People started complaining at the beginning of lockdown. Welcome to our world. It took me a long time to come to terms with M.E. I was going down a black hole and didn't want to be here. I have Fibro also. The intense pain and intense, complete, overwhelming, all consuming exhaustion was too much. At times it was an effort to breathe. What is the point being in such pain and too exhausted to breathe, to keep going. I didn't want to be here and had to greive for my past life and try to come to terms how things were now. My 2 girls got me through. I ended up on Fentynal, which gave me some relief. If it wasn't for that I wouldn't be here...
I live in KY and can't even find a Dr to get even a diagnosis. I'm extremely frustrated. What do I do? Do you have a program that helps people get a diagnosis?
Dana Shannon Hi Dana - Your best bet is to google recommended ME/CFS doctor lists and network with CFS support groups. You may need to travel to a different state conceivably. Just be aware that different CFS patients value different things from their physicians. Some just want to try a whole bunch of treatments (without solid evidence that they work). Others are more concerned with getting an accurate diagnosis from an informed physician who will be their advocate when it comes to applying for disability benefits. I was diagnosed by a doctor at Stanford medical center in 1996 but I had to show her the 1994 Fukuda case definition. You might check into going to an academic medical center but there are no guarentees that they will be well informed and compassionate when it comes to ME/CFS.
it doesn't lean nowhere, science is being conveyed with maximum effort. It just takes huge effort to get even simple but reliable results. Think about this - everything Isaak Newton or Einstein, Edison achieved throughout their life, kids now learn in school in a few years. Could you say that those scientists wasted their lives on "simple" discoveries? Ofc NO! Same here - with maximum effort they're making baby steps and who knows maybe metabolics trap theory will be taught in high school within a decade!
There are only two ways to get effective treatments for ME/CFS - either you have a whole bunch of patients try a whole bunch of random treatments in the hope of finding something that works (but without understanding the mechanisms of how) OR figure out exactly what is going on in the bodies of ME/CFS patients and then find treatments that fix those biochemical problems. The first approach will only work if someone carefully collects a lot of information and sorts it out. Unfortunately that never happens - instead a whole bunch of ME/CFS patients spend a bunch of money trying a whole bunch of random things and noone attempts to figure out what treatment actually works on which subgroup of patients. Some people get better but a whole bunch of others don’t. So money spent on figuring out the mechanisms of illness is most certainly not wasted. If anything all the patients trying all sorts of random treatments in nonsystematic ways are wasting money.
Thank you, Linda; and thank you always, Llewellyn.
People started complaining at the beginning of lockdown. Welcome to our world. It took me a long time to come to terms with M.E. I was going down a black hole and didn't want to be here. I have Fibro also. The intense pain and intense, complete, overwhelming, all consuming exhaustion was too much. At times it was an effort to breathe. What is the point being in such pain and too exhausted to breathe, to keep going. I didn't want to be here and had to greive for my past life and try to come to terms how things were now. My 2 girls got me through. I ended up on Fentynal, which gave me some relief. If it wasn't for that I wouldn't be here...
Thank you!
People will not be more empathetic. Its just the way it is.
I live in KY and can't even find a Dr to get even a diagnosis. I'm extremely frustrated. What do I do? Do you have a program that helps people get a diagnosis?
Dana Shannon Hi Dana - Your best bet is to google recommended ME/CFS doctor lists and network with CFS support groups. You may need to travel to a different state conceivably. Just be aware that different CFS patients value different things from their physicians. Some just want to try a whole bunch of treatments (without solid evidence that they work). Others are more concerned with getting an accurate diagnosis from an informed physician who will be their advocate when it comes to applying for disability benefits. I was diagnosed by a doctor at Stanford medical center in 1996 but I had to show her the 1994 Fukuda case definition. You might check into going to an academic medical center but there are no guarentees that they will be well informed and compassionate when it comes to ME/CFS.
I just love you,
Research that leads nowhere. Money going to that research. Meanwhile those of us that have been suffering for years get no help.
Extremely frustrating.
it doesn't lean nowhere, science is being conveyed with maximum effort. It just takes huge effort to get even simple but reliable results. Think about this - everything Isaak Newton or Einstein, Edison achieved throughout their life, kids now learn in school in a few years. Could you say that those scientists wasted their lives on "simple" discoveries? Ofc NO! Same here - with maximum effort they're making baby steps and who knows maybe metabolics trap theory will be taught in high school within a decade!
There are only two ways to get effective treatments for ME/CFS - either you have a whole bunch of patients try a whole bunch of random treatments in the hope of finding something that works (but without understanding the mechanisms of how) OR figure out exactly what is going on in the bodies of ME/CFS patients and then find treatments that fix those biochemical problems. The first approach will only work if someone carefully collects a lot of information and sorts it out. Unfortunately that never happens - instead a whole bunch of ME/CFS patients spend a bunch of money trying a whole bunch of random things and noone attempts to figure out what treatment actually works on which subgroup of patients. Some people get better but a whole bunch of others don’t. So money spent on figuring out the mechanisms of illness is most certainly not wasted. If anything all the patients trying all sorts of random treatments in nonsystematic ways are wasting money.