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)*.
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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 .
Instructions
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.
Respectfully,
NINDS CDE Team
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
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 .
Instructions
- Baseline/Covariate Information
- Fatigue
- Post-Exertional Malaise (PEM)
- Sleep
- Pain
- Neurologic/Cognitive/CNS Imaging
- Autonomic
- Neuroendocrine
- Immune
- Quality of Life (QoL)/Functional Status/CPET/Activity
- Biomarkers
- Comment Spreadsheet
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.
Respectfully,
NINDS CDE Team
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