August 2021 Newsletter
Greetings! 

PLEASE NOTE

We have made a correction to the link to the article "What Freedom Day Means for Those Who Aren’t Free" under Severe ME.
 
Sincerely,

Colleen Steckel, Editor Colleen.Steckel@ME-International.org

TIP FOR THE MONTH
Do you feel exhausted?

Click HERE to learn about Post-Exertional Neuroimmune Exhaustion (PENE)

ME INTERNATIONAL NEWS
Website Updates
Possible Biomarkers for ME. Click HERE for the updated page.

Understanding Criteria - This page has also been updated. Click HERE.

ME-ICC Studies - Click HERE for the updated page.

France was added to the European Union organizations page as an ICC organization - Click HERE for the EU page.

PATIENT CARE
Our hearts here at ME International go out to our German ME patients as well as all people in Germany and nearby countries severely affected by the recent devastating floods.

Please let us know if we can do anything to help.

SEVERE ME
Severe ME Day - August 8

August 8th has been set aside as a day to recognize Severe ME, in honor of the late severe ME patient Sofia Mirza who died at the age of 32 as a result of detrimental medical care for myalgic encephalomyelitis.

What is Severe ME? Severe ME is NOT the same as having a severe episode of ME. Definitions vary but this is considered to be the 25% most ill in the ME community. The IC Primer states: “Mild (meet criteria, significantly reduced activity level), Moderate (an approximate 50% reduction in pre-illness activity level), severe (mostly housebound), or very severe (mostly bedridden and needs help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour.” 
 
Click HERE for ME International's website page with information specific to the #SevereME group.

What Freedom Day Means for Those Who Aren’t Free



Click HERE for this article that discusses clinically vulnerable people during the COVID-19 pandemic. "Freedom Day. It’s hard to imagine a name more starkly at odds with the reality faced by so many of us." Could it apply to people with ME? 

ADVOCACY
CDC Draft Report

ME International will be providing comments to the Centers for Disease Control and Prevention on the draft report “Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review” that was advertised in the Federal Register on
May 17, 2021. Comments are due by August 16, 2021.

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 2012 ME IC Primer for those patients
diagnosed with ME.

Click HERE for a recent blog on our website with more information. You can also see our draft response by clicking on the link in the blog. See our Closing Remarks at the end of the blog.

We highly encourage anyone who is able to submit a comment to the CDC regarding this report. Your comments could be based on our draft comments.

The Federal Register notice can be found HERE.

You can download the 419 page draft report HERE.

#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC


Click HERE to learn why this organization promotes the ICC diagnostic criteria for ME patients. Anyone in the world can sign the petition because what happens in the US affects everyone around the world. 

If you haven't signed the petition, please sign at the link above. So far, well over 8800 have signed the petition.   

SCIENCE
Blast From The Past - Australia Research

Immune Abnormalities in Patients Meeting New Diagnostic Criteria for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (Nov 2013)

Results: Natural killer cell activity was consistently and significantly decreased, and regulatory T cells were significantly increased in both patient groups compared to healthy controls. Differences were found in human neutraphil antigens and expression of natural killer cell receptors between patient groups. Highly significant correlations were also found between physical status and some immune parameters in International Consensus Criteria defined patients.

Conclusion: This preliminary investigation on different diagnostic criteria suggests that the International Consensus Criteria may be more effective at detecting salient differences in the immune system.

Click HERE for the research article.

IN MEMORIAM
ME/CFS Memorial Page

"This page acknowledges all those who have passed from ME/CFS or secondary conditions. They acknowledge their suffering and promise that they have not died in vain. With love, we remember them." Click HERE for the memorial page.

The purpose of ME (Myalgic Encephalomyelitis) International is to educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.