By the way the Biochem paper was really interesting. The sad part is so much more research needs to be done, Research of ME is so far behind MS that it's shocking to be honest...
Yeah the prevalence is 5x MS too. Yet no funding. I think MS is underfunded as well but they get so much more.
We need AIDS level finding bad fast tracked fully funded clinical trials. The numbers of folks with Covid induced ME are staggering. This really is a mass disabling event and no one cares. Like they didn't care in the 80's in the US (incline Village). Or the 60's overseas....
Seems like the government funding goes to all the wrong places... And they don't care about ME or MS until one of them actual get it. Even then it seems like so little is done. It's ridiculous!
Zero treatments. Effectively zero money for research and over 1.3% ++++of the population effected.
But we're mostly women so it's not like we're human beings deserving of treatments.
Absolute morons who dare say that to anyone. CFS is a total misnomer. More money is needed for research, maybe if the government would stop wasting money there would be more for research. Dumb idea, I know...
hahahah. the govt using money in meaningful ways. That was a good one.
The study also mentioned how lower income people have more cases of ME/CFS. I think this is because they asked people who were already diagnosed(likely sick for 7-10 years + the average time is takes for dx) and ME and other chronic illnesses cause poverty. Nearly impossible to get any disability benefits for ME folks.
This numbers are terrifying though. Studies are showing consistently that half of LC patients, the ones who are most severe are covid induced ME/CFS patients.
Like I said mass disabling event that has gone on for centuries (every major pandemic/outbreak had reports of post -infection syndromes similar to ME/CFS LC etc) and no one cares. Society just let's these patients rot in poverty with no help. Not just in the US, but worldwide.
I know so many people with ME who are homeless or on the brink or forced to live with abusive family members/partners etc because there are no safety nets for us. I was one of those people, luckily I am in a safe an nurturing environment now- but I am one of the "lucky" ones. Our sensory processing issues make things like shelters damn near impossible to live in and navigate.The noise alone an trigger PEM...
Since the infection how are you feeling? Everything slowly improving?
Yes. My POTS is acting up a bit more than usual but otherwise things are getting back to normal. I'm just exhausted, which I guess is my normal.
By the way the Biochem paper was really interesting. The sad part is so much more research needs to be done, Research of ME is so far behind MS that it's shocking to be honest...
Yeah the prevalence is 5x MS too. Yet no funding. I think MS is underfunded as well but they get so much more.
We need AIDS level finding bad fast tracked fully funded clinical trials. The numbers of folks with Covid induced ME are staggering. This really is a mass disabling event and no one cares. Like they didn't care in the 80's in the US (incline Village). Or the 60's overseas....
Seems like the government funding goes to all the wrong places... And they don't care about ME or MS until one of them actual get it. Even then it seems like so little is done. It's ridiculous!
They call it CFS (we usually don't use that dismissive term anymore) but check out these numbers. Keep in mind 90% are undiagnosed (Similar to POTS). https://apnews.com/article/chronic-fatigue-syndrome-long-covid-cdc-c7f3dddbe88ec40d70448743fd479b30
Zero treatments. Effectively zero money for research and over 1.3% ++++of the population effected.
But we're mostly women so it's not like we're human beings deserving of treatments.
I still get told "diet and exercise"
Absolute morons who dare say that to anyone. CFS is a total misnomer. More money is needed for research, maybe if the government would stop wasting money there would be more for research. Dumb idea, I know...
hahahah. the govt using money in meaningful ways. That was a good one.
The study also mentioned how lower income people have more cases of ME/CFS. I think this is because they asked people who were already diagnosed(likely sick for 7-10 years + the average time is takes for dx) and ME and other chronic illnesses cause poverty. Nearly impossible to get any disability benefits for ME folks.
This numbers are terrifying though. Studies are showing consistently that half of LC patients, the ones who are most severe are covid induced ME/CFS patients.
Like I said mass disabling event that has gone on for centuries (every major pandemic/outbreak had reports of post -infection syndromes similar to ME/CFS LC etc) and no one cares. Society just let's these patients rot in poverty with no help. Not just in the US, but worldwide.
I know so many people with ME who are homeless or on the brink or forced to live with abusive family members/partners etc because there are no safety nets for us. I was one of those people, luckily I am in a safe an nurturing environment now- but I am one of the "lucky" ones. Our sensory processing issues make things like shelters damn near impossible to live in and navigate.The noise alone an trigger PEM...