Want people to get that ME/CFS is a serious illness? This post outlines eight ways.
(1) The HIV/AIDS and ME/CFS Patient's Statement
Have them read a recent piece in the Huffington post written by a person with an aggressive form of HIV/AID's who is taking care of his partner with ME/CFS. Despite having a scary form of HIV he wasn't the one he was worried about - he was worried about his partner with the disease with the mild name. [fright]
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(2) Dr. Klimas's Statement
Then if they still have a "yah but" or are still skeptical - refer them to Dr. Klimas's famous statement from question and answer session on the New York Times
Dr. Nancy Klimas
(3) The Recent Quality of Life Study
If you still need more ammunition then show them this blog: Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc. which covered a study that found that the quality of life of people with ME/CFS was not just worse but considerably worse than people with other a wide ranges of serious diseases including heart disease and cancer.
(4) The Incredible 1996 Health Status Study
If they're still skeptical show them the results of this eye-opening study - Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. This study found that ME/CFS patients scored "significantly lower than patients in all the disease comparison groups.... on virtually all the scales".. Those disease comparison groups included, by the way, diseases like congestive heart failure, type II diabetes mellitus, acute myocardial infarction and multiple sclerosis.
(5) Check Out the CDC Economic Losses Study
If they still don't get it then have them check out this CDC study which showed that economic losses due to ME/CFS in the state of Georgia alone are over a $1 billion a year.
If they don't get it after all that consider that their brain-fog is probably considerably worse than yours - and that they may need professional help.
(6) Have Them Watch Unrest
So maybe they don't respond to print. Surely they couldn't resist a good movie. Particularly a Sundance Award winning, Oscar nominated film. Have them watch Unrest and they will surely get it.
(7) Have them watch Jenn Brea's Ted Talk
So they're into action thrillers not documentaries. Ask them if they can hang in there for 17 minutes? Tell them this Ted Talk has been watched almost 2 million times.
(8) The Nuclear Option: The ME/CFS and FM Symptom Thread
If that doesn't work go to the nuclear option - the symptom description thread . This option is not recommended for children, the fragile or people prone to depression. They may never look at you the same again but they will get a good sense of what ME/CFS and/or FM can be like.
(9) (Bonus) If They Think You're Just Depressed
Finally if they or anyone else thinks you're just depressed refer them to this blog - How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed - which shows that symptoms of depression are radically different from those of ME/CFS.
Other ways to demonstrate the seriousness of ME/CFS or fix misconceptions about it are welcome!
(1) The HIV/AIDS and ME/CFS Patient's Statement
"I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV" HIV/AIDS Patient
Have them read a recent piece in the Huffington post written by a person with an aggressive form of HIV/AID's who is taking care of his partner with ME/CFS. Despite having a scary form of HIV he wasn't the one he was worried about - he was worried about his partner with the disease with the mild name. [fright]
You see, Franky has lived the majority of his life with a little-understood chronic illness, which relapses and fluctuates without warning. This illness is ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and it is often referred to as the great "invisible disease" of our time. Franky once had to drop out of high school due to the symptoms that hit him as a teenager. He picked himself up, and also without any help from family, he made it through his terrifying wanes of illness....
After his ear surgery, Franky's illness kicked in with the force of a dragon's venom. He had violent thrashing vertigo and seizures, along with bone-crushing pain that spread up and down his every fiber. He could not move without assistance. I had to spoon-feed him, and bathe him. As a person living with HIV, watching the daily suffering of my partner who has chronic fatigue syndrome, I can tell you without hesitation, chronic fatigue syndrome is much worse than HIV. It's unfathomable that his disease is even named something as belittling and dismissive as chronic fatigue syndrome.
(2) Dr. Klimas's Statement
"I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas
Then if they still have a "yah but" or are still skeptical - refer them to Dr. Klimas's famous statement from question and answer session on the New York Times
Dr. Nancy Klimas
I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
(3) The Recent Quality of Life Study
If you still need more ammunition then show them this blog: Chronic Fatigue Syndrome Found Worse Than Diabetes, Multiple Sclerosis, Cancer, etc. which covered a study that found that the quality of life of people with ME/CFS was not just worse but considerably worse than people with other a wide ranges of serious diseases including heart disease and cancer.
(4) The Incredible 1996 Health Status Study
If they're still skeptical show them the results of this eye-opening study - Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups. This study found that ME/CFS patients scored "significantly lower than patients in all the disease comparison groups.... on virtually all the scales".. Those disease comparison groups included, by the way, diseases like congestive heart failure, type II diabetes mellitus, acute myocardial infarction and multiple sclerosis.
(5) Check Out the CDC Economic Losses Study
If they still don't get it then have them check out this CDC study which showed that economic losses due to ME/CFS in the state of Georgia alone are over a $1 billion a year.
If they don't get it after all that consider that their brain-fog is probably considerably worse than yours - and that they may need professional help.
(6) Have Them Watch Unrest
So maybe they don't respond to print. Surely they couldn't resist a good movie. Particularly a Sundance Award winning, Oscar nominated film. Have them watch Unrest and they will surely get it.
(7) Have them watch Jenn Brea's Ted Talk
So they're into action thrillers not documentaries. Ask them if they can hang in there for 17 minutes? Tell them this Ted Talk has been watched almost 2 million times.
(8) The Nuclear Option: The ME/CFS and FM Symptom Thread
If that doesn't work go to the nuclear option - the symptom description thread . This option is not recommended for children, the fragile or people prone to depression. They may never look at you the same again but they will get a good sense of what ME/CFS and/or FM can be like.
(9) (Bonus) If They Think You're Just Depressed
Finally if they or anyone else thinks you're just depressed refer them to this blog - How to Prove to Your Doctor You’ve Got Chronic Fatigue Syndrome (ME/CFS) And Are Not Just Depressed - which shows that symptoms of depression are radically different from those of ME/CFS.
Other ways to demonstrate the seriousness of ME/CFS or fix misconceptions about it are welcome!
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