Blood Banks Urged to Discourage Chronic Fatigue Patients From Giving Blood

They're just spreading fear," says Jos van der Meer, a CFS researcher at Radboud University Nijmegen Medical Centre in the Netherlands. "Let's do some more serious science first."


http://news.sciencemag.org/scienceinsider/2010/06/blood-banks-urged-to-discourage.html

Blood Banks Urged to Discourage Chronic Fatigue Patients From Giving Blood

by Martin Enserink on June 21, 2010 6:22 PM

Blood banks should ask patients with chronic fatigue syndrome (CFS) not to donate blood or blood products because they may pass on a virus suspected of causing the elusive syndrome. That's the new advice coming from the AABB, an international association formerly known as the American Association of Blood Banks. The recommendation is based on a controversial paper published last year in Science that suggested that a human retrovirus may play a role in CFS.

Some scientists say the decision is premature, because the evidence for the link between xenotropic murine leukemia virus-related virus (XMRV) and CFS is tenuous, and three teams have failed to replicate the findings. "It's way too early for this. They're just spreading fear," says Jos van der Meer, a CFS researcher at Radboud University Nijmegen Medical Centre in the Netherlands. "Let's do some more serious science first."

But the CFIDS Association of America, a patient advocacy group, commends the panel for its recommendation in a statement. The group has advised patients against donating blood or organs for years. (CFIDS, or chronic fatigue and immune dysfunction syndrome, is another name for CFS, as is myalgic encephalomyelitis.)

The new recommendations were announced in a short statement posted on AABB's Web site on Friday; they came from a special XMRV taskforce, but were adopted by the AABB Board of Directors and published in an Association Bulletin sent to members.

Over the decades, a slew of viruses and bacteria have been proposed as the culprit in CFSsometimes to much fanfarebut so far, each one of them has proven innocent upon closer examination. That's why many researchers were skeptical last year when a group of researchers reported to have found traces of the DNA of XMRV in the white blood cells of 67% of a group of 101 CFS patients, compared with only 3.7% among healthy controls. The researchers, led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, also found that the virus could infect white blood cells, and concluded that it could play a role in CFS pathogenesis. XMRV had previously been linked to prostate cancer.

Since the Science paper appeared, three other teamstwo from the United Kingdom and one from the Netherlandshave looked for XMRV in their own samples from a total of 388 CFS patients. As they reported in PloS One, Retrovirology, and the British Medical Journal (BMJ), they found it in none of the patients; the two studies that included healthy controls, failed to detect XMRV in them as well. Van der Meer, the first author on the BMJ paper, says he has heard of several other as-yet unpublished studies that failed to find a link.

CFS scientists also poked holes in Mikovits's paper's methodology in three Technical Comments published by Science last month, with one team calling the paper "potentially misleading." Among other things, the critics said, the study failed to properly describe the patient population, and it seemed not to have considered the possibility that patients might be infected with XMRV as a result of having CFS, rather than the other way around. (A rebuttal by Mikovits and co-author Francis Ruscetti of the National Cancer Institute in Bethesda, Maryland is here.)

Canada, Australia, and New Zealand have already announced measures to avoid CFS patients from becoming donors. The ultimate responsibility for the blood supply in the United States lies with the Food and Drug Administration, which so far has not issued guidelines pertaining to XMRV. But based on the recommendations, individual blood banks should actively discourage CFS patients through information materials available at the site where they give blood, the AABB task force says. There is no approved blood test for XMRV.

Louis Katz, a member of the task force on XMRV, says the reasoning behind the recommendations is "pretty straightforward." Although not all the answers are in about the agent's involvement in CFS, it's a "prudent approach" to have patients avoid blood donations, he says. "If [XMRV] turns out to be important, I don't want to be criticized later for doing nothing when I could have done something," says Katz, who is medical director at the Mississippi Valley Regional Blood Center in Davenport, Iowa.

Besides, he says, the measure won't greatly affect the number of donors. Current CSF patients are unlikely to give blood anyway; the panel is primarily worried about those who decide to donate after recovering, says Katz. "I think the blood supply can tolerate it if they lay out while we sort this all out," According to the CFIDS Association, a survey conducted by the group has shown that more than 6% of CFS patients has given blood at least one time following their diagnosis.

In an e-mail sent to ScienceInsider, Mikovits says she stands by her results and says that the recommendations are "absolutely not premature ... no one who has a CFS diagnosis, and thus is possibly infected XMRV, should donate blood."

 

Good find!
But another article that shows the influence of Van der Meer in this business
he is kind of the "spokesman" of the psycho-ME/cfs approachers, and stil he brings crap:

-again the cohort question, which is properly answered by Mikovits for about a 1000 times (patients not just from incline, but most all over the USA/Canada
-again the patholog or passenger question...while Mikovits/Ruscetti have said 1000 times that causality still has to be confirmed, but yet the difference between controls (4%) and patients (first 67%, later +- 99%) doesnt seem to indicate that this is just an oppurtunistic infection...

Why just repeat the same things, asking the same questions, to undermine the science study????????????
does he think that, if he repeats the same crap for 1000 times, there will be a moment that people will start to believe his nonsense?

 

It was fine article until I got to this point:

(A rebuttal by Mikovits and co-author Francis Ruscetti of the National Cancer Institute in Bethesda, Maryland is here.)


If you are going to include the reason for criticism in the body of the article, you need to fairly include the rebuttal in the body, not just give a link.

Tina

 

Putting all questions of XMRV to one side, it simply beggars belief that any intelligent person could think it's a good idea for chronically sick people whose condition is a medical mystery to donate blood! Why on earth would anyone think it was sensible to assume that there is nothing harmful in our blood? This sort of attitude is what fuels all the paranoia and extremism associated with ME/CFS politics. How on earth are we supposed to process such insanity? What kind of theory could explain the thinking of somebody who thinks people who are sick and nobody knows why ought to carry on donating blood?

There's the common-sense theory that takes the person at their word and concludes that they must genuinely be severely dogmatic in their view that all people in the ME/CFS wastebasket category are purely malingerers and psychosomatics and have nothing genuinely wrong with them. But that point of view is incredibly hard to comprehend given the overwhelming evidence of the "serious science" that has been done. And for the ME/CFS patient, this leads only in one direction: rage that somebody so unscientific, incurious, dogmatic and disrespectful can be allowed to hold any sway at all. It leads to all the "unreasonable behaviour" and aggression that so many of us display - and I include myself in that of course, it is a massive struggle to rein all that in for the sake of being listened to.

And then there are the conspiracy theory views that just find it impossible to comprehend that anybody can really be that stupid and yet reach such influential positions in dictating health policy - and so look for alternative explanations. Which lead to extremely dark places: what kind of evil masterplan would encourage severely sick and disabled people to spread their illness through the general population?

So the premise of people like this, who insist that "what we don't know can't hurt us" and are supremely confident in the face of overwhelming evidence that there's "nothing to see here"...this premise, repeated endlessly to oppress us leaves us with two natural instinctive reactions: paranoia or anger.

I remain agnostic as to which theory would be a more accurate description of their motivations. One thing at least is clear, that they are acting in defence of their own views and their own interests, and the people who are acting this way at the moment are the shrinking epicentre of the psychosomatic approach - those in the US, UK, and Netherlands, who appear increasingly isolated and defensive.

I do have a clear thought as to how the ME/CFS patient might best respond to this challenge though. Whenever some monster pops up and starts babbling in this way, presenting us with a choice between unreasonable rage and extreme paranoia, we should reject that choice. None of the above. Anger is an energy, and we should hold that anger, and channel it - but productively, not in a way designed to undermine our cause. Just as terrorist acts provide a ready excuse for brutal wars of oppression, so our reactions of rage will only fuel further lack of sympathy in the public mind. Our angered reactions need to be ones that the general public can identify with and accept and support. And paranoia doesn't mean they aren't out to get you - so it's not a problem to explore and theorise and try to delve away to uncover inconvenient hidden truths, but it is a problem to do so in a wild and unfocused way, jumping to conclusions and throwing out bizarre theories to try to explain what is, to us, inexplicable: conduct your conspiracy theory invvestigations like an investigative journalist dealing in facts, rather than as a random internet blogger putting out the first thoughts that come to mind.

In other words, if they offer you the choice between behaving like a violent psychopath or a raving paranoid, reject it, and fight to remain who you are: a reasonable person.

And don't, whatever you do, give blood !!!

 

Desperation.

 

I guess van der Meer is not afraid of prostate cancer.

 

I completely agree. I've been sick for 20 years. I can't believe that anyone who is sick with an illness of unknown origin would ever give blood. I mean, I would never claim that I know for certain that my blood contains something infectious. But it's common sense to think that it might be possible. I'm very glad that I never gave blood after I got sick.

But then I start thinking about all my blood donations in the years before I got sick. If XMRV studies linking it to ME/CFS are confirmed, and if XMRV turns out to be the "puppet master", meaning that folks could be infected with it long before they actually get sick, then maybe I contributed to contamination of the blood supply. I know I had a 2 gallon pin and probably was close to 3 gallons.

 

I 100% agree and I have been saying this since before I got CFS. They should prohibit anyone with a disease of unknown etiology (and supposedly autoimmune etiology as well) from donating. Because who knows? Maybe 20 years later they will find that "unknown" was really "infectious - transmissible by blood". Its best to take the precautionary principle and just defer people unless they are perfectly healthy. The impact to the blood supply from deferring CFS, RA, MS, etc.. patients is probably next to nothing anyways.

Which brings me to my next point. I would think that, even in an absence of an outright "ban" for CFS, a person with the symptoms of "CFS" would be deferred as a blood donor based on the screening questionnaire. IIRC it selects out people who have been "feeling ill" recently. So unless you outright lie many times in the interview, it would be hard for them to accept someone with "CFS" because the majority of people with CFS are never in a situation where they aren't "feeling ill". *shrug*

 

Yes, amongst you and your chums.

 

I think its good CFS patients aren't aloud to donate,

However when will they stop past prostate cancer sufferers from donating blood? A lot of people have had prostate cancer and have thankfully recovered, there must be millions donating now?

 

Is it because you cannot donate when you have cancer?

 

No you can donate when you have recovered from prostate cancer, I think you have to wait a certain amount of years though.

 

This is very similar to the CFS recommended ban, apart from the recovery bit.

 

I think de Meer's comment here shows how strong this bias is. He is soooooo sure that he is willing to say people with CFs should continue to donate blood. Of course, could a difference be that his country is allowed to use that virus killing chemical on blood?

Either way, I can't fathom AABB wanting to spread fear. They serve the interests of their members, which make money off blood products. They would want to encourage more blood donations. You will notice that the bulletin was put out on a Friday afternoon. Is there a press release? I don't think so. So I see no motive for wanting to spread fear. Looks like the opposite. They want to get info to their members with little attention.

Seems de Meer and his ilk will not go down without a fight, kicking and screaming "No, No, say it isn't so!"

"Can't be a virus, just can't be."

If CFS is a "different kind of depression" or a genetic weakness in the HPA axis, then no problem in donating blood. And evidently, this is de Meer's story and he is sticking to it. I can understand his belief. But a retrovirus is just as logical an explanation. So at the least, he should have an open mind. And sorry, negative studies don't mean 'nothin' considering the method limitations, not to mention the lack of disclosure in the third one.

No matter that XMRV's first target and third target are the very immune system cells that dysfunction in CFS patients. No matter that it is infectious. "It just can't be a virus, just can't be."

Ten years later, in a mental health ward, De Meer is sitting in his lonely room, "It just can't be a virus, just can't be."

This is just my imagination, folks.

Tina

 

http://www.mmdnewswire.com/xmrv-9040.html

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

Gendringen, NL (MMD Newswire) June 22, 2010 --

The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.

In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.

On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).

The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.

The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.

 

To SickofCFS - thanks for your kind words! I wasn't really feeling guilty about those blood donations that I did before I got sick. But I was feeling sad about the possibility that I (along with other healthy folks who later came down with ME/CFS) contributed infected blood to others. Of course I know that even if I was infected with something back before I got sick there was no way I could have known. I was healthy as a horse as far as I knew - hiking, running, lifting weights, etc.

As you said, blood transfusions come with a certain amount of risk. We all do the best that we can with the information that we have at the time. But thanks so much for your comment.

 

wow

isn't this worth just a special thread??? what a news!

 

Originally Posted by Rivotril
Why just repeat the same things, asking the same questions, to undermine the science study????????????

That's what loons do! People who do not have the facts on their side!!