Help Us Help You
Posted: 20 July 2021
Updated: 11 August 2021
Update to our CDC Report Blog
ME International submitted a detailed response for the CDC call for comments. HERE is a link to our 77 page document.
We have organized our comments under the following headings.
- RECOGNIZING ME AS A DISTINCT DISEASE
- EVIDENCE TO SUPPORT DIFFERENTIATING ME FROM CFS
- REPLACE PACE TRIAL’S RECOMMENDATIONS WITH IC PRIMER
- REPORT’S CONCLUSION SHOWS PROCESS INEFFECTIVE FOR
PATIENTS DIAGNOSED WITH ME
- SPECIFIC FINDINGS THAT ARE NOT APPROPRIATE TO APPLY TO
THE ME PATIENT GROUP
- IMPORTANCE OF RECOGNIZING ME AS A DISTINCT DISEASE
- RESEARCH NOT INCLUDED THAT WOULD BENEFIT THE ME
- SEVERE ME
- REFLECTING ON COMMENTS FROM 2014 AHRQ REPORT
- RECOMMENDED CHANGES TO DRAFT REPORT TO ADDRESS
ME INTERNATIONAL’S CONCERNS
- TREATMENT RECOMMENDATIONS FOR ME PATIENTS
- CLOSING REMARKS
On May 16, 2021 the CDC posted a call for comments on the report titled “Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review” in the Federal Register.
Comments must be submitted before 16 August 2021.
ME International is an all volunteer organization with a small group of active volunteers. (No paid staff). ME International feels responding to this request for comments is of the highest priority and have dedicated many volunteer hours to this endeavor. This is a rare opportunity to explain the importance of proper diagnosis and treatment for people with myalgic encephalomyelitis.
The purpose of making sure everyone gets properly screened and tested is part of our “Leave No One Behind” mission. No matter which diagnosis someone has been given, everyone deserves to be fully tested and screened to rule out other diseases/conditions and get proper treatments based on appropriate testing.
We highly encourage anyone who is able, to submit a comment to the CDC regarding this report.
Comments can be written based on our submission, or can be as simple as recommending treatments be based on the diagnosis, testing, and treatment guidance found in the ME IC Primer. The ME IC Primer can be seen in multiple languages on our website HERE.
Comments can be submitted either by:
- MAIL to:
Anindita Issa, MD
Centers for Disease Control and Prevention
1600 Clifton Road NE, Mailstop H24-12
Atlanta, Georgia 30329
(possibly the easiest option), or
- Through the Federal eRulemaking Portal at http://www.regulations.gov.
The comment form has two requirements before users can submit a comment: (1) Users must enter content in the comment field, and (2) Users must choose an identity.
- Users choose an identity from three options:
- As an Individual: First and Last Name are required.
- On behalf of an Organization: Organization Type and Organization Name are required.
- As Anonymous: No additional information is required.
- Users choose an identity from three options:
NOTE: The “Submit” button will not activate until the submitter has chosen an identity.
BE SURE to include the Docket No. CDC-2021-0053 when submitting any comments. If you have any questions, or need assistance, please contact Admin@ME-International.org.
We hope to expand our comments on the specific clinical information based on the IC Primer as well as information that has come to light since then, like thorough dysautonomia screening, expanded screening for spinal/cranial issues, benefits of ongoing IV fluids, testing for small fiber neuropathy, low dose naltrexone’s benefits to relieve pain, test for NK cell function, etc.
CLOSING REMARKS from our submission:
“This report underscores the importance of facing the challenge of heterogeneous patient groups in research. The solution is to adopt the International Consensus Criteria (ICC) and promote the use of the 2012 ME International Consensus Primer (ICP) so doctors are well informed to diagnose patients which will give researchers the best possible patient selection.
The flaw in lumping ME and CFS together and coming to conclusions that affect the health care of patients who don’t have the same needs, has shown to lead to lack of proper care for all patients involved.
A statement in this report regarding the importance of the adoption of the ICC and the ME ICP to move this field forward can be made to protect this patient group from further harm of using inappropriate treatment.
ME International urges the CDC to recognize that due to the research used to create this report which did not use patients diagnosed using the ICC, that concrete steps are needed to recognize ME as a unique disease and utilize the expert guidance in the ME IC Primer for those patients diagnosed with ME.”
Kimberly Krause – 8/10/2021 08:21:31 pm
Colleen has worked so hard on the very important information provided to the CDC on ME ICC.
It is time to be heard and understood!
Jacinthe – 8/12/2021 12:30:51 pm
Je souhaite que l’encéphalomyélite myalgique soit reconnue comme maladie unique, Atteinte depuis 26 ans, j’attends aussi que vous donnez de l’argent pour la recherche. Merci.
Reply – MEI – 8/23/2021 06:10:21 am
English (Deepl) translation – I would like myalgic encephalomyelitis to be recognized as a unique disease. I have been affected for 26 years and I am waiting for you to donate money for research. Thank you.