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Blood Working Group Revealed

Sasha

Fine, thank you
Messages
17,863
Location
UK
Here are the group members, from one of the slides:

NHLBI - Simone Glynn - Chair
HHS - Jerry Holmberg - Co-chair
NIH - Harvey Alter
ABC - Celso Bianco
CDC - William Bower
BSRI - Michael Busch
ARC - Roger Dodd
FDA - Jay Epstein
FDA - Diane Gubernot
NIH - Eleanor Hanna
CDC- Michael Hendry
MVRBC - Louis Katz
AABB - Steven Kleinman
CDC - Stephan Monroe
NCI - Francis Ruscetti
ARC - Susan Stramer
BSRI - Leslie Tobler
CFIDS - Suzanne Vernon

Testing Labs - Investigators
BSRI - Graham Simmons
CDC - Bill Switzer, Walid Heneine
FDA - Indira Hewlett
FDA - Shyh-Ching Lo
NCI - John Coffin
WPI - Judy Mikovits
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I LOVE to see Alter, Ruscetti, Lo and Mikovits in there. Those are the right people. No wonder some others (i won't mention names here) are firing on the XMRV positive studies. They're outside of where things are really happening. Now let's just hope things turn out well for us. But if all of the names i've mentioned above are part of this group and they still seem positive, with all the knowledge this group must have by now, i think things are looking pretty good. Also Coffin is part of it, and even though he mentioned the possibility of contamination, he said something like "we can be fairly optimistic XMRV is playing a role" in September, i think. One thing i have to say... the USA really knows how to do something. I like the concept how they established this group and are going about it. Where is Germany, France, the UK? They're big countries too. But they seem sleeping, passive, without a plan... sorry :angel:
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Where is Germany, France, the UK? They're big countries too. But they seem sleeping, passive, without a plan... sorry :angel:

So am I sorry, Eric! The UK government and its medical establishment have really let ME patients down and in doing so, seem happy to put the rest of the nation's health at risk by ignoring a retroviral threat. I am ashamed of them. We patients try and try and try to put pressure on them but we get stonewalled. I really feel as though I am living in an Orwell novel.
 

Jemal

Senior Member
Messages
1,031
Thanks for posting this!

I have wondered myself what the European countries are doing... we don't seem to be as organised as the US at the moment. But the research in the US wasn't really organised/coordinated until 2010 I guess, so there might be hope for Europe still. If this turns into the health crisis I think it will, they will have to allocate funds and organise.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Something I'm being trying to find out about Europe, do we have any murine retroviral experts here at all? (i.e. a la the wonderful Sandra Ruscetti). I've been looking but cannot find one.
 

natasa778

Senior Member
Messages
1,774
As far as UK researchers, the "HIV/AIDS specialists" are currently busy farting on about contamination. Let's hope the clinicians are more humane.
 

Tuha

Senior Member
Messages
638
I am also really wondering what we are doing here in Europe. I somewhere read that prof de Meirleir wanted to bring cfs/xmrv topic to the European Parliament. but i dont know if he tried it.
I think this would be the best possibility how to get a big attention. EU has 27 countries and more than 500 mil. habitants and has a lot of money. if we would get this topic on the EU level.....I think its our big chance. I tried to contact ESME if they try something but they didnt answer me.
do someone know an european group which try to move the things in this direction? - i didnt find anything
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Does anyone know what the status of the BWG is as far as what "Phase" their at? I thought I remember Cort mentioning a status awhile back, but I'm not sure.
 

Lynn

Senior Member
Messages
366
I didn't know you can do that. Not sure I have a need to know, especially if it is complex, but perhaps Lynn can share the details?

GG

I have Adobe Acrobat Pro which allows me to convert most file types to a PDF. It is very easy if you have the right software. I am glad to do it any time.

Lynn
 

mezombie

Senior Member
Messages
324
Location
East Coast city, USA
Does anyone know what the status of the BWG is as far as what "Phase" their at? I thought I remember Cort mentioning a status awhile back, but I'm not sure.


At the CFSAC meeting, the NHLBI Program Director reported that the BWG was in Phase 2, the optimal preparation of a sample. She said she expected results from this phase in early November.
 

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
As far as UK researchers, the "HIV/AIDS specialists" are currently busy farting on about contamination. Let's hope the clinicians are more humane.

I think the Spanish HIV/AIDS specialists are interested. Think Judy M may have been in contact with them. But can't remember who/how/why/where etc! UK will probably be the last to shift.
 

kermit frogsquire

Senior Member
Messages
125
Correspondence with our two main retrovirologists (McClure and Bishop) has revealed that neither is currently doing any studies on XMRV and ME. Myra McClure even stated that she does not intend on doing any more work on it at all. Short sighted comes to mind.

The problem in the UK is we have an evil genius Simon Wessely with ultimate power over the government and the press through the Science Media Centre, thank goodness the US doesnt have such a powerful player - Bill Reeves is your main evil denialist!
 

Cort

Phoenix Rising Founder
I would not take Bishop to task, however. Even tho her study was negative she did provide a big lead for Dr. Mikovits.

Even when he lead the program Bill Reeves was a largely marginalized figure. Wessely et al got the Oxford definition in there; Reeves tried with the Empirical Definition and nobody budged - a very different story, indeed.