September 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 
 


Story of a Member of MEAction Colorado   

Editor's note:  This story by an MEAction Colorado member, Rachel K., was written in August, some updates after the story are included below.

I am a nurse (I also happen to have a background as a professional writer), who for no reason given, is being forced out of my apartment via a non-renewal of a month-to-month lease.  While this may sound hard to believe, it's unfortunately true.  If there was anyone wishing it were not true, that person would definitely be me.  My circumstances are complicated by my having myalgic encephelomyelitis and other complicating conditions.  It is much more than a simple non-renewal of the lease.  I have always paid my rent for the past six years at this place and have done nothing to precipitate this action.  If I am not out of the apartment by the end of August, I will be evicted.  I have a chronic illness that keeps me from being able to earn regular income, and I'm in the middle of filing for disability benefits; consequently, my finances are dismal.  These apartment managers are well aware of this.

I have only asked for one more month in the apartment so I can find a place to live, move my stuff and complete the hundreds of additional things involved in moving.  

About 30-40% of the time, my ME forces me to be in bed.  The rest of the time, I experience mostly physical limitations in terms of my ability to complete every day tasks, let alone the physical and emotional wherewithal to tackle a move.  

To complicate things even further, my apartment is filled with stuff because when I'm able, I sell items on eBay.  Plus, I'm having an incredibly difficult time finding enough people to help me move because of the pandemic.  They are simply afraid to lend a hand in this difficult environment.

Due to unexpectedly being forced to move so quickly, there is no way I am able to get out of this place in 11 days; therefore, I am facing the frightening reality of having to find a short term transitional housing situation and leave much of my stuff behind.  Because my illness causes me to be immuno-compromised it would be difficult to survive such an event.  This is certainly no exaggeration.

I still can't believe I'm in this predicament!  It feels like I'm living in some sort of surreal nightmare.  A couple of years ago, I never would've thought something like this could happen to me.  

My healthcare providers, social worker, as well as my disability attorney, friends and others, will advocate for me regarding the aforementioned.  In fact, they're in the process of writing a letter on my behalf to the property managers explaining my illness, precarious financial situation and requesting I be given one more month in this apartment.

I have a written letter from my healthcare provider stating the seriousness of my illness.  I provided this letter to these property managers, explaining in detail my situation, but they still refused to simply give me one more month so I can find a place to live and not wind up living somewhere far from ideal.

How ironic it is:  a nurse being kicked out of her apartment and having no place to go during a pandemic!  My provider has told me that due to my illness, if I am infected with COVID-19, I will likely wind up extremely ill, possibly even a ventilated patient in the ICU.

Editor's note:  The pressure on housing management worked as the lease was renewed for one more month.  The person has a safe if not ideal place to go at the end of the month and will have the time to move all her items and work for a smoother transition without pushing herself and crashing so much.  The recent moratorium on evictions may be of help in case something comes up at the last minute or if Rachel is too sick to move at that time.  The rent would be due at the end of the moratorium.  Rachel put forth an extreme amount of energy preparing in August while fighting her case for an extra month.  While she won the extra month, it came at a cost of several ME crashes and was so unnecessary if the management had been more thoughtful and supportive of people with severe chronic conditions like ME.  If you find yourself in a similar situation, Rachel would like to help by writing letters asking their providers to advocate for them.  You can contact me (john.kelty@meaction.net) to be put in touch with her.

 
Summary of Recent News Articles on ME  
by John Kelty, Chair, MEAction Colorado

Here is a partial list of recent press on ME.  These articles all take ME seriously and although I haven't read them all word for word, I believe they do not try to make claims of it being psychological, or just in your heads, or to recommend the harmful and discredited CBT (Cognitive Behavior Therapy) or GET (Graded Exercise Therapy).  Many have had input from disease advocates in MEAction and Solve.



From TheBMJ.com. "The links to ME/CFS for MY condition are clear, and everybody sort of steps around this."




Chronic fatigue syndrome, a possible long-term effect of COVID-19, experts say.  Click HERE.

Researchers warn COVID-19 could cause debilitating long-term illness in some patients.  Click HERE.

Are Long-Term Coronavirus Complications Considered Disabilities Under The ADA?"  This includes a mention of HR 7057, the house legislation for $60 million in research funding.  Click HERE.

How COVID-19 Could Reveal the Secrets of Chronic Fatigue Syndrome.  Click HERE.

Brain Deficits, Nerve Pain Can Torment COVID Patients for Months.  Click HERE.

Research Examines Links Between 'Long COVID' and ME/CFS.  Click HERE.

Chronic fatigue syndrome may linger after COVID-19 recovery, medical experts say.  Click HERE.

Discussions of Dr. Fauci's comments on ME.  Click HERE.



Brian Vastag and #MEAction Board Co-chair Beth Mazur, authors of the op-ed for the Washington Post.



 
Congressional Report of ME Support  
by John Kelty, Chair, MEAction Colorado
 
Neither MEAction of Colorado nor MEAction endorse specific candidates or parties, but I would like you to be aware of what support we have and haven't had from your members of Congress so that you can be educated on ME health equality issues.  I do encourage you to please VOTE no matter what!  If you need help registering to vote or actually voting, please reach out to me (john.kelty@meaction.net) or the FB group and we'll help put you in touch with people who can help you through the process.

You might consider sending this information to your member of Congress to thank them for what they have done and encourage them to support us on future requests or if needed, tell them they need to start supporting us.  All the "Y" marks are a great sign of what we've accomplished.  If you've help
Rep. Ed Perlmutter 
ed with advocacy in big or small ways, please give yourself a pat on the back!  

We haven't had a chance to have ME discussions with any candidates for national office except those that are incumbents.  As far as I know there's only been a few discussions with state office holders and state candidates, so I included what I had for those and if you know of others, I'd love to hear from you.
 

 
 
  
 


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.