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.
Quality of life? Longer bars mean higher QOL. Check out ME/CFS – on the top.
(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.
I tried to join Health Rising forum, but the moderator rejected my application. May be because I am not caucasian. I dont see any other reason.
What????! How is your post visible on here then – and what has not being caucasian to do with anything related to this inclusive supportive site where M.E. is a leveller for all of us, all over the world, in search of answers and support? It sounds as though you’re not aware of Cort’s research, journeys and international collaboration to share the latest insights with us all? Have you thoroughly ruled out technical glitches, or the possibility that moderators might be asleep or in another time-zone at 4.38 am when you are posting? Maybe pain or brain fog was getting to you then, but welcome to this wonderful site!
Honestly I’m absolutely positive it wasn’t Cort who denied your entrance. I’m sure no matter WHAT your name was you wouldn’t have been excluded. I echo
Galanthus’ comments. A hearty welcome to our group!
My apologies Raghavan. I promise you it was not because of your name. If you live in Southeast Asia it may have been because of your location. though. Health Rising has been inundated by spammers from SE Asia. The Forums got hit hard before they were opened to the public. So many spamming messages were posted on them before we were aware of it that our website started getting blacklisted. Our policy since then has basically been to reject people attempting to join from that area. Unfortunately a few people with ME/cFS have gotten rejected as well. I will register you for the Forums. My apologies for the upset that occurred.
Welcome Raghavan. I hope you benefit from all the information from Health Rising.
You are joined or else you would not be able to post
Stop
being racist
Thanks Cort, I enjoyed the humorous treatment of such a serious matter. Definitely bookmarking this one to share with friends and family.
Also add the awesome documentary Forgotten Plague (not THE Forgotten Plague, that’s about TB), available for viewing free if you’re a member of Amazon Prime. Or you can buy it online. I think Ryan has a 2 for 1 deal
right now. I liked Jen’s film Unrest but I feel that Forgotten Plague is a better representation of more patients including Whitney DeFoe and talks more about the history of MECFS and Nancy Klimas’ research.
Thank you for clarifying! I accidentally got sucked into the version about TB. I kept wondering how they were going to tie it to ME! ? It was interesting though!
I agree Stephanie Stultz, Forgotten Plague is an extremely important teaching tool for the reasons you mentioned. I think it should be a two part series with Forgotten Plague being part 1, Unrest part 2. It saddens me that Forgotten Plague seems to be getting less attention in our community as the information is so important. Thank you for mentioning it.
The Forgotten Plague will be in our next blog.
I’ve been trying to get my hands on a copy of this for months! I’m in New Zealand so we can’t get it through amazon prime grrrr. Happy to pay for it but no service will take my money! haha. It can be quite hard to get stuff online if you are outside of North America and Europe. Such a shame – the internet makes it possible to transfer information almost anywhere in the world at low cost, but licencing splits us up into geographic regions! I ended up paying for Unrest and then it came out on Netflix a week later – oh well! At least I can rewatch it for free and recommend to friends and family (none of which want to watch it because its “too depressing” lol)
I watched UNREST and found it so depressing I decided I did not want any of my family to see it. I will watch FORGOTTEN PLAGUE by myself first also, just in case. Such a shame though that we must worry about these possible effects alone, not wanting anyone else to worry about us.
Thank you Cort for this article. Excellent summary. I’m printing it out and going to carry it with me.
But it begs the question: how can the wealthy western world be so slow and so cheap I addressing this nightmare hell.
How well I remember how the whole world united to address AIDS. It was considered an urgency; yes, because folks died. But in the case of ME folks are worse off than with AIDS, and folks have high suicide rates.
How much longer do the severely ill have to wait? How much?
Hello, Canadian neighbor.
I agree wholeheartedly. The difference (one difference, anyway) between ME/CFS and HIV/AIDS is that the people who control the money were afraid they or someone they loved might catch HIV/AIDS. They do not believe that about ME/CFS. The AIDS community also had an army of healthy advocates from friends and family early on, whereas we are just beginning to mount an effective advocacy. One reason–aside from our illness not being perceived as either lethal or communicable–is that our families and friends have too often joined society at large in viewing us as lazy freeloaders. As a result, we are the most isolated sufferers in the annals of disease, with the possible exception of lepers.
Hello Brenda
Your points are all very well taken. Yes, we all had this ‘fear’ that if we had sex we might get ‘infected and die.’ That really was a prime motivator.
As we all know the stupid name CFS has done more damage than I care to enumerate.
Therefore, films like Unrest really help. There just needs to be more out there about how severe this disease is, which is progressive, if truth be told.
I do think concentrating on the severe is the right to do, as Dr Davis is doing.
And highlighting death from this horrid disease is also important.
But how to get more money and researchers on this hell, which destroys the lives of the young.
Hopefully not that much longer. Hopefully. I still think that when the medical world really discovers ME/CFS they are going to dig in deep. It causes such incredible devastation; I don’t know how that alone doesn’t interest researchers.
It doesn’t atract many researchers for this reason. Many of us recover all using the same methods. The medical community knows this very well. You must factor this into any model of disease. When you do, you hit a reasearch wall. If thousands of people are able to recover with well established protocols, then the research must follow the recoveries….which it is. Yes it’s a real disease, but recovery is certain WITHOUT modern medicine. Join the thousands of us that have reclaimed this lives.
Matt, so what are these protocols that are CERTAIN to be effective??
There is no reply button under your comment, Matt – but this is for you: Can you please tell me what thousands of people do to get well? I would love to join in to recover with well established protocols! 🙂
Regarding dying from this disease… Suicide is very real… but so is dying from the disease itself. I had two friends who’ve passed on. One very much like Whitney Defoe. Her body simply stopped functioning. Docs couldn’t tell why. So yes, amongst the entire serious issues with this illness, those in the most severe category are dealing with this possibility. So don’t let anyone dismiss you by saying “Well… it isn’t terminal, is it?”
Also, after 10 years of ME/CFS, I got advanced Stage IIIc cancer at age 38, that almost did me in. It was directly related too.
This is an excellent, if harrowing, film about ME patients in the UK. Please don’t watch it if you’re feeling fragile, but to get through to people just how bad this illness can be, nothing else comes close. The link below takes you to a Web page which explains more about the film, and also where you can see it.
http://voicesfromtheshadowsfilm.co.uk
The documentaries and films on me/cfs focus mainly on the severe patients. I wonder, if because our symptoms are not as visible as the ones you “see” in severe patients, is a reason we aren’t taken seriously? I realize that showing these films with the worse patients grabs attention (and we certainly need that) but is the audience judging our invisible illness (you don’t look sick) as a minor disease compared to the more severe ones?
I think that has a lot to do with it. If you look at the NIH there are a bunch of diseases allied with ME/CFS – fibromyalgia, migraine, interstitial cystitis, IBS, POTS – which have a few things in common:
They are mostly invisible
They mostly effect women
They can pain and fatigue
They effect large numbers of people, cause a lot of disability but normally do not kill people
Look at migraine – very common – gets horrible funding – incredible! The NIH has turned it’s back on diseases like this.
Officially, the clinicians treating my son have titled it Immune dysfunction syndrome which embodies many other diagnoses e.g. : fatigue, Mast Cell Activation Syndrome, etc. My son was among the highest producers as an Emergency Medicine specialist in Hollywood and UCLA hospitals. He was on the cover of many health magazines—-now he has wasted away( having lost seventy pounds) and looking more like a Holocaust survivor. He exists on a rubber mattress in a dark room connected to a PICC line, where he has been for the last four years.
IF there is a way out of this MR. Cort Johnson with our support will lead us to it.
OMG Frank…I’m so sorry…
But doesn’t your son’s case demonstrate as well as any the incredibly devastating effects this disease can have? To go from being Emergency Medicine Specialist – a job which attracts people who like to put themselves in high pressure, highly consequential situations – in short some of the best among us – to where you son is now…who could conceive of it? This is why when this disease really gets picked up by the medical profession – I think they’re going the explore the heck out of it.
Dear Cort,
Your work is invaluable, and thank you for everything you do.
I too had a high functioning highly educated family member now wasting away for 17 years.
For several decades now this horror has been known, and really it has only begun to be ‘seen’ when Dr Davis ( and Dr Klimas and Dr Hanson and few others) started to stir things up.
It’s already visible, where is the medical profession. Where are they?? How can the severely ill endure even a few months more? I don’t know what else we ought to do.
Another one:
Show them the IOM report summary. Or the whole thing!
Also, Dr. David Kaufman’s new short video. Really good.
Nice! Kaufman made a video :)…is it on Youtube?
Can you provide a link to the video or info re where to find it please? Thank you.
Janet,
Please provide some directional information for those who wish to view Dr. David Kaufman’s video and/or read the IOM report.
You and Whitney are constantly in my thoughts and conversations.
Dr Kaufman’s video is on Youtube https://youtu.be/RC9TjgE_PlU
Rocket science… our very own French canadien David st Jacques has just left on the space shuttle so here in Montreal we hear a lot about astronauts and the science around it. Scientits are looking for a way to induce hibernation in the astronauts in order to save on food, water and whatever during the very long trips to exotic planets. They are looking to induce a dauer state ! a term I learned in Naviaux’s papers… maybe the NASA could fund research with the sickest of us , who are already in a sort of hibernation? Just need to figure out to get out of it, though
Cort,
Thank you sooo much for this page. A few years ago, my closest friend of 30 years virtually abandoned me in my time of greatest need (when I became too sick to leave the house for long periods of time). I was flabbergasted and heartbroken. I still carry a grudge because she simply still just doesn’t get it!!
I am considering asking her to do therapy with me about it via Skype. If I do, I am going to ask her to read and watch the above.
I am so grateful for all your hard work! Thank you again.
I agree with this. I’m in Australia I find people commonly confuse chronic fatigue which is a symptom with CFS which is an illness.
My story is similar to so many others — a long time between developing the disease and being diagnosed, doctors who absolutely don’t understand, specialists who don’t truly believe it is real, friends and family who think I just need to take more naps.
One thing I’ve found that makes a huge HUGE difference, is never saying “chronic fatigue syndrome” Only ME. When someone asks “what is ME”?, I have practiced saying and writing “myalgic encephalomylitis” (I’m going to have it tattooed on my arm ‘cuz my cognitive impairment [I also refuse to say “brain fog”] sometimes gets in the way) I have a chance to explain.
I would say “chronic fatigue syndrome”, and invariably, the person would say “Ahh — I know exactly what y you’re talking about!! I’m exhausted all the time too!! (No, you’re not.)
When I say ME,and answer “myalgic encephalomylitis”, I get “That sounds terrible!! I’m so sorry!” People who aren’t actually interested in my health or become uncomfortable because they don’t know what to say usually stop at that point, but some ask me to tell them more about it. Another educated customer!!
Join my crusade to not use chronic fatigue syndrome. People don’t say “MS/Autoimmune Disorder Syndrome. Many people don’t know what MS is, but they’ve heard of it. The national MS society says there are nearly one million people living with MS in the US. CDC estimates on those living with ME range from 836,000 to 2.5 million. People, including health care professionals are quick to dismiss “chronic fatigue” Let’s make then at least stop for a second and think about Myalgic Encephalomyelitis.
Hi, my name is Amanda, and I can relate to everything you are saying. I join your crusade. I am with you 100%.
“.. Prove to your doctor that you are not depressed ?” For them to then do nothing ?