Check out our second edition at https://conta.cc/2UAXXo2
Thanks to long-time activist Jim Lutey and new volunteer Lara Heisler (a healthy ally, yay!!) for making the #MEAction CO e-newsletter happen. Check out our first issue: https://conta.cc/2SZqK51
We’ve already got some great ideas for stories for upcoming issues, so be sure to stay tuned and send an email to email@example.com if you want to subscribe to it.
Bertus Geertsema is riding the 4233 mile Transamerica Bicycle Trail from Astoria, OR to Yorktown,VA to raise awareness and research funding for ME/cfs (Myalgic Encephalomyelitis/chronic fatigue syndrome). He will be crossing into Colorado in a day or two. The route follows mostly rural two-lane highways. So far, he has ridden through Oregon, Idaho, Montana and Wyoming posting spectacular photos of his trip on his Instagram account @MultiVenturist.
“The TransAmerica Bicycle Trail was the first bicycle touring route to cross the U.S. It was developed and mapped by Adventure Cycling Association, and travels between Astoria, Oregon, and Yorktown, Virginia, along mostly rural, two-lane highways. The TransAmerica Bicycle Trail began as the route for Bikecentennial, a mass bicycle tour across the country to celebrate the U.S. Bicentennial in 1976. The route was developed and mapped in the years preceding the event by volunteers and staff members of the organization Bikecentennial, which changed its name to Adventure Cycling Association in 1993. Over 4,100 cyclists rode at least part of the route during Bikecentennial, with 2,000 riding the entirety of the TransAmerica Bicycle Trail.”
Bertus was inspired to take on this challenge by family members that suffer from this disease. He has set up a page to raise funds via the Open Medicine Foundation for ME/CFS research. https://my.crowdchange.co/y2g5ip
“Because I can get up every day, because I have the energy to get on my bike and ride and experience sunrises and sunsets and hills and valleys. And all along the way, when the burn in my legs and the pain in my knees will want to make me slow down or stop, I will be thinking of those who don’t share this basic human ability that the rest of us enjoy so freely. Please think about that next time you’re doing something fun, going for a run or a hike, playing with your kids, or even just getting up and going to work. There is someone else laying in bed, just hoping to understand their condition better so that they can regain the life we all take for granted.”
Follow his progress on Instagram: @multiventurist or his website MultiVenturist.com.
Learn more about the Transamerica Trail at AdventureCycling.org.
Remarks at the Denver Millions Missing Event for ME, May 11, 2019
By Lila Rosenthal, MD
Thank you for the warm welcome and kind introduction. It’s an honor to be here with you today to raise our voices to raise awareness about ME. It was difficult for me to figure out what I could say to you long-suffering patients and caregivers, who have been marginalized and at times dismissed by my colleagues. If I’m honest, if you would have seen me before I became “educated”, I might have treated you without the respect and validation you deserve. Today I want to tell you, from the bottom of my heart, that I am sorry on behalf of myself and my peers.
Most of what I know about ME I have learned from my patients. And so in light of today’s theme, Finding your Allies, I want to say some words about how you can best educate your practitioners to be able to get the best possible care while we wait for new data and new treatments to emerge.
Find your Allies: Try not to see busy, harried, uninformed doctors as the enemy.
I know many, maybe even most, of you have been mistreated at best and possibly verbally or psychologically harmed by doctors at worst. I make no apologies for this. But I beg you to have compassion for us. We are a deeply wounded group. Especially doctors who work within the confines of the insurance model of health care. We are generally trying to function in a totally dysfunctional system run by business people with a poor appreciation for the complexity of human health and disease. The system is driven by profit which is predicated on volume- high volume. I have seen more than a few physicians in recent years with ME. Doctors are patients, too.
Providing care to patients with chronic, complex, multi-organ system disease that doesn’t fit neatly into the well-studies conditions like diabetes, heart disease, kidney disease, etc, is daunting. It needs time. We need to be able to hear you, really hear all of your symptoms, really appreciate the time course of how your disease process unfolded, hear about what your life was like BEFORE you became ill, to grasp the entirety of how you suffer.
This cannot be done in a 15 minute visit, or even a 20-25 minutes visit. 30 minutes is the minimum appointment time you should have, and you really need to be seen monthly. I encourage you to request extended visit lengths. Keep prescriptions requests and questions to a minimum between appointments or you will overwhelm your provider. Bring lists of your current meds, including over the counter meds, to each appointments.
Find your Allies: Find doctors who are knowledgeable about ME.
It goes without saying that our medical education has given little if any attention to this poorly understood disease. Again, I ask your forgiveness. I can only promise to do my part to raise awareness and work for inclusion of this diagnosis in medical school and residency curriculum, in CME courses for primary and specialty care and to otherwise raise the bar for your disease in all spheres of medical education.
The only way I was able to receive the information that was provided to me by my patients was because I was working in a private practice where I could control my patients volume and spend more time with patients. I took insurance, including Medicaid, and I saw many, many complex patients with ME. But I couldn’t sustain it and had to close my doors two months ago due to the high stress and rising overhead without a compensatory rise in reimbursement from insurers, which is why I suggest that finding your ally may very well mean finding a practitioner who describes themselves as “functional” or “integrative” to get the best possible care. And as you know, these folks are often in direct-pay models, meaning they will not bill your insurance. But putting scare resources towards this may be a money saver in the long-run.
I know this is hard to hear, but many patients and advocates who have had better outcomes have had such providers who really could give the TIME to understand ME, to explore the literature, and follow through when patients provide articles or helpful links.
Find Your Allies. Tell your providers about ‘Unrest’
When a patient told me about the documentary Unrest last fall, I had time and emotional bandwidth to watch it. I got CME credits for doing so, and ultimately this led me to be able to attend a conference at NIH in Bethesda a few months ago on accelerating research in ME/CFS. So tell your providers about the movie, tell them they can get CME credits for watching it and if they can’t devote the time to a feature-film, there is a 28 minute video produced by Medscape called “Diagnosing ME/CFS: The Experts Weigh In” that was recently updated and edited by Dr. Lucinda Bateman to offer the most up to date primer for busy providers.
I watched it on Thursday in preparing for this talk and I felt like it provided high yield information in a relatively short amount of time.
Find your Allies. See a Sleep Medicine Neurologist.
If you have not been seen by a sleep medicine physician, I strongly urge you to do so. Make sure they are a board-certified neurologist with fellowship training in sleep medicine. Many patients erroneously think that all they can do is rule out sleep apnea but this is not so. You DO need to be ruled out for this, but these doctors can understand terms like hypersomnia and really understand the dysautonomia piece of your disease.
And this word, dysuautonomia, is key. There is fundamental pathology of the autonomic nervous system (ANS) in ME that is a nascent area of research getting increased attention. Most general neurologists lack expertise in the specific subfield of ANS-related disease, so this is a critical person that you need on your healthcare team.
Find your Allies. Visit Bateman Horne Center
Raise your hand if you have heard of the Bateman Horne Center for Excellence in Utah? Dr. Lucinda Bateman is widely regarded as one of the top researchers on ME in the country and probably the world and I have had a patient get seen in her clinic. If you aren’t getting answers, aren’t getting better, and feel that you have exhausted resources and professionals, consider getting on the wait list ASAP to be seen.
Have radical hope. There is a growing understanding of and appreciation for ME building each and every day.
An ally can be an emotional support pet, clergy, family. Find what gives you joy. Music. Laughter. Vibration/energy work. Fresh air. Above all, have radical hope. Figure out how to keep alive the positive feelings that you have when you leave here today…that feeling of being understood, of validation, because I do believe there is a growing understanding of and appreciation for ME building each and every day. I pledge to do my part and although my work in student health limits me to seeing only patients enrolled in the university, I will be your ally by helping raise awareness among my peers in my local sphere and beyond.
Thank you for listening and for showing up today to raise awareness. You are an inspiration.
Colorado activist Jim Lutey has introduced a Rotary Club resolution to encourage research, education and funding for ME! ME-CFS RESOLUTION Proposed by Dist. 5440 3-13-2019-4
The resolution’s purpose is to “leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness on the need to educate the public and medical practitioners on the importance of treating and ultimately finding a cure for those suffering from ME/CFS.”
Jim (in the MillionsMissing shirt) proposed it at his and Pam Lutey’s local chapter and then took it to District 5440 which includes all of Wyoming, north central Colorado, and a bit of Nebraska and Idaho. The resolution passed within District 5440 unanimously with the 55 member chapters.
Now, the District will submit the Resolution to the Rotary International Council on Resolutions and there should be a final outcome in November.
This has already been a long process and we give our heart-felt thanks to Jim and Pam Lutey for their long hours and leadership on this.
It was a very Colorado day with warm sunshine, then dark clouds threatening rain and then changing their minds, followed by sudden gusts of wind blowing our handout brochures around and knocking over the display boards. But it all worked out fine.
The shoes on the stairs, the ‘Ally Team Photos’ and MillionsMissing shoe story signs drew a lot of attention from passersby on Lincoln Ave. We had interesting conversations and shared some ME flyers with Capitol visitors.
Eric Moon and the Prairie Band from Parker started off the event with a musical set including Rob Thomas’ emotional ballad, ‘Her Diamonds’ bringing tears to some.
John debuted Facebook live for the first portion of the event. We were excited to have an international following.
We heard moving stories from several members about the challenges of living with ME. Jillene Moore told her own story. Alida Gowan read stories for Kris Paige of Livermore, CO and Wilhelmina Jenkins story about being a black woman seeking care for ME.
Our guest speakers included: Dr. Lila Rosenthal, Dr. Theodore Henderson, Wayne Connell and Jordana Griff Gingrass.
Dr. Lila Rosenthal spoke meaningfully about learning about the disease from her patients. She provided advice about how to work effectively with your doctor for mutual benefit.
Dr. Theodore Henderson is a psychiatrist who also treats Biological illnesses that present with psychiatric symptoms, including ME/cfs. He is also founder of the Neuro-Laser Foundation. He spoke about the effects of viruses on the brain and about treating infection triggered ME.
Wayne Connell, the Founder and President of the Invisible Disabilities Association (IDA), updated us on progress with the National Disability ID Initiative. The primary purpose of this designator is to alert law enforcement to a person’s non-apparent disability during a traffic stop, or other routine contact.
Jordana Griff Gingrass is an attorney in Denver. After her long-time best friend became ill with ME, Jordana organized successful fundraisers to benefit Open Medicine Foundation, an organization which funds ME research.
Xander Kelty performed two lovely pieces on the viola.
Several posters displayed information about ME, stories from more of our members, and showed the MEAction Colorado activities of the past year .
Thank you to all who participated. And our thoughts went out to all our members who were unable to come. You were represented on shoe tags and stories on the story boards, and in our hearts.
More photos at this link.
WHEN – Saturday May 11, 1:00 to 4:00 pm
WHERE – Colorado State Capitol, 200 E. Colfax Ave, Denver
WHY – We are part of a global campaign (At least 93 events will be held during this week in USA, Canada, Mexico, Europe, UK, Australia, Japan and South Africa) for health equality for Myalgic Encephalomyelitis. These events bring attention to the need for huge increases in investment in medical research and medical training to treat ME. Continue reading
Again this year, the Governor’s office has graciously agreed to allow us to use their parking spaces in the circle around the Capitol building.
If you have ME (or are otherwise disabled) and are planning to attend #MillionsMissing on May 11th in Denver, we have arranged for handicapped parking in the circle in front of the Capitol building. You won’t have to walk far or have your wheelchair pushed from a parking lot. Continue reading
#MillionsMissing is a global day of action for health equality for people with Myalgic Encephalomyelitis (sometimes called chronic fatigue syndrome, ME or ME/cfs).
We bring attention to the Millions across the globe who are Missing from their careers, their hobbies, their social networks and their former lives due to this extremely debilitating disease.
Last year was MEAction’s largest global protest ever with 100 cities around the world demonstrating, and even more participating virtually. This year will be even larger as #MillionsMissing events will take place around the world over the course of an entire week from Sunday, May 5 to Sunday, May 12.
In Denver our event is on Saturday May 11th.
- Guest Speakers
- Live Music
- Personal Stories from our Members
- A Call to Action
- Meet others in the ME community
- Share stories and advice with other Caregivers and Allies
- Let Colorado know that ME exists in all our neighborhoods
- Learn to make your voice heard in Congress to support #pwME
Please consider making a donation to support us in our advocacy work for Colorado’s thousands of people with ME.
We hope to see you there!