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

Totally support this - have total empathy with long COVID patients (as somebody who has been disabled for 30 years with zero healthcare, now bed bound) - and I am also a strong advocate of health equity and healthcare equity. Such equity clearly does not exist, and the media have a role to play here. It is shameful how people with ME have been ignored and vilified by the media for decades (with the odd tokenistic piece). Show some intellectual courage!

I strongly support this petition and it’s cause.

Very well written, makes a start on what us with ME have to deal with.

I’ve lived like this for 10 years after a viral trigger , I was diagnosed with m.e , discharged and that’s the last thing a dr ever done to help me

Ich habe Beschwerde beim EUGH für Menschenrechte eingereicht.

Make it feel like we matter

I've had ME for over 14 years now. Gone from being a marathon runner and more, to needing a mobility scooter when I leave the house. Take heed of the lessons we have learned. ME is real.

Ignored by doctors, therefore no help or support with medical treatment for CFS or other associated conditions. Despicable!!

You should take notice of what is being said here. There are millions of us worldwide who have been struggling with this disease for decades. People with Long Covid should realise that their illness could be our illness. They should also know that whenever they try to get back to their normal lives, they may find their symptoms exacerbate. That is the core symptom of Post Exertional Malaise (PEM) which is typical of ME. For 25% of people (severe sufferers) this could be as little as going to the loo or taking a shower.

Long haulers is kit new to COVID. Please shed light on ME - millions live with it.

Myalgic Encephalomyelitis is a devastating illness with no current treatment, and is frequently associated with post viral symptoms. The CDC and the NIH has been aware of this illness since the Lake Tahoe outbreak in 1984. Many of the people with Covid-19 have/ will experience long term post viral symptoms like Myalgic Encephalomyelitis. Please read “ Oslers Web” by Hillary Johnson ( 1996), which documents the struggle that patients have faced with this illness. Excellent video documentaries are “ I Remember Me” by Kim Snyder and “ Forgotten Plague: M.E. and the Future of Medicine” by Ryan Prior and The Blue Ribbon Foundation.

I have had ME for 41 years, after an EBV viral infection. Here's a tip - patients with SARS also ended up with me as well. BECAUSE ANY VIRAL INFECTION CAN DO THIS TO SOMEONE.

I have had CFS/ME since November 1987.

37+ years with ME. My son was born with ME and died at age 23 with viral myocarditis. He was a trooper. I would not wish this disease on anyone. The symptoms are disabling. I left teaching in 1987, too sick to climb the stairs to my classroom. I tried. If long haulers have anything like ME, it would be horrid for their families and a huge, I mean hide economic loss, not only loss of people in the workforce, but thousands needing long term disability. AS I watch the pandemic at age 71, I think back to when I was running up the stairs at my high school building. Those were good times. My life is better than most, now, but I can barely walk a block without the onset of weakness and pain. I manage. WIll the long haulers manage?

I had Mononucliosis at 18 and have been sick for the last 48 years with ME/CFS. It robbed me of my life, career, friends and family. No quality of life when the medical system shuns you. Post viral diseases are REAL and disabling for a lifetime. Yet is not seen as worthy of research because many of these illnesses effect majority women.

I used to practice law and now I can barely hold a basic part time work and struggle to function. Please help amplify the voices of the Millions Missing.

My son has not left his bed in 9 months after steadily declining health over nearly ten years. He cannot bear light or sound or any input like talking. He can’t watch TV or look out the window. His suffering has brought him to contemplate suicide regularly. The lack of awareness of ME is criminal. Please help share our stories!

I have Severe ME/CFS

Stop treating post-viral illness like a new phenomenon. We have been here the whole time.

I have moderate ME. I was housebound for 3 years. Still disabled and probably will be for the rest of my life unless there is adequate research. Lost my career and most abilities.