As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity.
Austrian broadcast station @ATV aired a short feature on ME/CFS on November 27th featuring Kevin Thonhofer. Kevin was on the verge of becoming a professional soccer player when he contracted ME. Neurologist Dr. Stingl also commented on the disease during the broadcast. Originally tweeted from @ dg_mecfs
Anita Vandenbeld, Member of Parliament for Ottawa West-Nepean, rose in the House of Commons to talk about ME and fibromyalgia (which she referred to as ME/FM), and called upon parliament to provide funding for research. Send her a note of appreciation for her advocacy. Watch her speak below.
The Osoyoos Times wrote a feature about ME advocate and former university teacher, Hilary Robertson. The in-depth interview covers Robertson’s personal journey with the disease, common symptoms and cultural misconceptions, and larger structural issues in Canada, such as funding limitations and lack of physician awareness.
Advocacy work continues to progress on the state level in Michigan, which is critical to our continued forward momentum. Brian Shuell and Lori Kroger, President & CEO of Pandora Org, met with representatives from the Michigan House of Representatives on Nov. 16 to discuss Michigan State Resolution HRO338, 2018.
The resolution recognizes ME as a serious, debilitating disease and urge key entities to improve patient care, prioritize new research, educate health professionals, and raise awareness about the severity of the disease.
District 47 House Representative, Hank Vaupel, Chairman of the Health Policy Committee for the state of Michigan and District 42 Representative, Lana Theis, both strongly support the resolution. Representative Vaupel’s office received numerous letters of support for HRO338, which is critical to the advocacy work.
Brian Shuell and newly-elected representative, Theis, worked on the resolution together with the hopes of having it presented to the Michigan house for a vote by the end of 2018, and definitely no later than 2019. The team feels certain the resolution will pass! Way to go team Michigan!
#MEAction activist and volunteer, Jes Gordon, partnered with The Founders improv ensemble to host an Improv Variety Show fundraiser on Nov. 30 in Decatur, Georgia. Proceeds benefited #MEAction and Unbarred Theater, an Atlanta-based theater whose mission is to provide space for all people to make good art.
Jes has a passion for community theater and the local art scene and, because of ME, knows the frustration of missing out on the fun. Excellent work, Jes!
NIH Response to 50K Petition
In response to Mary Gelpi’s petition of more than 50,000 signatures calling on the National Institutes of Health (NIH) director, Francis Collins, to increase funding for ME/CFS to 100 million annually, she received this response from Walter J. Koroshetz, M.D., director of the National Institute of Neurological Disorders and Stroke (NINDS). (Or, rather, her friend, Matt Tyler, who sent a letter accompanying the petition, received the response.)
In his response, Koroshetz fails to acknowledge the scale of the health crisis nor commit to increasing funding, but rather points back to the current work and processes that the NIH is doing for ME/CFS, which is far from enough.
Our volunteer writer, Stephanie, describes Koroshetz’s response this way, “Have you ever been to a program where the speaker talked and talked and never said anything? Along the way, they threw in some less than insightful insults. That is what happened when Mary Gelpi, a PwME, took the effort to send a petition signed by 50,000 people requesting an increase in funding to commensurate levels.”
Mary is continuing to collect signatures for the petition. Sign the petition.
A group of relatives and friends of people with ME have written a heartfelt and well-researched open letter to the Norwegian Minister of Health, Bent Høie, urging him to increase research efforts into the disease.
The letter highlights recent scientific advances and the international consensus that ME is a physical illness, not a psychosocial one, and asks the Minister of Health to lend political will to support these developments and offer hope to those who wait for effective treatment.
Volunteer of the Month
Jenny is another stalwart advocate in the ME community who inspires us to dig deeper and reach higher.
She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ME. Most recently, she has been part of the team of #MEAction UK volunteers working to ensure that the National Institute for Health and Care Excellence (NICE) updates its guidelines for ME based on the biological realities of ME based on definitions of the disease in the Canadian Consensus Criteria (CCC) and International Consensus Criteria (ICC).
Get to know Jenny in her own words in our interview with her here. She is a true source of inspiration and wisdom, and we are so grateful to everything that she brings to our global community.
The #MEAction Seniors Connect Facebook Group have published a Bill of Rights for seniors with ME.
This critical piece of work identifies the challenges and needs of seniors in the ongoing battle for recognition, care and relief, especially as you combine ME with the aging process. This bill of rights could apply to all of us in any age group. Most seniors with ME have been ill for a long time, often decades, and they are a valuable source of information and research. They are also a strong group of pioneers who have shown bravery in the face of adversity most every day.
The group also conducted a poll within the Facebook group to survey seniors’ top concerns to create the graph to the right.
Join the #MEAction Seniors Connect Facebook group here.
The leaflet includes ideas for conserving energy such as shopping online to avoid stores, sharing food preparation by encouraging others to bring dishes to share, taking advantage of pre-prepared items at the grocery store, remaining flexible with goals for each day, and taking time to rest and recharge if hosting others unexpectedly.
In another article, Toni Bernhard J.D. writes about utilizing the annual “holiday letter” as a way to share information in her article, “”Not your typical “here’s what I did this year” holiday letter,” published on Psychology Today.
She writes about how this time of the year can be difficult for everyone – not just the chronically ill. She talks about how, while we may need to share information about some of our needs and limitations, we don’t need to discuss them in-depth as that information feels private and doesn’t need to be shared with everyone.
She writes, “This time of year can remind us of all of the things we are not able to do. It helps to be included by inviting us to participate, but even if we can’t make it we still want others to carry on with those activities, and fill us in later. A small acknowledgement of the struggle we are going through is welcome.”
Jennie Spotila writes about the major obstacles that ME/CFS researchers face when applying for grant money, and why the NIH’s response to ME is broken. Check out this important read here. We’ve summarized some of her key points:
ME research in the U.S. receives significantly less funding per patient than similarly debilitating illnesses such as HIV and Multiple Sclerosis. While funding bodies like the National Institutes of Health (NIH) claim to recognize the problem, they frequently place the blame on researchers, saying that they would increase funding if they simply received more high-quality grant applications. But as Jennie explains in detail, standard grant review processes actively discourage applications by ME researchers.
Without clear intent on the part of funding bodies to promote this research through Funding Opportunity Announcements targeting ME, many researchers (and their department heads) choose to spend the months-long grant application process focusing on more widely recognized targets. Additionally, the NIH does not fund crucial, early-stage, hypothesis-generating research, which, ironically, they have essentially admitted is necessary at this stage of study.
Even if an application is accepted for review, panels include reviewers from a variety of backgrounds and competition from a variety of fields, making it difficult to achieve consistent scores throughout the process. Without the promise of a fair review by informed experts using clear criteria, ME-related applications are at a huge disadvantage relative to those addressing other, better-known illnesses, further disincentivizing researchers.
In order to see more “high-quality grant applications,” funding bodies need to demonstrate a commitment to funding this illness and not simply wait for researchers to navigate a system that is not designed to handle the early-stage research so desperately needed in this field.
A HUGE Thank YOU
As always, the community has been incredibly supportive of #MEAction’s work to advocate for people with ME. On Giving Tuesday, our community raised $60,000 for #MEAction, which includes our matching grant, thanks to your generosity and support.
In November, many of you set up birthday fundraisers and raised a total of $3,562! Celebrating your own special occasion? Set up your own Facebook fundraiser for #MEAction here.
Support our Work! Please help us reach our $100,000 end of year goal by donating and sharing our End of Year Fundraiser!Support Our End-of-Year Fundraiser