Researching the IOM Panelists

[jspotila]

I've mentioned this in other threads, but wanted to put out a general call for help.

The IOM panel is likely to be announced in the next couple weeks. We will have 20 days to comment on the selections.

To help the community provide meaningful comment, I am gearing up for a massive research effort as soon as the panel is announced. I will be looking for expertise, bias, conflict of interest, etc.

I have two helpers so far. But I could use more help!!!! I am looking for people who can be available as soon as the panel is released, and who can work quickly and independently. I will have guidelines for possible sources to get people started.

The goal is to complete research and writing of profiles within 48 hours. Volunteers would work independently on one or more panelists, but then come together with others to discuss findings and decisions on bias, etc.

This is not a Phoenix Rising effort. Profiles will be published on my blog, and will (hopefully) circulate widely in other venues like PR and ProHealth. But there are so many of you interested in these issues, I thought I would throw this out there.

If you are interested in helping, please get in touch with me as soon as possible. PM me here, send me an email at jspotila@yahoo.com or comment in this thread. Thanks!

 

[justinreilly]

fyi, at the Mt. Sinai Conference during the Q & A someone asked if anyone there had been contacted by IoM to be on the ME redefinition panel. Nancy Klimas was the only one so far (of her, Dan Peterson, Eric Schadt, Judy Mikovits, Derek Enlander, Frank Ruscetti and Ashok Gupta)

 

[Chris]

Well, that is an interesting start--Nancy is no pushover, and can and does speak her mind. And knows a lot with many years of serious experience. Did she indicate whether or not she would accept? Chris

 

[jspotila]

fyi, at the Mt. Sinai Conference during the Q & A someone asked if anyone there had been contacted by IoM to be on the ME redefinition panel. Nancy Klimas was the only one so far (of her, Dan Peterson, Eric Schadt, Judy Mikovits, Derek Enlander, Frank Ruscetti and Ashok Gupta)

Veerrrrrry interesting. Nancy was nominated by at least six sources, probably more. I'm a bit surprised that some of those others didn't get letters, though.

 

[Chris]

I would guess that top researchers contacted for the committee will wait, and in contact with their peers will want to see what the whole committee looks like before committing to a firm "yes" or "no" or publicizing their nomination? I am one of I would guess quite a few of us who nominated a whole slew of the protesting researchers, including of course Nancy.

 

[jspotila]

I would guess that top researchers contacted for the committee will wait, and in contact with their peers will want to see what the whole committee looks like before committing to a firm "yes" or "no" or publicizing their nomination? I am one of I would guess quite a few of us who nominated a whole slew of the protesting researchers, including of course Nancy.

I'm not sure about that. I assume they are in contact with each other, but I don't know that they have the option of withholding a firm yes or no until the whole committee is populated. Prospects had to indicate whether they were interested, and then IOM has been going through its own internal process. I think people had to take a bit of a leap and indicate willingness to serve.

 

[justinreilly]

Veerrrrrry interesting. Nancy was nominated by at least six sources, probably more. I'm a bit surprised that some of those others didn't get letters, though.

I'm not that surprised. One scenario we have always known is quite possible or probable is that most of the panel will be non-experts in ME. Nancy has always been a favorite or at least the least objectionable real ME researcher to the govt because of her 'chronic fatigue' talk and her advocating CBT and GET.

I bet not only is the panel going to do a definition, but they will put some tx suggestions in there. THese reports get bloated, I mean in the GWI reports they discuss ME and the nature of the illness (psychogenic) and recd treatments (CBT/GET) and the report isn't even on ME in the first place. So Im betting they are counting on her agreeing with or promoting those tx. Or maybe it's more accurate to say that HHS and CAA nominated her or endorsed her for those reasons and IoM picked her, as you said, bc she was nominated by 'both sides'.

She does speak up and has been invaluable on CFSAC, but she also famously shook Peter White's hand (which led to her publishing an old CBT study) which I don't think any self-respecting scientist or person who knows what he is up to would do.

I would be extremely surprised if Vernon wasn't on there. Most probably Bateman, maybe even Ann Vincent (she kills four birds with one stone- (1)she will screw up the definition and slant it to psychiatric (2) they can pass her off as an ME expert (3) she is a woman (4) she is black)

So, basically, to me this is some circumstantial evidence they are going in the direction we feared and most of us expected- maybe one or two somewhat govt leaning ME experts, a few fake ME experts, some psychiatrists and a bunch of non experts.

If anyone hears of any other people who have been contacted please post here so we have a heads up! Thanks.