P2P Library

Library1On December 9-10, 2014, the National Institutes of Health hosted a P2P Workshop on advancing ME/CFS research. Public comment on the Panel’s draft report was invited. However, NIH stated that public comments would be forwarded to the Panel and not retained by NIH.

Therefore, I have created this library of public comments on the P2P Panel’s report. These comments were sent to me by their authors, and I have made no changes to them except for formatting them as pdfs and adding authors’ names with their permission. I will update this page as I receive more public comments. Note that the content on this page is the responsibility of the authors. I do not endorse or reject any of these comments.

If you would like your comment added to this page, please email it to me at jspotila AT yahoo DOT com.

Update: On January 10, 2015, I sent a letter to NIH’s FOIA officer protesting ODP’s plan to not retain the public comments, and pointed out this was a violation of specific provisions of NIH’s document retention policy. On January 14, Wally reported that NIH had changed its position and would release the comments in response to FOIA requests. My request is pending.

Update (3/18/15): I received the FOIA documents on February 27, 2015. I discovered that many comments were missing, and filed an appeal.

Update (6/9/15): NIH claims it has released all comments, but we know there are at least six missing. NIH declined my suggested solution of including a caveat with the final version of the report.

Organizations

CFSAC – unofficial version (added 1/15/15)

IACFS/ME (added 1/21/15)

Invest in ME (link added 1/16/15)

Massachusetts CFIDS/ME & FM Assoc. and Connecticut CFIDS & FM Assoc. (added 1/16/15)

ME Association (added 1/21/15)

ME Vereniging, the Netherlands (added 1/16/15)

ME/cvs Vereniging, the Netherlands (added 1/14/15)

Solve ME/CFS Initiative (added 1/21/15)

 

Individuals

Anonymous #1 (added 1/10/15)

Anonymous #2 (added 1/15/15)

Anonymous #3 (added 1/16/15)

Anonymous #4 (added 1/16/15)

Anonymous #5 (added 1/16/15)

Anonymous #6 (added 1/16/15)

Anonymous #7 (added 1/16/15)

Anonymous #8 (added 1/16/15)

Anonymous #9 (added 1/16/15)

Anonymous #10 (added 1/18/15), Attachment 1

Anonymous #11 (added 1/21/15)

Anonymous #12, part 1 and part 2 (added 1/21/15)

Anonymous #13 (added 1/22/15)

Anonymous #14 (added 3/18/15)

Susanna Agardy (added 1/10/15)

CL (added 1/19/15)

Catherine Balestra (added 1/13/15)

Carollynn Bartosh (added 1/16/15)

Elenor Bengtsson (added 1/16/15)

Catherine Berger (added 1/15/15)

Cecelia Blair (added 1/10/15)

Kati Debelic (added 1/16/15)

Mary Dimmock (1/17/15)

Sister Sandra Duma (added 1/16/15)

Johan Edsberg (added 1/12/15)

Jim Ellsworth (added 1/12/15)

Pat Fero (added 1/15/15)

Henrik Fransson (added 1/13/15)

Ken Friedman, Part 1 and Part 2 (added 1/15/15)

Claudia Goodell (added 1/13/15)

H.I. Green (added 1/22/15)

Tina Grimso (added 1/15/15)

Sten Helmfrid (added 1/12/15)

Nancy Henson (added 1/18/15)

Chris Heppner (added 1/12/15)

Cort Johnson (added 1/16/15)

Lars Lagerstrand (added 1/15/15)

Joe Landson (added 1/16/15)

Margaret Lauritson-Lada (added 1/18/15)

Marilyn Lemmon (added 3/18/15)

Sean (added 1/16/15)

Sharon Light (added 1/15/15)

Denise Lopez-Majano (added 1/19/15)

Benita Meriaux (added 1/16/15)

Jim Mills (added 1/21/15)

Billie Moore (added 1/12/15), Attachment 1, Attachment 2, Attachment 3

Cecy Nielsen (added 1/14/15)

Anja Olergard (added 1/14/15)

Dave and Janis Olson (added 1/16/15)

Anne Ortegren (added 1/16/15)

Anita Patton (added 1/12/15)

Lisa Petrison (added 1/15/15)

Helle Rasmussen (added 1/15/15)

Jennifer Spotila (added 1/15/15)

Annette Stahlstrom (added 1/16/15)

Colleen Steckel (added 1/16/15)

Michelle Strasbaugh (added 1/17/15)

Concetta Taliercio (added 1/16/15)

Loetta Vann (added 1/17/15)

Erica Verillo (added 1/14/15)

Marion Vogel (added 1/16/15)

Katharina Voss (added 1/12/15)

Michael Walzer (added 1/16/15)

Paul Watton (added 1/16/15)

Janelle Wiley (1/16/15)

NA Wright (added 1/10/15)

11 Responses to P2P Library

  1. billie moore says:

    I urge everyone who submits comments to make a strong statement about the need for funding for all of these recommendations that the panel has discussed. This is a huge omission in their report. They list a multitude of needed actions and no money to pay for them. So, without money, it ain’t gonna happen. ME/cfs needs over $100 million a year allocated to it to start solving the mysteries of this disease.

    Billie

    • Floydguy says:

      If people do this please be very specific in what research should be funded. An environment where Ian Lipkin has to go hat in hand after being told ” CFS” is a psych issue is not a good one to move knowledge forward. The psych industry is still firmly in control of the purse strings.

    • Carol Carlson says:

      Billie, you are so right. Funding for specific ME research is absolutely necessary. This needs to be emphasized.

      Thanks to the commenters re Draft. An excellent job! Well done!

  2. Nina says:

    Thank you very much for P2P Library!

  3. cort says:

    Thanks! (Where are our orgs??? :))

  4. billie moore says:

    Again, again, again…THANK YOU, JENNIE. As of 1/18, this is more than a library for future documentation if the NIH does not save the comments. This is a wonderful communication system so that all the patients and advocates who read this blog can see what everyone else is saying. And that is so important, because in this case everyone is saying the SAME THING! It will be very hard for the NIH to tap dance away from significantly more funding for ME in the future since this set of comments documents repeatedly in just about every writer’s comments how harmfully inadequate funding has been, how desperately bio-medical research is needed and how this must be funded with public monies from the NIH. (btw – PUBLIC money – this is our tax dollars not being used where needed!) There are many more issues also brought up by different writers.

    These letters have particular strength, it seems to me, since they are not part of a call-to-action letter writing campaign (as effective as they are) but are the work of individuals and groups, including CFSAC, all writing independently. There is so much more power in knowing what everyone else wrote than in not knowing, AND having it all in one handy place. And we must keep in mind, there are probably as many more who have submitted comments to P2P who have not submitted them here. Those comments no doubt say the same things as those printed here.

    In addition, may I say how tremendously impressed I am by all the comments. Every fault in the P2P report is covered somewhere in someone’s submission.

    Billie

  5. Charmian says:

    The official version of the CFSAC’s comments are now posted and can be seen at:
    http://www.hhs.gov/advcomcfs/recommendations/cfsac-pathways-to-prevention-january-2015-updated.pdf

  6. Tara says:

    First, Jennie, a big thank you for all your work on this project as well as for keeping track of the government efforts on an ongoing basis. I’m a little confused — are the names listed here every name that appeared in the FOIA letters, or just the letters that have been submitted to you for inclusion here? Because my letter doesn’t appear — if it’s because I haven’t submitted it to you, then of course that makes sense, but if it’s because NIH lost my submission (after assuring me that it was received and would be considered), I am heartbroken. I put hours of effort into that letter, and although I didn’t expect my words to have any great transformative weight, I at least assumed that someone would READ them!

    I did save a copy and would love to email it to you for inclusion here, if that’s ok?

    • Jennie Spotila says:

      Yes, this page only lists comments submitted to me. The NIH FOIA releases contain many emails that were not shared with me by the authors and so those do not appear here.

      I would love to include your comments here, so please do email to me at jspotila at yahoo dot com. I will also look through the FOIA releases and tell you if your comment is not included. Please be patient, though, because that might take me a little time.

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