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

I’ve suffered with ME/CFS for over 30 yrs.

Dear Mr. Cooper, I have had this disease for over 20 years, never received a diagnosis, because I couldn't afford to pursue it (costs thousands of dollars for tests), and have had to figure out everything on how to help myself and seek wellness completely by myself. Because the disability system is so difficult and restrictive, I have never been able to pursue that either. I have had to figure out a way to get myself better in order to work and support myself as a single woman. There are millions of us, and we need recognition and funding for a definitive test and a cure!

Please give our disease the attention that it deserves! ME/CFS has existed for decades and you haven’t done a story on it since the 80’s ! We are suffering as much as the individuals with long Covid

I have been sick with ME for more than ten years and bed-ridden for 7 years, unable to sit up for more than a few minutes a day. There is no help and support out there.

I've been suffering from ME/CFS since 1994. I went from being a constantly on the go, hard working single mother to being bedridden. The fact that medical professionals treated me like I had a mental issue rather than a medical disease was insult to injury. Even if you are fortunate enough to find a doctor that believes you, there are no treatments available (especially options covered by insurance). Several years back, my doctor prescribed me opioid pain medication which increased by quality of life dramatically. It helped alleviate some of my chronic pain, migraine headaches, and gynecologic pain. It also helped to clear my brain fog and helped to slow down my over active stomach. I had about 3 productive years. Then, somebody decided that opioids were a problem because SOME folks are abusing them, so we are going to yank those away from everyone (even those who have never abused them and always take them as prescribed) and punish doctors for prescribing them. It doesn't matter that chronic pain patients are left suffering, and their quality of life is in the toilet. Chronic pain patients, left with no options, began committing suicide left and right. But to those overseeing the opiate guidelines that was exceptable because again, there is a "war on opioids." ME/CFS patients are people who were once overachievers who are now just doing our best to survive. We are desperately holding out hope that there will be a cure in our lifetimes. This disease affects every aspect of our lives. It affects our families, our loved ones, our ability to be self sufficient and our ability to have the lives we once dreamed of. We matter. Please don't forget us.

I was a registered nurse for almost 15 years before I found out I have ME/CFS. By the time I found out, I suddenly and rapidly became severely effected and now currently bedridden for the last 21 months. ***I cannot tell you enough how badly this disease needs focus and attention by our government and it needs it NOW, especially with this current pandemic!!!*** There is absolutely a major disconnect in how these patients are being perceived in their experiences with this illness and it’s causing major harm by way of lack of treatment and care they need and deserve as there are some that have been waiting 40+ years for this awareness. Listen to their stories. We must act. My eyes are opened. Are yours?

Well done

Dear 60 minutes, It's the crime of the century and you are missing out on reporting it. A disease that leaves its victims unable to do the most basic things without suffering terrible, debilitating symptoms; one that has been known for 86 years and yet there is no cure nor treatment for it. It is only now, with the COVID-19 pandemic that this disease, Myalgic Encephalomyelitis (ME), is finally getting some attention. There needs to be more attention given to it. Much more. The similarities between ME and Long Haul Covid are all too frighteningly apparent; all too real to deny and yet, ME is horrifyingly overlooked and ignored by people who have an obligation to care. The inhuman and terrible ways that people with ME are persecuted, gaslighted, treated as though they have a psychosomatic condition rather than the biomedical disease they have, and all too often ignored is not only unconscionable but downright criminal. Yet it continues. It continues because there is a horrendous degree of sexism aimed at the victims of this disease, most of whom are women. Because most of the people diagnosed with ME are women, they are treated as though they are hysterical, the same way women with Multiple Sclerosis and Diabetes were treated in the late 19th and early 20th centuries, despite the fact that these are biomedical diseases. It continues because people like Francis Collins continue to lie and pretend to care when their actions tell a different story. Francis Collins claims that the NIH is greatly concerned about ME but yet he does not do anything to increase the funding for research from a pathetic 15 million dollars a year to something much more reasonable and right, given the devastating effects of this disease. When he is confronted by two female activists from MEAction during a peaceful demonstration during a proceedings back in March, a bigoted police officer bullied, harassed and threatened them with arrest before physically assaulting the spokesperson, who was in a

My caring, intelligent, talented daughters became ill with ME/CFS in middle school, they had bright futures ahead. They are still beacons of hope and courageously living as fully disabled adults. It took 5 years of having the severity of their illness denied to get an accurate diagnosis , medical professionals told them to remain fully engaged at school. This advice likely made them much worse due to the hallmark symptom of Post Exertional malaise. Those who suffer from me/CFS suffer from the lack of awareness and lack of funding, Terry Gross interviewed a young adult discussing forging a life with chronic illness. But Terry Gross referred to ME/CFS as “a disease that may or may not exit?” I feel the media ignores this very real illness because of the medical community’s lack of attention. Most medical schools don’t teach it. Please help to shed a light on this disease.

Long Covid and M.E are so strikingly similar yet millions of people go ignored. Please educate the masses on this disease. It may help shed light on long Covid at the same time.

Had this for 66years getting worse

Please hear our outcry! Our suffering and pain deserves attention, research, AND ANSWERS!

The way that Myalgic Encephalomyelitis is ignored, persecuted and out and out discriminated against by people in government, the medical community and society at large is not only unconscionable but downright criminal. It is a crime against humanity, a gross violation of human rights and I will not stand for it. Neither should anyone else. People like Francis Collins, the director of the National Institutes of Health, and Walter Koroshetz are guilty of crimes against humanity. For all their talk about being concerned for people with Myalgic Encephalomyelitis, they have done nothing to show that they care. They will not increase the funding on ME from a paltry 15 million dollars per year to where it really needs to be, which is at least 100 million dollars, preferably 250 million dollars per year. Any research done by the Open Medicine Foundation and others have been done by private grants as well as by donations from people, many of whom have Myalgic Encephalomyelitis. Does any other disease research rely on such a high level of private funding like ME does? What's more, they have done nothing to counter the grant reviewers' disgusting mockery of good ME research grant proposals written by good scientific researchers, such as Dr. Ronald Davis and others. This is a sick and twisted violation of the most basic human rights, rights guaranteed under the Constitution, common sense and basic human dignity. It is an absolute atrocity that people should even have to beg for the most basic of rights and needs, especially the need for compassion, proper medical care and help with funding for better research into such a devastating and cruel disease that takes away the basic ability of people to care for themselves and to do the most basic things of human living: eating, drinking, going to work, watching television, reading, and things that you and I take for granted. Most of those who have been diagnosed with this disease are women and as such, they have been gaslit, told

Dear 60 minutes, I wanted to reach out in regards to your recent news story about Long Covid. You said in your broadcast that it is a something that has never been seen before. Regrettably, that is not the case. There is a disease that has been around far longer than Long Covid and there is a terrifying link between the two. In fact, a great many people who get COVID-19 and Long Covid are going to get this terrible disease, which is called Myalgic Encephalomyeltis (ME), a disease that has been around for at least 86 years. Worse yet, because of the unbelievably disgusting and horrifying actions of people who know better but who are without conscience or humanity, there is no cure nor treatment for this disease. The way that Myalgic Encephalomyelitis is ignored, persecuted and out and out discriminated against by people in government, the medical community and society at large is not only unconscionable but downright criminal. It is a crime against humanity, a gross violation of human rights and I will not stand for it. Neither should anyone else. People like Francis Collins, the director of the National Institutes of Health, and Walter Koroshetz are guilty of crimes against humanity. For all their talk about being concerned for people with Myalgic Encephalomyelitis, they have done nothing to show that they care. They will not increase the funding on ME from a paltry 15 million dollars per year to where it really needs to be, which is at least 100 million dollars, preferably 250 million dollars per year. Any research done by research centers, such as the Open Medicine Foundation and others have been done by private grants as well as by donations from people, many of whom have Myalgic Encephalomyelitis. Does any other disease research rely on such a high level of private funding like ME does? 15 million dollars. That is all that is allocated for funding grants on research into ME. What's more, they have done nothing to counter the grant reviewers' disgusting mockery

Dear 60 minutes, I wanted to reach out in regards to your recent news story about Long Covid. You said in your broadcast that it is a something that has never been seen before. Regrettably, that is not the case. There is a disease that has been around far longer than Long Covid and there is a terrifying link between the two. In fact, a great many people who get COVID-19 and Long Covid are going to get this terrible disease, which is called Myalgic Encephalomyeltis (ME), a disease that has been around for at least 86 years. Worse yet, because of the unbelievably disgusting and horrifying actions of people who know better but who are without conscience or humanity, there is no cure nor treatment for this disease. The way that Myalgic Encephalomyelitis is ignored, persecuted and out and out discriminated against by people in government, the medical community and society at large is not only unconscionable but downright criminal. It is a crime against humanity, a gross violation of human rights and I will not stand for it. Neither should anyone else. People like Francis Collins, the director of the National Institutes of Health, and Walter Koroshetz are guilty of crimes against humanity. For all their talk about being concerned for people with Myalgic Encephalomyelitis, they have done nothing to show that they care. They will not increase the funding on ME from a paltry 15 million dollars per year to where it really needs to be, which is at least 100 million dollars, preferably 250 million dollars per year. Any research done by research centers, such as the Open Medicine Foundation and others have been done by private grants as well as by donations from people, many of whom have Myalgic Encephalomyelitis. Does any other disease research rely on such a high level of private funding like ME does? 15 million dollars. That is all that is allocated for funding grants on research into ME. What's more, they have done nothing to counter the grant reviewers' disgusting mockery

Dear 60 minutes, I wanted to reach out in regards to your recent news story about Long Covid. You said in your broadcast that it is a something that has never been seen before. Regrettably, that is not the case. There is a disease that has been around far longer than Long Covid and there is a terrifying link between the two. In fact, a great many people who get COVID-19 and Long Covid are going to get this terrible disease, which is called Myalgic Encephalomyeltis (ME), a disease that has been around for at least 86 years. Worse yet, because of the unbelievably disgusting and horrifying actions of people who know better but who are without conscience or humanity, there is no cure nor treatment for this disease. The way that Myalgic Encephalomyelitis is ignored, persecuted and out and out discriminated against by people in government, the medical community and society at large is not only unconscionable but downright criminal. It is a crime against humanity, a gross violation of human rights and I will not stand for it. Neither should anyone else. People like Francis Collins, the director of the National Institutes of Health, and Walter Koroshetz are guilty of crimes against humanity. For all their talk about being concerned for people with Myalgic Encephalomyelitis, they have done nothing to show that they care. They will not increase the funding on ME from a paltry 15 million dollars per year to where it really needs to be, which is at least 100 million dollars, preferably 250 million dollars per year. Any research done by research centers, such as the Open Medicine Foundation and others have been done by private grants as well as by donations from people, many of whom have Myalgic Encephalomyelitis. Does any other disease research rely on such a high level of private funding like ME does? 15 million dollars. That is all that is allocated for funding grants on research into ME. What's more, they have done nothing to counter the grant reviewers' disgusting mockery

Dear 60 minutes, I wanted to reach out in regards to your recent news story about Long Covid. You said in your broadcast that it is a something that has never been seen before. Regrettably, that is not the case. There is a disease that has been around far longer than Long Covid and there is a terrifying link between the two. In fact, a great many people who get COVID-19 and Long Covid are going to get this terrible disease, which is called Myalgic Encephalomyeltis (ME), a disease that has been around for at least 86 years. Worse yet, because of the unbelievably disgusting and horrifying actions of people who know better but who are without conscience or humanity, there is no cure nor treatment for this disease. The way that Myalgic Encephalomyelitis is ignored, persecuted and out and out discriminated against by people in government, the medical community and society at large is not only unconscionable but downright criminal. It is a crime against humanity, a gross violation of human rights and I will not stand for it. Neither should anyone else. People like Francis Collins, the director of the National Institutes of Health, and Walter Koroshetz are guilty of crimes against humanity. For all their talk about being concerned for people with Myalgic Encephalomyelitis, they have done nothing to show that they care. They will not increase the funding on ME from a paltry 15 million dollars per year to where it really needs to be, which is at least 100 million dollars, preferably 250 million dollars per year. Any research done by research centers, such as the Open Medicine Foundation and others have been done by private grants as well as by donations from people, many of whom have Myalgic Encephalomyelitis. Does any other disease research rely on such a high level of private funding like ME does? 15 million dollars. That is all that is allocated for funding grants on research into ME. What's more, they have done nothing to counter the grant reviewers' disgusting mockery

I have me/cfs it's such a deliberately awful illness, there is not enough acknowledgement by health professionals for this and it's awful to live with!

I’m signing this petition because ME is a real illness that doesn’t get enough coverage in the media. This illness was here a lot longer than the Covid long haulers. I’m sad for each of those people who are struggling.

Let CFS/ME be as important to understand/review as long COVID. It’s frustrating to see something much newer be given so much attention when very similar longer term condition has largely been ignored or ridiculed making those who are suffering feel marginalised and unimportant.