CAA on Facebook

Advocate

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Really no one seems happy with the other! It could be that they're not communicating with each other...
We are certainly communicating very well with each other here! The back-and-forth here has been extremely interesting and constructive. Sometimes it's unpleasant, but it's necessary. I've seen rumors stopped in their tracks by facts here.

I love Yahoo, but I don't know of any Yahoo groups where this kind of discussion, this kind of communication, is taking place.

Thank you again to Cort and to the moderators for letting necessary discussions run their course.
 
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"Privacy tip: When submitting personally identifiable health information (diagnosis, medications, etc. linked to your name and contact info), make sure the site is secure (encrypted) and has a privacy policy about how such information will be used, stored and protected"
By the way, an unencrypted web form is no less secure than ordinary email. The idea of encryption is to prevent hackers from stealing passwords and credit card numbers and such. They have a point, it ought to be encrypted, but it is ridiculous to say insurance and disability companies will be able to get a hold of it. Seems this was a passive-aggressive attempt to embarrass WPI. They might as well tell people to not send anybody an email about their condition, ever.
 
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anne

Guest
The CAA had a post about their grants and someone asked Andrea why they hadn't applied since the WPI wasn't on there and she said they applied for further XMRV research and the CAA turned them down. I don't know the facts beyond that at all--there are many possible reasons why-- but I still say, what the hell??????
 
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kristin

Guest
CAA in Facebook

I've been suffering from CFS for 23 years, and I have seen a lot of conflicts between a lot of groups, but this time, if I need to take a side, I'm on the WPI side. I can look back through all the years, and I cannot name one thing CAA has ever done to help me. On the other hand, WPI has done a LOT.

Oh, and--if they want to print my responses to the WPI questionnaire on the front page of a newspaper, I'm fine with that. I don't see why anybody would be interested, but they are welcome to the info if they want it.

I am just impatient, I guess, with all these people I have supported for so many years coming out and trashing the only real progress I have seen with CFS.

HOORAY FOR THE WHITTEMORE-PETERSON INSTITUTE !!!
Wildaisy, I concur with your statement 100%. I used to donate to the CAA regularly but not anymore. My donations will be going to the WPI only. All this controversy has only deepened my doubts about the CAA.
 

starryeyes

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The CAA had a post about their grants and someone asked Andrea why they hadn't applied since the WPI wasn't on there and she said they applied for further XMRV research and the CAA turned them down. I don't know the facts beyond that at all--there are many possible reasons why-- but I still say, what the hell??????
I Second that, anne. Thanks for letting us know.
 
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Khalyal

Guest
I have read that Judy Mikovits was invited, but she attended a fundraiser instead.
The Banbury conference was scheduled at the same time as the annual WPI fundraiser. Judy Mikovits was unable to attend Banbury for that reason.
 

Cort

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The Banbury Conference was in the works for a long time; Banbury is a reseach Conference facility. You have to apply to get on their agenda. The way Banbury works is that the meetings are set well ahead of time so that the researchers have plenty of time to set their schedules.

Think of it - Dr. Mikovits could have spent 3 days acquainting many of the top ME/CFS researchers in intimate detail about XMRV and hashing out how it could apply to their field of interest. Talk about sparking work in a field.

It could be that the WPI only had those dates available (I think they have a friend at the hotel and they may be limited in when they can do those things) but you can see how the CAA wouldn't be happy. That was 3 days researchers spent in intimate contact with each other.

Really, none of it worked out for anyone - let alone us patients. This kind of stuff should not happen again.

I heard that the lab side of the XMRV grant was fine but that the patient methodology wasn't tight enough for the CAA. Dr. Mikovits experience is in the lab.
 

Cort

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Someone in the CFIDS Association. Funding institutions never to my knowledge to disclose information on grants that didn't get funded. What I was trying to get across - and maybe I should'nt have said anything - was that it was not the subject that was the problem but a methodological consideration.

There's no reason for the CAA not to provides grants for XMRV or to support the research. The CAA provides grants on a wide selection of grants from brain lactic acid to gastrointestinal problems to vascular problems to endogenous retroviruses. They don't have a specific research focus. XMRV will fit into their ' portfolio' if you want to call it that just fine.

The better they do with their research projects the more progress they will make more money will flow their way. What they basically want is to find a winner.
 

Marylib

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Picture getting clearer

So... the CAA gets more public funding the more it sponsors "winning" research .

So..in this case...why wouldn't they be resentful of WPI?

And then WPI didn't get their act together to follow CAA's timetable for Banbury.

So why wouldn't CAA resent this and publish thinly veiled insults on its FB?

It is always about money and power and saving face, isn't it.

I find it very very sad. Because we are all still ill, because people are losing their lives.

If you are an advocacy organization in competition for funding with an independent research group, don't call yourself an advocacy organization.

Does this make sense to anyone or all we all pretending it doesn't stink?
 

Cort

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Why wouldn't they be resentful? Because they will have every opportunity to fund XMRV research! They haven't had the opportunity to fund XMRV research. The CAA just stated they've never been asked to fund XMRV research. If XMRV works out it only be good for everyone.

Its all about the context isn't it? The WPI missed an opportunity to educate ME/CFS researchers about what they believe is the biggest scientific find ever. I think as patients we would have rather have Dr. Mikovits talking to researchers than to fund raisers. Right now, though, the WPI can do no wrong and the CAA is the bad guy. So instead of the WPI missing an opportunity - its about the WPI not following the CAA's schedule and the CAA lashing back.

This
It would seem, then, that they failed. ; )
is simply unfair. The CAA is funding lots of good research. They've gotten some of their funders big grants at the NIH. Put in another context if they've failed so has everyone else - for the past 25 years - not just the CAA.

I don't think its all about saving face and power. I don't even think most of it is. I think both groups are working hard to advance the interests of CFS patients.
 

Kati

Patient in training
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W

Its all about the context isn't it? The WPI missed an opportunity to educate ME/CFS researchers about what they believe is the biggest scientific find ever. I think as patients we would have rather have Dr. Mikovits talking to researchers than to fund raisers. Right now, though, the WPI can do no wrong and the CAA is the bad guy. So instead of the WPI missing an opportunity - its about the WPI not following the CAA's schedule and the CAA lashing back.

Cort I disagree with you, though it would be best to ask WPI what really happened, but I presumed it was too early for Dr Mikovits to reveal her study results since it was supposed to be published at first on October 16th- she may have been bound to the Science "contract".
 

Marylib

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Just trying to get the facts right -- I swear

Why wouldn't they be resentful? Because they will have every opportunity to fund XMRV research! They haven't had the opportunity to fund XMRV research. The CAA just stated they've never been asked to fund XMRV research. If XMRV works out it only be good for everyone.

.

So...CAA has not turned WPI down for XMRV research. But they did turn down the WPI, correct? What research proposal of WPI's did they turn down?

Anybody know?