June 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 
 

COVID-19 Survivors and Post-Viral ME
by Alison Sbrana

Dr. Nath, NIH
See information about Dr. Nath HERE

I am helping moderate a support group for COVID-19 survivors, and every day I read stories of healthy people who got a mild case of COVID-19 and now describe symptoms "exactly like mine."  We have almost 4,000 people in this support group and it keeps growing every day.
 
I have been distraught over it, even though I anticipated this happening from the beginning of COVID-19, because I am hyperaware of the possibility of developing ME/CFS after a viral infection.  I am so sad that people could lose so much, as I did to ME/CFS, from a virus whose spread could've been more contained.
 
I have spent a lot of time in the course of my own illness wondering if my disability could have been prevented, and even discussed with the researchers at NIH.  The answer for me is unclear.  But in the case of these COVID cases, I am heartbroken because in the course of their illness in the future, will they always have a doubt in their mind -- if we had shut down sooner, if I had stayed home from work a week early, not gone to the grocery store that day -- would I not be disabled now?
 
Dr. Nath, the main doctor in charge of the ME/CFS study I participated in at National Institutes of Health (NIH) is quoted here, and it looks like my research team will be studying post-COVID patients now.  I have hope in them that they will "believe" these patients' symptoms, and not dismiss them as anxiety, which I hear is happening ALL the time to these patients.  I am not surprised; it happened to me, too. It happens so much, in fact, that my research team collected information on it as part of their research on ME/CFS.  I told them about my experiences, like the time I was told to go ride a bike and maybe I would feel better because maybe this was just depression, from a high level specialist at a teaching hospital.  I have hope that the research team I was with at NIH -- whom I spent cumulatively an entire month inpatient with -- that they will be able to make progress in the research.  That it could one day in the future lead to treatment.
 
But, these things take TIME.  And I fear that so many people who were previously healthy, just like I was before mono, will now face an uncertain future with ME/CFS.  They don't have time to wait for a treatment.
 
I am scared for them. I try not to show it when I talk with them; I encourage them to rest as much as possible in the beginning and not to overdo it, I give gentle nudges where I can.  But the truth behind my screen is that I am terrified for them.
 
Editor's Note:
The support group that Alison moderates did a survey of COVID-19 recovery rates and lingering symptoms of their members.  It is very eye opening.  See it HERE.


Sen. Bennet Signs Letter Asking for $60 Million in Post-Viral ME Research
by John Kelty

Sen. Bennet
(Photo courtesy of bennet.senate.gov)
Senator Bennet joined 12 other senators in signing a letter to Senate leadership asking that future COVID legislation include $15 million a year for 4 years, for the NIH to spend on ME research.  The letter cites data that shows that if COVID-19 behaves like the SARS pandemic, then between 175,000 and 1,500,000 Americans may get ME as a result of COVID-19.  The letter also asks for an initiative to "reach consensus on ME/CFS case definitions" and "mechanisms to incentivize researchers to enter the field" of ME research.
 
I want to thank everyone who took part in Solve ME's Day of Advocacy in April for helping call Senator Bennet's attention to post-viral ME.  Some of us were on a call with his senior health advisor, and many of us followed up on social media, to ensure that his attention is drawn to the matter.  You all played a key part in getting Senator Bennet's signature on the letter.
 
We did apply equal attention to Senator Gardner.  As is almost always the case, he did not take a stand on this matter or sign the letter, as is his pattern to not support any single-disease causes.
 
Sen. Bennet has become a reliable champion of ME Health Equality after several years of advocacy efforts.  Please encourage this to continue by sending thanks to him on Facebook and on Instagram or Twitter @SenatorBennet, and helping us in future advocacy efforts.


Remembering the Rocky Mountain CFS/ME & FM Association
by John Kelty

I'd like to take a quick moment to acknowledge our predecessors in Colorado ME advocacy and support, the erstwhile Rocky Mountain CFS/ME & FM Association, which fought for ME Health equality and provided support for a remarkable 28 years before folding in 2013.  I truly admire their efforts and the work that went into such a thriving community for so long, especially in the days before online Internet advocacy and organizing became mainstream and so readily available to everyone.  They held in-person events and fundraisers with medical experts and speakers.  I send thanks to everyone who had some part in RMCFA!
 
When we found my wife Julie has ME, there wasn't yet an MEAction group for Colorado and so I was very excited to have found RMCFA, until realizing it was dormant... probably some of you had the same experience.
 
While their website and foundation isn't in a form that we could take it over and continue it, we do have a list of some of their key supporters.  Do we have any volunteers who might want to help do outreach to them (in what I hope would be seen as a respectful and not intrusive manner), to see if any are interested in continued ME activism?  It has been a long time for sure, but you never know. If so, please reach out to me ( john.kelty@meaction.net) for details.



DIY Face Masks  
 
Here is a great way to make your own face masks from cloth, a T-shirt, a bandana, and denim from
      
 


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.