August 2019 Newsletter


Welcome to our first #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

  
Meet the Newsletter Editors

Lara Heisler and Jim Lutey have volunteered to design and edit content for these newsletters.  John Kelty, Colorado State Chair, MEAction Colorado, helps provide content.  Lara edits the content and Jim designs the newsletters.  Here is a bit about Lara and Jim:    

 
Lara was born in the Panama Canal Zone moving to Texas at the age of 12. She has fond memories of Santa Clara beach and Gatun Lake. She landed her first Pediatric Nursing job in Tyler, TX. Lara moved to Colorado in 1998. In 1999 she met the love of her life, Tom (in Alaska). They were married in Morrison in 2002 and have 2 daughters Olivia (13) and Emma (9). Emma has Down syndrome so she and her husband have had to advocate for her at school. Our wish is for her to lead as independent a life as possible. Lara has a love of travel and recently went with her family to Germany to visit with friends!
 
Lara and her family moved to Parker in 2014. She met the Keltys-Julie, John, Xander and Danny at Prairie Unitarian Universalist church. Julie has a funny silly side and is very generous and kind. Julie was diagnosed with M.E. after several years of not knowing what her symptoms meant. Lara is learning more about M.E. She is learning that if Julie expends too much energy on a certain day, she may experience a crash in the coming days that will make her feel sick and be more tired than she usually is. Lara wants to see more awareness of M.E. at the state and federal level and she'd like to see every one with M.E. feel supported by their health insurance, their doctors, and their communities. She thinks it is important to share knowledge in the M.E. community. Lara wants a cure for M.E.  
   
 
Jim was raised in western Nebraska. He met Pam, from Lakewood, when they were students at the University of Wyoming and soon got married. After his graduation, Jim had a 32-year career with the U.S. Fish and Wildlife Service, the final 15 years in Denver. After Jim's retirement, he and Pam moved from Littleton to Johnstown in 2000 and at one point were executive directors of the area chamber of commerce. After retiring from that, they started an online business, Johnstown-Milliken News, which they sold in 2018.

Pam got the flu in November 2016, but then she stayed sick. She was diagnosed with ME/CFS. Jim is mostly retired and has devoted much of his time to doing the housework, shopping, cook meals, and helping Pam. He also keeps busy with Rotary and HOA board. He enjoys fishing and hunting when time permits.

ME Advocacy Day by John Kelty

On April 2nd, over 200 people went to Congress in support of ME Advocacy Day and took part in 140 meetings. I joined Diane Edes (from MEAction Colorado) and Diane Bean (from Solve ME/CFS Initiative's Board of Directors) to represent Colorado in these meetings. One Coloradoan with ME also came to DC and went to training day, but then had a severe crash and had to stay at the hotel so we represented her in spirit.

We met with the offices of all the CO delegation except for Rep. DeGette who couldn't be fit into the scheduling. We asked our Senators to support a resolution of awareness and to talk to the appropriations committee on our behalf in support of the extra $4.5 million Centers for Disease Control (CDC) funding. The fate of that funding is unknown although we appreciated very much that both our Senators' offices did reach out to the committee for us. The resolution, of course, passed unanimously.

At the House, we asked for support of an upcoming resolution of awareness, which MEAction and Solve are still working on building support for. None of our Representatives have supported it yet, but we haven't had a strong push for it yet either. We also asked for them to share a tweet on May 12th in honor of MillionsMissing and happily my Representative,   Rep. Buck, and   Rep. Tipton, both did this. These tweets reached out to 26,000 people in Buck's feed and 24,000 in Tipton's!

So what was it all like? The CO team all had very busy schedules, sometimes sharing meetings and sometimes splitting up. Meetings were about 15 minutes with barely enough time to get from one place to another. We started on the Senate side and had a very brisk march across Capital Hill to the House side. This gave us at least a few minutes to enjoy a perfect Spring day during the heart of Cherry Blossom Season. Most meetings were with us and the health policy expert and many of these we had good contact with before. It was a chance to tell our stories and those of some people with ME back home, educate the staffers on ME, build a deeper relationship for more support in the future, and ask for our requests. Everyone in each office was very friendly and supportive and every office except that of Rep. Lamborn has helped us with at least one of our asks (either before and/or after these meetings).

It was really validating and empowering to be in the beautiful buildings of Congress to tell ME stories of to those in power. (OK, yes in almost all cases, we told it to a staffer but really, the policy experts on the staff hold an enormous amount of power themselves). Growing relationships is very important so that on future issues, the people making the decisions already know about ME and why they should support us.

When we got to Rep. Crow's office, we had the pleasure of meeting with him in person. Fortunately, it was later in the day so I had the routine down well and wasn't too nervous. I think we made the best impact that could be made in 15 minutes and I am hopeful that he will co-sponsor the House resolution of awareness once we push for it. He has been very supportive on our previous requests. On a side note, another member recently met Rep. Neguse in a Colorado town hall and got him to promise to co-sponsor it (which is still pending). Any time with any of the delegation, or their staffers or candidates for office, can have a huge and lasting impact.


Diane Bean, Rep. Jason Crow, Diane Edes, and John Kelty
 
By the end of the day, everyone had given everything they could to the effort. People with ME took advantage of more breaks in the schedule and a quiet recovery room although the experience of our member who couldn't get out of the hotel room and others with similar issues, shows just how unfair and hard it can be to muster the energy to advocate for what is needed, and also shows their ultimate determination to try against all odds and I have the deepest respect for every person with ME who helps to advocate, whether it be in DC or in local offices or from online while on bed rest.

As we continue to work with our delegation in DC and grow relationships between the MEAction CO team and the offices of Congress, we hope that everyone in the community will continue to support us with calls and emails as needed. It makes our efforts to reach out so much more solid when they are backed by a wave of attention to the issue from their constituents. And I can say from personal experience, that the people you talk to, will be friendly and good listeners.

Carol Head, Emily Taylor (both from Solve ME/CFS team),
Katie Wallace (from Neguse's staff), and John Kelty

It was wonderful too, to meet so many ME advocates, to see a gathering of similar blue shirts in the halls of Congress, to hear the famous Dr. Klimas and others speak the day before, and to have the personal growth that came from trying something so different than my day job. I am already excited about the 2020 Advocacy Day. Perhaps I'll see some of you there!
 
What is Chronic Inflammatory Response Syndrome (CIRS)? by John Kelty

Last summer my wife Julie and I discovered a new use for hot tubs as we learned a new aspect of her ME experience. We went to an Air BnB that offered several standard rooms in the style of a small hotel and also a 50s-style trailer in the back of their acreage. Having two high energy boys, this seemed like a good bet for us. No neighbors to worry about annoying and lots of room to run, right outside the door. The plan went wonderfully until Julie had been inside about a minute. Then her skin started to feel like it was attacked by a swarm of insects and she had to get outside where it cleared up immediately. Something in there was obviously making her sick. We had by sheer dumb luck rented a storage trailer and brought camping gear, so she spent the night in the tent and then I secured a room in a standard  room for the next night.                                           Who are the two short unidentified beings with
                                                                                             John and Julie Kelty?

The first thing I read about when we joined the ME community was Julie Rehmeyer's Through the Shadowlands, which gave me some rudimentary idea of how to avoid cross exposure and avoid what we thought was mold exposure.

My wife Julie could not tolerate the touch of anything that had been in there overnight, so all the belongings got stored in the trailer until I could air them out or throw them out. We bought new shirts at the gift shop and since there was a hot tub outside, we all jumped in wearing our street clothes, so we wouldn't contaminate the new room. I even pulled our shoes into the hot tub when no one was looking. My apologies to the next guests!

The rest of the vacation went well and we had a good time although there was a scare when I almost lost the car keys on a sand dune in Great Sand Dunes National Park but that's another story.

Since then, Julie has had reactions to other lodgings, none as bad, but some she couldn't stay in. We've had some expert help since then (Carl Grimes whom I highly recommend) that seems to show it might not be mold, but there is something in some places that she has reactions to.

I've read up on CIRS (Chronic Inflammatory Response Syndrome) which takes as long to say as Myalgic encephalomyelitis but is easier to spell. Survivingmold.com has excellent resources including some lab tests. After walking Julie's doctor through the process-she hadn't heard of any of this-we got insurance to pay for the labs which did show that Julie is affected by CIRS, which can be caused by mold exposure, Lyme Disease, algae blooms like the one at the Lake Tahoe outbreak, bites from black recluse spiders and rattle snakes, and toxins in certain kinds of fish.

It's probably impossible to know how many people with ME also have CIRS and how many people with CIRS also have ME as the symptoms are so overlapping. In fact, you might recall that Jen Brea took a "mold vacation" in the movie Unrest. Like ME, CIRS is far from mainstream science but there are doctors who specialize in it, although not many.

Earlier this month, we made a (kid-free!) visit to the doctor that the Denver Mold/Lyme/CIRS support group most recommended, Dr. McMahon at the   Whole World Health Care in Roswell, New Mexico. He is one of the world leaders in this. The visit is expensive, and we are very lucky to be able to afford it. While it is already hard to see an expert doctor, to find a good one who takes insurance can be impossible for many and this is a real problem that needs to be addressed. Part of the extra $4.5 million in CDC funding mentioned in the other article would go to medical programming and education.

Anyway, we had a 4.5-hour meeting with Dr. McMahon and his nurse and an intern who was being trained. Much of it was in a darkened room with 8 monitors scrolling jibberish in a circle near the top of the room, creating what is supposed to be a very relaxing energy field. Maybe it was psychosomatic but Julie and I both thought we felt calmed by it. And screens scrolling jibberish, seems like such a Rowell thing. The good news is that if this is part of what is going on with Julie, there are medications that over many months can help bring back energy, provided the source of the contagion is fully dealt with, be it mold in the house or Lyme disease or something else.


The monitors in the calming room in Dr. McMahon's office

While there may be shaky science claiming GED is good and discrediting of good science in both ME and CIRS, as they say in Ufology communities, the truth is out there. If you think you are affected by mold or Lyme disease (or even if you just want to rule everything out), you might check out their support group and the labs I mentioned.
 
Chronic Care Collaborative

In 2019, MEAction of Colorado joined the Chronic Care Collaborative (CCC).  The Chronic Care Collaborative is comprised of 35 different voluntary health organizations that represent a wide range of chronic diseases. The CCC is dedicated to improving access to quality, affordable and integrated healthcare. Monthly, they discuss policies important to member organizations and their constituents. Every year the CCC advocates at the State Capitol on Chronic Disease Awareness Day (7/10 to represent the 7 out of 10 individuals in the U.S. with chronic conditions) where they talk with legislators about barriers to access and the burdens of chronic disease on families, budgets, and people's lives. They also connect legislators with their constituents who live with or care for someone with a chronic disease. The CCC also engages with many stakeholders across the healthcare spectrum including insurance companies, hospitals, medical providers, the Colorado Division of Insurance, and Connect for Health Colorado.

(Website: https:// www.chroniccarecollaborative.org) Recent posts are on the website written by people living with chronic illness such as Ovarian Cancer, M.E. and MS, for example.
 

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.