In the first #MillionsMissing protest in New York City – they chanted “History will recall HHS did nothing at all”. Placards read ‘End the Ignorance! Start the Education’ and the crowd cried out for funding…
People with ME/CFS, their families, caregivers, friends and allies gathered at the Federal Plaza to protest and make speeches in New York City. 25 protests happened across 4 continents on the 27th of September, in person (and virtually), with many live videos and an impressive amount of press coverage collated by #MEAction. There was major action taking place!
Here is a great slideshow from #MEAction!
The New York protest scored some excellent reporting in the Business Insider by Rafi Letzter: ‘More than a million Americans are suffering from a mysterious, debilitating disease — and they’re sick and tired of being ignored’.
Terri Wilder posted this update to the #MEAction Facebook page on the day about the NYC demonstration:
#MillionsMissing Tuesday, 9/27/16 4:30-5:30 PM EST. The NYC protest had approximately 40 people in attendance with a full agenda of speakers and angry chants! Drs. Susan Levin, Dr. Mady Hornig, Jim Eigo (ACT UP/NY), Annette Gaudino (Treatment Action Group), Terri L. Wilder, and other persons living with and affected by ME spoke at the demonstration. A few reporters showed up and at the end of the demonstration Terri and Annette attempted to deliver a “bad report card” to the HHS regional office director but were stopped by building security and threatened with a citation! Onward!”
It is incredibly empowering to see our community up in arms about the situation for people with this disease and pushing loudly for something to be done – it is even more so when doctors and scientists are adding their voice to the call on our behalf. Thank you Dr. Hornig and Dr. Levine for giving forceful speeches in NYC! We have produced an unauthorised transcript of these talks below with huge thanks to Jennifer Johnson Avril and Terri Wilder for video and images of this great day! Separate video’s are available here on youtube.
Dr. Mady Hornig
“I am honored to have been invited here today to speak with all of you gathered around me, all of those who hope, someday, to again be well enough to fill these empty shoes, and all the millions missing who join us virtually by live stream or in spirit through their families and friends. I am especially honored to be one of the faces of this challenge on behalf of the far-too-many children whose lives – their very futures – have been put on hold by this disease.
I am just one small part of a growing, global team of research scientists who are finally becoming enabled to begin to give this disease – myalgic encephalomyelitis, aka chronic fatigue syndrome – the attention it has long been denied. Humbled by the gratitude you have sent our team at Columbia University’s Mailman School of Public Health through – literally – thousands of phone calls, emails and blog posts. Incredibly grateful for the early philanthropic leaders that fueled our research efforts at a juncture when funds were even more scarce than they are today.
So huge thanks to the Hutchins Family Foundation and its paradigm-changing Chronic Fatigue Initiative. Thanks to Simmaron Research Foundation. Thanks to several incredibly generous anonymous donors who continue to help make Columbia’s innovative research program on the potential causes and treatments of this disease a reality.
Special thanks to patient-led Microbe Discovery Project, whose members work tirelessly to crowdfund on behalf of our microbiome and big data project at the Center for Infection and Immunity. Their support has been vital in keeping our research operations going.
We are thankful, too, to what the NIH has done so far to help us establish our research consortium and to lay the groundwork for what needs to come next. Thankful for the clinicians around the US who are part of our network and who lend their clinical wisdom and well-earned expertise to these research efforts.
But this had better just be the start. Last year, NIH funded us, along with some of this country’s most expert ME/CFS clinicians, to collect incredibly well-characterized, unique samples and rich clinical information from patients and controls, multiple times over the course of a year. These samples and data will no doubt lead us to new discoveries as to why the disabling symptoms of this illness occur, who is at risk, and ultimately give us clues as to how to treat it – someday.
Right now, we are without funding to study these samples or the clinical data associated with them. We’re all dressed up with no place to go. Like what the game-changing Combating Autism Act of 2006 brought to the autism research field, perhaps we really need an act of Congress to bring our current research initiatives to the next level. Shout outs to those advocates who have campaigned on the Hill and to those members of Congress who have already signed on. Grow that effort.
NIH has promised to commit funds to ME/CFS, an opportunity for which we are grateful. We have learned that ME/CFS Centers of Excellence and Data Management Centers will be funded through these funding commitments, known as Requests for Applications, or RFAs. But just last week NIH released RFAs committing $62M to other diseases, with none for ME/CFS. In the past year, $2.8B have been committed to RFAs – again, with none for ME/CFS. So we in the research and patient communities are still waiting on these promises to be fulfilled on behalf of the millions missing.
So hopefully what we have seen and what you have been promised thus far is only a beginning. Funding initiatives must be expanded to spark the imagination of creative scientists from all manner of research areas, and to entice newly-minted physicians and PhDs to dedicate their careers to this field. To welcome health professionals to the care of ME/CFS patients, through education and awareness campaigns paired with clinical toolboxes that have been vetted to meet the highest standards of clinical safety and effectiveness. This is what it took to launch the now expansive HIV/AIDS research efforts and to begin to make clinical care for orphaned and stigmatized patient populations a reality.
We know we need more. More awareness of the disease, less stigma. We must train existing and upcoming generations of health professionals to recognize the disease, throughout the globe. While we all wait to uncover the answers that will inform treatments, and – dare I say it? – cures, we must know which remedial avenues are safe for patients. We must identify and diagnose all cases of disease.
When new patients are diagnosed, health professionals must have guidance on what to recommend. Best practices must be developed, honed, refined, and redefined. A big shout out on that to our Columbia colleagues, biostatistician Dr. Bruce Levin and microbiologist Dr. Vincent Racaniello, for vigorously responding to the call from David Tuller and others around the world to reanalyze data from the PACE trial and to ensure that future research studies are designed and conducted with patient safety in mind and reported with the utmost scientific integrity.
Early recognition of this disorder is essential. Work from our group and others suggests that in later phases of the disease, the immune system and the metabolic machinery of those afflicted with ME/CFS become exhausted. We critically need research to know how to stave off exhaustion of the immune and metabolic machinery, as well as how to safely jump start these critical systems once they appear to have shut down. We have clues that distorted gut microbiomes and infections with certain viruses and bacteria may contribute in some cases. In others, environmental triggers such as fungi, mold and toxicants may play a role.
Research initiatives focused on understanding how these potentially tractable factors may lead to disease are in critical need of your support.
We recognize that it is hard to hang onto hope. The pace of research must not stall due to inconsistent and inadequate funding. None of us intends to settle for less than what this community needs and deserves.”
Donating if you can afford it, is simply one of the easiest things we can do to help move research forward. Dr. Hornig and Dr. Lipkin’s massive microbiome, immunity and big data study has zero chance of FULL funding and together patients are making the all important difference for this project! See the study and donate here.
Dr. Susan Levine
“Hello, as Terri recently introduced me, my name is Susan Levine and I am a clinician in New York state and I specialize in evaluation and treatment of Chronic Fatigue Syndrome/ M.E patients. ME/CFS is a disease that’s well defined clinically, we know what this disease is.
It’s a combination of the following; post exertional malaise, unrefreshing sleep and either cognitive abnormalities or autonomic dysfunction. We know what this disease is clinically however we don’t yet have a biomarker or an adequate laboratory test, to be able to test people by routine laboratory testing.
Over 5,000 papers exist in peer reviewed journals, covering infectious, immune, hormonal and central nervous system findings related to this complex disease. It is not a psychiatric disorder. By one estimate at least 1 million ME/CFS patients exist in the US and most are unable to work fulltime.
A lot of these patients are hidden, their hidden in rural areas, in areas where there is low socioeconomic standards; and where there are no trained physicians.
The disease effects our country very much so economically, and reduces the quality of life not only for patients; but for their caregivers as well. A small number of physicians and health professionals as well as researchers; are familiar with the clinical presentation of this illness. And we really need to find ways to disseminate information to students and to health care professionals, patients and their families.
Yesterday I attended a task force on medical education in Atlanta and what was meant to happen is we were going to interface with the Centers for Disease Control that presently has a tool kit that really does not meet the needs of most patients. So, CDC recognises that and invited us – patients, clinicians, researchers, to partner with them to try to develop educational materials for patients with ME/CFS, primary care doctors, internists and other specialists.
This is a project that’s very close to my heart, because I see it every day in my practice. I see patients that come to me, like ******, who wandered all over the place and present their symptoms and their laboratory findings, and the doctor just has no clue.
Frequently more often than not these patients are labelled as having a psychiatric disorder and belittled in many different ways. And of course as time goes on they are not given appropriate treatment and as we’ve learned from some of our clinical studies the sooner we intervene with whatever intervention – the more likely we are to make an impact.
So my aim is, really to try to disseminate information, not only to existing caregivers, providers of all sorts; not only doctors but physical therapists, nurse practitioners, nurses and also to patients and their families; but also to develop fellowship and training programmes to train our next generation of doctors who can treat ME/CFS patients and really learn how to recognise them and make an early intervention.
Identification of biomarkers is within our reach – but we need further funding from both our government and from the private sector. As Dr. Hornig alluded to we’ve had some generous funding from our private sector – the government really needs to step up and fund our disease. Thank you.”
Thank you to every person who made efforts in person and online to join the #MillionsMissing! Thank you for all your donations to Dr. Lipkin and Dr. Hornig at Columbia University CII. We can not sit back while researchers this great continue to go unfunded.
~The MDP team