Opportunity for PR Members to Collaborate on an ME/CFS Advocacy Project w/Deadline of 1/31/2018


Senior Member
Here is an opportunity for Phoenix Rising Members to collaborate on an Advocacy Project with a deadline of close of business (5:00 pm - EST) on 1/31/2018.

This project will involve reviewing and drafting comments to the proposed C.D.E.’s (Common Data Elements) that the NIH plans to issue as the criteria to be used for future ME/CFS clinical research projects.

If you are interested in working on this project with other Phoenix Rising Members, reply to this thread and make sure that you have turned on access to the private conservation feature available in the menu bar at the top of each Forum screen. the box next to this selection and chose to allow others to start a conversation with you. You can then be contacted privately via the Forum to discuss how this project will be coordinated and your interest/availability to participate in this project.

Instructions for Providing Access to Personal Conversations (aka - Private Messages (P.M.’s).

1) Select your user name from the menu bar.
2) Select the “Privacy” option.
3) Scroll down and select “Start a Conversation with you”.
4) Select “Members Only” or if you want members and non-members to be able to start conversation with you then select this option.
5) Select “save” at the bottom of the page.
6) When logged into the Forum, you will see the “Alert” button on the menu bar at the top of your screen highlighted with the number of conversations/messages waiting for your review/response. Click on the “Alert” button to access the conversations/messages.

See additional information from an e-mail rec’d from the NIH set forth below, as well as an explanation as to the definition and purpose of the NIH’s use of C.D.E.’s (Common Data Elements

NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review Period – December 15, 2017 to January 31, 2018

Dear CDC ME/CFS SEC Call Group,

We know you’re interested in ME/CFS developments so wanted to make sure you were aware of this.

Dear Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) clinical research community,

The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), and Centers for Disease Control and Prevention (CDC) recently assembled an external working group of international experts, patients and advocates to develop a set of ME/CFS Common Data Elements (CDEs) for use in clinical research. These documents are available on theNINDS CDE website from December 15, 2017 - January 31, 2018 for feedback from the ME/CFS research and practice community. We hope you will take the time to review the draft CDEs and provide your comments prior to the general release.

To access and review the CDE recommendations please go to the website: https://commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards .

Zip file here: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDE Public Review

Please feel free to review and provide comments on as many domains as you wish. We look forward to your feedback and ask you to please submit your comments by January 31, 2018.

We hope that you will share this announcement with your colleagues and encourage them to provide feedback as well. Thank you for your time.



Email: NINDSCDE@emmes.com

*Definition and purpose of NIH’s use of “C.D.E.” (Common Data Elements) - https://www.nlm.nih.gov/cde/glossary.html#cdedefinition and


Senior Member
@Inester7 - Great! I have heard directly from one other person and I will contact the individuals who commented in the thread started by Simon to see if they are interested in being part of a group Advocacy Project. I am going to try to tackle the 28 page report over the next day or two to begin formulating my comments to bring to the group.

Did you see that Medfab (Mary), who worked as a participant on the PEM CDE group that developed the draft CDE’s, has provided a comment (Reply # 9) with some background information on how the Group developed the PEM CDE? See, http://forums.phoenixrising.me/inde...ure-research-action-needed.57023/#post-947016


Moderator Resource
Southern California
@Wally - I missed this when you first posted it. I did see Simon's post the other day though. I might be interested in helping; however, I have volunteered to help out on the board and am waiting to see what form that will take, so I can't commit to anything else right now. But I do think this is EXTREMELY important. Without a proper definition of PEM (and I like the IOM one very much), all the research in the world won't do any good.


Senior Member
@Mary. Thanks for your reply. There have been several people who are interested in working on comments to submit to the NIH and Simon has been hard at work reviewing the CDE. My goal is to make sure that something gets drafted that can be shared with the patient community that they can either participate in by signing on to or being able to modify to express their own specific comments about the CDE.

The NIH has asked for specific comments without people just submitting the same comment over and over again. While I am sure that it would be easier for the NIH to manage the comment submissions without receiving duplicate comments, I am of the opinion that patients and other stakeholders should present their comments in whatever form and manner suits their needs. A record of the number of comments submitted by the patient community is important when demonstrating to the legislative branch of government the efforts made by our community to express our needs, concerns and demands to the executive branch of government. So, I like you, believe that addressing the draft CDE proposed by the NIH, is a critical opportunity for our community to raise our voices to express our opinions.

Over the next couple of days, I hope to have a dedicated thread where individuals can provide their thoughts and ideas about specific parts of the CDE’s. So even if they are not able to work on drafting a group response, they will have a place to share their thoughts with those drafting the group comment and those who may want to submit their own individual comment(s). I will post here and in the thread started by Simon where this new thread will be located.



Senior Member
@rel8ted - Great. I will loop you in with our band of members who will be working on drafting a group response, as well as providing the patient community with a sample response that can be modified, if they would like to submit their own individual comments.

I am still reviewing the CDE’s (I have been recovering from the flu, so taking a bit longer for my brain to absorb all the information that I needed to review). I hope to have a “conversation” with our volunteer group tomorrow that includes 1) suggestions on specific areas of the CDE’s where drafting comments will be focused and 2) how we can efficiently coordinate our efforts for this advocacy project.