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letter Nijmegen to Whitemoore

VillageLife

Senior Member
Messages
674
Location
United Kingdom
It's a good thing those Canadian, Aussies and Kiwi public officials are so out to lunch

A friend of mine got this email from Jerry Holmberg on Friday, He seems to say that Canada, Australia, and New Zealand are not exactly stopping people.....

-----------------------------
We have been very busy since the first report published in Science (Oct
2009). Although there has been confounding studies reported in the US
and Europe, we still are moving ahead to clarify the testing and our
understanding of the risk. Once we have standardized the testing, we
can then proceed with the epidemiology related to transmission.

I am aware of the action of Canada, Australia, and New Zealand. From my
understanding, the Canadian action is only for Canadian Blood Service
and not Hema-Quebec. Also all three of these blood collections are not
asking a question, only deferring if the potential donor offers the
information regarding a diagnosis with CFS.

At the present time, neither the FDA nor the blood community have
established a deferral policy relative to XMRV, as you know there is
currently no demonstrated association between the transmission of XMRV
and blood transfusion transmitted disease. However, FDA regulations
require that donors should be in good health. In the absence of FDA
guidance or blood community standard on CFS, the blood collection
center's medical director is responsible for determining whether a donor
with history of CFS is in good health.

We are having the CFSAC on May 10th and I will also be discussing this
with the Medical Advisory Committee of the American Red Cross in May.

Jerry A. Holmberg

--------------------------
 

ukxmrv

Senior Member
Messages
4,413
Location
London
We also have the UK study.

So far the WPI has 50 bloods from a draw in Ashford. These have been sent to 2 different new laboratories for XMRV testing. The labs are said not to have ever had XMRV in them.

How far do people think this will go to sorting out the argument?
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
your factually inaccurate and bizzaren post is not worthiy of any kind of detailed reply.The WPI post was factually correct if you cant understand the science perhaps it would be better that you did not comment onit

Moderator comment: Please keep to the topic and drop the personal comments as per the forum rules.
 

omerbasket

Senior Member
Messages
510
So they're saying the were in contact with the WPI, asking for more samples to be exchanged, with the WPI not getting back to them, while the WPI is claiming they wanted to swop more samples but were not replied to. Don't trust the postal service - use e-mail people!!

From my reading of this, the WPI are not gaining many allies at the moment. If XMRV and CFS doesn't work out, they're going to look like nutters. If it does, they'll still be heroes, but I'd have prefered a more cautious approach at this point. If XMRV and CFS is going to hold up, it looks like it's going to take a while to really prove this to everyone, and it would be nice to have researchers on your side in the mean-time.
I would prefer people that are real, that say what they believe in and that uncover the ugly sides of the scientific community (and I have a feeling that WPI know of many other ugly things and doesn't publish it yet, for their reasons).
I have nothing but amazing words to say about Annete Whittemore, Dr. Judy Mikovits, Dr. Dan Peterson (who, by the way, is finishing, in a decision that was known a long time ago, his job at the WPI as I understood from their website), Dr. Lomabardi and all of the other staff in the WPI. They are great scientists, and they are incredible people who are fighting for us agaisnt the evil in the scientific world, which, if it was in those evils's power, would have kept us sick.
 

oerganix

Senior Member
Messages
611
I'm surprised that they dignified the WPI letter with a response. It was not only factually incorrect, it was a blatant act of politics. There is no room for such antics in science, and a response only brings more publicity to WPI which is probably what WPI wants.

Since XMRV-CFS politics does not pose any danger to the public health in general, unlike vaccine-autism politics does, there is no compelling reason for scientists or public officials to engage. They can and should just let the scientific process unwind to its natural conclusion without fussing. The politics is aimed at rallying the base anyway, and it is already working well without their help.

My suggestion to WPI would be to stop the politics and put their patients on AZT trial instead. Nevada folks are already trying all kinds of antivirals on their patients, one more antiviral won't make much difference. They shouldn't have any difficulty recruiting the subjects either if this forum is any indication. If the trial works, then the debate will be over, period. They won't have to fight evil people like McClure or Kuppeveld who are out to smear WPI and CFS patients.

BTW, Lancet was the one that published and then retracted vaccine-autism paper that started the whole tempest. To think that a paper that was rejected even by Lancet would dare to challenge WPI...

You should be addressing this comment to the European studies' authors since they are the ones who started the fracus, with McClure mentioning Lombardi by name in the first Failure To Find study, and then shedding crocodile tears that CFS patients would be "bitterly disappointed" by their "findings".

The politics were elevated over science long ago, by the likes of Wessely, for whom McClure is just a mouthpiece, and Kuppeveld. Sometimes one must fight fire with fire. At least WPI has actually been trying to find the cause and cure or treatment of CFS, instead of trying to convince the world that there is no such thing.
 

oerganix

Senior Member
Messages
611
Obviously what we need are

multiple groups sharing large numbers of patients using agreed upon techniques

-no more questions about culturing vs non culturing
-no more questions about not going the whole hog
-no more questions about cloned samples vs real samples
-or good cohorts vs weird cohorts
-or good researchers vs bad researchers

Thankfully Dr. Mikovits has agreed to participate in those studies; in the end we'll (hopefully) have an answer that everyone can agree on. I hope they live up to our expectations.

I would note that neither of these groups - the WPI or the Kuppeveld group - are going to decide the fate of XMRV. Their argument, with regard to that, is almost beside the point. If what we've been told is true about the DHHS study and the CDC study, and if as many groups are studying this as we believe, the work that is being done right now will decide this issue long before they conclude their argument.

Can't wait for those studies (although I will surely peak at them through closed hands at first).


Me, too. (Can't wait, that is. Don't understand speaking through closed hands.) According to PR thread on Mikovits in Spain, she says there are 4 more papers coming out soon!

This is my post in the thread on Mikovits in Spain: (the blogger is a Spanish pharmacist)

Dr Judy charms 'em in Spain; gets Nobel Prize nomination
Also interesting that the blog says Dr Mikovits is working with Dr Clotet, looking for XMRV in CFS patients in Catalonia, AND will publish in the next few months.

The blogger ends with this:
"An exquisite, very accessible and otherwise charming Mikovitz Dra.
From here my support for Nobel Prize in Medicine, if the thing turns out to be it,and it seems so."



 

oerganix

Senior Member
Messages
611
I would prefer people that are real, that say what they believe in and that uncover the ugly sides of the scientific community (and I have a feeling that WPI know of many other ugly things and doesn't publish it yet, for their reasons).
I have nothing but amazing words to say about Annete Whittemore, Dr. Judy Mikovits, Dr. Dan Peterson (who, by the way, is finishing, in a decision that was known a long time ago, his job at the WPI as I understood from their website), Dr. Lomabardi and all of the other staff in the WPI. They are great scientists, and they are incredible people who are fighting for us agaisnt the evil in the scientific world, which, if it was in those evils's power, would have kept us sick.

I agree with you Omar. Silence gives consent. All it takes for evil to triumph is for good people to do nothing.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Given the robustness of our paper, we considered it scientifically premature to report this finding before having settled the reason for the discrepancy.

But it wasnt scientifically premature to publish their paper before having settled the reason for the discrepancy? Egos as big as all outdoors...
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Retroviruses cannot replicate if the cells are not actively replicating.yet Mclure and groom choose to use old blood in which the cells are not replicating.PCR only detects replicating viruses so lets use PCR on old blood samples.

How was the WPI then able to detect XMRV in the Dutch samples using PCR? Do they amplify them or something?

I remember Dr Peterson mentioned being able to culture XMRV from a 20+ year old blood sample from a patient who had since died. I wonder how they did that?
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
Don't understand speaking through closed hands.

oerganix, I think you've just coined an apt new expression (neologism?). Speaking through closed hands is exactly what the CDC and other powers-that-be have done to us for years. :Retro mad: :D (In the sense that they try to hide their mouths and faces while mumbling unintelligible nonsense.)
 
Messages
10
It indeed is ludicrous: "the Americans that have polluted the Nijmegian blood". Next step: "Because they're Jewish", or what?! Or Calimero's complaint: "You American baddies dare to criticize our poor weenie small ducklings, you meanies, you..."

Science The Nijmegian Way. Take heart Board of Directors of Nijmegen University! Intelligent Nijmegians: Avoid studying there, if your IQ is higher than 115, that is!

Mandarijntjes met een IQ van 118
http://www.maartensz.org/meinadam/spman118.htm

Best wishes,

Maarten.
I think it's incredible arrogant of van Kuppenveld. But hey, in Nijmegen they have their cognitive behaviour therapy; the one and only therapy which has proven to 'cure' cfs. The therapy includes that people who suffer from cfs have to be confinced their not ill. They must learn to have other thoughts, and ignore their fatigue.

Funny details:
People who join this therapy, don't have to be diagnosed with cfs: being tired for a longer period is good enough.
The patients who need rest in the afternoon (let's say... 80% of the cfsers?) are disqualified.
Patients who have phisical abnormalities, are either.

In nijmegen they're very proud of the results of their CGT. In the meantime they simply ignore all interesting results of research which prove cfs could be a physical disease.

I think their IQ is far below 118.

Best wishes.