Please sign the petition to restore funding for ME/CFS. I learned a long time ago that there are truly no words to describe what this feels like to have this disease. If you are in a hurry, I'll cut to the chase.
Follow the link to the ProHealth website to find out how to help. Those senators do not understand. If this were their own kid, they'd be all over this. We have to make them understand.
Reinstate Federal Research Funding for ME/CFS
Please act now! The $5.4 million in CDC funding for ME/CFS has been stricken from the Senate’s version of the 2016 federal budget. As you can see from the graphic below, ME/CFS was the only disease to be reduced to $0.
If you have the time, please make the jump and I'll try to do my best to explain why this is so very important.
Editor's Note: This apparent funding withdrawal confuses the CFS community because the government spent $1 million on defining the issue, with the results published earlier in 2015. See our KosAbility diary on this decision. It may be that as a result of research and recent decision (IOM and P2P) that CFS research is being moved from the CDC to another department. The Aug 18/19 CFS Advisory Committee meeting focusing on IOM and P2P follow-up may result in information about funding under a different oversight agency.
There are no words to describe this. Believe me, I have tried. My sixteen year old daughter looks like a normal, healthy teenage girl. She looks almost too healthy, which makes it very hard for people to understand exactly how sick she is. Fatigue doesn't really seem to describe it, though. It's like someone unplugged you and then removed your battery, then left all your power on until it just fizzled out dead. There are random pains all through the body, stabbing, aching, tingling, like being suddenly stabbed with a sharp hot knife (I saw one spike on the biofeedback machine one time).
Then, there's dizziness. Low blood pressure and syncope (fainting) and frequents falls. Severe acute attacks of dizziness and pain that leave her writhing on the floor. Skin so sensitive that at times that she cannot bear the feel of clothes touching her body. Eyes jumping when she tries to read. Sensory sensitivities so strong she can hear the neighbor in his kitchen talking on the phone from the other end of the block. Skin so sensitive that she can write a word on her arm during a flare by lightly running her fingernail across it.
Constantly feeling like she is freezing, and seeming unable to to ever feel truly warm. And, then there are all the little infections that make it all ten times worse. And -- the fibro fog. Forgetting where you are, or how to get home. Literally losing the ability to read due to fibro fog and sensory sensitivities. It's a bit hard to do schoolwork under those conditions. That's not all. There are probably a hundred more symptoms. I can never remember them all. We learned them, one by one, as we encountered them.
Doctors can't even agree what it is. One says Fibromyalgia. Another says Chronic Fatigue Syndrome. Some call it Myalgic Encephalomyelitis or Systemic Exertion Intolerance Disease and at one point, the doctor called it Chronic Regional Pain Syndrome. Some doctors say it's not real. Others say it is a "functional disorder" and think it could be cured by a better attitude and a brisk walk around the block. The best name I have for it at this point is "neuroimmune disorder", which is a class that includes such favorites as MS, RA, and ALS. By researching this disease, there is a good chance you could help others, as well.
So far, after years of searching, we have found no effective medical treatments. We survive on supplements and lifestyle changes. And, it looks like we'd better get used to that. Because, according to this, there are no plans in this country to try to learn anything more about this disease and help kids like my daughter and all the other desperate people that live with this and related disorders every day.
Can't we, as a nation, spare even just a little bit of loose change for some really sick people, especially since some of them are just kids?