We have a crisis in medical research. Llewellyn King speaks of the great importance for our government to fund vital research to find an unquestionable biomarker, a treatment and a cure for ME. Millions of people have had their lives taken away by this disastrous disease; where once, they were active members of society, pursuing their careers and fulfilling their life’s dreams, and then to be struck down by ME.
Let’s stop the indifference of our government. We need to continue to send letters, and post notices on social media to keep ME (myalgic encephalomyelitis) in the forefront.
Mr. King, in the video, eloquently puts forth his plea to have more government funding for the research that has already begun. It must not stop. It is imperative that it continue.
Most of the world’s population – and pointedly – most of the medical community of the world, still does not know what M.E. (Myalgic Encephalomyelitis) is; if they have heard about it, they don’t know much about it. It is the “invisible illness.” All the “bad” things are going on, beneath the skin, in the body of those afflicted, and, when looking at the patients, all you can say or think is, “You don’t look sick.” This is why the medical and governmental communities of most countries prefer to consider M.E. as a psychosomatic illness, rather than the severe physical illness that it is.
Points to ponder: HIV/AIDS and MS victims “don’t look sick” either, in the early stages; however, the medical community does not consider these patients as having “psychosomatic” illnesses, because the well-funded research for these has uncovered the cause and the detectable tests for them and thus, treatment, if not cures, has come forth. So it is with M.E., except for the fact that our government has not seen fit to put the research funds needed into the hands of the dedicated scientists who are willing to continue research into the cause – or causes – of M.E.
The video (Sleepydust) below, uploaded onto Youtube on November 30th, 2006, aims to help the friends and families of M.E. and Post Viral Fatigue Syndrome sufferers to understand the illness and what their loved ones are going through. Even though this video is almost 8 years old, almost all of the information contained in it is still relevant. This means that there has not been sufficient research from 2006 till now, for cause; or for proper treatment of symptoms; or better yet, a cure.
Myalgic Encephalomyelitis is extremely debilitating; many become housebound; some even become bedridden; and there are those whose bodies cannot fight anymore, and they die. Advocacy for these terribly afflicted patients is all important. Please take the time to view the short 9-minute video and help to spread the message.
“Researchers analyzing human, fly, and worm genomes have found that these species have a number of key genomic processes in common, reflecting their shared ancestry.”
Lately, I started wondering why, as I progress with this aging thing (it’s just my body, not my mind!), I’ve been noticing changes.
Have you ever paid attention to how fastidious a fly can be? (Not that we usually sit and watch a fly – we look around for a fly swatter, and hope the fly hasn’t flown away in the meantime and, if it’s still there, hesitate to smash it into our food.)
When it isn’t buzzing around, looking for some crumbs to steal off your bread that you have meticulously slathered with butter, it always takes the time to give itself a fantastic grooming, starting with its legs and then carefully rubbing its wings. Is that why I am progressing in my OCD? I seem to be spending more time cleaning and grooming than I used to. Also, like the fly, I won’t leave a crumb on the plate.
Now, it’s a very disagreeable thing to think that we have anything in common with a worm, of all things! Just thinking of a worm, squirming in the dirt, getting away from the rain-soaked soil, is more than enough to never look in a mirror again. And especially staying indoors when it rains. Related. Indeed!
I like fish, but I can’t imagine a relative of mine being bait on a fish hook, to reel in the unsuspecting fish. Ugh!
You know what? I’ll just make believe I never found the article.
If you all have been reading my blogs, you must have read some about ME (myalgic encephalomyelitis). My daughter has this debilitating chronic illness. And, of course, I try to keep up with as much research as I can, and ways in which patients (and doctors, if they’ve even heard of it), are trying to “manage” their illness; in different ways, and with more success, than others. And my daughter is doing her best in “keeping up” and advocating as much as possible.
I came across another blog by David Tuller. David is a journalist who specializes in reporting about science and medicine. He graduated from the Berkeley Graduate School of Journalism, and has articles published in the New York Times and other prestigious journals. He speaks about the disregard our government has towards this terrible, debilitating disease. Between the pharmaceutical industry, medical insurance industry, psychiatrists and politics, ME patients are caught between “several rocks and hard places.”
In this particular blog, he talks about a scientific conference at Stanford, as well as the discussions prior to the actual meeting:
In late March, hundreds of scientists, clinicians and patients gathered for a four-day scientific conference on the illness widely known as chronic fatigue syndrome but more appropriately called myalgic encephalomyelitis. (The scientific name means “painful inflammation of the brain and spinal cord;” most people these days refer to the illness as ME/CFS.)
Sunshinebright’s comment: I was so glad to finally find an easy-to-understand definition of what “myalgic encephalomyelitis” means!
At the conference and a pre-conference gathering at Stanford, which I covered for the website BuzzFeed, attendees heard from researchers who are finding all sorts of physiological abnormalities in people with the illness. While efforts to find a single cause have not produced results, evidence presented during the meetings clearly demonstrated that something has caused patients’ immune systems to go into a state of hyper-activation. The resulting inflammation is likely to be the cause of many of the myriad symptoms that can characterize the illness.
The conference was organized by the International Association of CFS/ME, the main scientific organization related to the illness. The pre-conference meeting at Stanford provided researchers from the university the opportunity to present their own ongoing work related to immune dysfunction.
Patients were delighted by some of the research findings but disheartened by the government’s continued lack of funding support. In recent years, the National Institutes of Health (NIH) has spent only $5 million on the illness, while other conditions with fewer patients but more public recognition have received much more federal support. The scientists, too, are struggling to cope with the limited resources available, and many grumbled at what they view as the government’s long-standing neglect of ME/CFS.
One top researcher, Ian Lipkin, M.D., director of Columbia University’s Center for Infection and Immunity in New York City, has even taken the highly unusual step (for an academic researcher) of resorting to crowdfunding in an attempt to raise more than $1 million in donations for his research into infectious triggers of ME/CFS. While NIH recently granted Dr. Lipkin more than $30 million for translational research, it has refused his request for more funding for his ME/CFS efforts.