Dr. Suzanne Vernon updated statement on XMRV

[hvs]

CDC - No the CDC's old studies won't cut it. The CDC has at least three sets of samples and it trying to get more; they have their Wichita and Georgia samples, plus they have a set of samples from the WPI and they're trying to get verified samples of CFS patients from CFS researchers.

The HIV/AIDS division appears to recognize they have a real problem with the Georgia and Wichita samples. If they can get samples from CFS researchers/physicians then the Wichita/Georgia samples won't matter so much.

Wait a sec, have I missed some big news?
Last I heard--the CFSAC meeting--the lab seeking to replicate the Science findings was indeed using Reeves' bogus Wichita CFS patients in some significant portion. And when the official said that they had also gotten samples from the WPI it came as news to Annette Whittemore.

There's every chance that I've missed developments since then, but what are they?

 

[fresh_eyes]

hvs, the CAA released some new info about the HHS Interagency XMRV Task Force the other day. It says the HIV division of CDC is testing 100 samples from WPI (boy, that's a lot of acronyms!):

http://forums.aboutmecfs.org/showthread.php?t=1338

 

[Cort]

The NCI 'split' the samples they got from the WPI and gave some to the CDC. Since these are verified samples they give the CDC a chance to make sure they have the test right - can identify the virus - before they start testing their own samples.

They're using all their samples and they're trying to get more because the recognize the problem with the Wichita/Georgia samples - thats what I was told.

 

[Eric Johnson from I&I]

> She goes into detail about how the CAA has joined with the CDC

That's kind of subjective I would think. As long as they arent funding research on psychology, stress, or sexual abuse, then they are doing real research. CDC, in contrast, does research those things.

 

[MEKoan]

Wildaisy,

Thanks much for alerting us to a new blog by Hillary J. I always feel as though I have had cold water splashed in my face when I read her blog - very bracing! I feel as though I regain my senses.

Someone said to me recently that no-one would bother to troll this forum in regards to a highly contentious issue affecting UK patients which was being discussed. I was very surprised that anyone could believe that but I tried to accept it. I feel quite sure they believe it. I tried to believe it, too. It seemed the polite thing to do.

But, as ever, Hillary's blog reminded me that we are in the real world where people are moved by agendas that serve their own purposes and where trolls are real.

That's just the way it is.

Koan

 

[mezombie]

Wildaisy

Ah, why don't I give up totally on the CAA? I have when it comes to advocacy; when it comes to research, I keep thinking of all the money they have...

I didn't know they had turned down 6 proposals from the WPI And, according to HJ's blog, they turned down grant proposals that didn't study the right study cohort.

What's the CAA's "right" cohort? The horrible Reeves melange???

I haven't supported them in years. If I can spare any money, it will go directly to the WPI.

Thanks for the heads up on the blog!

 

[MEKoan]

Hi Marie,

Bracing, aint it!

k

 

[anne]

A
What's the CAA's "right" cohort? The horrible Reeves melange???
!

It shouldn't be. They came down pretty hard against it--Cort posted their statement somewhere here. But I would wonder what the right cohort is.

 

[Kati]

Caa

CAA not getting my money either- would they fund Kim McCleary's wages with that? And for refusing WPI not one grant but six if I read right, this is appaling. The sad part of having the power is tha you hurt people in the end and then you hurt yourself. They think they got power- that's being downgraded really quikly, and unless Their plans changes realy quickly and they stop showing mugshots with a pieces of paper saying solve CSF- I won't even fan them on facebook anymore-

Time for leadership, clean goals, and change what needs to change- NOW.

 

[MEKoan]

Maybe if CAA on Facebook suddenly lost a huge number of fans -- all on the same day, a movement of sorts -- they would "hear" that.

Whatayathink?

 

[Advocate]

Marie asked:

What's the CAA's "right" cohort?

Maybe the "right" cohort for each individual is a cohort that includes that individual. But for a group? I wonder, too.

 

[Cort]

Bracing is not how I view Hilary's blog - much of it is overheated rhetoric and there's a good deal of false information in there as well. I trust Hilary as far as I can throw her. I actually think she could be sued for defamation of character its so overwrought.

There is no 'right' cohort. The first cohort that should be tested is the cohort that was in the Science paper; very ill people that met the Fukuda and 1994 criteria, with immune abnormalities (Rnase, NK cell, IL etc.) and very low VO2 max scores.

Then there are people who meet in the 1994 definition - thats what most people are doing since they don't have that other info on their patients.

 

[Cort]

I don't trust Hilary on the six grant problem. The WPI hasn't been in existence that long and the CAA hasn't run that many grant cycles. I would be surprised if they had six grant requests in. The problem is that the CAA is basically bound at least by etiquette if not by confidentiality agreements not to reveal who didn't get funded. Thats standard practice. So Hilary can say whatever she wants. My assessment of her writing is that she generally does.

I know the WPI is the darling of the moment but the CAA is funding excellent grants - each of which can make a difference for each of us. Just because they didn't fund the WPI's grants doesn't mean they're not doing good work.

Hopefully this doesn't turn into a CAA vs WPI thing - given that we need all the research we can get.

 

[anne]

Then there are people who meet in the 1994 definition - thats what most people are doing since they don't have that other info on their patients.

Cort, I can't keep all these criteria straight. I thought Fukuda was 1994?

 

[Cort]

Yes 1994 is Fukuda and 'International' - they even had trouble with the name of the definition

 

[MEKoan]

Hopefully this doesn't turn into a CAA vs WPI thing - given that we need all the research we can get.

Hi Cort,

The only way that could happen would be if the CAA and WPI took opposing positions. I'm quite confident that neither organization will be influenced by the opinions of one woman if they do not jibe with their own experience.

I am very grateful for Hillary Johnson. For many, many years hers was the only voice I heard - Rolling Stone, Osler's Web - talking about this illness.

I don't know much about the CAA. Granted, I'm not an American but they didn't get on my radar despite all my years of Googling this issue. Hillary Johnson did. That's one woman with limited resources vs an organization with funding. I'm not saying that I did not encounter information re CAA but I never formed any cohesive idea of who they were or what they did. I was surprised recently to discover that their mandate was awareness.

I used to be one of a team forming messages for organizations involved in International Development. I worked with organizations that had to communicate difficult, subtly nuanced messages which had to please a variety of stakeholders while getting a complex message across to the public. I get how complicated this is, it was my work for more than a decade. I should have known what CAA is and what they do. I didn't. I knew who Jody Basset was, for heaven's sake, but not CAA! Something is wrong with this picture.

Anyway, enough about that!

I saw my own lack of action writ large in Hillary's blog. What is my problem?! What she wrote about the way this illness makes us timid was spot on for me. I need to address this in myself and Hillary gives me an opportunity to do so. She calls me to account while understanding completely why I struggle so much.

I think she is an important voice in the ongoing dialogue of ME/CFS and the mere fact that she rouses such passion is proof of that.

 

[Cort]

I agree that you should have known about the CAA and that says something. They do however post regularly on Co-cure; they have a elink newsletter they send out every month - I don't know why they didn't get on your radar.

Maybe the loudest voice does get the attention (ie Jodi) and one of my complaints regarding the CAA is that they're basically too professional and that they need to be more inflammatory and provocative.

That doesnt mean though that they're not getting important work done behind the scenes. You've probably never heard of their physician education they initiated on Medscape last year. They broke with the CDC to do that. Its trained over 35,000 physicians each of which is believed to see about 5 CFS patients a week. That's alot of patients getting better care every week - thats progress.

 

[MEKoan]

Maybe the loudest voice does get the attention (ie Jodi) and one of my complaints regarding the CAA is that they're basically too professional and that they need to be more inflammatory and provocative.

35,000 physicians is impressive. If that translated into better care for the numbers you mention, that's great.

I must take issue with the notion that not getting awareness or advocacy done could ever be because you were "too professional". If your job is awareness and advocacy, getting that job done is the measure of how professional you are.

I worked directly with governments, universities and grass roots org.s - the whole gamut. I had to be professional at all times, in all ways, in all cultures. However, if I had not been able to reach people with the message I was charged to convey, I would not have been professional, I would have been a failure.

In fact, I was less than effective at the end as ME/CFS caught up with me again and I had no business doing what I was doing because someone else could have done it better. I don't feel good about that, at all, but the truth is the truth.

 

[Cort]

That program was co-written by Dr. Lucinda Bateman and Dr. Charles Lapp. How could it not be much better? They've based their careers on treating CFS. Both have done Ampligen studies,etc. Both are widely respected.

The program was initiated by the CAA because they were disatissfied with the CDC's provider education program. They broke with them and created the new program in a different venue.

You will never hear that from Hilary Johnson. Thats a problem because ME/CFS patients every day are benefiting from having a patient centric program on one of the busiest medical websites (Medscape) in the world.

Perhaps I should have said 'not exciting enough' or not 'enrolling enough' or 'don't toot their horns enough' or something like that. They haven't gotten their message out enough - so they need improvement in that regard. On the other hand they have been effective in producing programs like the one above.

 

[anne]

Yes 1994 is Fukuda and 'International' - they even had trouble with the name of the definition
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I don't even have brain fog and I can't make sense of all of this!