I feel this is where the disease needs to be defined in subgroups, stages or completely different diseases.
I am sick of us all being patient Drs.....I want us to be treated in a humane way and studied biologically.....
In 1 year MS research releases as many studies as we have had in the History of ME... ME was defined within years of MS...yet was not granted any treatments, solutions or maney yet impacts 3 x or more the amount of people...
Enough with the BS....CBT and GET Garbage....it ends in permanent deterioration in 95% of ME patients based on what I have read.....and in my experience
I was mild and became severe because I just did normal day to day things....one walk that was too long....well no s**** my aerobic system is messed up!
Real ME needs reel biological research....not the promotion of CBT or GET in anyway....PERIOD!
People lose their whole lives to this illness money, children, spouses and more....
There are likely over a million people locked away in dark rooms, unable to tolerate noise and sound, and whatever else....
You go tell a cancer patient to go search all over the internet looking for what tests they shoud have.....you go tell that cancer patient to try every medication and supplement know to man....you go tell that Cancer patient to Talk and Walk away his Tumor that is eating his body.....its a joke....WHY DO WE HAVE TO BE TREATED AS SO!
This is an absolute joke that we as members of a modern society are subjected to such crap....
Real ME is a Neuro Immune illness with devistating outcomes and leads to more comobidities then I can count on with my fingers and toes....
When Klimas said she would rather have HIV and that ME patients can be compared to those dieing of late stage AIDS.....
Do you think she was kidding??????
Do you wonder why so many go missing from this forum after 2, 3 , 4, 5 years......they either recover, get worse, get banned, lose their internet, or leave for unknown reasons....I have seen final posts from many that seem so sick....
Did you hear the about the young personal trainer that is now as severe as Whitney Dafoe....his name is Jamison...5 years is all it took
What about the countless books, documentaries, photos, youtube videos, etc. of suffering ME patients.....
I had Chronic Fatigue when I was tired from working to hard or lifting weights or whatever I was doing too much....this does not mean I had chronic fatigue syndrome...stress can make your sleep poor...so can a bad diet...so can an allergy....
ME shares similarities to CFS....personally I feel as though and many others do too that exercise in a person with ME makes them decline or deteriorate....
Not to mention I have heard from my Drs that people are fine then one day they just drop....Bedridden....cant get out of bed....its happened to many on this forum....almost like relapsing remitting MS....
The bottom line is that its BS exercise therapy that is pushed on us....when their is a downright biological hidden problem.....the Institute of Medicine Report says overexertion makes people worse.....
I am sick of the exercise, pace yourself crap, when their is a real biological illness at hand....
Do the research and stop the Harm!!!!!
I am sick of us all being patient Drs.....I want us to be treated in a humane way and studied biologically.....
In 1 year MS research releases as many studies as we have had in the History of ME... ME was defined within years of MS...yet was not granted any treatments, solutions or maney yet impacts 3 x or more the amount of people...
Enough with the BS....CBT and GET Garbage....it ends in permanent deterioration in 95% of ME patients based on what I have read.....and in my experience
I was mild and became severe because I just did normal day to day things....one walk that was too long....well no s**** my aerobic system is messed up!
Real ME needs reel biological research....not the promotion of CBT or GET in anyway....PERIOD!
People lose their whole lives to this illness money, children, spouses and more....
There are likely over a million people locked away in dark rooms, unable to tolerate noise and sound, and whatever else....
You go tell a cancer patient to go search all over the internet looking for what tests they shoud have.....you go tell that cancer patient to try every medication and supplement know to man....you go tell that Cancer patient to Talk and Walk away his Tumor that is eating his body.....its a joke....WHY DO WE HAVE TO BE TREATED AS SO!
This is an absolute joke that we as members of a modern society are subjected to such crap....
Real ME is a Neuro Immune illness with devistating outcomes and leads to more comobidities then I can count on with my fingers and toes....
When Klimas said she would rather have HIV and that ME patients can be compared to those dieing of late stage AIDS.....
Do you think she was kidding??????
Do you wonder why so many go missing from this forum after 2, 3 , 4, 5 years......they either recover, get worse, get banned, lose their internet, or leave for unknown reasons....I have seen final posts from many that seem so sick....
Did you hear the about the young personal trainer that is now as severe as Whitney Dafoe....his name is Jamison...5 years is all it took
What about the countless books, documentaries, photos, youtube videos, etc. of suffering ME patients.....
I had Chronic Fatigue when I was tired from working to hard or lifting weights or whatever I was doing too much....this does not mean I had chronic fatigue syndrome...stress can make your sleep poor...so can a bad diet...so can an allergy....
ME shares similarities to CFS....personally I feel as though and many others do too that exercise in a person with ME makes them decline or deteriorate....
Not to mention I have heard from my Drs that people are fine then one day they just drop....Bedridden....cant get out of bed....its happened to many on this forum....almost like relapsing remitting MS....
The bottom line is that its BS exercise therapy that is pushed on us....when their is a downright biological hidden problem.....the Institute of Medicine Report says overexertion makes people worse.....
I am sick of the exercise, pace yourself crap, when their is a real biological illness at hand....
Do the research and stop the Harm!!!!!