What happened to the FDA campaign that was just started and aborted?

[Merry]

Merry,

So you're saying everyone at HHS and NIH is passing the buck to Mangan? Right up to the Cabinet? I like Mangan and I agree with you that he seems genuine and conscientious. I just wasn't sure his upline was conscientious or genuine. (Mangan doesn't have the power to do certain things that they should be doing, like change the definition and increase funding, and simply passing all their letters to Mangan doesn't remove from them the obligation to do these sorts of things. However if they are thoughtless enough to think they are doing their part by passing all their letters to Mangan, I'm not sure what we can do to change their minds except continue to lobby Congress and try to engage the media.)

Willow

Hi, Willow.

All I know is that when I wrote to Francis Collins and then to Kathleen Sibelius, Dennis Mangan was the one who answered (as his superiors instructed). The second time he responded, he noted apologetically that he was sending me the same letter. And why shouldn't he, since the letters I wrote to Francis Collins and Kathleen Sibelius were much the same?

I have never heard the word "upline" before and don't know what it means.

I don't have any inside knowledge of what is going on in government agencies responsible for addressing the problems of ME/CFS patients. I don't know what the most effective strategies for advocacy are. My politcal instincts are not acute.

The passion and determination of others in the ME/CFS community I find inspiring. The hard work others have put into advocacy in the last few months I appreciate. I join in when I can, especially when I think my energy will be well spent.

From my point of view, as someone who has been ill for more than forty years and whose mother was ill, too, always (I have no memory of her as well), I am amazed at all that has transpired for the good in this last year. Really, I had given up hope that I would live to see a breakthrough and change.

Merry

 

[mezombie]

Put pressure on Congress

I do think many of the problems at NIH go beyond anything Mangan can do. He does not have direct influence over NIAID (the National Institute for Allergies and Infectious Diseases), for example. NIAID Director Fauci is a huge roadblock, IMHO, And he refuses to repond to anyone.

I truly believe that a Congressinal investigative hearing is necessary to get the kind of reponse we need.

Such a hearing allows a Congressional Committee to subpoena individuals. Those appearing before the Committee must swear to tell the truth. If they don't, they are perjuring themselves. The process works much like a judicial court hearing.

People like NIAID's Fauci and CDC's Monroe would be required to answer tough questions. The outcome is directives from Congress, as in "you must do this with the federal funds we're giving you". "You cannot do this". Etc.

Check out http://sites/google.com/site/timeforactionad for easy instructions on how to find your Congressional delegation's contact information. A short sample message is included, but obviously more can be added for those who are up to it. (It was set up to be user-friendly for the most cognitively challenged).

In the past, the patient advocacy community has found at least one member of Congress or a Senator who was willing to go to bat for us due to direct and persistent contact with a constituent.

It is definitely a worthwhile pursuit.

 

[WillowJ]

I have never heard the word "upline" before and don't know what it means.

Sorry if I was using jargon. Mangan's "upline" means all of Mangan's superiors, specifically his supervisor, his supervisor's supervisor, and so on.

And I agree; the passion and determination of others in the ME community is inspiring.

Zombie, I'm with you on Congressional hearings. I will contact my Senator again. And I'll contact the other one, too; even though I have no trust in the other, she's well-placed in committees.

 

[Mark]

Just a quick comment on all this to say that I agree with the gist of how the discussion has gone here.

I don't think one can just ignore what Dr Mikovits said, but at the same time there remain loads of issues on which there doesn't seem to have been any progress at all - a degree of communication with the patient community, a bit more openness and transparency (well, I want a lot more, from the world of science in general, but that's my personal bugbear perhaps), and most importantly, whether XMRV pans out or not, we are still in a disgraceful situation regarding research funding.

A massive injection of funds for ME/CFS research (massive to us, peanuts to those holding the relevant budgets) is long, long overdue, regardless of how XMRV works out. We have every right to continue to demand that from those who are able to deliver it, and if the people we're writing to aren't able to deliver that, then they need to tell us who else to write to. Until that tangible change takes place, we have every right to continue to make as much noise as we can.

 

[George]

(wag, wag, wag, wag, wag, wag, Big slurpy on Marks ear, grins)

That's what I'm talking about, we deserve way better, way, way, way better.