possible XMRV groups (eg. prostate cancer, etc) for maximal impact. Here's the link for XMRV Global Action on Facebook: http://www.facebook.com/photo.php?pid=5230892&id=815020522&ref=nf#!/pages/XMRV-Global-Action/216740433250?ref=ts

A WELCOME BAN ON ME/CFS BLOOD DONATIONS
The news that the Canadian Blood Services is barring anyone who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from donating blood is welcome and necessary. Patients intimately familiar with ME/CFS, often suffering from multiple persistent opportunistic infections (Epstein-Barr, Human Herpes-6, Parvovirus B19, etc.), are not at all surprised that a retrovirus might be at the root of their disease. After all, thats what retroviruses do they act like a cheerleader to spur on common infections that most people are able to fight off. For years and even decades patients have been laughed out of immunology, rheumatology, and infectious disease specialists offices, left often to battle on our own with crushing exhaustion, unrefreshing sleep, recurring low-grade fever, sore throats, swollen uvula and lymph nodes, achey, achey legs, flu-like malaise all exacerbated by trivial activity. To make matters even worse, our symptoms wax and wane like MS so its no wonder that ME/CFS patients report having donated blood during remissions. Many of us have gone on to develop cardiac complications, stroke symptoms, vasculitis. And many of us are housebound or bedbound. Many of us have lost family, lifelong friends, careers, livelihoods, as we cope with the apathy and disbelief of a largely indifferent medical profession. As a complex multisystem disease, this is perhaps not surprising and we are fortunate that there are rare gems in the medical community who get that this is a serious neuro-immune disease requiring serious biomedical care. As the saying goes, if ME/CFS doesnt kill you, you may still lose your life.

THE CANCER LINK IN ME/CFS
In October 2009 we heard that a disproportionately high percentage of patients who have had ME/CFS for 20-30 years were presenting with clonal T-Cell receptor gamma rearrangements (a danger signal for cancer) , and were coming down with deadly lymphomas. As Stewart LeGrice, head of the Center of Excellence in HIV/AIDS and cancer virology at the US National Cancer Institute (NCI) said in the Wall Street Journal, "NCI is responding like it did in the early days of HIV". (http://online.wsj.com/article/SB125501227713473525.html).

XMRV IN HEALTHY CONTROLS TOO
It is important to understand that the October Science findings of the retrovirus XMRV in 67% of patients with ME/CFS, (subsequently revised up to 98% with additional research) and in 4% of healthy controls were established in THREE labs: The US National Cancer Institute, the esteemed Cleveland Clinic, and the upstart Whittemore-Peterson Institute of Neuro-immune disease. (http://www.sciencemag.org/cgi/content/abstract/1179052). The Japanese also looked for, and found XMRV in 1.7% of healthy controls (2009 Cold Spring Harbor Retrovirus Symposium). Like HIV, where not everyone goes on to develop AIDS, it is believed that not all people with XMRV in their blood will develop pathology if in fact it is proven that XMRV causes cancer & neuro-immune disease. But the prospect of 1.7% (580,000) to 4% (1.36Million) Canadians unknowingly infected with a cancer-causing retrovirus is a sobering prospect. Kudos to the Canadian Blood Services for taking this so seriously.

PROSTATE CANCER RESEARCHERS JUMPING INTO CFS/XMRV RESEARCH
What is perhaps most compelling about the XMRV/CFS linkage is that renowned prostate cancer researchers are crossing over to the dark side: namely ME/CFS research. It appears that some (not all) patients with the most malignant prostate cancer Gleason Grades (and XMRV infection) share a genetic defect that is also found in many XMRV-positive ME/CFS patients: namely a defect in the RNase-L antiviral pathway. If you remember high-school chemistry, the suffix ase describes an enzyme, or a chemical that breaks down things. RNase breaks down RNA and (you guessed it), XMRV, and indeed all retroviruses are made up of RNA. In short, some prostate cancer and ME/CFS patients share a genetic susceptibility to viral infection.

Dr Robert Silverman, prostate cancer expert, was in fact one of the authors of the Science paper on XMRV and ME/CFS. His organization, the renowned Cleveland Clinic has drawn an interesting line in the sand. Just recently, the Cleveland Clinic very publicly announced an award to Dr Silverman and his colleague Dr Klein for discovering the linkage between XMRV, prostate cancer, ME/CFS, and RNase-L (See 2-minute video @ the Cleveland Clinic's YouTube site: http://www.youtube.com/watch?v=RWOWvdiXiSE ). Drs Silverman and Klein are being compared to the likes of Dr Sones, who pioneered the use of injectable dye imaging in cardiac surgery.

Similarly, Dr Ila Singh, another eminent prostate cancer researcher, has been forging full-speed ahead in XMRV research on prostate cancer AND ME/CFS. She has wasted no time, testing 45 compounds and 28 drugs on XMRV in vitro (or in the test tube)- and being reported widely in media such as USA Today and Scientific American. Not the behavior one would expect from someone who thinks XMRV is benign. Dr Singh clearly "gets" the plausability of the potential link with ME/CFS. As her team commented in their source article: http://www.plosone.org/article/fetc...icleURI=info:doi/10.1371/journal.pone.0009948

"... the notion that a retrovirus might be involved in both cancer and a neuroimmune illness in humans is not without precedence. Human T-cell lymphotrophic virus, type 1 (HTLV-1), another retrovirus,
causes both T-cell lymphoma/leukemia as well as tropical spastic paraparesis,
a myelopathy due to immune defects resulting from the viral infection."​

Dr Singh is also conducting research on XMRV and ME/CFS with Dr Bateman and Drs Light at ARUP, a cutting-edge national US reference laboratory. The Lights are noted for capturing a spectacular chemical signature of Post-Exertional Malaise in ME/CFS patients that was featured on the cover of the Journal of Pain. (See slides 26 & 27 at http://www.cfids.org/webinar/xmrv-slides-jan2010.pdf). ARUP is using sophisticated blood draw techniques, literally using stopwatches to ensure that collected blood is preserved before any XMRV might degrade.

THE PSYCHIATRY ANGLE
And now for the psychiatry angle: psychiatrists studying this viral neuro-immune disease have been stating for years that the most rigorous Canadian Criteria (2003) for ME/CFS (Summary here: http://www.cfids-cab.org/MESA/me_overview.pdf ) are just too difficult to apply in research. They have also advantageously expanded their market for exercise and feel-good clinics, by including out-of-shape patients, depressed patients, patients with Unexplained Fatigue, together with patients with classical Canadian-Criteria ME/CFS. In fact in the UK, patients with a diagnosis of ME/CFS are routinely denied biological diagnostics, such as lab-work or immunological workups. This creates a self-fulfilling prophesy, a delusion on the part of psychiatrists that ME/CFS has no physicial findings. Eschewing the rigorous Canadian Criteria is a little like saying one should abandon speed limits because no one likes to follow them. Or lumping together appendicitis patients with diffuse stomach ache patients to "simplify" research. Like appendicitis, which has right-sided abdominal pain as a cardinal sign, ME/CFS's hallmark is Post-Exertional Malaise - something the 3 failed XMRV studies have not fastidiously observed.

ABOUT THOSE FAILED XMRV/CFS STUDIES
Lets consider the failed XMRV/CFS studies. An analysis of the British Medical Journals 2010 paper on XMRV, presented as the "trump card" in negative XMRV/CFS research, reveals that their 20 year old blood samples (thats right, 20-year old) were not from Chronic Fatigue Syndrome (ME/CFS) patients, and not remotely comparable to the Science ME/CFS cohort. The BMJ (Nijmegen team) represented their cohort (sourced from Vercoulen et als paper: http://dare.ubn.kun.nl/bitstream/2066/14900/1/4783.pdf) as CFS, when in fact they were studying the blood of tired, depressed patients.

Some actual quotes from the study where the BMJ and Nijmegens 20 year old blood came from:

  • Information on physical abnormalities and treatment relied on self-report.
  • Using a score of 16 or more, 36% of patients could be considered as having a clinical depression.
  • To test generalizability, the present study sample was compared with a recently tested group of 68 patients with Unexplained Fatigue (not ME/CFS).
  • And the clincher: the source of the blood came from a study where they, Minimalized the risk of including patients with delayed convalescence of a viral infection.

For a detailed analysis of the BMJ article's flaws, complete with source references, see: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research , the 5-part article Scandal in BMJs XMRV/CFS Research, posts #1,2,4,6,7. The BMJ stated their XMRV research was on a well-defined cohort of CFS patients, when it was on a group of depressed patients with Unexplained Fatigue which had been EXPLICITLY screened to remove patients with delayed convalescence of a viral infection. Not much chance of finding XMRV in that cohort! How strong are the BMJs conclusions that XMRV isnt in the UK and that it isnt associated with ME/CFS!

PHARMA GIANTS ENTER THE RACE
Multi-billion dollar pharma giant Glaxo Smith Kline (GSK), it appears, does not agree with this cavalier treatment of ME/CFS, and thankfully will be dotting their i's and crossing their t's in their XMRV/CFS research. This is becoming a literal race as researchers and pharma companies jockey for scientific glory and market share for antiretroviral and immune modulating drugs. GSK just announced their own study into XMRV and ME/CFS using none other than the rigorous Canadian AND Fukuda-Criteria patients (as per the Science study); and positive XMRV samples from patients studied by the Science researchers (See: http://www.forums.aboutmecfs.org/showthread.php?4066-New-XMRV-study-to-be-undertaken ). In other words, GSK gets the difference between research on cohorts of depressed, tired patients; versus patients with rigorously defined Canadian/Fukuda criteria ME/CFS, Post-Exertional Malaise, reproducible immune abnormalities (like the RNase-L antiviral defect), and severe, disabling fatigue. Further, by using positive samples from actual ME/CFS patients with XMRV in the Science study, GSK is in effect saying:

  1. We believe that XMRV exists; and
  2. We believe that you found XMRV in your ME/CFS patients.
  3. Further, we believe that it is necessary to look for XMRV in rigorously defined cohorts of ME/CFS patients, particularly those with a viral onset - rather than 20-year old samples of tired, depressed patients. Now, can we please use your samples as a positive control?
In other words, pharma giant Glaxo Smith Kline has interestingly distanced themselves from these failed studies.

These are fascinating times, as retrovirologists and politically-motivated psychiatrists jockey for position. After all, psychiatrists have built an entire industry of exercise and "positive attitude" clinics for patients who are known in the biomedical literature to have persistent opportunistic infections - and who may also have a cancer-causing retrovirus: XMRV. And the psychs wont give up their fiefdoms without a fight. But it is nothing short of earth-shaking that the BMJ's XMRV research team committed such an enormous research blunder while the "big boys" in immunology, molecular biology, retrovirology and oncology take over the exploration of what may indeed be the next AIDS.

SCREENING ME/CFS PATIENTS FROM DONATING BLOOD: A NO-BRAINER
Heres why screening ME/CFS patients from donating blood is necessary:

  • ME/CFS is horrendously under-diagnosed. Many patients go for years without knowing what is causing their bizarre, multisystem symptoms.
  • Mild or early stages of ME/CFS are readily ignored: mistaken for "aging" or (you guessed it) anhedonia, or depression, because patients don't physically enjoy the things they used to enjoy. The more they do, the worse they feel. Particularly given the complex, multi-system nature of the symptoms, misdiagnosis is rampant, and the easy cop-out is a diagnosis of hypochondria. (Remember MS used to be called Hysterical Paralysis; Epilepsy used to be believed to be associated with demons or witchcraft)
  • ME/CFS is like MS in its relapsing/remitting nature. Many patients have had spectacular remissions, returning back to full activity for months or years - only to get felled again (and often worse) later.
A final note on the comment that a ban of ME/CFS blood would send the wrong message, and have a negative connotation. This is no time to be rearranging the deck chairs on the Titanic. Lets get to the bottom of this devastating illness and prevent other poor souls from becoming infected and losing their lives to this disease. Lets get accelerated access to XMRV diagnostics as soon as standardized tests are available. Let's get clinical trials started up IN CANADA. Lets get research funding funneled to XMRV and its possible disease associations. Lets connect our Canadian XMRV researchers with the international leaders in this field. And lets get accelerated drug approvals so patients can have some relief from this devastating disease.

Preventing ME/CFS patients from donating blood, while we wait for more research on whether XMRV is it, is a necessary and timely first step. In fact, its about bloody time.
 
parvofighter

parvofighter

Senior Member
Messages
440
Location
Canada
Copy of letter sent to Cdn Hemophilia contact

Here's the guts of an email I sent to my contact at the Canadian Hemophilia Association on Sunday nite.

 Hi XXX

 Thought you might be interested in this Wall Street Journal article from Sunday April 4th, 10:27 p.m. Some other items also appended below the article.

Potential Risk to Blood Supply Probed
XMRV Virus Gets Attention of Health Officials, but its Unclear if there is any Danger

By AMY DOCKSER MARCUS
An infectious virus linked to two diseases is drawing the attention of public-health officials, who are investigating the potential threat to the nation's blood supply.
 It isn't clear if the virus, known as XMRV, poses a danger, and public-health officials say there isn't evidence of spreading infection. But because of concern over the potential for widespread infection and preliminary evidence that XMRV is transmitted similarly to HIV, officials are quickly trying to determine if action is needed to protect the blood supply.

A woman donated blood last year at a hospital in Tampa, Fla. Officials are trying to find tests for a virus known as XMRV.

XMRV was discovered in 2006 when it was found in tumor samples from men with a rare form of familial prostate cancer. Research has also linked the virus to chronic fatigue syndrome and found it in measurable levels in the blood of healthy people. But the evidence isn't conclusive, as several other studies failed to find XMRV in the blood of people with chronic fatigue syndrome, and it isn't known how prevalent the virus is or whether it causes disease.

"These are early days trying to understand the public health significance of XMRV," said

Jay Epstein, director of the Office of Blood Research and Review at the Food and Drug Administration.

Efforts are under way to find effective tests for the virus and determine its prevalence, led by a working group funded by the National Institutes of Health and including federal agencies such as the FDA and the Centers for Disease Control and Prevention. Blood banks, academic institutions and at least one advocacy group are also involved.

The focus on XMRV is part of a growing effort to better monitor emerging infectionsdisorders that have either increased in humans in recent decades or are deemed a potential threat. Currently there are 12 tests used to block infectious agents from entering the blood supply, such as HIV or hepatitis C, and more screens are under study, including those for dengue, human variant Creutzfeldt-Jakob disease and agents that cause malaria. There is no FDA-licensed lab test for XMRV, and officials say they are still setting standards for diagnosing it.

Public-health officials increasingly recognize that even infections not typically found in the U.S. can quickly come here because of global travel. Many viruses also have long incubation periods, making it harder to recognize that the virus was transmitted by a blood transfusion. In an October 2009 report, a federal advisory committee on blood safety and availability concluded that biovigilance in the U.S. is a "patchwork of activities, not a cohesive national program."

The incidence of infectious diseases being transmitted through transfusions is small, typically only a handful each year, according to the American Red Cross and data reported to the FDA. About 16 million units of whole blood and red blood cells were donated in the U.S. in 2006, the latest data available, according to the 2007 National Blood Collection and Utilization Report. The American Red Cross, which collects almost half of blood donations in the U.S., estimated that about 10,000 donors a year turn out to be infected with pathogens that officials screen for. Nearly half are hepatitis C virus.
Michael P. Busch, who runs the Blood Systems Research Institute in San Francisco and is a member of the XMRV working group, notes that everyone harbors benign viral infections. These viruses are transmitted in every blood transfusion, but aren't known to cause diseases in recipients, says Dr. Busch. Even if XMRV is found to be present in large numbers of blood donors, Dr. Busch notes, it is still necessary to determine if XMRV causes diseases.

The working group was established after a paper was published in October in the journal Science, where researchers reported finding the virus in a majority of 101 patients with chronic fatigue syndrome. The study's co-authors at the Whittemore Peterson Institute for Neuro-Immune Disease, the National Cancer Institute and the Cleveland Clinic,also found the virus in nearly 4% of 218 healthy people used as controls in the study.
 Extrapolating from those numbers, public-health officials estimated that up to 10 million people in the U.S. and hundreds of millions of people globally could be infected with XMRV, or xenotropic murine leukemia virus-related virus.

The apparent link to CFS, which affects an estimated 17 million people world-wide, and has no specific treatments, has been closely followed by the patient advocacy community. The Whittemore Peterson institute, established by the family of a chronic fatigue patient, has started collecting blood from CFS patients who got their diagnosis following a blood transfusion and plan to launch their own study of the issue, says Annette Whittemore, founder and president of the institute.

The CFIDS Association of America, an advocacy group for chronic fatigue syndrome, set up a bank to collect biospecimens to be used in potential studies about CFS, including XMRV-related ones. Researchers at Emory University and the University of Utah published a study last week showing that XMRV may be treatable with drugs that treat HIV.

The AABB, an association of facilities that collect virtually all of the U.S. blood supply, has also set up an XMRV task force, although the virus doesn't appear on a list of infectious agents evaluated by a special AABB transfusion-risk committee, as concerns came out after the latest list was put together.

Labs in Europe reported earlier this year that they haven't been able to replicate the XMRV findings in patients with chronic fatigue syndrome or prostate cancer. And public-health experts say a key issue in sorting out the disparate findings is to reach agreement on tests that are sensitive and reliable in identifying XMRV in the blood.
The federal working group's project has three phases.

First, labs at six participantsincluding the FDA, the National Cancer Institute, the CDC, and the Whittemore Peterson labare using a panel of blood samples to try to establish which of the labs' tests are sensitive and reliable enough to find XMRV in the blood. Results are expected in a few weeks.
In the second phase, also launched, a panel of around 350 different blood samples developed by Dr. Busch's team will be sent to four different labs. Some of the samples are from chronic fatigue patients known to have XMRV. Others from healthy donors have been spiked with the virus or have tested negative. All the samples are blinded, and the study will see whether the different labs can agree on XMRV positive status for chronic fatigue patients.
A third phase may be launched later, using frozen specimens in federal repositories dating to the 1970s. These repositories link donors to recipients and will allow researchers to see if XMRV was transferred in transfusions and help determine prevalence in the past as well as today, as well as geographical clusters or associations with age and gender.

"There is a balance to what we are doing," says Simone A. Glynn, branch chief of transfusion medicine and cellular therapies at the National Heart, Lung and Blood Institute and chairperson of the XMRV working group. "You do not want to transfuse an infectious agent that causes problems. But you do not want to take blood out of the system that is not causing any problems."

Write to Amy Dockser Marcus at amy.marcus@wsj.com
​

A few other items that might interest you:

 Dr Ila Singhs work. Dr Singh is a pre-eminent researcher in prostate cancer. Because some prostate cancer and CFS patients share a genetic defect: the RNase-L antiviral pathway deficiency (I have tested positive for this defect too), she turned her attention to CFS. While the link between prosate cancer and XMRV; as well as CFS and XMRV have yet to be definitively validated, this is not stopping her from proceeding full-speed ahead in CFS research too. She is doing a fast-track project with ARUP, using highly sophisticated collection techniques (a far cry from the 20-year old blood researched by the British Medical Journal). And she and her team just published work on in vitro response of XMRV to 45 antiretroviral compounds and 28 drugs.

oSome Antiretroviral HIV Drugs already proven to work against XMRV in vitro: The study of drugs against XMRV was published at PLoS One here http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948 and also reported in Scientific American here http://www.scientificamerican.com/blog/post.cfm?id=hiv-drugs-could-have-second-life-as-2010-04-01 . As her team commented in their source article:
"... the notion that a retrovirus might be involved in both cancer and a neuroimmune illness in humans is not without precedence. Human T-cell lymphotrophic virus, type 1 (HTLV-1), another retrovirus, causes both T-cell lymphoma/leukemia as well as tropical spastic paraparesis, a myelopathy due to immune defects resulting from the viral infection."​

 Pharma giant Glaxo Smith Kline just announced their own study into XMRV and ME/CFS using none other than the rigorous Canadian AND Fukuda-Criteria patients (as per the Science study); and positive XMRV samples from patients studied by the Science researchers (See: http://www.forums.aboutmecfs.org/showthread.php?4066-New-XMRV-study-to-be-undertaken ). In other words, GSK gets the difference between research on cohorts of depressed, tired patients; versus patients with rigorously defined Canadian/Fukuda criteria ME/CFS, reproducible immune abnormalities, and severe, disabling fatigue. Further, by using positive samples from actual CFS patients with XMRV in the Science study, GSK is in effect saying:
 1) We believe that XMRV exists; and
 2) We believe that you found XMRV in CFS patients.
 3) Further, we believe that it is necessary to look for XMRV in rigorously defined cohorts of ME/CFS patients, particularly those with a viral onset - rather than 20-year old samples of tired, depressed patients. Now, can we please use your samples as a positive control? FYI if you look at the wording of the WSJ article above too, their description of the 2nd phase matter-of-factly states:
Some of the samples are from chronic fatigue patients known to have XMRV.​

This isnt all that surprising, given that the CFS/XMRV findings were validated in 3 labs: Cleveland Clinic, National Cancer Institute and Whittemore Peterson Institute

Cleveland Clinic announces Award for XMRV/Prostate/CFS Discovery The esteemed Cleveland Clinic recently went very public with their support of the linkage between XMRV, prostate cancer, the RNase-L antiviral deficiency, and CFS. See 2-minute video @ the Cleveland Clinic's YouTube site: http://www.youtube.com/watch?v=RWOWvdiXiSE . The discoverers of this linkage: prostate cancer researchers Drs Silverman and Klein are being compared to the likes of Dr Sones, who pioneered the use of injectable dye imaging in cardiac surgery.

All this to say that things are moving rapidly ahead to not only understand if XMRV causes disease but also how to treat it, and we have the support of prostate cancer researchers and HIV research to thank for that. As an indication of the support we might have for rapidly accessable XMRV diagnostics and treatment, check out this thread on a CFS forum: http://www.forums.aboutmecfs.org/sh...r&highlight=canadian+government+prostate+teal . The entire parliament wore teal striped ties last week in support of Jack Laytons recent battle with prostate cancer. In this thread also, patients talk about the various stakeholders (including hemophilia and rare blood disorders) who might joint the fight for XMRV care. If XMRV is proven to be causal, count us in to try to help mobilize diagnostics, clinical trials, drug access you name it in Canada.

This whole XMRV thing must be very very worrisome to your members BUT if it proves to be pathogenic, you wont be alone in fighting it.
 
fred

fred

The game is afoot
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400
Permission to repost ?

@Parvo - many thanks for all this - can we cut and paste from both letters?
 
B

bullybeef

Senior Member
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488
Location
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This is a great idea. Canada has, maybe indirectly, created a forest fire with this announcement, and it has given us the opportunity to this news to spread the world.

Great work Fred and Parvo.
 
parvofighter

parvofighter

Senior Member
Messages
440
Location
Canada
Go for it!

Fred and bullybeef - go right ahead and use any or all of these letters - whatever helps you.

Parvo:Retro smile:
 
fred

fred

The game is afoot
Messages
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mygirlsblood

http://www.mygirlsblood.com/index.php?page_id=1

MyGirlsBlood is a nonprofit charity and an international social network dedicated to sharing the lives of girls and women with bleeding disorders.

We now have over 40 ladies participating from the following countries in our social network: USA, New Zealand, Canada, India, Philippines and Sweden.
 
Frickly

Frickly

Senior Member
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Thanks Fred for getting this started! FYI.....I am working on a bulletin to put out on XMRV Global Action Cause. I am just catching up but will use Parvo's great info here with a request for a letter writing campaign.

parvofighter said:
Great Idea Fred, and thanks for setting this up.:Retro smile:

Here's a letter I wrote to the Canadian media that you guys are welcome to cut/paste & use in any way that's helpful. FYI this is exactly the kind of action-focused initiative we are wanting to disseminate on XMRV Global Action. Kind of a leap-frogging initiative to help us learn from other countries' initiatives. So that we're not re-inventing the wheel with our limited energies, and so we're leveraging connections with other possible XMRV groups (eg. prostate cancer, etc) for maximal impact. Here's the link for XMRV Global Action on Facebook: http://www.facebook.com/photo.php?pid=5230892&id=815020522&ref=nf#!/pages/XMRV-Global-Action/216740433250?ref=ts

A WELCOME BAN ON ME/CFS BLOOD DONATIONS
The news that the Canadian Blood Services is barring anyone who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) from donating blood is welcome and necessary. Patients intimately familiar with ME/CFS, often suffering from multiple persistent opportunistic infections (Epstein-Barr, Human Herpes-6, Parvovirus B19, etc.), are not at all surprised that a retrovirus might be at the root of their disease. After all, thats what retroviruses do they act like a cheerleader to spur on common infections that most people are able to fight off. For years and even decades patients have been laughed out of immunology, rheumatology, and infectious disease specialists offices, left often to battle on our own with crushing exhaustion, unrefreshing sleep, recurring low-grade fever, sore throats, swollen uvula and lymph nodes, achey, achey legs, flu-like malaise all exacerbated by trivial activity. To make matters even worse, our symptoms wax and wane like MS so its no wonder that ME/CFS patients report having donated blood during remissions. Many of us have gone on to develop cardiac complications, stroke symptoms, vasculitis. And many of us are housebound or bedbound. Many of us have lost family, lifelong friends, careers, livelihoods, as we cope with the apathy and disbelief of a largely indifferent medical profession. As a complex multisystem disease, this is perhaps not surprising and we are fortunate that there are rare gems in the medical community who get that this is a serious neuro-immune disease requiring serious biomedical care. As the saying goes, if ME/CFS doesnt kill you, you may still lose your life.

THE CANCER LINK IN ME/CFS
In October 2009 we heard that a disproportionately high percentage of patients who have had ME/CFS for 20-30 years were presenting with clonal T-Cell receptor gamma rearrangements (a danger signal for cancer) , and were coming down with deadly lymphomas. As Stewart LeGrice, head of the Center of Excellence in HIV/AIDS and cancer virology at the US National Cancer Institute (NCI) said in the Wall Street Journal, "NCI is responding like it did in the early days of HIV". (http://online.wsj.com/article/SB125501227713473525.html).

XMRV IN HEALTHY CONTROLS TOO
It is important to understand that the October Science findings of the retrovirus XMRV in 67% of patients with ME/CFS, (subsequently revised up to 98% with additional research) and in 4% of healthy controls were established in THREE labs: The US National Cancer Institute, the esteemed Cleveland Clinic, and the upstart Whittemore-Peterson Institute of Neuro-immune disease. (http://www.sciencemag.org/cgi/content/abstract/1179052). The Japanese also looked for, and found XMRV in 1.7% of healthy controls (2009 Cold Spring Harbor Retrovirus Symposium). Like HIV, where not everyone goes on to develop AIDS, it is believed that not all people with XMRV in their blood will develop pathology if in fact it is proven that XMRV causes cancer & neuro-immune disease. But the prospect of 1.7% (580,000) to 4% (1.36Million) Canadians unknowingly infected with a cancer-causing retrovirus is a sobering prospect. Kudos to the Canadian Blood Services for taking this so seriously.

PROSTATE CANCER RESEARCHERS JUMPING INTO CFS/XMRV RESEARCH
What is perhaps most compelling about the XMRV/CFS linkage is that renowned prostate cancer researchers are crossing over to the dark side: namely ME/CFS research. It appears that some (not all) patients with the most malignant prostate cancer Gleason Grades (and XMRV infection) share a genetic defect that is also found in many XMRV-positive ME/CFS patients: namely a defect in the RNase-L antiviral pathway. If you remember high-school chemistry, the suffix ase describes an enzyme, or a chemical that breaks down things. RNase breaks down RNA and (you guessed it), XMRV, and indeed all retroviruses are made up of RNA. In short, some prostate cancer and ME/CFS patients share a genetic susceptibility to viral infection.

Dr Robert Silverman, prostate cancer expert, was in fact one of the authors of the Science paper on XMRV and ME/CFS. His organization, the renowned Cleveland Clinic has drawn an interesting line in the sand. Just recently, the Cleveland Clinic very publicly announced an award to Dr Silverman and his colleague Dr Klein for discovering the linkage between XMRV, prostate cancer, ME/CFS, and RNase-L (See 2-minute video @ the Cleveland Clinic's YouTube site: http://www.youtube.com/watch?v=RWOWvdiXiSE ). Drs Silverman and Klein are being compared to the likes of Dr Sones, who pioneered the use of injectable dye imaging in cardiac surgery.

Similarly, Dr Ila Singh, another eminent prostate cancer researcher, has been forging full-speed ahead in XMRV research on prostate cancer AND ME/CFS. She has wasted no time, testing 45 compounds and 28 drugs on XMRV in vitro (or in the test tube)- and being reported widely in media such as USA Today and Scientific American. Not the behavior one would expect from someone who thinks XMRV is benign. Dr Singh clearly "gets" the plausability of the potential link with ME/CFS. As her team commented in their source article: http://www.plosone.org/article/fetc...icleURI=info:doi/10.1371/journal.pone.0009948

"... the notion that a retrovirus might be involved in both cancer and a neuroimmune illness in humans is not without precedence. Human T-cell lymphotrophic virus, type 1 (HTLV-1), another retrovirus,
causes both T-cell lymphoma/leukemia as well as tropical spastic paraparesis,
a myelopathy due to immune defects resulting from the viral infection."​

Dr Singh is also conducting research on XMRV and ME/CFS with Dr Bateman and Drs Light at ARUP, a cutting-edge national US reference laboratory. The Lights are noted for capturing a spectacular chemical signature of Post-Exertional Malaise in ME/CFS patients that was featured on the cover of the Journal of Pain. (See slides 26 & 27 at http://www.cfids.org/webinar/xmrv-slides-jan2010.pdf). ARUP is using sophisticated blood draw techniques, literally using stopwatches to ensure that collected blood is preserved before any XMRV might degrade.

THE PSYCHIATRY ANGLE
And now for the psychiatry angle: psychiatrists studying this viral neuro-immune disease have been stating for years that the most rigorous Canadian Criteria (2003) for ME/CFS (Summary here: http://www.cfids-cab.org/MESA/me_overview.pdf ) are just too difficult to apply in research. They have also advantageously expanded their market for exercise and feel-good clinics, by including out-of-shape patients, depressed patients, patients with Unexplained Fatigue, together with patients with classical Canadian-Criteria ME/CFS. In fact in the UK, patients with a diagnosis of ME/CFS are routinely denied biological diagnostics, such as lab-work or immunological workups. This creates a self-fulfilling prophesy, a delusion on the part of psychiatrists that ME/CFS has no physicial findings. Eschewing the rigorous Canadian Criteria is a little like saying one should abandon speed limits because no one likes to follow them. Or lumping together appendicitis patients with diffuse stomach ache patients to "simplify" research. Like appendicitis, which has right-sided abdominal pain as a cardinal sign, ME/CFS's hallmark is Post-Exertional Malaise - something the 3 failed XMRV studies have not fastidiously observed.

ABOUT THOSE FAILED XMRV/CFS STUDIES
Lets consider the failed XMRV/CFS studies. An analysis of the British Medical Journals 2010 paper on XMRV, presented as the "trump card" in negative XMRV/CFS research, reveals that their 20 year old blood samples (thats right, 20-year old) were not from Chronic Fatigue Syndrome (ME/CFS) patients, and not remotely comparable to the Science ME/CFS cohort. The BMJ (Nijmegen team) represented their cohort (sourced from Vercoulen et als paper: http://dare.ubn.kun.nl/bitstream/2066/14900/1/4783.pdf) as CFS, when in fact they were studying the blood of tired, depressed patients.

Some actual quotes from the study where the BMJ and Nijmegens 20 year old blood came from:

  • Information on physical abnormalities and treatment relied on self-report.
  • Using a score of 16 or more, 36% of patients could be considered as having a clinical depression.
  • To test generalizability, the present study sample was compared with a recently tested group of 68 patients with Unexplained Fatigue (not ME/CFS).
  • And the clincher: the source of the blood came from a study where they, Minimalized the risk of including patients with delayed convalescence of a viral infection.

For a detailed analysis of the BMJ article's flaws, complete with source references, see: http://www.forums.aboutmecfs.org/showthread.php?3860-Scandal-in-BMJ-s-XMRV-CFS-Research , the 5-part article Scandal in BMJs XMRV/CFS Research, posts #1,2,4,6,7. The BMJ stated their XMRV research was on a well-defined cohort of CFS patients, when it was on a group of depressed patients with Unexplained Fatigue which had been EXPLICITLY screened to remove patients with delayed convalescence of a viral infection. Not much chance of finding XMRV in that cohort! How strong are the BMJs conclusions that XMRV isnt in the UK and that it isnt associated with ME/CFS!

PHARMA GIANTS ENTER THE RACE
Multi-billion dollar pharma giant Glaxo Smith Kline (GSK), it appears, does not agree with this cavalier treatment of ME/CFS, and thankfully will be dotting their i's and crossing their t's in their XMRV/CFS research. This is becoming a literal race as researchers and pharma companies jockey for scientific glory and market share for antiretroviral and immune modulating drugs. GSK just announced their own study into XMRV and ME/CFS using none other than the rigorous Canadian AND Fukuda-Criteria patients (as per the Science study); and positive XMRV samples from patients studied by the Science researchers (See: http://www.forums.aboutmecfs.org/showthread.php?4066-New-XMRV-study-to-be-undertaken ). In other words, GSK gets the difference between research on cohorts of depressed, tired patients; versus patients with rigorously defined Canadian/Fukuda criteria ME/CFS, Post-Exertional Malaise, reproducible immune abnormalities (like the RNase-L antiviral defect), and severe, disabling fatigue. Further, by using positive samples from actual ME/CFS patients with XMRV in the Science study, GSK is in effect saying:

  1. We believe that XMRV exists; and
  2. We believe that you found XMRV in your ME/CFS patients.
  3. Further, we believe that it is necessary to look for XMRV in rigorously defined cohorts of ME/CFS patients, particularly those with a viral onset - rather than 20-year old samples of tired, depressed patients. Now, can we please use your samples as a positive control?
In other words, pharma giant Glaxo Smith Kline has interestingly distanced themselves from these failed studies.

These are fascinating times, as retrovirologists and politically-motivated psychiatrists jockey for position. After all, psychiatrists have built an entire industry of exercise and "positive attitude" clinics for patients who are known in the biomedical literature to have persistent opportunistic infections - and who may also have a cancer-causing retrovirus: XMRV. And the psychs wont give up their fiefdoms without a fight. But it is nothing short of earth-shaking that the BMJ's XMRV research team committed such an enormous research blunder while the "big boys" in immunology, molecular biology, retrovirology and oncology take over the exploration of what may indeed be the next AIDS.

SCREENING ME/CFS PATIENTS FROM DONATING BLOOD: A NO-BRAINER
Heres why screening ME/CFS patients from donating blood is necessary:

  • ME/CFS is horrendously under-diagnosed. Many patients go for years without knowing what is causing their bizarre, multisystem symptoms.
  • Mild or early stages of ME/CFS are readily ignored: mistaken for "aging" or (you guessed it) anhedonia, or depression, because patients don't physically enjoy the things they used to enjoy. The more they do, the worse they feel. Particularly given the complex, multi-system nature of the symptoms, misdiagnosis is rampant, and the easy cop-out is a diagnosis of hypochondria. (Remember MS used to be called Hysterical Paralysis; Epilepsy used to be believed to be associated with demons or witchcraft)
  • ME/CFS is like MS in its relapsing/remitting nature. Many patients have had spectacular remissions, returning back to full activity for months or years - only to get felled again (and often worse) later.
A final note on the comment that a ban of ME/CFS blood would send the wrong message, and have a negative connotation. This is no time to be rearranging the deck chairs on the Titanic. Lets get to the bottom of this devastating illness and prevent other poor souls from becoming infected and losing their lives to this disease. Lets get accelerated access to XMRV diagnostics as soon as standardized tests are available. Let's get clinical trials started up IN CANADA. Lets get research funding funneled to XMRV and its possible disease associations. Lets connect our Canadian XMRV researchers with the international leaders in this field. And lets get accelerated drug approvals so patients can have some relief from this devastating disease.

Preventing ME/CFS patients from donating blood, while we wait for more research on whether XMRV is it, is a necessary and timely first step. In fact, its about bloody time.
Click to expand...
 
Frickly

Frickly

Senior Member
Messages
1,049
Location
Texas
If anyone has any contact information that has not been listed would you please post it here?

Thanks,
 
L

leelaplay

member
Messages
1,576
Wall Street Journal Blood Supply Risk, Planning required - Letter to Australian Minister for Health

Alex Young <alex3619@optusnet.com.au> to CO-CURE today

The following email has been sent to the Australian Minister for Health, Nicola Roxon.
--------------------


From: Alex Young
To: nicola.roxon.mp@aph.gov.au
Sent: Wednesday, April 07, 2010 8:46 PM
Subject: Wall Street Journal Blood Supply Risk, Planning required


The Hon Nicola Roxon MP, Minister for Health and Ageing,

The following link is to an article in the Wall Street Journal, regarding
the risk to public health of the virus XMRV:

http://online.wsj.com/article/SB10001424052702303450704575160081295988608.html?mod=googlenews_wsj

Planning should have already commenced to deal with this potential pandemic.
This virus may yet turn out to be innocuous, but over six percent of the
world's population might be affected, based on realistic estimates. This is
calculated from combining the percentages of healthy people who are
infected, with percentages from those illnesses that are suspected to be
caused by it. The 6% figure could rise to 10% if certain worst case
assumptions are real, but this is unlikely. However, if over two million
Australians turn out to be infected with a potentially lethal retrovirus,
you can expect serious repercussions to Australia. Planning must commence
now, if it hasn't started already.

The best case scenario is, of course, that this virus turns out to be an
innocuous "passenger" virus, in which case only the cost of preliminary
planning will be wasted. I, and many others, are not yet advocating urgent
action, as the science isn't there yet. The need for urgent action may yet
arise before the end of the year, so your office should be tracking public
announcements from the USA regarding this virus.

As for treatment, a number of antiretrovirals have some efficacy in the lab,
although human trials have not commenced. If the risks are confirmed by
further research, then between 340,000 (using Japanese prevalence data) to
two million Australians will require urgent antiretrovirals at considerable
cost, as many of these people are disabled and could not afford commercial
purchase of these drugs at current rates. Of course, only mass screening
will enable all these people to be identified, so that has to be planned for
as well. As the potential cost to Australia for drug subsidy could easily be
in excess of twenty billion dollars a year, urgent attention to this problem
is required.

The good news is that with this treatment several hundred thousand disabled
Australians may be able to reenter the workforce.

Thank you for your attention,
Alex Young,
B.Sc., B.Inf.

--
 
Frickly

Frickly

Senior Member
Messages
1,049
Location
Texas
Hi all,

I going to post an action item on XMRV Global Action Cause. If anyone has more suggestions on contacts please post here or on advocacy thread. Thanks!

The National Hemophilia Foundation main site
http://www.hemophilia.org/NHFWeb/Mai...=0&contentid=1

List of regional Chapters and other bleeding disorder organization sites.
http://www.hemophilia.org/NHFWeb/Mai...&contentid=193

And the NHF Facebook page.
http://www.facebook.com/NationalHemophiliaFoundation
AABB
http://www.aabb.org/Content/Contact_Us/ContactUs.htm

European and World Hemophilia Organizations:
The European Haemophilia Consortium (includes contact details for all member countries)
http://www.ehc.eu/index.php?id=60
The World Federation of Hemophilia (based in Canada)
http://www.wfh.org/index.asp?lang=EN
The World Federation of Hemophilia USA
http://www.wfhusa.org/
 
Frickly

Frickly

Senior Member
Messages
1,049
Location
Texas
Help Please?

Hi all,

I am getting ready to post this action item on xmrv global action facebook cause. If anyone has any additional contacts please post here. Thanks Fred!

Suggested Contacts for UK Residents:

You can find your local MP here: http://www.theyworkforyou.com/

The main party shadow health ministers:
Andrew Lansley, Conservative lansleya@parliament.uk
Norman Lamb, LibDem normanlamb@hotmail.com (he also has a Facebook page)

Suggested Contacts for U.S. Residents:
The National Hemophilia Foundation main site
http://www.hemophilia.org/NHFWeb/Mai...=0&contentid=1

List of regional Chapters and other bleeding disorder organization sites.
http://www.hemophilia.org/NHFWeb/Mai...&contentid=193

And the NHF Facebook page.
http://www.facebook.com/NationalHemophiliaFoundation
AABB
http://www.aabb.org/Content/Contact_Us/ContactUs.htm

European and World Hemophilia Organizations:
The European Haemophilia Consortium (includes contact details for all member countries)
http://www.ehc.eu/index.php?id=60
The World Federation of Hemophilia (based in Canada)
http://www.wfh.org/index.asp?lang=EN
The World Federation of Hemophilia USA
http://www.wfhusa.org/
 
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