ME sufferers and students carrying photographs of bed-bound ME patients will march to the White House tomorrow (April 28) in a bid to raise awareness of the disease and urge the US Department of Health and Human Services (HHS) to take urgent action.
The march dubbed Boots on the Ground in DC has been organized by MEAdvocacy.org, a small voluntary grassroots organization with a mission to raise awareness for people suffering from myalgic encephalomyelitis (ME).
“We have raised funds and organized this demonstration in DC to raise awareness about the illness and to urge the HHS to properly address this severe group of patients,” MEAdvocacy volunteer, Colleen Steckel told The Argus Report this morning. She said they were also asking the NIH to increase its funding of the disease to US$250 million per annum to bring it up to par with other similarly burdened diseases.
ME is a debilitating, neuroimmune disease that affects at least 1 million men, women and children in the US alone. It has been described in the worst possible terms as the “hidden plague,” as being “polio-like,” and as a “non HIV/AIDS” disease.
But MEAdvocacy maintains that most Americans have never heard of the disease. Why?
“ME lacks prominence because the government hasn’t taken this disease seriously,” said Steckel. “In the 1980s, the government renamed the disease the trivializing and belittling name chronic fatigue syndrome. Federal research funding has been at the bottom of the barrel for decades.”
In February this year (2015), the US Institute of Medicine (IOM) recommended that instead of calling the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), the name should be changed to Systemic Exertion Intolerance Disease (SEID). This was received with mixed reaction, with a very large body of sufferers condemning it for being overly broad and demeaning. As a result, MEAdvocacy has called on Congress to call ME by its already accepted name: Myalgic Encephalomyelitis (ME).
In a statement on its website, the organization says:
In order to move the science forward for this disease, ME needs well defined criteria and an appropriate name.
ME has a long history, appearing worldwide in epidemic and endemic forms. A 1955 outbreak in London led Dr. A. Melvin Ramsay to describe it as an infectious neuromuscular disease and to coin the term Myalgic Encephalomyelitis. Yet, here in the U.S., HHS has repeatedly attempted to marginalize the disease by creating overly broad criteria and by re-branding it with undignified, marginalizing names. These actions by HHS have been the cause of three decades of confused research findings and the lack of viable treatments.
HHS has defiantly ignored the plea by its own Chronic Fatigue Syndrome Advisory Committee (CFSAC), medical experts, patient advocates, patients and their families to adopt M.E. expert-authored, well-defined criteria and name for the disease.
About Tomorrow’s March
The march is planned for tomorrow, Tuesday April 28, 2015 starting at 10 am at the Independence Avenue, south east entrance of the Capitol, across from Rayburn Building. Marchers (including ME patients) will circle the Capitol grounds on the pedestrian walkway route and then head north across the front of the Capitol. By 10.30 am they expect to be on the west side of the Capitol, moving back in the direction of the Independence Avenue entrance.
Marchers will then travel to the White House in cabs and congregate on Pennsylvania Avenue at 11.15 am until noon. Then they will march backwards and forwards, up and down the sidewalk.
MEAdvocacy announced today that students would fill in for ME patients who are too ill to walk – let alone march. They will carry photos of real sufferers, along with their biographies.
We refuse to let them be invisible any longer. The “voice of the patient” will be heard through the students. MEAdvocacy
“HHS has neglected these patients for the past three decades by withholding proper funding and excluding education about the disease in the curriculum of US medical schools. This has resulted in limited scientific advances and lack of knowledge about the illness by physicians nationwide. The patients, some of them so severely affected as to render them housebound and unable to care for themselves, have been unable to loudly speak out… until now!”
This group does not accurately represent the issues and has itself contributed to the problems with this ME/CFS shell game, the real root of the problem. Their fundamental premise is wrong: that ME was just renamed CFS and that’s the problem. They can pitch this to patients who will accept on face value and go along, but really harms true ME patients.
And this campaign of just telling stories and empty chairs and shoes or whatever the gimmick has just become worn out and tiresome.
Please do some meaningful and accurate coverage, not just press release or appealing rhetoric.
I agreed to publish this campaign and added to the press release, because I believed it was a valid story and needed as much publicity as possible. Apart from the fact that I challenge your comments regarding accuracy, all the other articles on this web site that discuss ME/CFS are, I believe meaningful and accurate in terms of what is reported. You haven’t bothered to comment on any of these! There are many very angry ME and CFS patients who will disagree with you! The renaming of the disease is a kick in the face.
While this is indeed a well-intentioned effort, and a good start, it’s going to take tens of thousands of healthy friends and supporters of ME/CFS patients to make any difference at all. These small demonstrations have been going on for years, with absolutely no results.
Hopefully this will spread and grow quickly, but if not, there’s no chance it will make any impact.
But kudos to those who care enough to try to help us all. THANK YOU.
This is a great idea. I did not know that “chronic fatigue syndrome” was not a good name for what I have. I will have to start calling it ME (myalgic encephalitis). Wish I could be there to protest myself. There are other things I would love to protest like the high cost of living and my low income as others have (maybe some people will start a protest on that), but I have no energy to do so. I applaud those who can protest on our behalf. Let’s go partners.
I hope America will lead the world in giving more support and recognition to ME sufferers. Come on America and all the world unite on this one.
It is about time that we all joined forces to figure out why so many people are ill. Many with lyme and tick borne pathogens are given the label CFS/ME/CFIDS. Lots of money goes to AIDS research but it is now time to start funding other research. When you look at our population, we are quite ill with CFS/ME/CFIDS/ Lyme/Lupus/MS/ALS/all autoimmune diseases/RA/Sjogrens/Scleroderma/ Diabetes/PCOS/Depression/Anxiety/ Immune system failure/Asians with non HIV AIDS/Ehler Danlos/Parkinsons/and the list goes on and on. Is there going to be anyone to run things in the future ? Wish I could be there to support you.
Yea!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I’m so thankful for the students who are doing this march! I will be praying that God will bless the march tomorrow and much more will be done for fellow ME/CFS sufferers!!!!!!!
22 Year ME/CFS Sufferer
This is what we have needed lo these many decades: Able-bodied advocates marching on our behalf…showing up in person so they cannot be ignored…carrying the message of suffering for those of us too sick and weak to do it ourselves.
Godspeed to each one of these angels of mercy! Thank you, thank you, THANK YOU!!!