The producers finally cracked and greenlit a deep dive into the ME/CFS crisis after months of relentless pressure. They ignored us for years but they could not hide from the 970 of you who refused to let them sleep. Now we watch them like hawks to ensure they actually report …
December 30, 2020
Final supporters
PHOTO: COURTESY OF ME/ACTION MILLION'S MISSING CAMPAIGN. On November 22nd, 2020 60 Minutes anchor Anderson Cooper aired a segment in which he interviewed several different people and physicians who are dealing with or treating Long Covid symptoms - now known in medical circles as Post-Acute Covid-19. Cooper on behalf of 60 Minutes, made no mention of ME/CFS. Similar things have occurred during segments on CNBC, CNN, and others. It is about time that we in the ME/CFS Community finally speak up and let Media outlets know that we are tired of being forgotten and left behind and that it is long overdue for a comprehensive, truthful, and respectful media report to be broadcast nationally on a show like 60 Minutes, Dateline, 20/20, in addition to possible others like the Today Show, Good Morning America, CBS This Morning, Fox and Friends, Nightly News, and Sunday news shows. I have attached a letter I've written for your signature on this petition. I will be sending this petition off to as many news outlets as possible over the coming weeks/months to see if I can garner a response:
To Whom It May Concern (generic title, will be properly addressed when sending out),
60-Minutes aired a November 22nd segment on Post-Acute Covid-19 I found very revealing. First of all - as someone who has personally watched this segment, I want to begin by saying my HEART GOES OUT TO ALL of the people in that segment who are suffering from this unmitigated torture. Having said that, I want to bring the attention of the national and world media to the real story behind the story. That is, that this report by Anderson Cooper, while very informative and heart-rending, has completely and thoroughly ignored an entire group of people in the United States and around the world who are barely surviving a disease that is completely similar to the Covid-19 Post-Acute symptoms so tragically and amply demonstrated in that piece - a disease just as puzzling in onset, symptom pattern, suffering, and lack of answers. I'm talking about ME/CFS, or as it is known in the United States - chronic fatigue syndrome. I have tried to contact 60 Minutes regarding this omission and the plight of many, many others who are readily available to tell their stories and demonstrate their struggles in any Facebook support group just like the Covid-19 Survivor Corps, but they so far, like other media outlets, medical centers, and the like, choose to ignore us. It is about time that, that changes.
Before I go on further and lest you tune me out immediately, I want to strongly emphasize here that this is not a fake disease nor is it a rare disease. The World Health Organization has recognized myalgic encephalomyelitis as a neurological condition since 1969. The Centers for Disease Control finally recognized it in the US in 2015, after the Academies of Medicine made a sweeping statement declaring it a serious biological disease that cries out for awareness and understanding, and releasing a 304 page book titled Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Redefining An Illness. The World Health Organization estimates for the disease population are conservatively listed at 17 to 24 million, with up to 2.5 million of those in the United States. Since that time, slowly intensifying research in the United States has continued to reveal ME/CFS to be a multi-system disease that involves a strongly abnormal immune response whereby the body shuts down, in many cases after some kind of viral or bacterial infection. Sound familiar?
I cannot tell you in this one email how much EVERYTHING that these people who were featured in that 60 Minutes Long Haul segment mimic exactly what myself and millions -- yes **MILLIONS** of diagnosed and undiagnosed people around the world are going through and have gone through on a daily basis - down to the lack of awareness at onset, the stone-faced denials following the wanton destruction of their own physical health, and then the cruel, unmitigated shock of their worlds crumbling under a blazing inferno of pain, rejection, and a never-allaying pattern of symptom crashes. They are living in darkness and wished away in every country of the world. They fill patient groups all over Facebook, just like Survivor Corps. It would take a book to describe the horrible treatment and rejection I’ve gone through. Investigative reporting programs like 60 Minutes should have done stories like Cooper’s a long time ago on this, questioning why people who are buried in such wretched horror are being completely ignored in every single civilized society. Sam Donaldson aired a piece on Primetime Live in 1996, The Golden Girls aired an episode where Bea Arthur’s character on the show was struggling from chronic fatigue syndrome, mimicking the struggles of the show’s actual creator; CNN did an online piece about genome research scientist Ron Davis of Stanford and his quest to free his debilitated son, and that is as close to the mainstream that any coverage has ever gotten. Other inroads have never been made. The 60 Minutes, 20/20s, and the Datelines of the world have refused to show any further journalistic endeavor - or questioning as to why it is the tortured lives of endless numbers of people have gone on summarily dismissed by numerous doctors, governments, and disability systems. Even Dr Fauci suggested during a July 9 press conference that "long-haul" Covid is "highly suggestive" of myalgic encephalomyelitis. Nobody in the press corps batted an eyelash.
I'm not a producer, I'm not a journalist, I'm not an entertainment reporter, I don't even write for tabloids but I can throw you the pitch that would go into the tease of the story - it would go something like this - “Millions of people around the world are crippled by a disease so devastating they can't even get out of bed. Why haven't you heard of it?” It would not be a stretch to find the easy angle to this story especially in light of Post-Acute Covid-19.
I understand all the jargon, about how you get a high volume of mail, “blah blah blah blah blah; therefore, we can't answer everything blah blah blah blah blah” but the same old excuses are no longer cutting it in regard to ME/CFS The amount of evidence that demonstrates this is a real disease that maims, tortures, and even kills and has been going on for decades, likely centuries is so momentous that it is truly scandalous for a program like 60 Minutes or yourself to continue to ignore it. Just ask the research centers at Stanford and Columbia University, who in conjunction with the CDC and NIH are looking into this very disease right now as you are sitting here reading this. Just ask the Workwell Foundation in California that conducts scientifically-proven disability studies on CPET testing that demonstrates the existence of post-exertional malaise. The few physician experts in the ME/CFS Universe released this letter in September, signed by their coalition explaining their belief in the link between Post-Acute Covid-19 and ME/CFS.
Anderson Cooper stated in the opening of that segment “Doctors tell us they have never seen anything like this. While researchers around the world are scrambling to figure out what’s happening. . .” He’s right – it’s been under their noses for decades and they've just chosen not to see it. If ME/CFS had been thoroughly regarded and researched long ago, this would not be such a baffling, tragic mystery. The hidden and disparate voices of the ME/CFS Community back me up on this and amply demonstrate that our struggles, our pain, our rejection, and our voices are real.
Here is a link to my own background story on ME/CFS -
https://www.usnews.com/news/best-states/wisconsin/...
Contact me if you want to talk further about this,
Scott Schneider, ME/CFS advocate.
Email: [email protected]
PH: 715-318-4663
SUPPORTING LINKS -
National Academies of Medicine (previously IOM) announcement 2015: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
National Academies of Medicine (previously IOM) basic ME/CFS fact sheet: https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf
The CDC website:
https://www.cdc.gov/me-cfs/index.html
NIH Website:
https://medlineplus.gov/chronicfatiguesyndrome.html
Health and Human Services Office of Women's Health:
https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome
Open Medicine Foundation (research arm for ME/CFS):
https://www.omf.ngo/what-is-mecfs/
New York State Association of Family Physicians Winter 2018 Article:
http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf#page=23
Pediatric CFS:
https://www.omf.ngo/wp-content/uploads/2018/07/ME-in-Children-Dr-David-Bell.pdf
NIH (National Institutes of Health) Categorical Spending for Diseases 2019:
https://report.nih.gov/categorical_spending.aspx
WORKWELL FOUNDATION (Post-exertional malaise, defining and distinguishing hallmark symptom of ME/CFS )
https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
Updates
Reached 500 supporters
December 7, 2020
December 6, 2020
The major networks think they can keep ignoring our reality but the momentum we have built proves they are officially on notice. We are finished letting these news giants pretend our community does not exist while they handpick the stories that fit their narrow narratives.
Reached 100 supporters
December 4, 2020
316 Comments
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 22 year old son has been suffering with ME/CFS for 6 years. He has missed most of high school and all of college as a “normal” student. He so desperately wants and deserves his life back. What if this were your son? PLEASE highlight this awful and debilitating disease.
I've been living with M.E. since 1977. I collapsed with mono at the age of 20 and never got well. I am one of millions worldwide whose struggles with this horrid illness have been either dismissed as psychological or completely ignored. It's shameful.
I've had ME for over three decades but only diagnosed in 2016. I'm one of 600,000 Canadians with MEcfs. We need to be heard and seen and we need research and treatment options. Our illness is real and affects more people in Canada than MS, Parkinson's and HIV combined.
I have been battling with M. E AND FIBROMYALGIA for 30 years the treatment I was given made me worse (CBT and GET therapy) I am now unable to work and rely on my husband who is now my carer, this illness has ruined my once very active life. OUR VOICES NEED TO BE HEARD
Help
All responsible reporting on ‘long COVID’ should include history on ME/CFS and related post-viral illness.
Share this petition
Share this petition to help it reach more people.
Your share link
The producers finally cracked and greenlit a deep dive into the ME/CFS crisis after months of relentless pressure. They ignored us for years but they could not hide from the 970 of you who refused to let them sleep. Now we watch them like hawks to ensure they actually report …
December 30, 2020
Final supporters
PHOTO: COURTESY OF ME/ACTION MILLION'S MISSING CAMPAIGN. On November 22nd, 2020 60 Minutes anchor Anderson Cooper aired a segment in which he interviewed several different people and physicians who are dealing with or treating Long Covid symptoms - now known in medical circles as Post-Acute Covid-19. Cooper on behalf of 60 Minutes, made no mention of ME/CFS. Similar things have occurred during segments on CNBC, CNN, and others. It is about time that we in the ME/CFS Community finally speak up and let Media outlets know that we are tired of being forgotten and left behind and that it is long overdue for a comprehensive, truthful, and respectful media report to be broadcast nationally on a show like 60 Minutes, Dateline, 20/20, in addition to possible others like the Today Show, Good Morning America, CBS This Morning, Fox and Friends, Nightly News, and Sunday news shows. I have attached a letter I've written for your signature on this petition. I will be sending this petition off to as many news outlets as possible over the coming weeks/months to see if I can garner a response:
To Whom It May Concern (generic title, will be properly addressed when sending out),
60-Minutes aired a November 22nd segment on Post-Acute Covid-19 I found very revealing. First of all - as someone who has personally watched this segment, I want to begin by saying my HEART GOES OUT TO ALL of the people in that segment who are suffering from this unmitigated torture. Having said that, I want to bring the attention of the national and world media to the real story behind the story. That is, that this report by Anderson Cooper, while very informative and heart-rending, has completely and thoroughly ignored an entire group of people in the United States and around the world who are barely surviving a disease that is completely similar to the Covid-19 Post-Acute symptoms so tragically and amply demonstrated in that piece - a disease just as puzzling in onset, symptom pattern, suffering, and lack of answers. I'm talking about ME/CFS, or as it is known in the United States - chronic fatigue syndrome. I have tried to contact 60 Minutes regarding this omission and the plight of many, many others who are readily available to tell their stories and demonstrate their struggles in any Facebook support group just like the Covid-19 Survivor Corps, but they so far, like other media outlets, medical centers, and the like, choose to ignore us. It is about time that, that changes.
Before I go on further and lest you tune me out immediately, I want to strongly emphasize here that this is not a fake disease nor is it a rare disease. The World Health Organization has recognized myalgic encephalomyelitis as a neurological condition since 1969. The Centers for Disease Control finally recognized it in the US in 2015, after the Academies of Medicine made a sweeping statement declaring it a serious biological disease that cries out for awareness and understanding, and releasing a 304 page book titled Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Redefining An Illness. The World Health Organization estimates for the disease population are conservatively listed at 17 to 24 million, with up to 2.5 million of those in the United States. Since that time, slowly intensifying research in the United States has continued to reveal ME/CFS to be a multi-system disease that involves a strongly abnormal immune response whereby the body shuts down, in many cases after some kind of viral or bacterial infection. Sound familiar?
I cannot tell you in this one email how much EVERYTHING that these people who were featured in that 60 Minutes Long Haul segment mimic exactly what myself and millions -- yes **MILLIONS** of diagnosed and undiagnosed people around the world are going through and have gone through on a daily basis - down to the lack of awareness at onset, the stone-faced denials following the wanton destruction of their own physical health, and then the cruel, unmitigated shock of their worlds crumbling under a blazing inferno of pain, rejection, and a never-allaying pattern of symptom crashes. They are living in darkness and wished away in every country of the world. They fill patient groups all over Facebook, just like Survivor Corps. It would take a book to describe the horrible treatment and rejection I’ve gone through. Investigative reporting programs like 60 Minutes should have done stories like Cooper’s a long time ago on this, questioning why people who are buried in such wretched horror are being completely ignored in every single civilized society. Sam Donaldson aired a piece on Primetime Live in 1996, The Golden Girls aired an episode where Bea Arthur’s character on the show was struggling from chronic fatigue syndrome, mimicking the struggles of the show’s actual creator; CNN did an online piece about genome research scientist Ron Davis of Stanford and his quest to free his debilitated son, and that is as close to the mainstream that any coverage has ever gotten. Other inroads have never been made. The 60 Minutes, 20/20s, and the Datelines of the world have refused to show any further journalistic endeavor - or questioning as to why it is the tortured lives of endless numbers of people have gone on summarily dismissed by numerous doctors, governments, and disability systems. Even Dr Fauci suggested during a July 9 press conference that "long-haul" Covid is "highly suggestive" of myalgic encephalomyelitis. Nobody in the press corps batted an eyelash.
I'm not a producer, I'm not a journalist, I'm not an entertainment reporter, I don't even write for tabloids but I can throw you the pitch that would go into the tease of the story - it would go something like this - “Millions of people around the world are crippled by a disease so devastating they can't even get out of bed. Why haven't you heard of it?” It would not be a stretch to find the easy angle to this story especially in light of Post-Acute Covid-19.
I understand all the jargon, about how you get a high volume of mail, “blah blah blah blah blah; therefore, we can't answer everything blah blah blah blah blah” but the same old excuses are no longer cutting it in regard to ME/CFS The amount of evidence that demonstrates this is a real disease that maims, tortures, and even kills and has been going on for decades, likely centuries is so momentous that it is truly scandalous for a program like 60 Minutes or yourself to continue to ignore it. Just ask the research centers at Stanford and Columbia University, who in conjunction with the CDC and NIH are looking into this very disease right now as you are sitting here reading this. Just ask the Workwell Foundation in California that conducts scientifically-proven disability studies on CPET testing that demonstrates the existence of post-exertional malaise. The few physician experts in the ME/CFS Universe released this letter in September, signed by their coalition explaining their belief in the link between Post-Acute Covid-19 and ME/CFS.
Anderson Cooper stated in the opening of that segment “Doctors tell us they have never seen anything like this. While researchers around the world are scrambling to figure out what’s happening. . .” He’s right – it’s been under their noses for decades and they've just chosen not to see it. If ME/CFS had been thoroughly regarded and researched long ago, this would not be such a baffling, tragic mystery. The hidden and disparate voices of the ME/CFS Community back me up on this and amply demonstrate that our struggles, our pain, our rejection, and our voices are real.
Here is a link to my own background story on ME/CFS -
https://www.usnews.com/news/best-states/wisconsin/...
Contact me if you want to talk further about this,
Scott Schneider, ME/CFS advocate.
Email: [email protected]
PH: 715-318-4663
SUPPORTING LINKS -
National Academies of Medicine (previously IOM) announcement 2015: https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html
National Academies of Medicine (previously IOM) basic ME/CFS fact sheet: https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf
The CDC website:
https://www.cdc.gov/me-cfs/index.html
NIH Website:
https://medlineplus.gov/chronicfatiguesyndrome.html
Health and Human Services Office of Women's Health:
https://www.womenshealth.gov/a-z-topics/chronic-fatigue-syndrome
Open Medicine Foundation (research arm for ME/CFS):
https://www.omf.ngo/what-is-mecfs/
New York State Association of Family Physicians Winter 2018 Article:
http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf#page=23
Pediatric CFS:
https://www.omf.ngo/wp-content/uploads/2018/07/ME-in-Children-Dr-David-Bell.pdf
NIH (National Institutes of Health) Categorical Spending for Diseases 2019:
https://report.nih.gov/categorical_spending.aspx
WORKWELL FOUNDATION (Post-exertional malaise, defining and distinguishing hallmark symptom of ME/CFS )
https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
Updates
Reached 500 supporters
December 7, 2020
December 6, 2020
The major networks think they can keep ignoring our reality but the momentum we have built proves they are officially on notice. We are finished letting these news giants pretend our community does not exist while they handpick the stories that fit their narrow narratives.
Reached 100 supporters
December 4, 2020
316 Comments
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.
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 22 year old son has been suffering with ME/CFS for 6 years. He has missed most of high school and all of college as a “normal” student. He so desperately wants and deserves his life back. What if this were your son? PLEASE highlight this awful and debilitating disease.
I've been living with M.E. since 1977. I collapsed with mono at the age of 20 and never got well. I am one of millions worldwide whose struggles with this horrid illness have been either dismissed as psychological or completely ignored. It's shameful.
I've had ME for over three decades but only diagnosed in 2016. I'm one of 600,000 Canadians with MEcfs. We need to be heard and seen and we need research and treatment options. Our illness is real and affects more people in Canada than MS, Parkinson's and HIV combined.
I have been battling with M. E AND FIBROMYALGIA for 30 years the treatment I was given made me worse (CBT and GET therapy) I am now unable to work and rely on my husband who is now my carer, this illness has ruined my once very active life. OUR VOICES NEED TO BE HEARD
Help
All responsible reporting on ‘long COVID’ should include history on ME/CFS and related post-viral illness.
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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.