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

I’ve been fighting this illness for 23 years with no real improvement. We deserve better.

Good luck thank so much for doing this xxx

ME is the most life destroying of all chronic diseases. I organise a clinic for people with ME and now Long Covid and the consultant of infectious diseases says without doubt that Post Covid Syndrome IS ME in those Long Haulers he has seen so far. To ignore ME, is to ignore Post Covid. For 50 years the patients of this devastating, life-destroying disease have been ignored, dismissed vilified, treated with contempt and harmed by medics. The media, by failing to research the illness ,has continued to seriously misrepresent these often bedridden people who lose their lives to this disease and barely exist in darkened rooms, many in very severe pain.Both medics and the media are on the wrong side of history and they urgently need to remedy the situation they have helped create by accurate reporting to draw attention to the 65 million people , including large numbers of children, suffering without support and treatment with this disease, which is often called 'the living death'.

Whilst the media talk about long covid isn't it time m.e /cfs sufferers were acknowledged and the lack of research funding highlighted?

please hear our story - it is more valuable than ever, with the huge number of COVID sufferers and a % becoming long-haulers our experience may save others from this misery

ME/CFS is a debilitating medical illness Society including much of the medical community remain ignorant to the experience and suffering of so many people all over the world

ME (Myalgic Encephalomyelitis; aka Chronic Fatigue Syndrome") has officially been documented for 86 yrs.  It has been recognized as a neurological illness by the WHO for 51 yrs.  Yet doctors say theyve never heard of it before? Its estimated that between 15-30 million people worldwide have ME.  25% are so severely affected they are housebound or bedbound.  The extremely severe are tube fed and paralyzed.  Some have died of ME, like Sophia Mirza who died at the age of 32 and Merryn Crofts who died at the age of 21. Most people develop ME after a viral infection. Just like people are developing long haul Covid after being sick with Covid.  ME is a serious neuroimmune illness that affects multiple systems in the body, incl the mitochondria in our cells which create energy.  We are forced into a severe energy deficit by this disease and are profoundly disabled as a result. I got ME after a mild viral infection in October 2016.  Each yr I progressively get worse.  Im now severe/very severe, bedbound, except for going to the bathroom.  Severely sound intolerant, light sensitive, cant take a shower, sit up to eat, or listen to music.  Im forced to live in the dark silence.  I get no medical care or treatment for my illness.  Millions of people worldwide have gotten sick with ME after a virus, and are left sick and profoundly disabled their ENTIRE LIVES.  And yet our severe neuroimmune illness caused by a virus is ignored, swept under the rug, like we dont exist??  And we have to hear on 60 Minutes the outright lie that drs "have never seen anything like this before". They have seen it for 86 yrs!  86 yrs of untold misery, suffering, death.  Suicide is the #1 cause of death for ppl with ME.  Its impossible to convey the extent of the suffering, the depth of despair and hopelessness this disease inflicts on us.  We are treated like hypochondriacs, malingerers, criminals by drs, friends, family and society bc we are severely ill with a serious neuroimmune dis

I've been an ME/CFS victim for 6 years now. This illness, the exact same thing as long COVID is not new. Do not continue to ignore. Acknowledgement of and research for both must proceed as one.

I have had ME/CFS since I was in University and had to quit my studies. I didn't know at that time but when diagnosed in 1995 all made sense. My life has been destroyed by the fatigue where you are limited or unable to take care of yourself, finances, relationships, daily living, employment challenges. WE have a vaccin for COVID in 10 months but we are unable to find cures, etc. for (cancers, ME/CFS and other diseases).

Please discuss

ME/CFS is a dreadful debilitating disease and we need to draw attention to it.

Please help educate people!!!

Please bring awareness to this terrible illness.

I have myalgic encephalomyelitis

ME needs to become a known illness with aggressive research to help the millions that suffer worldwide.

Please help us. CFS/ME is real and needs regonition!

Its a terrible illness and not recognised by the medical profession. My daughter is bed-bound for past 4 years

I've had M.E. for almost 21 yrs now. My life changed forever on the 17/01/2000, when I got glandular fever for a 2nd time. I was 26, and have never been able to work proprrly since. I had no idea then, that in my early 40's my husband would be pushing me in a wheelchair, and that I would spend most my time housebound, and in bed, taking over 20tablets a day to try and not be in constant excruciating pain. Wishing I could have even ½ the energy and stamina of my 81yr old father. This illness steals your energy, your health, your friends and your dreams. We are the forgotten, the missing, the misunderstood, and, it could happen to you.

It's about 20 yrs too late.But let's not hope die.

I was dx at 15 I’m now 29, this is a terrible illness, Iv lost hope. We’re being swept under the rug and forgotten. We keep adding names to syndromes instead of focusing resources on one that over laps the many of those syndromes cfs. We need help I’m thinking hard on checking out, Iv been hanging on because Covid-19 was estimated to cause cfs, but now that it has there getting called covid long haulers instead of dysautonomia and cfs witch there symptoms fall under.