John Oliver, please talk about ME/CFS Funding!
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For those of you not familiar with “Last Week Tonight with John Oliver” – it has become a huge hit! It is seen as the replacement for “The Daily Show with Jon Stewart”. Last Week Tonight is a weekly news comedy show but it is very respected and influential. Just to have him do a piece on the lack of ME/CFS funding in general would be huge in terms of raising awareness for our disease!
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17 thoughts on “Get ME/CFS on HBO's "Last Night Tonight with John Oliver"”
This is such a good idea. I know John OLiver does his homework and would do us justice. Today is my 6 year “illiversay” with severe ME and My family and I have been through it all. As my kids get older I desperately want them to have the mom they deserve! I’d be so willing to talk to his people and tell my story!
Myalgic Encephalomyelitis or “ME” is one of those diseases that people tend to laugh at but it affects approx 20 thousand people world wide. This number is likely on the short side. There is no known cause, no standard of treatment and no cure. 25% of patients are severely ill to the point where they must be tube fed and live in one room because they cannot get out of bed. The name Myalgic Encephalomyelitis is Latin for muscle pain with inflammation of the brain and spinal cord. ME is a very complex disease with no 2 patients exactly the same in their envelope of symptoms with degree of over exertion. Our illness cannot be seen with the uninformed eye but I’m sure if you offered someone with ME the choice of Cancer or ME we would choose cancer.
I have had ME for 26 years and have to admit it is more difficult to deal with than the Breast Cancer I had last year. I sailed through that and will be monitored annually. I thought the answer to my ME had been found when Cancer was diagnosed but not so. Being a very upbeat and positive person, my Cancer specialist questioned the diagnosis of ME since so much has been made of it being an abnormal illness belief. Now the psychiatric lobby are saying it would be a travesty if the Cancer drug Rituximab were not further trialled on ME patients. Let’s hope the answer is there and that this awful illness can be acknowledged and reversed.
I think you mend to say aprox. thousand times twenty thousand 😉
Please! I used to run marathons and was an active mom to my kids before getting sick 8 years ago. I had a master’s in education. At this point, I’m so sick that I leave the house about 3 times a week, mostly for medical and education appointments for my family, and spend 20 hours a day in bed, lightheaded, weak, unable to concentrate, and in pain from light and sound. I WANT to do more, but I’m physically unable to.
It breaks my heart to think this disease that has taken my life is considered so unimportant that congress would eliminate the allocation for it. We’re already funded less than almost any other illness. Please help, John Oliver! Thank you.
There doesn’t appear to be anywhere to “like” this? Or I can’t find it. I wrote a comment though.
I kept looking at the top of the comments but there’s the option to “Like” down at the bottom. I found it and attached a screenshot here: Screenshot of Like Button so that you can hopefully find it too. Thanks for commenting!
Thanks Rachael! It looks like my phone is the problem. I’ll fire up the laptop in a bit:)
this is exactly the kind of story john would cover we made front page with our #SevereME spamming the other day that I’m sure we can do it again. I’m going to see if I can get my twitter friends to start bugging him. what a great idea! thanks user SH 4CFS!
This illness effects 5 million Americans and 20 million people worldwide. It has been recognized by the WHO as an illness since the 1950s and the CDC acknowledges its existence and yet the U.S. Congress flatly refuses to give NIH the $250 Million a year to find a cure yet they seem to have no problem giving Panasonic $150 BILLION to build some building for their company. Anyone else see something terribly hypocritical about this picture? I too suffer from MECFS and have put my whole future on hold due to this dreadful and deadly illness. Here’s my story:
Please help us spread awareness and find a cure before more people die and this becomes an epidemic. Thank you.
Please John will you talk about M.E., Myalgic Encephalomyelitis. It is a neurological illness, with immune dysfunction, which affects all bodily systems. Like other illnesses, there are a few different categories of M.E., ranging from mild to very severe. Those with very severe M.E. are bedridden 24/7, unable to care for even their most basic care and some are tube fed.
Experts have stated clearly that it is one of the worst illnesses that a person can get and yet it is treated like a damn wart on your hand! On a Quality of Life scale, it has been shown to be the worst illness, worse than heart disease and other very serious illnesses.
M.E. has been maligned and made fun of by doctors, media and even comedians! If they, or anybody they knew had it, they wouldn’t behave this way, for sure!!!
The American powers-that-be made a conscious decision to denigrate it by calling it CFS (Chronic Fatigue Syndrome). The least of our problems is fatigue!!! The psychiatrists in the U.K. and elsewhere have made their living off of it, causing patients to go from moderate to severe or very severe with their “therapy”, Graded Exercise Therapy” and pumping patients with antidepressants, etc., when this is a physical illness!
A young lady in Denmark, Karina Hansen, who was bed ridden with very severe M.E., was taken from her home & committed to an institution by psychiatrists and the Health authority, her family unable to see her. That was two and a half years ago and nobody knows how Karina is.
So, please, do talk about M.E., the real M.E. The ICC (International Consensus Criteria) is a good report to look at. It was compiled by 26 world-renowned experts. We need HELP. After more than 28 years of this debilitating illness, it’s beyond time that proper media coverage was done.
What has been done to patients with M.E. will go down in history along with other abuses perpetrated by governments and their agencies.
I think this is such a fantastic idea. We need so much more awareness and funding for research into ME. I myself have this illness and I am housebound due to pain,exhaustion and my body feels like it has shut down on me not to mention the headaches,recurrent infections,sensitivity to light and noise the list goes on. The drugs we are given do not help us and just make us more ill. We need vital funds foe research because there isn’t any so we are just left alone. I am 32 and have a 9 year old son I am to ill to look after him or even myself alot of the time. Please help us get the funding we desperately need we need a cure. This illness is very real and this illness robs you of everything you have. We need more than just hope now so please help us all get our body’s and life’s back. thankyou
I wonder if a better hook might not be to find the comedic aspects.
for example, the lukewarm support across the community for the senate’s decision to roll back funding.
tales of woe are not exactly the stuff of comedy programs.
Just realised a lot of people are commenting here. You have to click the red button above to bring you directly to the link. Then you have to register. Bit of a long process but worth it.
Daughter has been disabled for almost 20 years. No quality in her life. A mention by John Oliver could at least give hope to may some funding being done and give her some hope of an easing of some of the effects. Good idea to try this.
These guys would be brilliant too (Australian satarists on political issues):
Sorry ‘Everyone – I meant to say 20 million world wide suffer from Myalgic Encephalomyelitis. My apologies – I only said 20 thousand but that’s just a drop in the bucket.
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