• The #MillionsMissing Global Petition for ME Equality
    Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a systemic neuroimmune condition that causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. An estimated 15-30 million people around the world are suffering from ME. Approximately 75-85% of them are women and 80-90% of them are undiagnosed. The human cost of the current medical and policy neglect is tremendous. At the “mild” end of the spectrum, patients who still work may lose 50 percent of their previous function. Others are forced to abandon careers they loved - and the ability to support themselves and their families. Twenty-five percent of patients are shuttered in their homes or trapped in bed. At the most severe end of the spectrum, patients may live the rest of their lives in darkened rooms, unable to tolerate light, sound, or human touch. Only 4-8 percent fully recover. ME medical costs and lost productivity result in an estimated US $20 billion each year. In the US and the UK, there have been numerous cases of children being taken away from their parents and placed in foster care. In Europe, some severely ill patients have been forcibly institutionalized. Despite this incredible social cost, research is severely underfunded by governments across the globe. That is why we call on every government in the world to formally recognize ME and sufficiently fund research at the levels needed to treat and, ultimately, find a cure. ---------- ME Research Funding Statistics Around the Globe: 1) In the US, ME research funding is between $3-8 per patient per year. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year. 2) In the UK, MS has received 20 times the funding as ME. 3) In Canada, where 1.9% of the Canadian population have been diagnosed with ME, funding for ME patients averages around 11 cents per patient. 4) In Australia, approximately AUD 110,000 is allocated to ME/CFS each year.
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    Created by Time For Unrest
  • NIH, please create a new RFA for ME/CFS
    read the letter: http://www.meaction.net/wp-content/uploads/2015/05/ScientistLetterMEResearch.pdf
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    Created by Ruddy Red
  • Need NIH funding to cure M.E. for 1-2 million Americans
    The lack of biomarkers for Myalgic Encephalomyelitis makes this disease hard to track by CDC, or find cures by NIH. R&D funding is needed to cure ME/CFS, saving $20Billion per year to US, and getting these patients back into schools & workforce. Just like AIDS 35 years ago, we need your help to now solve the last major chronic disease that we still know almost nothing about. For more info, see also www.END-MECFS.org
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  • Fund research into CFS/ME and educate health professionals.
    So that CFS/ME sufferers can finally be taken seriously and understood. To stop so many people with this illness taking their own lives. To get the medical and financial help for people with CFS/ME
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  • Reinstate CDC Research Funding for ME/CFS
    From Whitney Dafoe: "I have been struggling with health problems for the past 8 years, since I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I'd wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems. For the past 4 years I have been really sick. I started a wedding photography business when I realized I could no longer hold a full time job, thinking that it was a blessing in disguise because once I got my health back I would be making money doing something I loved. After a year things were looking really good business wise, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. When I couldn't recover in a week in order to shoot the next wedding, I decided I had to give it up which was pretty heartbreaking because of what it represented. That was in 2010. For the last 2 years I have been bedridden much of the time, my health and mobility slowly decreasing. I'm now forced to rest in bed most of the day, saving up energy for little bits of projects like writing this, or working on some photographs for a half hour or an hour on a good day. About 2 years ago, after seeing countless doctors and specialists in every area of medicine I could find, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome by Dr. Andy Kogelnik at the Open Medicine Institute in Mtn View CA. I have been working with him ever since. But there is no cure. I will be taking some experimental drugs that have shown promise in limited trials. Let's hope for the best. The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME) as it's called in Europe, vary from patient to patient. The most fundamental symptom is debilitating fatigue. But fatigue is much too mild a word. I like to compare the state I'm in now to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day- hung over, not having slept or eaten in 3 days- is close, but still better than many CFS patients feel every day. "Total body shut down" would be a better phrase because you are at a point where your body physically does not have the energy to keep going. Patients with CFS also experience something that is often called Post Exertional Malaise.. Most people, including people afflicted with many other illnesses improve with exercise. Even after an intense workout or a long day of work, they recover after a night's rest. Patients with CFS experience a severe worsening of physical symptoms during or after exercise. We tend to have a certain amount of energy reserves (far less than healthy people) often called an "energy envelope". If we push ourselves to keep going past this, the symptoms worsen significantly and it often takes days or weeks to return to where we were before. Some patients are permanently worsened. No amount of willpower, happiness or excitement changes this. I can be out of my mind with bliss and still run out of energy to work on something. There are some new studies examining this unique symptom and they are finding that patients with CFS react differently to exercise. We will see much more on this in the near future and hopefully see a diagnostic test emerge from this research soon. One of the terrible things about CFS is that because of the lack of understanding in the general public, most patients are constantly told to "suck it up", or that "exercise makes other people feel better" etc. Which creates a lot of guilt and shame for patients who already desperately want to do more but physically cannot. Not to mention not feeling understood. And it also pushes people to do more than they should, the results of which can be catastrophic. This is why we need more awareness. I spent the first years of this illness pushing myself. I thought it would eventual go away, and I tried to just keep going and do as much as I could. I didn't want to surrender to it, or let it shape my life. If I had known more about CFS and the consequences of over exertion, I may not be nearly as sick as I am today. Though who knows, I probably would have been optimistic and tired to do everything I did anyways. I am now bedridden most of the time. I can't walk much because of circulation and muscle problems in my legs and arms. I don't even have the energy to sustain computer work or conversation with people for more than short amounts of time. But some people are much worse than I am...." Read more: http://www.whitneydafoe.com/news/index.html
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    Created by Julia Johari