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

I am one of the #millionsmissing.

I got an ME/CFS research group going in Vancouver because little research was being done to investigate neuroinflammation in the brain and brainstem. My ME/CFS was due to a car accident but BC healthcare missed torn cervical ligaments allowing brainstem compression. Stem cell PICL operation just might be curing my neck problems and my ME/CFS! Symptoms getting better at week 10. I’m hoping to get CTV’s W5 or CBC’s Go Public to cover this new stem cell treatment.

Please start realising the impact of having M.E for all of us millions missing from society. Too ill to participate in any usual activities and Occupations and housebound/ bedbound for years suffering in silence. Funding needs to be looked into urgently it’s about time we had some help/hope of recovery.

One of the main differences between Long Haulers and those of us with ME/CFS, is that they are given the dignity of acknowledgment. Even without a cure, acknowledgement or even a diagnosis becomes a gesture of compassion. It is devastating to wait years for a diagnosis (6years for me), to be so sick and still disbelieved and ostracized. It is heartbreaking to think of the multitudes who suffer in silence.

My daughter “disappeared” from her life at age 12. It is agony as a parent to watch your child suffer so horribly and have NOTHING you can do about it. Please help bring attention to this in hope of finding a cure!!!!

Let’s title it; Enough about you, what about ME

I have had ME/CFS for over 2 years now. It has ripped my life away from me. A smart young person with a nursing degree to me now someone who is disabled and unable to leave my home due to disabling excruciating fatigue that I cannot function in society. There needs to be more awareness so that we may have a fighting chance to one day get a treatment and recover.

ME - the ignored epidemic

The ME/CFS community made the connection between the COVID post viral syndrome as have the ME/CFS research centers. A 60 minutes segment on ME/CFS would bring more awareness, not just to the public, but also to treating physicians who often are unaware of the disease. This disease is so debilitating that a significant number of the millions who have it are unable to work. The economic impact of ME/CFS and of those who have the post-viral syndrome from COVID, will cost the USA billions. A 60 minute segment will bring the public awareness that is needed to spur funding for "warp speed" research. By doing a 60 minute segment on ME/CFS, CBS will be doing a service, not only to those with this disease, but also to those trying to recover from COVID and to the USA economy. It is hard to work when you are this ill.

Long term sufferer of 33 years fed up with being misunderstood.

It's been too long for ME sufferers and now that Covid 19 'Long Haulers speaking out about lingering symptoms its time we finally get a treatment and cure for this horrible disease.

Do the research and understand there are vital connections between ME/CFS and COVID long haulers and you’ll know there are already millions of patients to care for.

This letter echoes my feelings exactly.

Thank you for writing this. I ve been suffering for about 15yrs.

Suffering since 1984, still no doctor.

I have been struggling with ME/CFS for 15 years. Very similar to the long haulers.

Signing from UK. Please please find an answer/treatment to this dreadful disease.

My daughter has CFS

For almost 17 years I've had ME/CFS. It stole the best years of my life and ended my career at age 45. I look normal but cannot keep pace with others. After any activity my body will shut down with Post Exertional Malaise "PEM".

My husband has had post-viral ME/CFS for 30 years. We moved our family so he could participate in the only FDA treatment trial for a drug called Ampligen, which works for a subset of ME patients. Then FDA rejected the drug application. Research into treating post-viral diseases is abysmal, and it is why we do t know yet how to treat new “long Covid” patients. We must research treatment for both and the explosion of long covid is testament to why. 60 Minutes, please share our story with the longhaulers, and uncover the need to fund research for chronic neuro-immune disease.