July 2020


Welcome to our #MEAction Colorado newsletter.  We hope you find some valuable information in these newsletters.  If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Sincerely,

Lara Heisler, Editor   heisler.lara@gmail.com
Jim Lutey, Editor       jimlutey@gmail.com 
 

Black Lives Matter 

 
"Our fight for health equity for people with ME cannot be fought without recognizing the systemic racism that perpetuates in our country and our world. It cannot be fought without considering the Black members of our community who have confronted even more difficulties and more barriers because of their race. It cannot be fought without acknowledging that the ME community includes far more white individuals than Black individuals and other individuals of color because of systemic racism. It cannot be fought without addressing what is happening right now and has happened for centuries when it comes to Black lives." We, the MEAction Colorado Chapter steering committee and Newsletter volunteers, strongly support that statement.
 
According to the CDC, "ME/CFS occurs in all ethnic and racial groups and in countries around the world. It is at least as common among African Americans and Hispanics as it is among whites." The CDC also notes that "whites are diagnosed more than other races and ethnicities."
 
Wilhelmina Jenkins, wrote an excellent blog about her experience as a Black PWME. "Living with ME/CFS under the best of circumstances is a nightmare. Living with it without a diagnosis is unbearable. Undiagnosed patients blame themselves, try to push through this unrelenting disease, and become more severely ill. And if you are an African American who has heard for your entire life the racist beliefs that Black people are lazy, unintelligent, and not motivated to work hard, this disease will reinforce those false internalized beliefs. A diagnosis can place that person within a community of very sick people who are trying their best under impossible circumstances. This is a very severe biomedical disease, not a personal failure."
 
Blacks face a very different outcome in the US medical system than do whites. Many of these outcome differences can contribute to difficulty being diagnosed with and treated for ME:
  • Blacks are more likely to die from COVID-19, with 92.3 deaths per 100,000, compared to 45.2 for whites. See the link HERE.
  • Blacks are more likely to get COVID-19, with 699 cases per 100,000 compared to 350 for whites.  See the link HERE.
  • Compared to whites, blacks are almost twice as likely to be uninsured. In all age groups, blacks are more likely than whites to report not being able to see a doctor in the past year because of cost.  See the link HERE.
  • Chronic stress from frequent racist encounters is associated with chronic low-grade inflammation.  See the link HERE.
  • Exposure to race-related stress has a sustained impact on physiological stress responses.  See the link HERE.
We strongly encourage everyone in the ME advocacy and support community to:
  • Be educated on the factors that allow people of color to receive substandard medical care throughout the health care system.
  • Acknowledge the biases that play into the situation.
  • Make a conscious effort to reach out to those in underrespresented minority communities during advocacy, educational and other outreach campaigns.
  • Lift up the voices of minorities with ME


Update on Congressional Request for NIH Post-Viral ME Research Funding   

Sen. Michael Bennet
Solve ME/CFS Initiative's efforts to secure NIH funding into post-viral research continue!  Earlier several ME health equality champions in the Senate, including our own Sen. Bennet, wrote to Senate leadership asking that they consider $15 million a year for 4 years in upcoming COVID legislation.  Of course, upcoming COVID legislation right now is certainly up in the air, but we do have champions looking out for us to try to get the funding included.

In the House, H.R.7057 has been introduced to ask for this much-needed funding.  H.R.7057, "To amend the Public Health Service Act to authorize and provide for the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the COVID-19 response, and for other purposes."

Stay tuned for advocacy instructions to come out later this month.


ME Symptoms Chart  



ME Education at Rotary 
by Jim Lutey, Colorado ME Action Steering Committee Member

There is always an opportunity to educate people about ME. It could be one-on-conversations with people, social media posts, newspaper articles, or presentations to groups or organizations. I have had the opportunity to do all of these. Most recently, I gave presentations to two Rotary clubs. My wife, Pam, who has ME, helped as well. We are both Rotarians.
 
Pam connected with an older man in NSW Australia who has ME. He had a connection with his local Rotary club in Kurri Kurri NSW in extreme south east Australia. Pam connected with the club President, and we attended their meeting via Zoom on June 9. Now, their meeting is on Tuesdays at 6:30 pm. So, guess what time that is Mountain Time USA? 2:30 AM! We did it, though.
 
The Kurri Kurri Rotary Club is small with about 22 members. They didn't have a program, so it turned into Pam and I telling them about us and our involvement in ME organizations and about ME. They were very interested and asked lots of questions. They did have some business discussion toward the end of the meeting.
 
Our next presentation on ME was via Zoom with our own Rotary club in Berthoud, CO. That meeting was on June 10 at 6:00 pm, and we didn't have to get up early in the morning! There were only about 8 members that attended. It was interesting that after our presentation and questions, one of our newer members said she has had extreme lack of energy for 20 years after giving birth to her child and has many symptoms typical of ME. We offered to help and had a long phone conversation with her the next week. We sent her some information on ME, and it is very possible that she has ME. She was to follow up with her doctor.
 
Rotary is a great organization and Rotary clubs are always looking for good programs. They are a great avenue for educating people about ME and there is usually a doctor or two in Rotary clubs. I plan to try to give more presentations on ME.



Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
  
 
 #MEAction Colorado
 
Disclaimer:  
 
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.