Wouldn’t you just love to “Shake the Stigma”? You know the stigma that says chronic fatigue syndrome is just about fatigue (and mild fatigue at that). That everyone has it from time to time. That it’s a cover up for malingerers. That it’s not “real”.
Wouldn’t you just love for the National Institutes of Health to “Shake the CFS Stigma” and starting treating ME/CFS like a real disorder that deserves real funding?
The Simmaron Research Foundation thinks it’s time to “Shake the CFS Stigma” off – literally – and to challenge your friends and government officials to do the same. To leave that stigma lying in the dust from, (and if you feel like it, maybe stomp on it a couple of times..(my suggestion :)))
ME/CFS is real, it’s serious, and the ME/CFS community – all 17 million of them around the world – are not going away; it’s time to shake that CFS stigma for good!
The Simmaron Foundation has begun the #ShakeTheCFSStigma stigma challenge.
Here’s how it works
Shake or Donate – Shake the Stigma of Chronic Fatigue Syndrome.
Do the 4 easy steps below OR donate $10 (or what you can) to help Simmaron Research shake the CFS Stigma
- Video yourself doing a “shake” – dance, shake your hands or head, shake a drink, shake a leg …(If I can get a video going I’m going to shake something with the word stigma on it – and then I’m going to break it – and then I may stomp on it..))
- Post the video on any of these sites, using the hashtags #ShakeTheCFSstigma (simply embed the hashtags into the title)
- Challenge 3 people to #ShakeTheCFSstigma including an official in the U.S. government with power to fund research!
- Cut and paste the text and instructions above into an email addressed to those you challenge.
(A word for government officials: please participate in your off-time and on personal accounts if necessary)
Here are some ideas:
- First Lady Obama @FLOTUS email@example.com firstname.lastname@example.org
- Secretary of Health @SecBurwell email@example.com ASH@hhs.gov Sylvia.Burwell@hhs.gov
- Your Congressperson
- Cher @Cher
- LeAnn Rimes @LeAnnRimes
OR donate $10 (or what you can) to help Simmaron Research shake the CFS Stigma
– See video’s at Simmaron’s Facebook site
This is ridiculous!
This community has so little credibility and shaking the stigma is what this action wants to focus on?
How will it accomplish that?
Dear ME group-I was diagnosed as having ME 26yrs ago-4yrs ago I had private tests done in US and Germany that showed I had Lyme bacterial infections-a lot of ME sufferers test positive for Lyme-why is your group not looking into it?
This sounds like a great idea: clever marketing to get both funding and recognition. Smart. And I really hope it works.
But I am ashamed to admit my first thought was “aw…do I have to EXERCISE?” Lol.
Out of curiosity why Cher and Le Ann Rimes?
Hi Beth & Cort,
I believe Cher and Leann Rimes both have CFS/ME.
Looks like Michelle Obama email not complete? I’d like to participate in this great idea. Just did interview in London for Canary in a Coal Mine film doc. by director Jennifer Brea. Best to all:)
Instead of physically shaking, can I suggest you make a sign that says STIGMA and shake it? Or shake a fist. Or shake a sign that says CFS, toss it, and replace it with one that says ME? All ideas to minimize the physical impact on you. The people who have done videos are having a great time!
My initial reaction is that any of up and out of bed doing anything physical will eventually be used against us as proof that we are not really as sick as we say we are. But that might hust be the paranoia induced by 26 damn years of this thing.
I agree with you Camilla. I don’t think this a well thought out idea. It’ll make us look foolish, but then again, maybe that’s just MY cynicism after living with this crap forever too. It’ll be 37 years on Feb. 13th. I had lost count – had to use a calculator. Showing people as they struggle to walk across a room, or using wheelchairs and scooters might be more effective. Shaking something? I’m sorry if I seem angry but is this a joke? I’ve had a couple episodes of severe myoclonus lately, mild ones most days, so perhaps my husband should take a video of me during one of the worst seizures. No, already know first-hand that EMTS hanging around the ER snicker behind their hands to each other as they watch you in the midst of one of those, that ER doctors scream in your face, asking what drugs you are on and scoff when you tell them Amantadine, which was the trigger that time. (I tend to overdo, so too much activity, noise or other stimulation can do it too.) No, the longer I think about this I know that this is a terrible idea and will cause nothing but further ridicule. I appreciate the effort to try and do SOMETHING, but I will not be shaking anything for the cameras.
Instead of physically shaking, can I suggest you make a sign that says STIGMA and shake it? Or shake a fist. Or shake a sign that says CFS, toss it, and replace it with one that says ME? All ideas to minimize the physical impact on you.
The point is actually to challenge health officials to help us #ShakeTheCFSstigma by participating in the challenge, and to get well people doing it because we challenge them. We have tried many things. This one speaks to younger people who propelled the #icebucket challenge. The videos you saw were not predominantly ill ALS people doing it. But we need to start it in order to reach beyond our circle of patients.
I’ll paste two videos here so you can see:
It’s got to be the paranoia Camilla, I think. There aren’t many really serious disease where you couldn’t shake yourself or something a bit. Heart failure patients can shakes something, people with cancer can shake – almost anybody can shake something.
I think many people with ME/CFS underestimate how sick they are relative to other disorders. You can have all sorts of really serious disorders without being bed ridden or even impaired that much functionally. My mother with diabetes, Sjogren’s Syndrome and cancer – went on a trip to Egypt! Michael, I forget his name, with Parkinson’s has continued to act in a TV series.I know someone who broke his neck and a month and a half later was traipsing about the city in crutches.
I don;t think anyone would think you don’t have a serious illness if you can shake something..
Just change the name and get those who are in power to understand that this condition is REAL. There is plenty of evidence to support this and the rubbish around it being all in your mind has been disproved for years so why does it persist?
The same can be said for fibromyalgia which has a medical sounding name but means nothing when you are forever seeking help.
Which shows that the name is a just of the problem. The problem is manifold in my opinion but the essence of it is that the medical profession still does not take these disorders seriously…
Changing the name ‘Chronic Fatigue Syndrome’ would be a good starting point to gaining any form of serious recognition of the health condition.
Even my niece, (an Oncologist now), admitted some years ago when newly qualified as a Doctor, that it’s extremely hard for mainstream medicos to diagnose.
I think part of the trouble with ME/CFS (and my own FM) is that there are so many different symptoms which sufferers have……..in widely varying degrees…….that many CFS/FM sufferers are only diagnosed when all other diseases with similar symptoms have been ruled out. I still have the odd day when I can barely move and my limbs feel like concrete, but other sufferers are completely disabled, bed-bound and cannot function in any way and need full time care.
The whole trouble with these conditions is that normal healthy people cannot comprehend how you can be so unwell and disabled one day/week/month etc and can do a full day’s work at another time. My work colleagues certainly could not understand the concept of the waxing and waning of FM symptoms & pain. I was very lucky in having several other serious health conditions which required surgery and/or regular medical treatment when I was working full-time prior to 2010. I’m not embarrassed to admit, I used those conditions to help me get through disabling all-over FM pain days.
I genuinely think it takes either a very compassionate caring doctor/healer OR a fellow sufferer (to understand ME/CFS/FM and similar ICI patientsl).
I think anyone making a video of themselves ‘shaking a leg/arm or whatever’ paves the way for more ridicule and disbelief.
I have a video of myself “shaking” from a seizure-like episode. My husband took it when I kept trying to explain to doctors but had no words to explain, considering I had no history of seizures. (Turned out to be an extreme reaction to mold poisoning.)
I also shake when my heart rate shoots up and I can’t walk normally, or shake when I stand to cook by the stove, or when I stumble from bed to the fridge to get Gatorade. My point is – I don’t suppose you have to exercise to shake.
What if I film my muscles (jaws, neck, shoulders, torso, legs) involuntarily convulsing & seizing all over as they often do from exhaustion? Would that count? It’s not fun.
I can’t say I’m very happy about this. At least with the ice bucket challenge, there was a reason for using ice. It was a fun challenge with a serious underlying point – feeling like you are covered in icy water isn’t pleasant. As a Brit, an introvert and someone with ME (who has been through the having to lie in a darkened room thing), I’d say that showing videos of people shaking limbs runs the risk of trivialising the condition even more. It doesn’t even attempt to say what it’s really like. It just says ‘we are fed up with stigma’ in a rather trivial and silly way. Who is going to listen to that?
Something I have pondered off and on is something more along the lines of a challenge to lie in a dark room in silence for an hour and raise money that way. I accept that something like this wouldn’t work as a video challenge because, let’s face it, lying in a dark room is excruciatingly dull for most people. But I can’t help feeling it would do more to make people think, for precisely that reason. So maybe putting a blind fold on or something would work as a video challenge? Something that would represent the effects of complete neurological exhaustion…
Let’s tie some concrete blocks on a healthy celebrity who has stayed awake for 48 hours and film them trying to do normal household chores and then ask them to testify before Congress about how we live our lives. Me shaking a piece of cardboard isn’t going to make the slightest difference. And, yes, I am as angry and frustrated as I sound.
I don’t want to be negative about any campaign to support ME/CFS/FM. However, I agree with Vicki about the videos paving the way for more ridicule and disbelief.
Chronic fatigue syndrome is already a punchline in the public’s mind. Showing ourselves ‘shaking a leg/arm or whatever’ won’t make people take us seriously. It doesn’t educate anyone about the disease, and it doesn’t explain why society should support and sympathize with CFS victims.
I prefer efforts that show how this illness really affects us. People have trouble understanding that we’re too sick to do the things we used to do––things that healthy folks take for granted. Victims lose family, friends, careers and our very identities. Maybe public education efforts should stress that, “CFS doesn’t kill you. It just takes away your life.”
What if we do something from the place we spend the most time, bed! For example, have someone, be our advocate, and video us at our worst, let them explain a normal day in our life and end it with shake the stigma, this illness is real. From a care givers point of view!
I tend to agree with all 8 commentators above in varying degrees. It might get us attention, but could be that it’s not the right kind. We don’t need any more ridicule, there’s plenty of that already. I think we need validation, and a boatload of apologies! 🙂
Indeed – a boatload of apologies..
I shook my head in disbelief when I read about this. Does that count? I’ve lived with this for 25+ years and have been through the same misery of not being believed, etc.
I think this is a terrible idea and I agree with the above comments that it only opens us up to more ridicule and disbelief.
I can’t see myself shaking any part of my body without causing me more pain and that (pain) is not going to translate well in a video. We need to educate people in quick easy ways, analogies are one example…
Yesterday there was a blog about a new children’s book explaining, by way of “how many marbles do you have”, what ME/CFS is basically about. Easy for a child to understand. (To be honest with my lack of sleep lately I feel I’ve “lost my marbles” pun intended).Why not something similar aiming at the adult population. How about poster, brochures, marketing managers, professional fund raisers, I really don’t know and I’m being a bit facetious All ideas, including your idea Cort, should be considered. Some will be successful, some not. Initiating conversation, as you do, is key to better knowledge of these incapacitating conditions. The more we know the more we can educate others.
I like what Patti said: we need validation and a boatload of apologies. Well said!
This is not good. It’s silly and offensive. Wait for the right idea to go viral. Until then, let this one die before it gets off the ground. It’s not funny to have people laughing while they’re talking about CFS/ME. As others have also pointed out, it’s no picnic to have a movement disorder or seizures. This idea is just bad.
I guess the idea is that shaking oneself just doesn’t look very good on camera…
I was thinking of putting the word stigma on a piece of paper, shaking it to the ground, stomping on it and then lighting it on fire – but maybe that’s too much as well.
It would be fun, though…:)
LOL:) I like your humor Cort! That’s all we have on most days to get through another day…I was interviewed last week in London by Jennifer Brea for the wonderful film doc. “Canary in a Coalmine” that’s my contribution to our cause. Best
Great contribution Gina :)…Thanks
I liked the ice bucket idea for ALS and it went mainstream. I just can’t warm up to this idea at all. I want the stigma erased but not by shaking myself or something else. It makes us look like idiots. I can’t see healthy people shaking in a video either. Try again? if Cher, Onama or Robert Redford do it maybe I’ll reconsider.
I was embarrassed for the people on video shaking themselves it looks ridiculous and those we want to educate are going to think this is dumb if they bother to watch it. Sure hope it is squashed before many people see it. I would be apologetic if anyone I know sees it. The “ice bucket” challenge grew and so it was successful, this challenge looks forced, unnatural. Agree we need to lose the stigma but there is a better way to get the message out there without looking like a bunch of idiots.
I too thought the ideas were really inappropriate. Having a campaign to donate to Simmaron Research is, however, a good idea for anyone able to do that. I think illustrating what they are studying, etc. is a better way to shake things up rather than us.
Please don’t allow any silliness. I think a good talk about what ME is and how Simmaron and other researchers are researching for us makes more sense.
While I know that this idea comes from the right place, but to be honest it makes me sad to see that in 2014 we as a community are still at the point that we are trying amateurish ideas like this – ideas that could further damage our ‘public image’. But that’s what happens when a group of very ill people with no medical support/funding are left to run their own PR campaigns. I sure wish we had the kind of PR that breast cancer does 🙂
I credit anyone who is trying to make a positive impact, and there is no criticism coming your way from me – since I’ve done nothing to further our collective cause. But somehow this just makes me sad…
There are no professionals – no publicists – no admen – here. There’s no money to hire them. These are all home grown ideas that people with ME/CFS for the most part are coming up with. I challenge the critics to do better. It’s not easy…
Cort, I think that was the point of Jake’s post. This community has no funds and those with ME/CFS are left to execute these sorts of PR campaigns ourselves – which is very sad state of affairs.
Cort, you are dead on. Awareness and fund raising is left up to us patients. We need everyone to help, so we can move ahead.
Of course the lack of attention by the “medical professionals” is sad and frustrating BUT I think some amazing funding has come about b/c of such “silly” campaigns run by PR people who know just what they are doing. Look at the MS ice bucket challenge! If this would take off like that…if people in high places and on TV would do this and it went viral it would be JUST what we need! Let’s make this happen!!! I just watched “I Remember Me” (old ME/CFS film) last night featuring Blake Edwards (love the Pink Panther, never knew he had it), Michelle Akers (World Cup soccer champion), Dr. Nancy Klimas and others. Like Dr. Klimas said to the naysayers about it “not being real” etc…she pointed to all the research. Said there are tons of abnormalities proven and documented–pick one! We may get a stigma and it’s wrong, but science proves our point!
Cort, I’m sure it’s not easy and I apologize for my rant. I don’t care for the idea but I should not have expressed it that way
It looks like part of me reply was cut off.
I LOVE your articles and all the hard work you and others put into this site, it’s a success and it shows! Thank you for all the up to date info I receive here.
just some feedback – i’m with some of the others, i don’t really like this concept.
that said, I am hugely thankful for Cort’s efforts. This website has made a big difference for me, and that is not something you can say very often in the world of CFS/ME/MCS. I feel much less alone, and am much more informed thanks to Cort. Thank you Cort!
Thank you Sebastien – that’s great to hear.
This was an idea to help raise awareness and research dollars and help to dump the name “Chronic Fatigue Syndrome”. We patients need to educate the public about our illness until our Federal health agencies do their job. There is nothing that requires patients to “Shake” your body or body parts. As Patients, please be creative, use whatever works for you, make a sign that says “Shake the CFS Stigma” and then Shake it. As some suggested that they spend so much time in their beds, they can just move their video phone or tablet back and forth. We want patients to challenge their healthy friends and family to do the Shaking. As a patient of 3 decades, I know we cannot run, swim, jog, cycle or even do a walkathon. But we need to do something. Give it a shot, we are raising research dollars as I type, and remember to challenge your friends and family.
As the mother of a teenager I can tell you that Taylor Swift has a very popular song and video right now called Shake It Off. It is about people criticizing her, hating her, etc. and her response is to just shake it off. It actually might tie in well with the song.
Having said that, my teen with major ME/CFS wants nothing to do with this campaign for all of the many reasons cited above.
I think bringing up the stigma may create more stigma for those who currently have no knowledge of the disease or it’s stigma.
I think revealing the reality of the disease via video posting might do a better job of conveying the severity of the disease and at the same time dispel some of the stigma. Maybe a brief display of each person at their best, possibly a moment from before the illness struck, followed by a brief display of them at their worst and an appeal to donate to a research charity. This could be very powerful, especially if large numbers of people do it.
I kudos to Karen! “CFS[ME/FM] doesn’t kill you, it just takes away your life”
What other kind of “slogan” do you need other than that?
“Shaking” just adds fuel to the fire, ridiculous!
Karen’s slogan would make a wonderful bumper sticker.
I kudos to Karen! “CFS[ME/FM] doesn’t kill you, it just takes away your life”
What other kind of “slogan” do you need other than that?
“Shaking” just adds fuel to the fire, ridiculous!
Karen’s slogan would make a wonderful bumper sticker.
“ME doesn’t kill you. It just takes away your life.” – – this is pretty good, at least a good place to start some brain storming.
Cort, maybe it would be a good idea to put up a post asking for readers here to suggest some campaign tag lines/ideas? Just a thought if this “shake that #%cking stigma” doesn’t take off.
My thoughts: there is no awareness of this illness by the general public, period. The stigma aspect is a secondary matter. We need people to know that there is a serious illness exists called ME. And the message needs to NOT include the terms CFS/Chronic Fatigue Syndrome -because that’s what initiates the stigma once someone first becomes aware of the illness.
Great job you are doing here, Cort. Thank you.
I was just reading these comments and I think it was Gort who mentioned about getting the help of a PR consultant or company? I would just like to share some information you may find helpful. I am founder and coordinator of a patient support group in Northern Ireland where I must add we have zero health services for M.E. patients and we are currently campaigning for specialist NHS services and trying various way to raise awareness. I had an idea about two years ago to contact a government body called The Patient and Client Council. Their role is to be a ‘voice’ for all patients complaints etc. I had read up on work they had been doing for other illnesses so thought there would be no reason why they couldn’t do the same for M.E.
To cut a long story, short, we literally tortured, pestered and begged for them to listen to the history and neglect surrounding our illness and after many emails, phone calls and meetings they have just recently agreed to take up the fight on our behalf! They are providing a PR Consultant, doing information newspaper articles, even mentioned a possible TV short advert plus arranging a meeting with our government Health Committee and also organising a Workshop totally focused on ALL aspects of both M.E. and F.MS They are providing the money to pay for everything and have so far agreed to ALLof our requests! It all seems nearly too good to be true and has taken a few years to get to this stage but if all goes according to plan it will be the biggest awareness event and the best ever opportunity to educate the people who matter and can bring change.
Surely there must be an equivalent government body in USA and other countries?
We have already hosted many conferences and brought world experts to N.I. but the mental effort involved is literally killing us. The only physical work involved with conferences is on the actual day of the event as everything else can be arranged even while bed bound with the use of a laptop. The planning for any events we have done in the past took 6 – 12 months, working on it only when able, but with the help of the PCC now doing the hard work for a few months anyway….. it is now nothing more than emailing them the suggestions. We will of course have to attend the events but the strain and stresses of getting funding approved or raising money to pay for everything has been removed on this occasion.
Congratulations, Joan! That’s amazing – it does almost seem to good to be true :).
Thanks for passing on your innovative idea. I don’t know if there is an equivalent body in the US but it’s certainly worth looking for one. Good luck with the effort…
I will keep you posted as we go along Cort. It will hardly change the world but it’s got to be good for awareness and getting some facts across to the doubters and health decision makers.
I’m sorry but I think this whole effort is a waste of time and energy- energy that few of us have. Its also very complex and confusing for those of us suffering from brain fog. I’ve dealt with having ME for over 27 years now, and when I was diagnosed with it, it was called ME. It is my opinion that the easiest, simplest way to change public perception- and the stigma attached to this malady is to CHANGE THE DAMN NAME. Call it ME or concoct a name that actually reflects the nature of the illness- but get rid of that misguided label CFS once and for all.
Thanks for all the work and the effort done on these pages,
Not sure where to write this…but it applies as regards to stigma. If anyone finds the CFSAC Dec 3-4 mtg vid recording online…Youtube etc a link or post would be great. Here is the site http://www.hhs.gov/advcomcfs/ and here is the contact person for it w/ email and phone #. https://www.federalregister.gov/articles/2014/11/19/2014-27440/meeting-of-the-chronic-fatigue-syndrome-advisory-committee I’m going to email her. Very curious how the mtg went but didn’t watch due to the early time it was on (for me, PST). I’ve heard it took quite a while for the other mtgs to be posted.
Here’s another vote for this as a really bad idea. “People who can stand around and shake and dance must not be too sick, right? I guess they are fatigued from dancing.” Very poorly thought out idea.
The best way I can think of to shake the stigma is to NEVER NEVER say “CFS” or “chronic fatigue syndrome,” or heaven forbid “chronic fatigue” EVER AGAIN. You have Myalgic Encephalomyelitis (CCC or ICC definition). Period. Do not add anything like, “Sometimes it’s called chronic fatigue syndrome.” Don’t let those words pass your lips again. This CFS name was given to patients decades ago by biased people at the HHS. Things are not any better now. But we can fight back quietly but consistently. What do you have?
MYALGIC ENCEPHALOMYELITIS, a very serious disease of the central nervous system. It causes total-body symptoms. It affects over one million people in the U.S.
I just don’t get this idea that you can’t be sick and shake either yourself or something else.
Not saying CFS might be good on an individual basis but I think you need to make some sort of campaign about it to make a difference. Then’s there’s the problem of what to do with all the awareness built up around ME/CFS. Are you going to lose all that?
Best of all to focus on getting more funding for ME/CFS in IMHO.
If everyone stopped using CFS and stopped saying chronic fatigue syndrome, and also lobbied govt. agencies to do the same, it would work. This is how the ME/CFS took over the CFS name. It was a big campaign back in the early 2000’s, led by Rich Carson. More and more people are now refusing to use CFS in any way whatsoever. All it does is validate the false construct of the disparaging name. Not using CFS is in no way mutually exclusive of trying to get more funding or Centers for Excellence or anything else patients need.
I worked with Rich on that campaign – and that was what I was referring to – some sort of campaign.
Cort, I’m not sure if I understand what you’re saying here…’CFS might be good on an individual basis…’ Do you mean the use of the name? I also don’t understand why dropping the ‘CFS’ from ME/CFS would lose any of the awareness already developed. How can we eliminate the misconception that ME is merely about chronic fatigue if we, ourselves- as a community of sufferers- continue to call what we have ‘Chronic Fatigue Syndrome’? How can that contribute to creating a more respectful awareness of this malady.
I agree with those who feel that this ‘shaking’ campaign would trivialize rather than bring greater public awareness to this condition. Sure, some of us shake with exhaustion, etc. But it isn’t a core problem that we face. However, no matter what the individual panoply of symptoms we each may have, we all face one condition in common- loss. Loss of abilities. Loss of health. Loss of mental capacity. Loss of self-esteem. The list goes on and on. Indeed, though ME may not have killed us, it has taken our lives.
Thank you for all that you do for us, all the work you do toward an understanding of this condition and its treatment,
I really think an organized campaign will make the most difference – one that is tied to some outcome – that’s what I meant.
The problem with dropping the name is that it’s our entree into medical research for now. I really the like the progressive approach – first go to ME/CFS – that’s definitely happened and then find the most appropriate name. My guess is that that’s going to be the name of a subset that gets defined. Maybe it will be ME- that would the easiest way to go.
Cort, think about what you just wrote – that ME will be a subset…of CFS? No! Here is a part of what I wrote to the IOM committee in January 2014:
“ME cannot be a subset of a non-disease.
“For 25 or so years this disease has been called chronic fatigue syndrome. Very likely the majority of patients who have been diagnosed with CFS as far back as the 1990’s meet the ICC definition of ME. (At least three studies have shown that this is the case.) Why were those patients diagnosed with CFS and not ME? Simply because that while their symptoms met the criteria for ME, ME was not being used as a label in the U.S. until the mid-2000’s. Their symptoms had not yet been listed and explained properly until the CCC came along; everything was called CFS. The CCC definition refers to ME as “sometimes called” chronic fatigue syndrome and adopts the combination name, ME/CFS.
“However, what has evolved somehow is the thinking in some quarters that ME is a subset of CFS. No. Some patients have been diagnosed with CFS who do not have ME because of the overly broad CFS definitions still in use (Fukuda, Reeves). But what they really have is unknown because they do not meet the criteria for ME, and “CFS” doesn’t define anything accurately.
“ ‘Chronic fatigue syndrome’ is not real. It is a false construct. It is a name that prevents a proper diagnosis of the real disease. ME is a neurologic and immune disease with distinct and measurable abnormalities. ME is not a subset of this oddity ‘chronic fatigue syndrome.’
You are exactly right, Cort, about our needing a new campaign, but in the meantime, everyone can contribute to the effort by just washing “CFS” and “chronic fatigue syndrome” out of their vocabularies. We have to work on the experts to do the same!
Everyone can do that starting right now.
The first neurologist I saw had no idea what ME is.
It is not a good idea, it is very open to ridicule….
Please, just no!
First I just have to say how relieved I am that I’m not the only one out there who has suffered with this disease for such a long time (20 years for me). It’s extremely validating to hear from others who share my frustrations and hardships. I often feel like such a freak for having something no one understands nor even believes is real!!
I agree emphatically that this disease needs a new, SERIOUS NAME. On a few occasions I’ve mentioned to relative strangers that I have Chronic Fatigue Syndrome only to have them reply, “Oh yeah, I have that too.” (These are fully functioning people). Arrrggghh.!! Then I have to explain to them, “NO you don’t. You don’t spend most of your life in bed just trying to shore up energy to do the simplest things…” At which point their eyes glaze over and you know they’re thinking you’re just lazy or depressed or some sort of hypochondriac.
Since more people have heard of fibromyalgia (and are more sympathetic to it), I usually tell them that’s what I have even though it’s very secondary to the fatigue for me. (I only have occasional, relatively manageable bouts of fibro).
I know ME is more common in England but truly, I can barely pronounce the E part (nor spell it). When I’ve mentioned it, I get that eye glazing over reaction from people – perhaps because it sounds complicated.
For some reason most people seem to take diseases like Sjogren’s syndrome seriously when they’ve never heard of it, and I actually believe it has something to do with it having a foreign sounding name. I had a friend with it and whenever I mentioned it to people, they took on a serious response. And this was before Venus Williams came out as having it! Now a lot of people know about it and have a great deal of sympathy for Venus despite her still being able to play. Perhaps CFS needs a foreign sounding name for people to take it seriously. Sounds silly but seems to work. (I also got serious responses when I mentioned to people about another friend of mine who had Charcot-Marie-Tooth disease. It’s pronounced with a french accent).
I believe the greatest coup would be if a well liked, respected celebrity with the disease came out very publicly – television PSAs, cover of People Magazine, etc. If more people understood the severity of it, more $ would be funneled into research, etc.
I also love KAREN’S slogan, “CFS doesn’t kill you. It just takes your life away.” Only I want to do it with a different name for the disease. Yes, it would make a fantastic bumper sticker!
Finally (if you haven’t fallen asleep trying to read my long post…), FYI for anyone who’s interested in the ESTROGEN LINK. I had CFS for about ten years when I decided to ever-so-slowly build strength and exercise again. It took about 5 years but I was finally able to build up to playing doubles tennis twice a week. It was glorious. I was able to do that for about a year and a half. Then over a period of a few months, I was completely flattened again, worse then ever before. I realized it was due to menopause. (The extreme fatigue and inability to function at all began about 8 months into no longer having a period). After a few months of this crap, I went on hormones. (There’s no cancer in my family). Estro-test and progesterone. They have helped though sadly I’m not back to tennis like I was. I can play once a week until I have any kind of normal life stress and then I’m out again for a month. But I am better on the hormones.
Don’t know if this helps anyone. I’m just so dammed glad to be able to share my experience with people who might actually get me!!!
I totally agree the name needs to be changed! Having both ME/CFS and FM is a mouthful and anyone asking has tuned me out before I get to the FM part. If people can’t understand what you are talking about you have lost them, ( remember the smart kids you went to school with?) no one hung out with the smart kids at school. “Keep it simple stupid” applies here, It is rocket science to those that are hearing about ME/CFS and FM for the first time. Change the name and the ideas for a campaign that folks will relate to will fall into place.
Kira, the “eyes glazing over” response is just fine to get as a reaction when people ask you what is wrong with you. It means that they are not disparaging you when you answer; they have to take Myalgic Encephalomyelitis more seriously than “chronic FATIGUE syndrome.” Just practice saying and spelling it; it will get in your head. When I say it, I get glazed eyes, too, but I just continue speaking – “It is a total body disease that is worse in its symptoms than almost all diseases except for end-stage cancers and heart disease. It is neurological and is effects the brain and spinal cord, causes a wide variety of very painful symptoms including pathological exhaustion (another word never to use – the F word! – fatigue.”
It is my impression that fibromyalgia, though somewhat better understood than ME or CFS, is thought of as just a bunch of muscle pains. Very few understand the connection to ME or its other symptoms, including exhaustion and brain fog.