Hilary Johnson tells it like it is

[LaurelW]

Hilary Johnson, in her usual no-nonsense, hard-hitting style, analyzes the latest shenanigans at:

http://oslersweb.com/blog.htm?post=774136

 

[justinreilly]

This excerpt about McCleary saying to the govt that she's "resisting" pressure from patients to recommend banning blood donation from pwME made me absolutely sick! Really, she's at war with us, just like CDC:

http://oslersweb.com/blog.htm?post=774136

Here’s an example of how McCleary uses her inside voice, which comes from an April 9, 2010 e-mail McCleary sent to government officials:

“I’ve noted online that several European CFS/ME patient organizations are preparing to petition their governments to follow Health Canada’s lead. So far we are resisting pressures to do likewise, with expectation of a report on the blood safety study (NHLBI, BSRI, CDC, FDA, etc.) to come, hopefully in time for the May 10 DHHS CFS Advisory Committee meeting.” (Italics mine)

If the chair of the self-styled largest patient advocacy organization in the U.S. is alerting government administrators that she is “resisting pressure” to urge a ban on CFS blood donations even despite the urging of concerned patients and in-the-know scientists, for any reason at all, then perhaps it’s unsurprising there continues to be no clear federal policy in the U.S., even now, on such donations.

These are not pressure tactics, this is not advocacy. This is big time suck up. It’s not about you and it certainly isn’t preventing "chronic fatigue syndrome."

Herewith, the Cliff notes on CAA for newbies:

1) Twenty years ago, CAA unplugged the original retroviral work in this field when it abruptly stopped funding Wistar Institute scientist Elaine DeFreitas.

2) In 1998, they functioned as co-conspirators with CDC’s Bill Reeves by overlooking his year’s long involvement in the CFS slush fund. With the help of North Carolina’s right-wing battle ax Sen. Strom Thurmond, CAA arranged for Reeves’ federal whistleblower status—which protected him from prosecution and from being fired. And then McCleary presented Reeves as a hero to patients.

3) And that’s how Reeves was cemented into the post of Principal Investigator for the next twelve years. Gee, those were great years, weren’t they?

4) Once Reeves was safe, McCleary turned CAA into a CDC contractor for the next several years, accepting millions from the federal agency in exchange for facilitating the agency’s Big Mac-style marketing of “chronic fatigue syndrome.”

5) On the public front, McCleary served as moderator of the CDC's surreal national press conference of 2006, wherein Reeves and Vernon bamboozled the ever-gullible press about genomics and childhood molestation in their formal roll-out of The Cause.

 

[5150]

Hilary Johnson, in her usual no-nonsense, hard-hitting style, analyzes the latest shenanigans at:

http://oslersweb.com/blog.htm?post=774136

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Thanks for the heads up re Rubber Meets Road , Feb '11 , now being available.

If patients know people who are yet unaware of our situation, Hillary's blog is an excellent fast-read introduction.

Every time I read the chronicles, there is a stunned feeling of science fiction about it. The latest entry continues that feeling at its' worst.

the story line is almost unbelievable, if I didn't already know it is true.

 

[Michael Dessin]

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thanks for the heads up re rubber meets road , feb '11 , now being available.

If patients know people who are yet unaware of our situation, hillary's blog is an excellent fast-read introduction.

Every time i read the chronicles, there is a stunned feeling of science fiction about it. The latest entry continues that feeling at its' worst.

The story line is almost unbelievable, if i didn't already know it is true.

yes so true!!

 

[cigana]

That's made me really angry. We have to get rid of McCleary and find out who the anonymous donors are as a matter of urgency.

 

[muffin]

I have to admit that I was so very caught off guard when CAA put in Vernon from the CDC. NOT a fan of Vernon and that selection was a big mistake by the CAA.

NOT taking shots at the CAA, but it really is time to do a reorganization and a return to the original goals and missions as set forth by Founder Iverson.

 

[Enid]

Hillary Johnson is coming to us (UK) in May Invest in ME London Conference - very much looking forward.

 

[heapsreal]

What about if they dont ban cfs blood donations , that we organise a big group of cfs patients and where a shirt that says i possibly have a retrovirus causing cfs/me (have to be a big shirt i suppose but get the idea) and we all go and donate blood and let the tv stations know about it, now that would stir everything up, wouldnt it!!!
Hopefully a few psychobabblers need a blood transfusion and then we can tell them that they should be right if the keep exercising, lol.

Now would that get attention or what!!!

cheers!!!

 

[taniaaust1]

What about if they dont ban cfs blood donations , that we organise a big group of cfs patients and where a shirt that says i possibly have a retrovirus causing cfs/me (have to be a big shirt i suppose but get the idea) and we all go and donate blood and let the tv stations know about it, now that would stir everything up, wouldnt it!!!
Hopefully a few psychobabblers need a blood transfusion and then we can tell them that they should be right if the keep exercising, lol.

Now would that get attention or what!!!

cheers!!!

CDC and Wessely would like that.. as without them doing anything, it would make us all look like nuts and like we have psych issues.

 

[*GG*]

What about if they dont ban cfs blood donations , that we organise a big group of cfs patients and where a shirt that says i possibly have a retrovirus causing cfs/me (have to be a big shirt i suppose but get the idea) and we all go and donate blood and let the tv stations know about it, now that would stir everything up, wouldnt it!!!

Hopefully a few psychobabblers need a blood transfusion and then we can tell them that they should be right if the keep exercising, lol.

Now would that get attention or what!!!

cheers!!!

I thought ME/CFS blood donations was banned in most major countries now?

GG

PS I like the idea of the T-shirts.

 

[Desdinova]

I've been squarely on the fence regarding Kim McCleary. But now I'm really beginning to lean a little. The question bodes whether it's only her or the whole CAA. And what can one do except not support the CAA financially? Have a (petition) vote of No-Confidence is the only one left (that I can think of) and it's a drastic one at that.

 

[Doogle]

I've been squarely on the fence regarding Kim McCleary. But now I'm really beginning to lean a little. The question bodes whether it's only her or the whole CAA. And what can one do except not support the CAA financially? Have a (petition) vote of No-Confidence is the only one left (that I can think of) and it's a drastic one at that.

Desdinova,

You can record your vote:

Here How do you feel about The CAA?

And/or here Petition to disassociate from CFIDS Association of America as our advocacy representative