Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Dec 20, 2013.
Regarding this excerpt:
What Else Have We Missed?
I am now wondering what else is out there that we have missed! We have seen that while Jennie's group did a lot of hard work and must be thanked for that, they have also missed some obvious fatal flaws in at least one panelist. It not only is very unfair and extremely inefficient, but an impossible burden for disabled patients to uncover the biases, conflicts and incompetency of the panelists!
Regardless of IoM policy, it is simply unacceptable for prospective panelists not to list relevant biases or mention that they have published on the topic before. The burden should certainly be on them to disclose, since they already know if these problems exist and what they are, rather than on extremely disabled patients to have to do extensive research, almost all of which is simply impossible if one does't have free access to medical journals.
Also on occupycfs.com, comment 4 by Anushka discusses issues with Jason:
Anyone know if our statements to IOM will be available to the public??
I want each voice to count. And for my own records and education, I want to know what's being said and how many people are saying it.
According to occupycfs.com (under Submitting Feedback), IOM may put some comments in the public file but not all.
Please send your comments on Ultra Plush three-ply.
I was surprised to see Jennie's team taking a swipe at the ME-ICC definition:
I don't understand this, but I think it's funny.
Nothing like a good flush!
If you've written your letter to IoM about the panelists, post it here so we can get inspiration.
We weren't trying to swipe at the ME-ICC. We were quoting Lenny Jason's research, which is referenced in that footnote.
Have you considered the content of the study that you were describing and referencing, Jennie? Did you follow up on Anushka's invitation to “have a look what [Dr. Jason] plans to do with the ME ICC and why?” Have you read the discussion here?
You were taking a swipe at the ME-ICC whether or not that was what you were trying to do.
Well, it was transcribed in a moment of frustration, and I see it might have been more clear as "...send your comments (written) on Ultra Plush three-ply..." for the benefit of the upper food chain...
I superficially searched for the most "luxury"-esque descriptor of toilet paper, hence "Ultra Plush" and "three-ply" (which is of course disturbing in and of itself) ...
Anyway, it was (attempted) humor as a means of coping...
Edit: And I've been isolated, so my "learned niceties" may be faltering of late...
Here is mine -
Thank you for your help - J. spotila and J. Wiley
Unfortunately after one sends the letter, there is no way to copy it. I sent two letters and wish I'd kept copies. In my letters I said that I didnt see the balance being good at all as the non experts in the time they have will never be able to understand this disease as it takes years.. so far more experts then non experts are needed on the panel.
I also asked for the one who has done studies in neurasthenia be removed.. as I see someone in that field on the panel as being quite offensive to us and she is quite likey to hold baised views.
My second email to them said that I thought Leonard Jason should be the pscychologist on the panel due to his experience in the field and in forming definitions.
Here is my letter in PDF form. It is long and has footnotes so thought PDF better.
I suggest that anyone who has not yet written in simply endorse a letter or letters that they like, such as mine or Gabby's, if there is one you agree with. You can also of course say you endorse a letter with deletions (made clear by blacklining) or additions if you wish. This will save some precious energy.
Of course, if you don't agree with our letters, pls send in your own if you think 'engagement' is appropriate.
Anyone else who writes a letter, again, please post it here so others can get ideas or simply endorse your letter to the IoM.
Send to: firstname.lastname@example.org
I have sent emails endorsing Justin, gabby Jenny Spotilla and David egan's letters.
If there are more I can read somewhere I'd like to endorse those too.
Hi, I sent this letter as a personal addition to the letter that Jennie sent, on which I collaborated and which I signed, but then felt I had more to say along the same lines. Chris
I sent a letter of endorsement for Chris' letter as well.
Below is a copy of my letter (also at http://sallyjustme.blogspot.co.uk/ ) I intend to send it shortly. I thought about endorsing several other letters at the end, but decided in the end to just mention Justin's letter re specifics on individual panelists.
You may have missed this study, Chris.
HHS has gone protectionist, Justin. The IOM won't be producing an international definition.
You can also try a Google Site Search
Separate names with a comma.