April 7/8 NIH State of Knowledge Conference - watch online to show our support!

[eric_s]

This guy just said we need a Manhattan Project! Yes, THANKS!!!! That's exactly it. Finally someone who makes real sense. It's multiple millions of people. This is what's appropriate and needed.

 

[KC22]

I wish Judy could keep her cool, but in her defense, she is so frustrated. She knows she's onto the answer and wants treatment to start happening, instead of the bureaucratic nightmare. It has already been 1 1/2 years since her research broke, and it is still being questioned and may be for, as she stated 3 years. I don't think she was personally attacking Dr. Lipkin,only the fact that it will take years to complete. She knows what it takes to do the work. She is feisty, I must say.

 

[acer2000]

Who's study did she just call flawed? Coffin's or Natelson's? I hope not Natelson's.

She was saying that Natelson's "study" on spinal fluid looking for XMRV potentially had issues because it contained only 2 samples (I think she said 2?) and that the tests defined up until this point haven't ever been designed/tested/shown to work on spinal fluid, only blood - thus you can't come to any conclusions about XMRV being in the spinal fluid using them.

I don't think she was commenting on his data on spinal fluid proteins which was recently published - thats a different thing.

 

[dsdmom]

Yea I was wondering who that neurologist is, he keep saying throughout the day that it is the brain but you could tell many people in the room did not take it very seriously.

Didn't see the presentation you are referring to but could be Roy freeman since I know he was on the agenda. If so, I'm not surprised. I groaned when i saw his name. His group is HORRIBLE @ Beth Israel in Boston. They are autonomic specialists and they believe they have a handle on cfs. Their advice is always to start exercising hard and that will cure you.

 

[Sasha]

Didn't see the presentation you are referring to but could be Roy freeman since I know he was on the agenda. If so, I'm not surprised. I groaned when i saw his name. His group is HORRIBLE @ Beth Israel in Boston. They are autonomic specialists and they believe they have a handle on cfs. Their advice is always to start exercising hard and that will cure you.

No, it wasn't Roy Freeman - I asked about a Brit who was presenting earlier and that was Roy Freeman. I don't know who it was, though!

 

[Rrrr]

if you listen carefully, every single thing judy mikovits said is true, on a factual level.

and her frustration and anger is justified. it is not just her. she is representing a whole camp of researchers, including the highly respected frank ruscetti and sandra ruscetti (national cancer institute) and dr lo (FDA).

i am very happy to have a fighter like her on my side, on my team. she is a brave and bold leader. eventually, she'll likely get the Lasker Award (as has Dr. Alter for his breakthrough Hep C work).

if it was not for her and her team, this meeting would not be happening, and CFS would have remained in the dark ages. we are moving forward, we are getting recognition now, all because of her and her team and their research.

kudos to dennis mangen for organizing this, of course. great job.

 

[Rrrr]

No, it wasn't Roy Freeman - I asked about a Brit who was presenting earlier and that was Roy Freeman. I don't know who it was, though!

it was natelson. someone already mentioned that she said his study was flawed in part because there were only 2 samples, and xmrv could easily be *not* found in spinal fluid. (and then there are issues of how it was collected, stored, tested, etc. all issues that HIV experienced.)

mikovits said that ruscetti said that if this were HIV, we'd be in 1983 now (politically speaking). all i can say is, that sucks.

watch the movie or read the book AND THE BAND PLAYED ON to learn more about that history. (netflix has it.) the politics of HIV were horrible. and the politics of ME/CFS are just as horrible (read OSLER'S WEB for that history).

 

[Rrrr]

collins said HHS secretary sebelius wrote a letter in support of this meeting. does anyone have a copy of it they can post here?

 

[Sasha]

This US govt shutdown thing is a total surprise to me! Here's the story on BBC UK news.

I'd be really surprised if it were to affect the NIH budget in a way that ought to affect the ME/CFS budget - if we've been at millionth priority getting nearly 0% of a big pot, surely it's better to be getting a higher priority and maybe 0.5% of a smaller pot. Or maybe I'm naive...

 

[urbantravels]

Natelson was being a real jerk. He kept butting in to every conversation to reiterate his insistence that CFS is in the brain and only the brain. He said flat-out in his presentation that there is no immune involvement in CFS, that his group "stopped looking for [immune markers] because they never found any", and ignored the very polite efforts of Klimas and others to point out what a large body of research he was ignoring. Totally pigheaded.

Mikovits was SO NOT COOL in dealing with him, though. She was rude, insulting, childish, yelled across the room (while he was talking) that his research (not the proteomics, the more recent study looking for XMRV in spinal fluid) was "totally flawed" etc. Granted, he was being a d***head, but she didn't improve matters by sinking below the level he was at.

 

[Sasha]

Well, I feel really good about what I've just seen over the last couple of days there. I know it's all in the follow-through but apart from the occasional duff bit (Natelson) it could hardly have been off to a better start. I saw a lot of enthusiasm there.

 

[Rrrr]

i agree with sasha. the whole thing was amazing. however, the closing (Vivian W. Pinn, M.D., Office of Research on Women's Health, NIH) was a damper. she said at least 3 times that no matter what good ideas folks had or have there, they likely can't fund it. she did not say that exactly, but she said, "i can't promise we'll be able to fund your ideas" 3 times. which amounts to, "don't expect money, honey."

 

[SpecialK82]

As was alluded to by the woman closing the conference, I was so disappointed that there was not more time scheduled for interaction and discussion between the experts. I feel the same way watching the CFSAC meetings.

All the brains and knowledge were right there in the room to discuss biokmarkers, ME/CFS definition, etc.

I want to see a clear path forward, to set-up add'l meetings, to brainstorm together, to continue talking. We get so teasingly close to a good discussion and then time is called! Arrgh :headache:

 

[Sasha]

Hi Rrrr - my take on what Dr Pinn was saying was that she was trying to manage people's expectations rather than implying "no money" - that is, she was trying to say that they might not be able to fund as much stuff as they would have without the upcoming cuts. I could be wrong, though!

This govt shutdown is clearly a huge event - I had no idea about it until it got mentioned in the meeting. I hope all you guys in the US will be OK if public services aren't going to be staffed.

 

[Sasha]

As was alluded to by the woman closing the conference, I was so disappointed that there was not more time scheduled for interaction and discussion between the experts. I feel the same way watching the CFSAC meetings.

All the brains and knowledge were right there in the room to discuss biokmarkers, ME/CFS definition, etc.

I want to see a clear path forward, to set-up add'l meetings, to brainstorm together, to continue talking. We get so teasingly close to a good discussion and then time is called! Arrgh :headache:

I agree. It must have been a fantastic networking event, though - I bet that people have arranged further meetings and discussions. They also had a couple of lunchbreaks and all yesterday evening to talk.

 

[dannybex]

if you listen carefully, every single thing judy mikovits said is true, on a factual level.

and her frustration and anger is justified. it is not just her. she is representing a whole camp of researchers, including the highly respected frank ruscetti and sandra ruscetti (national cancer institute) and dr lo (FDA).

...

kudos to dennis mangen for organizing this, of course. great job.

Hi Rrrr,

I agree that her anger and frustration is justified, but as urbantravels says, she perhaps lost her cool a little in the process and may have come off as a little rude.

But I do disagree with your first claim, that everything she's said is 'factually true'.

I'll repost my post from several pages back, which features a quote of hers, and also Coffin...and perhaps you or someone else can answer the question I posted:

"What is Dr. Mikovits referring to in this clip (at 7:40 in) when she talks about 'at least six studies with thousands of patients from around the world'?

http://www.youtube.com/watch?v=Dktu4...el_video_title

I'm not exactly up to speed (in more ways than one), but haven't most of the studies involved small numbers of patients/controls? Some of them have been extremely small studies. Is she perhaps talking about unpublished studies?

Thanks in advance.

d.

p.s. Also, it seems like Coffin hasn't completely ruled out a retroviral link...he's just not sure about 'the virus we know as XMRV'.

He goes on to say, "enough evidence has been presented that there is some infectious cause here and maybe another retrovirus is possible and it's worth continuing to do it..."

 

[dannybex]

i agree with sasha. the whole thing was amazing. however, the closing (Vivian W. Pinn, M.D., Office of Research on Women's Health, NIH) was a damper. she said at least 3 times that no matter what good ideas folks had or have there, they likely can't fund it. she did not say that exactly, but she said, "i can't promise we'll be able to fund your ideas" 3 times. which amounts to, "don't expect money, honey."

And that, is truly shameful.

 

[liquid sky]

I can't get your link to wok, dannybex.

 

[dannybex]

I can't get your link to wok, dannybex.

Here's a better one:

http://www.youtube.com/watch?v=Dktu4RR5QEU&feature=channel_video_title

Not sure why the other one didn't work...

 

[WillowJ]

And that, is truly shameful.

I completely agree. Baraniuk said a brave and true thing: "there needs to be a culture change at NIH" and she basically dismissed that thought. (In fact she seemed to be in denial of the history of government oppression of not only ME/CFS but of lack of attention to and funding for "womens' diseases" in general.)

But part of what Baraniuk was asking for--reasonable compilation of grant review boards, for instance--doesn't cost a dime. True, it cannot be done on Monday if NIH is shut down with the rest of government but it can be done and there is no rational reason why she could not promise to do this forthwith (or immediately upon resumption of federal government activity, if applicable).