Discussion in 'General ME/CFS News' started by alice1, Dec 26, 2009.
I hope I haven't done a repeat if so I apologise.
Thanks for posting this alice. I thought Hillary had taken it down.
Just reading this again and reading the comments makes me feel heavy and sad. We need a patient organization that goes to bat for us every day, not just when it suits them. We need them to say NO to the psychiatrists from the UK like Peter White and Simon Wessely instead of publishing them and their unscientific, flawed studies in their Continuing Medical Education pamphlets and on their website. The CAA has sold us down the river.
I was going to apologise for reposting this and then thought why!
Is the blog a big fat lie or is there truth to it .
ActUp was successful because they were dying and angry and thousands of them were one voice.If you think CFS/ME can't be a killer you're very wrong.I've had 2 cancers and I'm 54..a coincidence.Not according to an immunologist.
Why wouldn't CAA jump on the band wagon when the XMRV was discovered and use it for lobbying...some say they don't know if it's THE virus well they don't know if it ISN'T
I need an organization who isn't cosy with the boss.I see wasteful spending with funding and I don't need loving caring words because I don't believe you.
Hell teejkay don't be sad that only makes you more tired.Anger is a much better emotion
it'll move you forward.CAA could use a lot of it.
Since CAA is lousy at lobbying I know where my donations are going.
I need an organiztion who isn't afraid to talk back to the hand that feeds them.
Man, o man, this does nothing to change my opinion of Osler's Web as anything but a neutral history of CFS by a journalist.
You think what he wrote was neutral or is that your way of saying he's a liar.
A Dark Vision - Hillary Johnson
I think its sad that Hilary is so drenched in anger that she can't see straight.
This stuff is unfair and its sloppy. There are no facts presented - its a simply a complete dump. I know Hillary Johnson is loved because of Osler's Web but this is not Osler's Web. Its a HUGE step down from Osler's Web.
I don't know why so many people take her tack on things in such a verbotten manner. Scratch the surface below the powerful words and you're not left with much. I realize alot of people won't like what I wrote but show me where I was wrong (?). And then tell me why you trust her.
How do you know that they're not lobbying? Why would you think that they're not? They used their connections to Senator Reid and a congressmen to get the goods on the CDC. Why would you think they wouldn't use them here?
What is having Suzanne Vernon on the DHHS task force for XMRV if not lobbying?
I'll read your post later Cort but a nap is in order.
I'm new to Oslers Web,the CAA and thought I knew what the CDC did,evil doings and all.
Tell me why this woman is so angry?Why are all her statements mis-statements because what you're telling me is that everything she has written in that blog is bull.
Who wrote A Dark Vision?
I've read opposing feelings about the CAA on this board and I know that doesn't mean if you have issues with the CAA you love Ms Johnson.I also hear what you've just said to be exactly the same as Ms Johnson herself but on the other side of the coin.
I think there must be some truths from both of you..No one is always right or always wrong.
I must keep that grain of salt at all times.
Cort, which of her statements do have merit, in your view? It didn't seem to me that you covered /everything/ she said.
everything Hillary Johnson writes in her Blog rings true to me. I've been through this since 88 and followed it all carefully. The CAA pulled the funding on Defrietas after she stuck her neck out for us and her career was ruined. Why would I think they woud ever stand behind retrovirus research a second time around?Aren't the same people in charge?
If what Hillary writes seems dark it's only because it echoes the truth of how our story has unfolded for 20 plus years. It's not a rosy story and the characters are not pleasant.
I just started reading it Cort and wanted to let you know that Hillary's name has two "l"s in it.
No. Hillary uncovered a dark web and she shined a massive, bright light on it.
The reason we're so upset is because the CAA is ruining it's own credibility and Hillary is pointing out a few of the things they have done that betray us. We want the CAA to be here for us, the patients with CFS.
Yes. They didn't represent ME when the WPI's request for grant money was turned down by the CAA but thankfully the WPI found other funding and were able to discover XMRV in PWC.
I don't know how this rumor got started, but the fact is that the Association has not received ANY applications for research funding on XMRV. Zero. Therefore, the Association never denied such a request for funding from WPI or anyone else. No such applications were submitted.
As XMRV had not yet been discovered I think the question should be:
Did the Association turn down any requests for funding from WPI?
Did the CAA turn down any funding requests from the WPI? I'm uncomfortable with the fact that every time this issue gets brought up, there is denial that 'no XMRV funding requests were turned down". However, at the time of request, it most likely would not have been referred to as an "XMRV" study...since that's what they were kinda keeping secret?
So, did the WPI requests for funding of any kind get turned down?
Never mind being turned down why weren't they offered funding??
Isn't this the point of having CAA.
You don't wait for a fish to jump in your net you get your butt out there and hook the damn thing.
Not correct Alice! If you remember from the blog the CAA, like almost all organizations that fund medical research, has a review process that grants must go through to get funded.
Once they have their funds they announce a date when grants can be submitted then they score all the grants - using outside reviewers - and award the ones they think are the most valuable. Thats the way the grant process works just about everywhere from what I can tell.
Almost 20 years ago the CAA was the sole source of funding for Dr. Defreitas for several years - giving her 20,000 a month. It was after a Scottish team, Dr. Jay Levy, the CDC team, the Gallo team, Dr. Herst and the Chiron labs failed to replicate her findings that they pulled the plug on Dr. DeFreitas. Its all in Osler's Web - thats where I got that information from.
Somehow the CAA got to be one of the fall guys for Dr. DeFreitas. The problem was that multiple labs failed to replicate her findings, not just the CDC. Check it out.
The CAA at that point was also funding Dr. John Martin and Dr. Grossberg - both of whom were looking for retroviruses. They went on to fund numerous studies on pathogens - yet here Hilary is stating the CAA hates infectious pathogens. Somehow that fact doesn't seem to be striking a chord in anyone.
Anything else I wrote incorrect?
(Thus the conversation shifts to "Well, Didn't the CAA not fund XMRV research?" )
This is a very different blog than the one I remember! She's changed it markedly - filled it out considerably and toned down her language markedly.
There are things I agree with. I think she's got a point about the passive - aggressive stance. I think the CAA should be more provocative - I've said that many times. But even though the CAA has taken a mainstream approach - there's no doubt about that - they have many accomplishments and that's one thing I take Hilary to task for - ignoring the accomplishments.
She's really toned down her language in this latest version of the blog - something shes done several time with her blogs about the CAA.
This was crazy. Hilary really trashed the CAA at the end of her book - unfairly I believe. If you read Osler's Web - at least after I read it - I came to the conclusion that her work really was refuted and not just by the CDC. Hilary obviously thought otherwise.
And statements like this
Yes, there was evidence of financial problems at the CDC but when you have an actual whistleblower with documents - turning him away is a tough call indeed. But thats not how Hillary sees things - there are no tough calls; there's the right way and the wrong way.
Hilary seems to think that the answer was just lying there open to everyone but it never has been; the answer has never been obvious in CFS - there are problems with every area of research. She ignores the fact that the CDC did do good work a couple of years ago - very good work that really helped raise CFS's legitimacy. She also ignores the fact that when the CDC started to turn in the last two years the CAA went after them as strongly as they could. No they weren't shouting in the street; instead they were creating rigorous analyses of the CDC's plans and documenting unbelievable financial mismanagement - yet Hillary still says CAA is CDC.
this is Hillarys slant but this was never so. Because the autonomic nervous system and HPA axis is screwed up in CFS (ie the stress response) doesn't mean CFS was not a medical disease; it meant it was a medical disease. Its always been such an easy almost shameless slant to tag 'stress response' research with stressed out people. Its a shame really.
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