XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

Wonko

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My thanks to the people involved - I thought that coverage was pretty good for a general news program - especially from a ME hostile country - one thing puzzled me tho - this

"Sanquin will take appropriate measures if it's proven that the presence of the virus in donor blood is harmful for patients."

it's an odd thing to say - at least to an english mindset - surely you would say it wasnt established it was in the blood supply before saying somethign like that - unless they have already accepted/established that it is.....
 

Jemal

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My thanks to the people involved - I thought that coverage was pretty good for a general news program - especially from a ME hostile country - one thing puzzled me tho - this

"Sanquin will take appropriate measures if it's proven that the presence of the virus in donor blood is harmful for patients."

it's an odd thing to say - at least to an english mindset - surely you would say it wasnt established it was in the blood supply before saying somethign like that - unless they have already accepted/established that it is.....

Yes, that has been bugging me as well. I think the blood supply should be kept safe. Sanquin should be far more agressive protecting it. I guess it's a bit of politics as well: not many CFS patients are blood donors, so they might think the risk is low (together with measures that I am certain are already in place to kill off certain pathogens in donor blood). If Sanquin told patients they can't donate blood anymore, this could be used as leverage against insurance companies and other organisations (disability benefits?) that are still skeptical of CFS.

Also Sanquin can't say for certain it isn't in the blood supply, as they can't find the virus themselves (only a few labs can at the moment). And the Alter paper makes it likely the virus IS in the blood supply. So they are in a tight spot.

This could turn into a bad health crisis, especially if it takes years (or special circumstances) before people get sick of the virus. Yes, CFS probably isn't very deadly (though that remains to be seen), but if it's caused by a virus that's also bad news. If carriers don't die rapidly, the virus gets lots of opportunity to spread.

I think virologists are very afraid of viruses that:
- kill rapidly, but are so contagious they can still spread rapidly
- don't kill rapidly, but remain undetected for a long time so they can infect a large percentage of our population (a sudden mutation of the virus could then cause immense problems).

Deadly viruses that can kill in days or weeks, are scary, but most of the time the virus is so agressive it can't spread well (thankfully), because it's noticed earlier or carriers die before they can come into contact with (many) other potential victims.

The retroviruses that have been discovered to cause problems in humans seem to be very bad news, as the immune system generally is unable to keep them supressed (unlike some other types of viruses, that cause problems but are supressed within days or weeks and are then kept supressed for life).

So basically I am pretty concerned...
 

urbantravels

disjecta membra
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For those confused on US geography, - Bethesda, Maryland is basically a satellite city to Washington, DC, about 8 miles away. It would be considered part of the "greater DC area" and it contains a number of large public agencies and government facilities, including the NIH, which has a vast "campus" there. So if anyone refers to the XMRV workshop as taking place in "Washington," they are just using shorthand for the general area: the workshop is taking place on the NIH campus in Bethesda.

Washington, DC itself is quite small and not part of any state, and many of the large government-related offices associated with it have spilled out into the neighboring states of Maryland and Virginia.

The CDC, on the other hand, has its own place way down in Atlanta, GA, which is still in the general southeastern part of the US but far, far away from greater Washington. Perhaps part of the reason why they have developed a ... "unique' insititutional culture of their own. I don't believe they have any co-sponsorship role on the workshop, but a number of people from the CDC wlll certainly be in attendance.
 

Sasha

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Thanks, urban - I was wondering why they were holding such an important conference in a village or something! Total geographical ignorance. Had no clue either that Washington DC wasn't part of a state.
 

filfla4

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The story about KDM presenting in Washington has been picked up again: http://www.rtlinfo.be/info/magazine...au-virus-pourrait-causer-la-fatigue-chronique

French to English translation (Google Translate)

Researchers at the Vrije Universiteit Brussel (VUB) and the Belgian company biotech RED Laboratories "are able to identify a new retrovirus in patients with chronic fatigue syndrome, said Tuesday the VUB in a statement. These results corroborate a recent American discovery.

U.S. researchers from the University of Nevada were discovered in October 2009, the majority of patients suffering from chronic fatigue syndrome were carriers of a new retrovirus XMRV. Before the Belgian study, the U.S. findings had been confirmed by the Harvard Medical School and the National Institute of Health (NIH).

Research conducted under the direction of Professor De Meirleir (VUB) is a novelty because the virus has been found in sick patients from across Europe.

Moreover, the immunological signature is comparable to that of a patient with AIDS.

This new discovery will be presented on September 7 and 8 coming at a workshop of the National Institute of Health in Washington.
 

Sunshine

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Good find there filfla4.

I wonder if the NIH have a webpage that will reveal any of the data that Kenny De Meirleir presents, or will it be kept secret for now?

Sadly, I cannot find any information on any upcoming events (workshop) on September 7 & 7th on the NIH website.
http://www.nih.gov/news/index.html

If anyone knows, please add your knowledge here.
Thank you.
 
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