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Welcome to our fourth #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 current petition MEAction has towards Dr. Walter Koroshetz at the NIH is the first step in a long and very critical campaign. Here's a quick primer on it. After the 2018 MillionsMissing, MEAction sent a book with our requests and over 7,000 signatures (
https://www.facebook.com/MEActNet/videos/2105748593040869/) and photos from around the world including one from Denver of Lee-Anne Du Plooy's daughter Erin, to Dr. Francis Collins, director of the NIH. MEAction leaders met with Dr. Collins but nothing really changed. NIH took over a year to come up with a recent plan for addressing ME, but when the plan is dissected, it's just a more formal way of stating that the NIH will not be doing anything more or different to address ME health equality.
So now we must be stronger and braver in our approach with the NIH as everything we did around 2018 MillionsMissing made no difference. Ben HsuBorger, MEAction's Global Community & Campaigns Directory, explained in a Facebook live event, that we need to "Force NIH in a way we haven't before... now is the time" and that we need to be "loud and brash" and have healthy allies with us. As always, we strongly encourage people with ME to respect their health and not push beyond their energy limitations in this or other campaigns. I echo Ben's request that people be willing to step out of their comfort zones (except ME health related comfort zones) and do more for the ongoing NIH campaign and help in ways they would normally not help, so that we can effect change.
The online petition is directed to the person who controls the purse strings for more ME funding and who is Dr. Collins's right-hand staff, Dr. Koroshetz. We are asking for dedicated ME funding, help reaching consensus on patient selection and criteria, funding identification and validation of biomarkers, clinical network and treatment trials and for a plan to address disease stigma and lack of medical awareness. If you can get behind those ideas, please do so in as big a way as your health allows, especially if you are a healthy ally.
To get us started, I collected 22 signatures at my church on Sunday, including several people who are now new subscribers to MEAction mailings. Who has an allied group that can top that number?
by John Kelty, #MEAction, Colorado State Chair
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A Member's Life with Ehlers-Danlos Syndrome and ME
by Niki Naeve (member of our Colorado ME Group)
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picture credit to Emory Collinson
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picture credit to Emory Collinson
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picture credit to Colin D. Young
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When I was first diagnosed with chronic fatigue syndrome in the early 90s, I had a feeling I had not dug down to the root of diagnoses yet. I was a young singer at a competitive conservatory, and wanted nothing more than for my symptoms to go away so I could carry on with the career I wanted and was willing to work my keester off for.
I believe time has borne this truth out. The term, "Chronic Fatigue Syndrome" describes a symptom which can be expressed by any number of different processes in the body. Over the following years I would collect dozens of diagnoses; a bladder disease, (Interstitial Cystitis) a heart issue, digestive, orthopedic and vascular issues, multiple autoimmune diseases... I carried on for another twenty-five years, just doing the best I could.
"Some people with CFS likely have EDS that has not been identified."
Surprisingly, a few years ago, unrelenting pelvic pain led me to a new diagnosis which seemed possibly to explain them all - Ehlers-Danlos syndrome, or EDS. It's believed most cases of "Pelvic Congestion Syndrome" or PCS, (basically varicose veins in the pelvis,) which are not caused by multiple childbirths, are usually associated with some sort of connective tissue disease, such as EDS, which weakens the vascular tissue.
I grew up showing off my easy splits and what my mom called "double jointedness" in and out of dance class. But could I be a "Zebra," having a rare disease? As I lacked the hyper-extendible knees and elbows, I had my doubts. But the ladies on the pelvic congestion syndrome Facebook group were persistent. So finally, I saw an EDS knowledgeable geneticist and was diagnosed with the Hypermobility type of EDS, - hEDS.
On line with other people with EDS, I was blown away by how like me they were. They all had wacky, seemingly unrelated things going on with their bodies. Yet how they manifested could be quite variable. No wonder it has taken most of us years to connect the dots. It seems to me that faulty collagen is like shoddy materials used in constructing a building - it will fall down eventually, but exactly where, when and how will vary.
The current hEDS criteria
are HERE
. Keep in mind, even if you don't strictly fit these guidelines, you may be still impacted by a connective tissue disorder - perhaps GJHD, Marfans Syndrome, another form of EDS, or even something which remains without a name - it may just not meet the strict criteria newly implemented specifically for hEDS. The science is still evolving, and only you know what your symptoms are and how they impact you day-to-day.
"When you can't connect the issues, think connective tissue."
Turns out your seasonal allergies could even be related. Last year I went to an EDS symposium in New York and saw a lecture by Dr. Anne Maitland, which vastly changed my perception of what's in the EDS mix. Dr. Maitland is fond of saying, "If you can't connect the issues, think connective tissues."
The gist I got from her presentation is this: In certain susceptible individuals, mast cell over-activation (MCAS) disrupts the collagen, which disrupts the connective tissue, which is found throughout the body. So this can affect every system in the body, including vascular - and poor vascular return can be a cause of fatigue.
Thus EDS, MCAS and POTS (Postural Orthostatic Tachycardia Syndrome) and potentially all sorts of other things, like inflammatory autoimmune diseases, seem to be linked, and indeed some research seems to be bearing out some common genetic markers. Knowing all of these conditions are related may make an important connection. Each acronym has several dedicated sites - as your energy permits, I invite you to research if you feel this looks like you.
Recently I have found an MCA
S/EDS literate doctor, and an EDS-knowledgeable physical therapist. Now I'm making what I feel is the first real progress in treating my Chronic Fatigue and pain since high school.
Proper diagnosis is not always a straight line. But I'm not sure I would trade my zig-zag path with another. The riches I've reaped in the way of learning patience, compassion and radical self-compassion are things not easily traded.
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IDA Gala
Jen Brea's acceptance speech at the Invisible Disabilities Gala was a great chance to educate hundreds of disability activists about ME. She was awarded the inaugural Media Impact award for the Unrest documentary and campaign. She spoke via recorded remarks about how people with ME not only have an invisible disability and "look normal" but also how they are invisible in the #MillionsMissing sense of the word.
She also spoke at length about the need for allies, that a patient population as sick as MEAction is, will never make change on our own. See her video remarks
HERE.
Jen thanked IDA for their work and their ongoing partnership with us and gave a nice shout out to the 5 of us who were at the MEAction table at the Gala.
The Invisible Disabilities Association is a great example of the mutual benefits of an allied partnership. They were our first allies, and now have helped elevate ME awareness in Colorado by inviting Jen and showing the trailer to Unrest. Additionally, by supporting them we are helping their important national campaigns, like the National Disability ID (
NDID) Program and the Cleaner Indoor Air movement.
The goal of the
NDID program is to pursue "legislation in every state that would allow for voluntary disclosure on government IDs for anyone with any disability, illness or chronic pain. No personal information is stored on the ID to protect the privacy of the individual and their specific disability. The symbol provides recognition of a disability and the need for possible accommodations." Alaska has passed such a law.
As we are also in Colorado's Chronic Care Collaborative (
CCC), which works to pass relevant health legislation at the state capitol, we've been discussing with IDA about being more involved in their NDID Program if they introduce legislation in Colorado. They tried last session and it failed to get out of committee. If the CCC puts their backing behind it or several member organizations sign on in support of the NDID, it will have more weight. This will in turn strengthen our partnership both with IDA and CCC and we can look forward to more great things to come from our partners.
You can never tell what may come from a simple outreach, like an invitation to speak at our first MillionsMissing, so I encourage everyone to be on the lookout for how we can join more allied groups in Colorado. Send ideas to me at
[email protected]!
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Speakers and video presentation of Unrest trailer.
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| Here is Annette Maxwell, Julie Kelty, John Kelty, LeeAnn Fremont and Holly Heiman. (The event was themed as a masquerade, thus the mask). |
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ME International - A New Venture
The purpose of ME ( Myalgic Encephalomyelitis ) International is to unite all current ME organizations under one umbrella. This would include organizations, people affected by ME, advocates, volunteers and staff, medical professionals and family and friends to achieve our common mission.
We know there are many opinions on what ME is and what may be causing it. We respect those opinions. We also know at the current time there is no cure. We also know there are many different criteria opinions. We highly suggest that everyone who has ME or is involved with someone that has ME to read all the opinions and then decide what your opinion is. Check out our website HERE that has various articles about ME.
United We Stand...Divided We Fall
Check out our website
HERE that has various articles about ME.
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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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