CDC New Chronic Viral Diseases Branch Chief

[Marty]

Could we write a press release condemning the appointment?


Leaves, I think that's a great idea! Embarrassment outside of the CDC is a good tool and our only target now, since embarrassment within the CDC didn't work. And we could send it to all the congressional representatives that are funding CDC and request that inquiry.

CAA won't do it; could somebody figure out how to take a poll to get a large number of signers and just write a simple statement that says the patients and the doctors engaged a large campaign to prevent this appointment and we were ignored? And the reason is that the CDC continues to ignore the science of ME and does their studies on tired people.

"I do agree tho that if we just antagonize her but fail to remove her, that we are worse off. So please be pragmatic and let us not allow emotion to lead."

On the contrary, we must make her (and her boss) uncomfortable. This is a huge insult; strong emotion is very appropriate. Antagonism is warranted!

 

[SOC]

So what do you want to do about it?

Basic human psychology says that we can make her love us in order for her to help us, make her fear us in order for her to do what we want, or make her hate us in order for her to hurt us. Which do you pick at this time?

I think it makes sense to give her a chance -- as branch chief -- to do the right thing. We have an opportunity to get her on our side; let's not screw it up. There's always time to alienate her later if she behaves against our best interests.

Let's remember that:
1) As interim branch chief (and wanting the job permanently), she would be unwise to rock any boats at CDC. Now she actually has the job for real she can start making changes... if she wants to. We should probably wait and see what happens.
2) CDC labs are now actually finding XMRV in ME/CFS patients (okay, only 4, but they're coming in line), so the paradigm may be changing at the CDC.......

Did I really say that? Can I possibly believe that? :worried:

 

[floydguy]

So what do you want to do about it?

Basic human psychology says that we can make her love us in order for her to help us, make her fear us in order for her to do what we want, or make her hate us in order for her to hurt us. Which do you pick at this time?

Nothing. I would suggest only bolstering institutions that want to move forward with CFS. Our efforts should be to get as much CFS work done outside of CDC as possible. Doing anything with Unger at this point is counterproductive.

 

[Marty]

For those who think we should wait, have you reviewed Unger's October 2010 CFSAC presentation with Q&A? Or read her papers? Or seen what has been published under her watch?

 

[Marty]

"Please give ME/CFS the same consideration as other chronic illnesses; we're not asking for special treatment, we're asking for equal treatment."

Do you realize that we have been "asking" for this for 25 years? TIME TO CHANGE TACTICS.

 

[SOC]

Nothing. I would suggest only bolstering institutions that want to move forward with CFS. Our efforts should be to get as much CFS work done outside of CDC as possible. Doing anything with Unger at this point is counterproductive.

Not going to argue with that. I don't see the CDC as being our buddy in any great hurry, I just don't think we need to alienate Unger, yet. Give her time to prove herself in the position.

 

[SOC]

For those who think we should wait, have you reviewed Unger's October 2010 CFSAC presentation with Q&A? Or read her papers? Or seen what has been published under her watch?

As I said, that was done while she was INTERIM branch chief (or whatever). She was not, then, in a position to change policy or position, and would have been stupid to get on the wrong side of any people making the hiring decision. I advocate giving her a chance to prove herself when she actually has authority to change things.

 

[Marty]

Does it make you wonder why even the doctors' organization, as well as the patients, initiated the objection to her appointment? Maybe they knew what they were doing...?

 

[SOC]

Does it make you wonder why even the doctors' organization, as well as the patients, initiated the objection to her appointment? Maybe they knew what they were doing...?

So we don't give her a chance? We just come out swinging?

I'm not saying she is going to be fine; I'm just suggesting that taking a couple of months to see how she manages the job is not a big deal. The good work is being done elsewhere anyway.

 

[lancelot]

Does it make you wonder why even the doctors' organization, as well as the patients, initiated the objection to her appointment? Maybe they knew what they were doing...?

there were only 2 people being considered for the position. be glad it was unger and not jones. i would give unger a chance and a hope not with jones. Besides, unger has recently said that personality disorders is secondary to CFS. if someone could pull up her exact words-would be appreciated.

give her a chance to do the right thing. she has alot of monies and power as CFS director which can either hurt us or help us. encourage her not alienate her. She can only expedite or delay but she nor anyone else can stop the truth. Strategy > Emotions

 

[CBS]

In a recent post (http://cfspatientadvocate.blogspot.com/2010/11/dr-marcus-conant-and-advocacy.html), The Advocate wrote of Dr. Conant's presentation at the ILADS conference:

In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a stirring talk enumerating a number of key points. The Patient Advocate has read over his notes on this lecture and Dr. Conant's advice to us follows:

"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."

"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)

"Focus on research, not suffering."

"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.

"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.

"Don't blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time. (Dr. Conant was not talking about deadly enemies here. He expressed clearly that he would not waste any time on someone whose mind he could not change. In this above quote, he was emphasizing the notion of inclusion - and of not unnecessarily making enemies)

“Develop coordinated activism" How do we best get funds to study this disease?

Dr. Conant learned the hard way, in the trenches from the beginning of the AIDS crisis in San Fransisco. We're fortunate to have his support. He left his practice in SF and moved to NY to lend his talent to the MLV question. We should give his words careful consideration.

Can Dr. Unger be ""brought in?

 

[xrayspex]

oh good, personality disorder is secondary to cfs, is it secondary to hiv and diabetes too?

this is no good, she's had a chance in the past

I wrote everyone protesting her appt before she got in did no good

what is mangan even doing for us, geeeesh

 

[Cort]

Does this mean she's CFS chief or Chief of that Division? Did I miss something or did it say she was heading the CFS program???

Other question - was Reeves chief of the Ricketsiall Division or chief of the CFS research effort or both?

I don't think we have a CFS chief yet???

 

[Cort]

Well, her input at the last CFSAC meeting in October was not particularly impressive; I felt like she still had at least one foot in the "CFS is a stress-related illness/ mind-body BS" camp but I do agree we need to give her some leeway and see how she does in the future.

Maybe she'll change her mind, much like Susan Vernon did. I don't think the ME/CFS community is demanding; some segments are but I think the majority just want ME/CFS to get the attention it deserves and also proper research including looking at ALL the literature, including non-CDC generated research.

Dr. Unger, if you're reading this, please consider talking to clinicians and patients who have dealt with the illness for years, if not decades. You wouldn't conduct research on another chronic illness like SLE or MS or diabetes just by calling people up, having clinicians see them a few times, and calling it a day, would you? Aside from community-based studies, you'd do clinic-based studies also. Please give ME/CFS the same consideration as other chronic illnesses; we're not asking for special treatment, we're asking for equal treatment.

I agree! We just want equal treatment - nothing special.....just treat us like you do other diseases!

I think the CDC is actually doing some clinic based studies now - comparing the patients in their registry with those in clinics

The main problem for me is that the CFS research program seems to be at a dead end and has been for a couple of years. When Dr. Vernon left she told me she thought viruses were it in CFS . I wonder what Dr Unger feels...

 

[Cort]

oh good, personality disorder is secondary to cfs, is it secondary to hiv and diabetes too?

this is no good, she's had a chance in the past

I wrote everyone protesting her appt before she got in did no good

what is mangan even doing for us, geeeesh

We would be lucky to get someone like Mangan in there - what a breath of fresh air he is! He is just overseeing the program, though - not leading a research team on the subject as the CDC CFS chief will be.......I think we're still waiting for that appointment??? Is the Head of the Viral Diseases branch also the head of the CFS program? .....

 

[Dolphin]

there were only 2 people being considered for the position. be glad it was unger and not jones. i would give unger a chance and a hope not with jones. Besides, unger has recently said that personality disorders is secondary to CFS. if someone could pull up her exact words-would be appreciated.

give her a chance to do the right thing. she has alot of monies and power as CFS director which can either hurt us or help us. encourage her not alienate her. She can only expedite or delay but she nor anyone else can stop the truth. Strategy > Emotions

http://abcnews.go.com/Health/MindMo...ersonality-disorders/story?id=12102316&page=1

But Dr. Elizabeth R. Unger, acting chief of CDC's Chronic Viral Diseases Branch and spokesperson for the study, said that personality disorders may not cause CFS but rather, act as a secondary symptom of any chronic or severe disease.

"Other studies have found personality disorders were associated with fatigue and depression, as well as with chronic fatigue syndrome," said Unger. "The objectives of this study were to follow up on previous personality research as well as to describe the prevalence of personality disorders in people with CFS.

I definitely agree that Jones would have been worse.
See: http://forums.aboutmecfs.org/showth...ad-of-the-CDC-s-CFS-program-)&highlight=jones for some of the things he has said and published.
One more example here: http://forums.aboutmecfs.org/showth...e-of-the-views-of-the-CDC-s-James-(Jim)-Jones

 

[Cort]

In his half-hour lecture entitled "Lessons learned from AIDS", Dr. Conant gave a stirring talk enumerating a number of key points. The Patient Advocate has read over his notes on this lecture and Dr. Conant's advice to us follows:

"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."

"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)

"Focus on research, not suffering."

"Don't trust the press." "The press is not your friend." - they are corrupt and have another agenda.

"Congress is your last resource, not your first." "The federal government is not your friend." You first have to prove that something is there.

"Don't blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time. (Dr. Conant was not talking about deadly enemies here. He expressed clearly that he would not waste any time on someone whose mind he could not change. In this above quote, he was emphasizing the notion of inclusion - and of not unnecessarily making enemies)

Develop coordinated activism" How do we best get funds to study this disease?

That is a real template - and we are really at odds with it! Coordinated activism, Bringing your adversaries in (instead of making enemies of them - ensuring no communication or exchange of useful information takes place)...focus on getting research funds - I think we do get that one...The fed govt is not your friend - I think we get that one too, but where else to go?

 

[Cort]

http://abcnews.go.com/Health/MindMo...ersonality-disorders/story?id=12102316&page=1



I definitely agree that Jones would have been worse.
See: http://forums.aboutmecfs.org/showth...ad-of-the-CDC-s-CFS-program-)&highlight=jones for some of the things he has said and published.
One more example here: http://forums.aboutmecfs.org/showth...e-of-the-views-of-the-CDC-s-James-(Jim)-Jones

Thanks Dolphin - its very nice to have the actual quotes. I agree about Jones....

 

[Cort]

Could we write a press release condemning the appointment?


Leaves, I think that's a great idea! Embarrassment outside of the CDC is a good tool and our only target now, since embarrassment within the CDC didn't work. And we could send it to all the congressional representatives that are funding CDC and request that inquiry.

CAA won't do it; could somebody figure out how to take a poll to get a large number of signers and just write a simple statement that says the patients and the doctors engaged a large campaign to prevent this appointment and we were ignored? And the reason is that the CDC continues to ignore the science of ME and does their studies on tired people.

"I do agree tho that if we just antagonize her but fail to remove her, that we are worse off. So please be pragmatic and let us not allow emotion to lead."

On the contrary, we must make her (and her boss) uncomfortable. This is a huge insult; strong emotion is very appropriate. Antagonism is warranted!

What I think it would be best to state what we expect or desire in a branch chief overseeing the CFS program....rather than condemning her - state what we want her to do.....that leaves things open a bit.

 

[medfeb]

I am new to this forum so I may be suggesting things that you have already tried. I'd appreciate your letting me know what I am missing...

I read the following article in the NewYorker on a mother's crusade to bring attention to a fatal condition that her sons had. It struck me that there may be lessons learned here in how to get the attention of the government, the drug companies and academia.


If not this one, perhaps there are successful advocacy groups for other diseases out there that could help create define a new model.

Can anyone summarize briefly what you have tried and how you partner today with the other ME/CFS related groups - e.g. CFIDS, IACFSME or any other ME/CFS groups?