Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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JenB said:“Okay awesome. Wow this is amazing. As soon as I pulled up to the square here I just started sobbing because I have been waiting in some sense ever since I got sick for this moment to be together here today with so many people that I have only ever met online.
My story is the story of millions. I was young. I was well. And I had so many dreams. Of what I wanted to do in the world. Of what I thought my life could be. And then one day I got what I thought was the flu and I was never the same. I saw doctor after doctor and there was no help, no diagnosis. Most days I could barely lift my head from a pillow. I had to crawl to get to the bathroom. And I was told that I wasn’t really sick. That my experience was impossible. That my body was body was falling apart because of a distant trauma that I could not recall. They told me that it was all in my head...
Ron Davis said:I’m Ron Davis and my son is missing…
Linda Tannenbaum has really helped us a lot in raising funding.
We have enough funding that we managed to assemble a very small team at the Stanford Genome Technology Center. This team is really excellent in doing research. And we are making progress.
Now, it is very clear what is needed: we need more people doing research in this area. I don’t want all this money just to fund my own lab: I want to recruit other people in other labs that are specialists in things that need to be looked at, and we are now doing that.
I think that we are very close now to finding a molecular diagnostic marker. And we also think we have a bit of an understanding of what this disease is.
A lot of the ideas that have been around about what this disease is, I think are wrong; and it`s because they only look at one of the symptoms.
I think what this disease is, is a fundamental shutdown of the energy generation system in the body, and we can see that from all the molecules we look at. So our type of research is collecting massive data — and we have developed a lot of the technologies that in fact allow you to see massive amounts of data — and we have fantastic people to analyze that data.
And it really looks like it’s a mitochondrial problem, and in fact [the mitochondria] doesn’t generate very much energy; and that can cause almost all the symptoms we see. We can make a model for that and explain almost everything about what we see in this disease. It explains the immune system problems, it explains the brain system problems, and so forth....
Email from Solve said:On May 25, the Solve ME/CFS Initiative took part in the international #MillionsMissing protest, organized by #MEAction. To our knowledge, this is the largest protest for this disease ever.
Solve ME/CFS Initiative President Carol Head spoke at the San Francisco protest, which was attended by approximately 100 people. Through a bullhorn, Head said that following last year’s Institute of Medicine report, there is no reasonfor the federal government to drag its feet on aggressively funding research on the disease. “It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves forourselves.” Head said.
The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.
Protesters donned #MillionsMissing T-shirts and carried signs that illustrated the many walks of life they were unable to participate in due to the devastation of the disease and the lack of federal government attention to it. A key element of the protests was the display of shoes sent in by patients to show the activities they are no longer able to take part in because of ME/CFS: running shoes, dancing shoes, hiking shoes, flip flops and swim fins among many others.
Terri Wilder said:My name is Terri Wilder and I’m a person living with ME.
I was only diagnosed with ME about twelve weeks ago so it feels a little strange for me to be here today and introduce myself this way……
I typically introduce myself this way:
“Good Afternoon, I’m Terri Wilder. I’m an AIDS Activist and a member of ACT UP/NY.”
Yes, that ACT UP–the AIDS Coalition to Unleash Power. The infamous activist organization that shut down the FDA, demanded that the CDC change the definition of AIDS to include women specific illnesses, and stormed the NIH. I’m fairly certain that many of the government workers walking in and out of this government building today have heard of ACT UP.
While I have only been diagnosed with ME for twelve weeks, I can tell you that it didn’t take me very long to figure out that we are repeating history with ME. I have told multiple people that I’m having déjà vu. You see, I have been working in HIV since 1989...
Ryan Prior said:My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come here for this protest.
October 22, 2006 was a day that my life completely changed forever. I came home from school and I was too ill to hold my head up. It was a similar story to most of the people here today. Within a week or two I was forced to drop out of high school altogether. I was a student council president, I was a high school cross country team captain. I studied abroad at Oxford. I had intentions to go become an Army Ranger. But this disease took all of that away from me...
L.A. Cooper said:Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later today in just a few hours’ time.
It was never explained to me, as a child with M.E., that this community existed. It was never explained to me that there was such a large, open community willing to better the lives of complete strangers living with this condition, and to fight for a better outlook for those who are yet to contract it.
During these next two hours, we stand, sit or lie down to represent the #MillionsMissing. The millions of pounds missing from funding into biological research of M.E. To represent the millions of medical professionals who have no true comprehension of the depth and gravity of this disease, and who are unable to treat, support and care for their patients. We are here to represent the millions of M.E. sufferers across the globe who are missing from their education, their careers, their ability to contribute to society… who are missing from their families, their social lives, their love lives and milestones which others take for granted… who are missing from their childhoods, their adolescence, their adulthoods, who are missing from this protest....
Carol Head said:I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum. Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers.
Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are based in Los Angeles, and Mark succeeded in obtaining a declaration of May 12 as ME/CFS day from Los Angeles Mayor Eric Garcetti. So the second largest city in our nation has now formally recognized this disease. Kudos to Mark.
I’m also an ME/CFS patient. I was quite sick thirty years ago, for many years. I know the deep despair of being very sick, not knowing why you are sick, receiving no help and being dismissed. Ignored. However, I am one of the fortunate very few who is mostly recovered from this disease. My heart breaks for the hundreds of thousands who have not.
We’re here today because it’s time for our government to increase funding and support for this disease. TheInstitute of Medicine Report published last year is a turning point in the history of this disease… and now we need to see the results of that report in the form of federal action and funding!
Let me talk for a moment about this report, which is a turning point for our disease. First, the federal government has now clearly affirmed that this is a serious, physical disease… not a syndrome. For the million Americans who have long suffered with skepticism and lack of care, this is deeply affirming...
Sonya Heller Irey[/quote said:In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy, athletic, and social, with a husband and three wonderful children. All that changed, and my entire world came crashing down, when I developed the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME).
Within months after developing ME, I became like a patient in a coma. I couldn’t walk. I couldn’t speak. I couldn’t brush my teeth. I couldn’t watch TV, or even sit up and eat without help. Yet I was alert and suffering. I was evacuated from my Foreign Service post in Honduras, here to Washington, DC. My doctor in DC was one of the best there is… He told my mother and me that I’d be better off dead. He said the medical field knew almost nothing about ME, except there’s no treatment and no cure. The U.S. Government promptly curtailed both my and my husband’s jobs. My family was evicted from our home in Honduras, from our community, from the country where we were living. A few days later, my husband left us...