Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to the malingerers and weak-minded among us.
We simply need to destroy that mindset, and thankfully there are a number of ways to do that. Below are ten ways plus a bonus at the end to help you prove ME/CFS is not just depression. More suggestions are welcome. (This is an update of an earlier blog on this subject.)
(Health Rising uses the name chronic fatigue syndrome in its article titles begrudgingly because it has such a high search value. It uses it in the first couple of paragraphs sparingly and then drops it altogether in favor of ME/CFS).
(1) HIV #I: Compare HIV to it
Have them read a Huffington Post piece written by a person with an aggressive form of HIV/AIDS taking care of his partner with ME/CFS. Despite having a particularly scary form of HIV, he was more worried about his partner.
As someone who has been HIV+ for 17 years I can testify that the M.E. I’ve been dealing with since Aug 2012 has had a far greater negative physical impact on my health and body than HIV. I’m also a passionate triathlete, having competed at the world age group champs 3 times – since my latest M.E. relapse almost 8 months ago, I’ve not been able to swim, bike, run. HIV has never debilitated me to even a fraction of M.E.
HIV #II: Hear it from an HIV/AIDS and ME/CFS Doctor
If they still have a “yah but” or are still skeptical – refer them to Dr. Klimas’s famous statement from a question and answer session with the New York Times:
(3) Quality of Life? (What quality of life?)
If they think you’re still kicking back and cooling your heels in bed, tell them about a study which found that the quality of life of people (QOL) with ME/CFS is not just worse but considerably worse than that of people with a wide range of serious diseases including heart disease and cancer.
(4) The Incredible 1996 Health Status Study
OK, you’ve got a tough case. Time to roll up your sleeves and get serious. Show them the results of an eye-opening study which found that ME/CFS patients scored “significantly lower than patients in all the disease comparison groups…. on virtually all the scales.” Those disease groups included congestive heart failure, type II diabetes melitus, acute myocardial infarction and multiple sclerosis. Surely that will do it.
(5) The CDC Economic Losses Study
It didn’t? (Really?) Consider that their brain-fog is probably considerably worse than yours and that they may need professional help, but hope springs eternal. Some people need dollar figures to get it. Have them check out this Centers For Disease Control (CDC) study which showed that the economic losses caused by ME/CFS in the state of Georgia are over a $1 billion a year.
(6) The 25% Study
That didn’t work? Remind yourself that patience is a virtue and try one more study. Surely the fact that about 25% of people with this disease are too sick to leave their homes, only 20% are working part-time, and a measly 10% are working full-time will make a mark…
(7) Have Them Read Whitney Dafoe’s Story
Scientific studies not doing it for them? No sweat. Let’s get really personal – scary personal.
Have them read about how a once healthy young man with a bright future is now being fed by a feeding tube in a darkened room.
Have them read Whitney Dafoe’s story and then tell them to pray that something like that never happens to a member of their family.
Bonus opportunity – have them watch some ME/CFS stories from the newspaper which featured Whitney’s story.
(8) Have Them Watch Unrest
Maybe they respond best to films? Surely they can’t resist a good movie. Particularly a Sundance Award winning, Oscar nominated film??? Have them watch Unrest… and pray.
(9) Have them watch Jen Brea’s Ted Talk
So they’re into action thrillers. Give yourself the medal of honor for hanging in this long. (They must be a close family member, huh?) Ask them if they can possibly stay engaged for 17 minutes? Tell them to watch Jen Brea’s Ted Talk on ME/CFS. Tell them it’s been watched almost 2 million times.
(10) The Nuclear Option: The ME/CFS and FM Symptom Thread
That didn’t work? Pray for them, they need help. Promise them that the agony (for you and them) is almost over, and then 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.
(Bonus) If They Think You’re Just Depressed
There’s a very good chance that this person thinks you’re just depressed. If they or anyone else thinks that, refer them to the blog below, which indicates that the symptoms of depression are radically different from those of ME/CFS.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.