Clarification by Dr Jones of CFSAC comments on XMRV

[parvofighter]

Concern was expressed in the CFSAC thread about a comment that Dr Jones had made at the CFSAC meeting: (http://www.forums.aboutmecfs.org/sh...C-meeting-online-Monday-9-4-EST-May-10/page16 )

I am very concerned about Wanda Jones' comment at the CFSAC meeting that it is XMRV now but won't be for long. Doesl Wanda know something the rest of us do not know? Is the CDC going to try to torpedo XMRV research? Wanda makes it sound like six months from now no one will be speaking of XMRV. Does anybody know what she was talking about?

Several of us shared that concern, so I emailed Dr Jones to request clarification. She has given me permission to post her response, and I have asked for a 1-line paraphrase - will post that if/when I get permission for that too.

Here is her initial response to me:

Oh, gosh, I was talking about the quirks of science and the media in general. Terrible choice of example on my part! You know, everything's all over the news today because of a surprising finding and very good press relations by the sponsor, and in a month it's totally gone away. Doesn't mean it wasn't true or isn't important--it's feeding the beast of the 24-hour news cycle. Scientists, too, are sometimes guilty of overstating the meaning of their findings, amplified by media eager for cures, miracles, solutions, etc., but with no follow-through or explanation of the limitations of knowledge.

I hope this helps, XXXXX. Thank you so much for reaching out to me directly to resolve this, XXXXX! I'd like to avoid the hundreds of emails that my HHS colleagues are now getting--I am having to divert time to respond to them, rather than work on the recommendations to transmit them to the Secretary--so feel free to share this message with the CFS community. I'm delighted that so many are using and paying attention to the videocast and archive. I just have to remember to be clearer when I'm trying to provide broader context! Wanda
​

The two take-aways:
1) Wanda did not mean, "XMRV will be gone in a few months"
2) She appreciated the contact - rather than tons of emails - and wanted this posted, to prevent her being diverted from her core role. A good reminder to coordinate our emails to those that are helping us, so they don't get overwhelmed.

I started a new thread to make sure this clarification doesn't get lost in the lengthy CFSAC thread. Hope this helps!

Parvo:Retro smile:

 

[Orla]

Thanks Parvo, I had thought myself that this was how she had meant it, but glad to see her clarify it.

Orla

 

[gracenote]

Thanks Parvo. You done good!

 

[Andrew]

I took her comment in a generic way, meaning that the discoveries of today might not pan out. I didn't take it as any insider information.

 

[justinreilly]

yes, thanks parvo.

i guess sometimes you just have to ask! I certainly don't want to add more friction to her job as she certainly seems like she carries out her duties very well for CFSAC.

 

[parvofighter]

No worries

No worries folks - I got the sense she genuinely appreciated our requesting clarification - and then posting it, so she didn't have to answer the same Q over and over again. It's great to see someone in her position care so much about us listening to the podcasts too. She clearly wants to see follow-through on her efforts - I'm so grateful for her involvement.

 

[JT1024]

I'm so glad you were able to contact her Parvo!

It amazes me how many on this forum have personal contacts and relationships with so many key players - researchers, doctors, government contacts, etc.

By putting our collective resources together, we should be able to effect the changes we all want and need to see (respect, $$ for research, treatment, etc)

Thanks again for contacting Wanda... I don't want to hear "ABCD" ever again!

~ JT

 

[Adam]

Great work as always Parvo. Your continued work outside the forum is very much appreciated by me and I imagine the majority of PR members.

Thanks again

Adam :victory:

 

[Otis]

Great work as always Parvo. Your continued work outside the forum is very much appreciated by me and I imagine the majority of PR members.

Thanks again

Adam :victory:

Parvo,

Thank you! I love, love, love Dr. Jones.

Honestly the only thing she said (more than once) that concerned me was that they could expect no additional funding for the committe itself.

Why not ask for it? (Or did I miss that?) In order for them to be effective for new members to hit their stride, four days a year just doesn't cut it.

And Adam - did you just turn yourself into a red M&M?


Otis :horse:

I always wanted to be a horse. I'm saving the rear end for Dr. Yes's doctor.

 

[fds66]

Well done Parvo - thanks for that reassurance

 

[Jerry S]

Yes, Parvo, you are a great comfort - I'm sure to many of us.

 

[Adam]

Bad Science

Parvo,

Thank you! I love, love, love Dr. Jones.

Honestly the only thing she said (more than once) that concerned me was that they could expect no additional funding for the committe itself.

Why not ask for it? (Or did I miss that?) In order for them to be effective for new members to hit their stride, four days a year just doesn't cut it.

And Adam - did you just turn yourself into a red M&M?


Otis :horse:

I always wanted to be a horse. I'm saving the rear end for Dr. Yes's doctor.

It's a GM M&M, Otis. :Retro tongue:

It looks as though inadvertently, my legs, arms and eyebrows somehow got scrambled into the mix.

A bit like a Teenage Mutant Ninja Turtle, without the martial arts, teenage rebeliousness, reptilian characteristics.

In fact, nothing like a TMNT.

Adam :victory:

 

[starryeyes]

lol Adam!

Parvo, thank you for contacting Wanda. I had hoped that's what she meant and it was. Whew!

 

[VillageLife]

I think she was asked by a doctor why cant we get more funding now xmrv is here. and she said it might be abcd in 6 months time.

I dont think cfsac will have to fund xmrv anyway - XMRV will have its own fund.