November 2021 Newsletter
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Greetings!
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,
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The Chronic Illness Survey Adventure
by Julia Miele, Executive Director, #MEAction
The Chronic Illness Survey Adventure Will Launch
Chapter 2!
During #MillionsMissing, #MEAction launched The Chronic Illness Survey Adventure - a massive survey aimed at providing clinicians and researchers with key data that could educate and generate better care for and quicker diagnoses of ME and other similar chronic diseases. Our hope is that the survey will identify aspects of the disease that are well understood by patients, but not as well understood by the clinicians who see them and the researchers who want to learn more. Over 1,200 people with ME have signed up to take the survey so far, with new sections opening each month as this exciting year-long research effort unfolds. Chapter 2 will launch in the next week!
To make signing up easy, we wanted to share a few answers to frequently asked questions:
· Who can take the survey? You can take the survey if you are 18 or older AND you have a diagnosis from your medical provider of ME or ME/CFS, POTS, hEDS and/or MCAS OR you have a suspected diagnosis of Long COVID OR you are generally healthy, with no chronic diseases or conditions. People from any country can take the survey!
· Can clinicians verify diagnoses for the survey? Yes, they can! We urge patients to reach out to their clinicians for this purpose. When you take the first section of the survey, you’ll receive an email that will include sample text to your medical provider to invite them to join in the fight for better characterization of chronic complex disease, along with a personalized link to validate your diagnosis/diagnoses. You can send them a link to the Clinician’s Landing Page so that they can register for login credentials even before you finish the first section of the survey.
· How long does the survey take? Can I take breaks? The survey questions are broken up into six sections. Sections will be released a month apart, and the survey will stay open for a year in total. Each section should take 15-20 minutes. If you need to stop in the middle of a section, you can keep the tab with the survey open and return to it later. If you close the window/tab, your answers in a half-completed section may not be saved.
· What accommodations are available? Our goal is to get the broadest possible spread of responders. Here are some ways in which we make the survey as accessible as possible: You may enlist the help of a close friend or family member to read the survey aloud to you and record your answers. You may ask for a printed copy of the survey sections when they become available if screen time is challenging. Remember that you do not have to take the whole survey in one sitting: keep your tab open and return when you are ready.
· Why do patient-reported symptoms matter? Why does patient-centered research matter? Patient and public involvement is a very important part of research projects that aim to engage with and inquire deeply into the patient experience. To better understand the disease presentation and course, it is important to directly engage with patients. Over the course of our investigations, we encountered several symptoms common in ME/CFS and other chronic complex diseases that were not part of any existing set of diagnostic criteria. Patient-centered data in rare and rarely diagnosed diseases is different from that gathered by researchers or clinicians only. A recent paper co-authored by our partners in the Human Phenotype Ontology (HPO) Project demonstrates that patient-reported versus clinician-reported symptoms differ significantly in long COVID, for example — and that patient-reported data is richer, more detailed, and more complete. This supports a wealth of evidence for the value of patient participation in research at every stage.
If you’re ready to sign up, or know someone who may be eligible, just click HERE! If you have already taken Section 1, you will receive an email with your personalized survey link for Section 2 in your inbox early next week.
Remember, you can fill in the questions at your own pace: so long as you hit the forward button, your answers up to that point are always saved. If you ever get kicked out of the survey, please reach out to us SC4D@meaction.net for a retake link. You won’t lose your old answers if you do!
We hope you join #MEAction on this adventure!
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Advocates met with staff of Rep. Crow
by John Kelty, Chairman, #MEAction Colorado
Earlier this month, advocates met with Daniel Tsang, a senior staff member specializing in health policy for Representative Crow. Two advocates in the district joined to tell their stories--one spoke of a friend's ME and another spoke of a relative's Long COVID experiences. They were joined by seasoned advocate Tom Stroble of our steering committee to talk about H.R. 2794, the COVID-19 Longhauler's Act, and H.R. 4292, the COVID-19 and Pandemic Response Centers of Excellence Act to ask the Representative to co-sponsor these acts. So far Rep. Crow has not done this--he has helped us in the past though.
After this meeting, we've had meetings with staff of all Colorado members of Congress this year, except for Rep. Perlmutter.... we're still looking for someone in his district to tell an ME story in such a meeting. The people who met with Daniel were both new advocates so no experience is needed to have success and if you know of a person in Perlmutter's district or are one yourself... well, just let me (john.kelty@meaction.net) know and we'll work to arrange a meeting so you too can be heard by the policy experts and we'll be there every step of the way including at the meeting, to make it all easy.
Even if we don't get this specific request fulfilled by Rep. Crow, these meetings make it far more likely that our members of Congress will vote in favor of ME and Long COVID legislation in the future, and we'll keep chipping away at all our members of Congress for support as long as it takes.
If you have the time and health for it, we sure could use you to help push for the legislation. No matter where you live in the state, you can find easy instructions on our blog.
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Upcoming Calendar of Events in Colorado |
If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at john.kelty@meaction.net.
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Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO. Follow us on
Twitter and Instagram @MeactionCO
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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.
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