PETITION MAJOR MEDIA OUTLETS TO DO A FEATURE ON ME/CFS

CFS rules my life. I have to base everything I am able to do and not do on this disease. I am 27 years old and have to live more like I am 85. If I decide to have one day of fun (or one day of work) I will pay for it for weeks. The fact that most people don't even believe this condition exists still makes it that much harder to live with. The medical community is just as bad. "You just need to exercise more" Actually.....thats the opposite of what my body needs. We need research, we need knowledge, we need awareness, please help us get this condition out there.

I am suspected to have ME/CFS because I am getting to a point were I can do much but sit around the house. I can barely walk somedays, barely talk somedays, somedays I am confused as to what is happening. I have lot's of health issues including Ehlor-Danlos Syndrone, Gastroperesis, Sjogren's, Chronic Migraines, Lyme, AS, TN, ON, and many over things. The Drs and I believe that I apparently at one time got mono and the fever caused the issues to create Guillian Burre and possible ME. I can not work because I am at a constant 8 or 9 pain, I get infections often I get tired often and my body will shut down. I can not just keep pushing. I will have pain induced seizures. All of this but the goverment thinks I shouldn't even get disability because of how ling it gas been since I worked. It shouldn't matter. M.E./CFS is real. I am stuck in my house all the time and normal people don't understand.

Please make a segment on this.

Please put focus to ME/cfs

ME stole my life. I was very accomplished and busy. I taught college. I worked in marketing. I was a writer and editor. But ME stole it, and six years have been lost. The worst part? There’s nothing to treat it. I’ve cobbled together meds that help. Yet I still suffer. Every day. We’ve been ignored long enough. I am one of the #MillionsMissing

I am 29 years old and bedridden with severe ME. I got ill after the epstein barr virus 8 years ago. I was not diagnosed for eight years and forced myself to continue working, exercising and studying. Now I am severely disabled, rely on a wheelchair, I use a bedpan daily, and am sometimes to sick to do this by myself. I have to be spoon fed at times when I'm too ill. I have seizures and transient paralysis. My access to a disability benefit has been declined. My husband is my caregiver. I have no medical support. The ignorance has to stop because the science is there. We will not be ignored forever.

When I saw the 60 minutes report a couple of weeks ago I was horrified. Here I am sitting with severe ME/CFS symptoms for the past three years and this news report is saying to our community “we haven’t seen anything like this before.” It was such an assault to me personally and to my friends and fellow ME community members. This story was erasure of our community and more medical gaslighting. Please tell the whole story!

Please shine a light on the millions struggling with a disease that ends up in 20% of it's sufferers taking their own life due to failure to receive help.

I had to leave work that I loved and was very good at on July 19, 1989. I have been at home, mostly in bed since then. ME/CFS has been my life since then.

Please help us

ME/CFS needs attention. We are literally dying without answers or the help we need. This is a real biological neurological condition and deserves recognition!

I hope 60 minutes will take note of this letter & petition. I caught a virus 7 years ago & never recovered. My health has deteriorated due to no effective biomedical treatments. I’m a children’s book illustrator & have to turn down contracts from reputable book publishers because I spend most of my day in bed feeling incredibly ill. I can’t be the energetic mother to my three children that I used to be. ME/CFS is a living death to those of us at the severe spectrum. The only way to stop history from repeating itself, leaving millions of Long COVID patients without treatment or support, is for media to address the medical injustice of ME/CFS going on for the last 3 decades or more.

Everyone should sign

ME/CFS patient for 11 1/2 years. Mild severity as long as I don’t try to do more activity than 3-4 hours per day.

Please could you produce a programme about M.E. This condition is very misunderstood and making a programme about it would help so many sufferers to be taken seriously. Also, with long covid I feel this would be the right time to air such a programme.

ME/CFS, while statistically occurring in larger numbers of women, is as you can see by the comments an equal opportunity disease. Any awareness and any understanding of this devastating illness will require the acknowledgment that men suffer just as visibly and excruciatingly as women and are shamed and disbelieved just as much, the only difference being that while women are looked upon as being submissive and hysterical, men with this disease tend to be looked down upon as being psychologically weak and impotent. When men try to fight for their own self-worth with this disease, they tend to be seen as aggressors and will invoke hostile reactions when completely unwarranted. The greatest need for ME/CFS - aside from the obvious further increased funding and expansion of research centers and staff is above all else a societal validation, awareness, and understanding - a recognition that the disease is physical and real and not of any psychological origin, that it's not the result of being "overly stressed" and "unhappy", acceptance that it exists, particularly by the medical profession, disability agencies, other government agencies, and social institutions down to the family unit. The dangers of death and destruction to us must be understood and the damage that continues to be done by the worldwide prejudice against those who have ME/CFS is as bad and at times even worse than the racial Injustice that has gained so much attention in the United States over this past summer (yes, I went there). Just like that racial Injustice, this needs to stop and the only way we're going to do that is to get the education and understanding of this disease to be on par with that of all other diseases. That truly is what is lacking here.

ME/CFS, while statistically occurring in larger numbers of women, is as you can see by the comments an equal opportunity disease. Any awareness and any understanding of this devastating illness will require the acknowledgment that men suffer just as visibly and excruciatingly as women and are shamed and disbelieved just as much, the only difference being that while women are looked upon as being submissive and hysterical, men with this disease tend to be looked down upon as being psychologically weak and impotent. When men try to fight for their own self-worth with this disease, they tend to be seen as aggressors and will invoke hostile reactions when completely unwarranted. The greatest need for ME/CFS - aside from the obvious further increased funding and expansion of research centers and staff is above all else a societal validation, awareness, and understanding - a recognition that the disease is physical and real and not of any psychological origin, that it's not the result of being "overly stressed" and "unhappy", acceptance that it exists, particularly by the medical profession, disability agencies, other government agencies, and social institutions down to the family unit. The dangers of death and destruction to us must be understood and the damage that continues to be done by the worldwide prejudice against those who have ME/CFS is as bad and at times even worse than the racial Injustice that has gained so much attention in the United States over this past summer (yes, I went there). Just like that racial Injustice, this needs to stop and the only way we're going to do that is to get the education and understanding of this disease to be on par with that of all other diseases. That truly is what is lacking here. Here is my own personal war story: https://www.usnews.com/news/best-states/wisconsin/articles/2019-11-16/western-wisconsin-residents-struggle-with-chronic-illness?context=amp

I have over 30 years of medically documented disability with CFS and yet I still have to weed out providers that roll their eyes with polite benign neglect! If they had taken us seriously back in the 1980's & 90's with the first clusters that were trying to be taken seriously how much more could they have been prepared for COVID 19? So much for letting the INSURANCE INDUSTRY DICTATE OUR MEDICAL CARE! We have to call out the prevalence of POLITICAL SPECIAL INTERESTS that effect the quality and accessibility of healthcare in the US.

Millions of us lost not being able to live up to our potential. What a waste. We desperately need help.

I am 40 years old. I had a successful career, I used to be a runner and loved anything outdoors...now, on disability, raising a 5yr old and 3 year old I am lucky to leave the house for an hour. Please address this very real disease.