I'd Like to Learn About the Stigmas You Guys Face

KJM

New Member
John,
Thank you so much for doing this! It's wonderful. I understand that you are trying to educate others, but I'm not so fond of "I believe". If I knew nothing about CFS, I would wonder why I should "believe" in it. I think it would make me skeptical at the outset. On the other hand, something like "what if you had these symptoms and your doctor didn't believe you?" But you are the marketer and must know the best way to get the word out! Thank you again for doing this!

I have had CFS for 27 years. I'm pretty sure that when I tell doctors that I have CFS they write "hypochondriac" on my chart. My endocrinologist told me to walk 30 minutes each day and then asked me how hard could that be? I could not begin to explain how hard it could be.
 

JennyJenny

Well-Known Member
[QUOTE="tatt,] I don't want sympathy or pity - I want fair investment in looking for a cure.

That's an accurate assessment - and an awesome sound bite for media![/QUOTE]
That is good.


Did everyone see the CDC when they made a PSA? It was uploaded to youtube 2007, I am not sure when it was made and stations ran it.

I like the part where it says "Get diagnosed, Get help." Bwaaaaahaaaaaahaha
Actually, it isn't bad. Its just that it didn't help us much.
CFS/ME CDC "Missing My Life"
 

Empty

Well-Known Member
Get it?
Got It?
Good!


edit: that's a phrase Julie used in the big brother house. On par with 'Just do it'. I never wore Nike and my subconscious doesn't work like that. My subconscious spits out any attempts to manipulate it.
 
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Snow Leopard

Active Member
The problem with "CFS" is that it leads people to think they understand what it feels like. They think, hey, I'm tired at night, it must feel like that all the time. It does not.
The fatigue we experience is not the "tired" drowsiness. Ours severely affects our ability to function and is associated with constant pain. You can't push through the pain and fatigue like you can if you are healthy. Your body breaks down part way through. You will achieve nothing but pain.

My father is an elderly ultramarathon runner he can run over 100km per day for several days straight. Not all fatigue is the same.
 

Beth from Oz

Active Member
I like the idea of battery charges above the heads of people with CFCs and those without.

I'd also thought it would be great to mod my favourite game Skyrim to give it a new quest: "Congratulations!" It would display in writing, "you have contracted M.E.!" You'd then have to try to do a quest to find first a diagnosis against a horde of disbelieving healers and obnoxious Orcs, then a cure, which ultimately doesn't exist. You will travel far and wide looking for the weirdest herbs and spells, which end up not working. During your quest your Stamina bar would constantly deplete on the smallest exertion, if it goes down too far then your health bar would deplete. If you let your health and stamina deplete too much then they shrink permanently, and can't be upgraded when you level up. You have to rely heavily on a paid companion who makes nasty comments at you constantly until finally giving up and deserting you, hopefully while you are staying in an inn and not in the wilderness where you would get eaten by a giant spider. If you are really unlucky you'll have to spend the entire quest in bed with writing on the screen telling you "the light is exhausting you and causing you pain, quickly find a cure" (the non existent one) if you don't close your eyes the stamina bar starts going down. Not a game I'd like to play, not that I could since playing games now makes me dizzy.

Please forgive my nerdy rants.

On a different note I often dismiss obnoxious remarks with humour, though be warned Aussie humour is highly sarcastic, and non Australians can often be unintentionally offended. So husband says "why haven't you done the dishes?" I'll reply with "I leave it like that because I know it annoys you".
Or being a Muslim and wearing a headscarf I have someone ask "what is that thing on your head called?", I'll reply "Steven", no really, what is its proper name? "Mr. Steven"

I mention this because maybe a humorous approach making fun of preconceived prejudices may be an idea, but I'm not American, and in America it could be an awful idea. How about: " I was feeling bored with feeling respected by my community, I was sick of having a fabulous career, and earning a large income, I had too many friends and fulfilling hobbies, and exploring the world was a terrible idea, so many awful things to do. But now my life has changed for the better. Everyone calls me a hypochondriac, I have no life or respect and I gave up all that awful money for the joys poverty. I don't have to worry about travel or hobbies or career. I now have the joys of being confined to my house... Etc. but then maybe not everyone understands irony.

Why have friends when you can have rejection? Why have wealth when you can have poverty? Get your CFS here! Call now and we'll tie you to your bed for six months, unable to move, with a loudspeaker over your bed telling you that you're lazy. Ok I'm getting a little dark now.

Stigmas: lazy, not trying, secretly on drugs, like being sick, don't want to get better, haven't tried the latest aardvark juice so I deserve everything I get, maybe if you give up ( insert every food or beverage known to man) then you'll get better, are you sure you're not depressed? You're faking sickness to get the attention of the people who are ignoring you because you are sick.
Sorry for the too-long post.
 

ScottTriGuy

Active Member
You know, that's really a compelling case to just go with CFS. I hear you all regarding how you feel about the name, but we have to also look at it this way: I'm not primarily marketing to you, you guys are already converts; I'm marketing to the non-informed masses -- the ones are likely to create stigmas.

My job in this particular endeavor isn't to directly get the masses to fully "get it" -- I'm telling you now, it's just not going to happen in a short ad. It is instead to first and foremost make the masses aware that CFS is a serious disease and to create associations with CFS that prime them to be more understanding, so that they're more easily convinced.

I also don't necessarily want to be direct. Take Nike's tagline, "just do it". It's not about getting you to directly buy their shoe per say, but it's telling you to empower yourself in your own life by "just doing it". You heed that advice in real life, feel empowered from heeding that advice, and you associate Nike with that feeling. Next time you're in the shoe store, when you see Nike, you associate that brand with making you feel strong. This all happens on a subconscious level.

Right now, people see CFS, they think bad things. Right now I want people to see CFS and think "this is real" in any capacity possible, and feel compelled to research CFS. If we want to fully convince someone, what needs to happen in tandem with what I'm doing is the creation of a site where they can immediately get educated about CFS and donate/do something to spread further awareness. That site doesn't exist yet.

Hey John,
Extremely valid point that researchers and the funding 'industry' requires use of (mostly) ME/CFS. Many people do have a negative view of 'CFS', or as has been pointed out, many people assume they know what 'chronic fatigue' is like coz they've had days of short sleep and lots of activity so they 'know' what we are experiencing (and we just need to have a nap).

Additionally, the term 'chronic' has negative connotations on its own. Chronic alcoholic, chronic = never gets better. Ditto 'fatigue' - it is inherently associated with negativity. Those meanings run deep in people.

'Myalgic Encephalomyelitis' generally has no such baggage (tho' more in the UK and Eur it seems) - except what it has picked up in being associated with negatively viewed CFS (ie "me/cfs"), but even then its the letters 'm.e.' that are more highly associated. I believe only a minority of people would be able to identify, let alone recall, what words the 2 letters of m.e. stood for.

I think my point is that using 'CFS' or 'chronic fatigue syndrome' alone is a far harder row to hoe than 'myalgic encephalomyelitis' alone.

However, given the terminology used in research/funding, we are pretty much confined to "me/cfs" or "cfs" or "m.e." or "myalgic encephalomyelitis" or "chronic fatigue syndrome".

Or perhaps: "myalgic encephalomyelitis and cfs" as a way to start to move away from negatively-laden 'cfs' ??

I think its also helpful to associate the term with a recognizable disease heading like "autoimmune disorder" or "neurological" to give it more legitimacy and a 'place' in the medical disease groupings. The term 'spectrum' can help facilitate this concept.
 

Empty

Well-Known Member
Chronic Fatigue Syndrome is Cancer, is Hypothyroid, is POTS, is Lyme Disease, is M.S. is Myalgic Encephalomyelitis, is Heart Disease etc. etc. etc. Get a real Doctor, get a real diagnoses and discover which disease you really have.
 

Pold

Member
Chronic Fatigue Syndrome is Cancer, is Hypothyroid, is POTS, is Lyme Disease, is M.S. is Myalgic Encephalomyelitis, is Heart Disease etc. etc. etc. Get a real Doctor, get a real diagnoses and discover which disease you really have.

What if I have spent years doing all sorts of lab tests and nothing is ever abnormal enough to explain my level of disability?

What if no treatment works? I've tried psychotherapy, vitamin & antioxidant & mineral supplementation, meditation, yoga, antidepressants, gluten avoidance, low dose cortisol, t3, various stimulants, various adaptogenic herbs, vacations, nootropics, various dietary modifications, sleep aids, B12 and folate, ignoring symptoms and continuing, total stress avoidance, and more stuff I can't even remember. None of these felt like they were treating the underlying issue (many did nothing), and the effects were so modest I lost interest after a while. A few were even harmful (stimulants and antidepressants).
 
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Luke

Member
Thanks for trying to help us. In Australia there has been a TV commercial campaign in recent years educating about depression. And it's been effective in raising the awareness of depression which also had it's stigmas but is now very respected and you'd be called irrational not to believe it is real. And i will add, that depresion is a completely distinct disorder from ME/CFS i just mention it here because it's an example of a disease being marketed to the public.

I've long thought that if a marketing campaign did the same for ME/CFS it would be a huge help for funding, ultimately the funds go to things people respect and know about. So I'm very happy to have anyone on board who can help get us closer to that goal: raising awareness and educating.

I don't think a tagline with the word belief in it would be helpful. It implies we want to be believed - as if the person has a choice whether to believe us or not - and we hope they will choose to. But, It is no longer a matter of choice of whether to believe anymore... if you read the facts about ME/CFS in the IOM report and delve into all the studies that have been done, and even just use logic i.e. there are millions of people across the world all claiming to be affected by the same group of symptoms... it is apparent that (unless you are a conspiracy theorist and not a rational human being) there is a disease here and these people are suffering. No one has ever seen an electron, but we know they are there because the facts are overwhelming. ME/CFS is at this point.

If you do not recognize ME/CFS in the year 2015, you are going against reason and science. Period. Belief is irrelevant to the discussion. The facts speak for themselves. I think people need to be educated about what is going on in the medical community (outside their own lives) about the current state we are at with ME/CFS (i.e. it is not 1996 anymore where the suffering or realness of it etc is open for discussion). I think, rather, i know.. people are just not aware of the current state of research, science, scientists working on it, reports (IOM etc) that have happened in recent years.

So i think any marketing campaign needs to FIRST AND FOREMOST change the public's perception of this disease... and establish credibility... and do so by supporting with the reality and facts that are available.

There is enough evidence for ME/CFS... in the year 2015 (it is not 1996 anymore)... that any rational, reasonable person cannot deny that it exists... even if they want to quibble on some points. But most people simply have not been educated on the current state of ME/CFS. And that's what i believe the marketing should do.

The dictionary says: Belief is the state of mind in which a person thinks something to be the case, with or without there being empirical evidence to prove that something is the case with factual certainty.

Many with ME/CFS have spent there lives trying to be believed (before we had the current knowledge/facts - IOM report, etc - that we now have at our disposal to point to... which make someone who doesn't believe it look pretty silly if they pride themselves on being a smart/rational/scientifically-minded person). We don't need to ask to be believed anymore, we are past that. And using the word belief implies we are asking them to believe something... when we don't have to... the facts are there. It's time to recognize! People are selfish and given the option of dismissing someone else problems and returning to their own (much lesser) problems... they will... so why should they be given the option to "believe" us. Especially when it is not a question of believing but opening their eyes and seeing. And they will see by being educated.

So a simple tagline along the lines of ... "Help us fight our disease" is something i prefer. Then the the campaign would highlight facts etc that are going on in the medical field in 2015, IOM report etc. We need respect/credibility brought to our disease and only if we get that will we succeed in solving it/funding etc. I think a tagline asking people to believe us is a step in the other direction... back where we were 10/20 years ago.

It's no longer a question of belief... the facts are there... it's about getting our disease recognized. We need to state boldy that it IS a real disease and educate people on this with the evidence (which we have) to support it. Asking people to believe us... gives people a choice to believe or not to believe. You would not see a campaign for Cancer asking for people to believe. That would sound odd. With the facts on the table regarding ME/CFS in the year 2015, there is enough evidence there that someone choosing not to believe looks irrational. This should be our marketing campaign. People need to know there thinking and perception of ME/CFS has not caught up to date with the current thinking of top medical institutions like the IOM, etc. They need to know their perception of ME/CFS is out of date...

As for stigmas, ill add my thoughts:

Stigma 1
-People with ME/CFS are malingers/lazy. People with ME/CFS have always been unsuccessful people due to laziness. They just want hand outs and to take it easy. Just like any other disease: ME/CFS can and DOES affect anybody from any walk of life. It affects people who came from all different occupations: Judges, Athletes, Sports Stars, Scientists, Carpenters, Lawyers, Investors, Hairdressers, Garbage-Truck drivers, Entrepreneurs, PHDs, etc. People need to understand this - and how do you make the under - by telling them it. I was an Entrepreneur myself in the feild of digital marketing - and i sold my business in 2012 for close to $500,000 - just after i got diagnosed and became housebound/bedridden with ME/CFS. I'm not saying this to boast (and, i know, many people have been much more successful financially than me) but i say it to prove a point we are not malingers or unsuccessful members of society. Cancer affects anyone no matter their occupation, so does ME/CFS. I feel that point needs to be driven home. I was lucky to achieve some success before i got sick, and it allows me a lot of leverage with doctors, friends, etc. My heart breaks for people who got sick before they could accomplish some of their goals... who absolutely would have if they did not get sick.... and cannot rebut some idiot who just thinks they are lazy like i can with the proof of what i accomplished before i got sick.

Stigma 2 (And i believe this is the worst Stigma holding us back)
People think ME/CFS is less bad than it is. It is a very under-respected disease. I often say it is like having Cancer, but you just don't die. I remember a friend of mine who had Cancer who was able at one point to kick a ball at the park and he became very fatigued and had to sit down. If a passerby said "Why is he sitting down?" and you replied, "He has Cancer" instantly they would understand and respect why he was sitting. But if you said "He has ME/CFS" it's a different story... EVEN-THOUGH someone with ME/CFS would feel EXACTLY THE SAME fatigue and weakness as my friend who has Cancer in that example. And the person with ME/CFS may even have worse fatigue - many cannot even get our of bed. (A related goal is to educate the public that, like with most diseases, there are degrees of severity of ME/CFS. That is important! People assume that because they know someone with ME/CFS who can play tennis once a week (who would be considered to have very, very mild ME/CFS) that ME/CFS is really a very mild disease. I personally hate this, because while i know that that if that person did not have ME/CFS they would probably play 3-4 times per week (so it is affecting them) other people like me cannot even walk to the back of a supermarket.

Stigma 3
It's not just fatigue. The severe muscle pain i am in all the time is often worse than the fatigue. Due to this muscle pain i cannot be on my feet more than 10-15min per day or the pain in my legs gets so bad i cannot sleep that night. Likewise, typing on the computer like this will cause severe pain in my arms and upper body.

Please appreciate we are very happy to have your help, but you did ask for our opinions and unless we speak candidly to you how can you really get a good insight into our illness so you can market it effectively. I don't usually get involved in writing on the forums due to it worsening my symptoms, but i felt great responsibility to speak candidly about something as important as a marketing campaign for ME/CFS... so that i helps us go forward, and not backwards.

Because ultimately the goal of such a campaign is to help us get funding and a cure for our disease... so we can start living again. The alternative, no cure, for me personally is torment: being in constant physical pain, watching life go by on me, not accomplishing my goals (the hardest part for me because i am such a driven person) while others dismiss my illness simply because of the stigma attached to it.... a stigma that still exists only because they have not been updated with the current facts/findings/medical reports about ME/CFS.
 
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Lissa

Well-Known Member
Thanks for trying to help us. In Australia there has been a TV commercial campaign in recent years educating about depression. And it's been effective in raising the awareness of depression which also had it's stigmas but is now very respected and you'd be called irrational not to believe it is real. And i will add, that depresion is a completely distinct disorder from ME/CFS i just mention it here because it's an example of a disease being marketed to the public.

I've long thought that if a marketing campaign did the same for ME/CFS it would be a huge help for funding, ultimately the funds go to things people respect and know about. So I'm very happy to have anyone on board who can help get us closer to that goal: raising awareness and educating.

I don't think a tagline with the word belief in it would be helpful. It implies we want to be believed - as if the person has a choice whether to believe us or not - and we hope they will choose to. But, It is no longer a matter of choice of whether to believe anymore... if you read the facts about ME/CFS in the IOM report and delve into all the studies that have been done, and even just use logic i.e. there are millions of people across the world all claiming to be affected by the same group of symptoms... it is apparent that (unless you are a conspiracy theorist and not a rational human being) there is a disease here and these people are suffering. No one has ever seen an electron, but we know they are there because the facts are overwhelming. ME/CFS is at this point.

If you do not recognize ME/CFS in the year 2015, you are going against reason and science. Period. Belief is irrelevant to the discussion. The facts speak for themselves. I think people need to be educated about what is going on in the medical community (outside their own lives) about the current state we are at with ME/CFS (i.e. it is not 1996 anymore where the suffering or realness of it etc is open for discussion). I think, rather, i know.. people are just not aware of the current state of research, science, scientists working on it, reports (IOM etc) that have happened in recent years.

So i think any marketing campaign needs to FIRST AND FOREMOST change the public's perception of this disease... and establish credibility... and do so by supporting with the reality and facts that are available.

There is enough evidence for ME/CFS... in the year 2015 (it is not 1996 anymore)... that any rational, reasonable person cannot deny that it exists... even if they want to quibble on some points. But most people simply have not been educated on the current state of ME/CFS. And that's what i believe the marketing should do.

The dictionary says: Belief is the state of mind in which a person thinks something to be the case, with or without there being empirical evidence to prove that something is the case with factual certainty.

Many with ME/CFS have spent there lives trying to be believed (before we had the current knowledge/facts - IOM report, etc - that we now have at our disposal to point to... which make someone who doesn't believe it look pretty silly if they pride themselves on being a smart/rational/scientifically-minded person). We don't need to ask to be believed anymore, we are past that. And using the word belief implies we are asking them to believe something... when we don't have to... the facts are there. It's time to recognize! People are selfish and given the option of dismissing someone else problems and returning to their own (much lesser) problems... they will... so why should they be given the option to "believe" us. Especially when it is not a question of believing but opening their eyes and seeing. And they will see by being educated.

So a simple tagline along the lines of ... "Help us fight our disease" is something i prefer. It doesn't even allow people the luxury of choosing whether to believe it or not, a luxury that only an irrational person would choose to indulge in. Then the the campaign would highlight facts etc that are going on in the medical field in 2015, IOM report etc. We need respect/credibility brought to our disease and only if we get that will we succeed in solving it/funding etc.

As for stigmas, ill add my thoughts:

Stigma 1
-People with ME/CFS are malingers/lazy. People with ME/CFS have always been unsuccessful people due to laziness. They just want hand outs and to take it easy. Just like any other disease: ME/CFS can and DOES affect anybody from any walk of life. It affects people who came from all different occupations: Judges, Athletes, Sports Stars, Scientists, Carpenters, Lawyers, Investors, Hairdressers, Garbage-Truck drivers, Entrepreneurs, PHDs, etc. People need to understand this - and how do you make the under - by telling them it. I was an Entrepreneur myself in the feild of digital marketing - and i sold my business in 2012 for close to $500,000 - just after i got diagnosed and became housebound/bedridden with ME/CFS. I'm not saying this to boast (and, i know, many people have been much more successful financially than me) but i say it to prove a point we are not malingers or unsuccessful members of society. Cancer affects anyone no matter their occupation, so does ME/CFS. I feel that point needs to be driven home. I was lucky to achieve some success before i got sick, and it allows me a lot of leverage with doctors, friends, etc. My heart breaks for people who got sick before they could accomplish some of their goals... who absolutely would have if they did not get sick.... and cannot rebut some idiot who just thinks they are lazy like i can with the proof of what i accomplished before i got sick.

Stigma 2 (And i believe this is the worst Stigma holding us back)
People think ME/CFS is less bad than it is. It is a very under-respected disease. I often say it is like having Cancer, but you just don't die. I remember a friend of mine who had Cancer who was able at one point to kick a ball at the park and he became very fatigued and had to sit down. If a passerby said "Why is he sitting down?" and you replied, "He has Cancer" instantly they would understand and respect why he was sitting. But if you said "He has ME/CFS" it's a different story... EVEN-THOUGH someone with ME/CFS would feel EXACTLY THE SAME fatigue and weakness as my friend who has Cancer in that example. And the person with ME/CFS may even have worse fatigue - many cannot even get our of bed. (A related goal is to educate the public that, like with most diseases, there are degrees of severity of ME/CFS. That is important! People assume that because they know someone with ME/CFS who can play tennis once a week (who would be considered to have very, very mild ME/CFS) that ME/CFS is really a very mild disease. I personally hate this, because while i know that that if that person did not have ME/CFS they would probably play 3-4 times per week (so it is affecting them) other people like me cannot even walk to the back of a supermarket.

Stigma 3
It's not just fatigue. The severe muscle pain i am in all the time is often worse than the fatigue. Due to this muscle pain i cannot be on my feet more than 10-15min per day or the pain in my legs gets so bad i cannot sleep that night. Likewise, typing on the computer like this will cause severe pain in my arms and upper body.

Please appreciate we are very happy to have your help, but you did ask for our opinions and unless we speak candidly to you how can you really get a good insight into our illness so you can market it effectively. I don't usually get involved in writing on the forums due to it worsening my symptoms, but i felt great responsibility to speak candidly about something as important as a marketing campaign for ME/CFS... so that i helps us go forward, and not backwards.

Because ultimately the goal of such a campaign is to help us get funding and a cure for our disease... so we can start living again. The alternative, no cure, for me personally is torment: being in constant physical pain, watching life go by on me, not accomplishing my goals (the hardest part for me because i am such a driven person) while others dismiss my illness simply because of the stigma attached to it.... a stigma that still exists only because they have not been updated with the current facts/findings/medical reports about ME/CFS.


BRAVO Luke! If this were a petition I would sign it! You've covered so much of what I was thinking but hadn't put to words yet. Wonderfully done - thank you!
 

Grace2U

Active Member
I would like to see you somehow emphasize the change of the level of "life engagement" BEFORE and AFTER contracting this relentless disease/disorder. Definitely not "Believe" :( I don't have the "slogan word", but something that describes the SIGNIFICANT change in ones ability to engage in life again.

My adult children are extremely supportive of me, I believe in part, because they new the "old" me prior to a decade ago when I was "Tagged" with CFS. I had a very successful teaching career, was owner and operator of a home-based business, involved in my church, and engaged in political issues. I believe my sisters, parents, and friends of years, also have those experiences to know something has significantly changed me.

Perhaps "Tagged" isn't a bad thought. "Tag.....you've got it." Non-discriminatory, perhaps being at the wrong place at the wrong time.... anyone may get "tagged" by this looming disease....at even the height of their energy level.

Researching CFS I have come across numerous antidotal pieces which emphasize the highly engaged lives of the now near depleted. I have always referred to my mother of 83yrs as the EveryReady Bunny. She defines energy and activity! Yet, my batteries are beyond charging....they need replacing.... The only replacement is that of finding a cause...a cure...I'll settle for a little bit of understanding by the research funding decision-makers as to how devastating CFS is to over 1,000,000 U.S. Citizens.

Post-exertion Malaise and the numerous symptoms that come with it is at the top of my list. No wonder people don't understand this....I push through to visit a hour, with one family of grandchildren, knowing I will be bedridden, with fatigue, significant burning and aching pain, digestive issues, foggy thinking, etc. for weeks following. Yet, as I lie here now, I reflect on my mind's snapshot of the 3 of them that day running toward me...bursting with love for their grandma! Those moments are what keep me going :)

I don't know what THE WORD is..... But, it's not going to be easy to find....something that describes this life-robbing disease :(

Thank you from the bottom of my heart John Kim. I pray you and your loved ones never experience "Tag...you''ve got it"!
 

Grace2U

Active Member
Thanks for trying to help us. In Australia there has been a TV commercial campaign in recent years educating about depression. And it's been effective in raising the awareness of depression which also had it's stigmas but is now very respected and you'd be called irrational not to believe it is real. And i will add, that depresion is a completely distinct disorder from ME/CFS i just mention it here because it's an example of a disease being marketed to the public.

I've long thought that if a marketing campaign did the same for ME/CFS it would be a huge help for funding, ultimately the funds go to things people respect and know about. So I'm very happy to have anyone on board who can help get us closer to that goal: raising awareness and educating.

I don't think a tagline with the word belief in it would be helpful. It implies we want to be believed - as if the person has a choice whether to believe us or not - and we hope they will choose to. But, It is no longer a matter of choice of whether to believe anymore... if you read the facts about ME/CFS in the IOM report and delve into all the studies that have been done, and even just use logic i.e. there are millions of people across the world all claiming to be affected by the same group of symptoms... it is apparent that (unless you are a conspiracy theorist and not a rational human being) there is a disease here and these people are suffering. No one has ever seen an electron, but we know they are there because the facts are overwhelming. ME/CFS is at this point.

If you do not recognize ME/CFS in the year 2015, you are going against reason and science. Period. Belief is irrelevant to the discussion. The facts speak for themselves. I think people need to be educated about what is going on in the medical community (outside their own lives) about the current state we are at with ME/CFS (i.e. it is not 1996 anymore where the suffering or realness of it etc is open for discussion). I think, rather, i know.. people are just not aware of the current state of research, science, scientists working on it, reports (IOM etc) that have happened in recent years.

So i think any marketing campaign needs to FIRST AND FOREMOST change the public's perception of this disease... and establish credibility... and do so by supporting with the reality and facts that are available.

There is enough evidence for ME/CFS... in the year 2015 (it is not 1996 anymore)... that any rational, reasonable person cannot deny that it exists... even if they want to quibble on some points. But most people simply have not been educated on the current state of ME/CFS. And that's what i believe the marketing should do.

The dictionary says: Belief is the state of mind in which a person thinks something to be the case, with or without there being empirical evidence to prove that something is the case with factual certainty.

Many with ME/CFS have spent there lives trying to be believed (before we had the current knowledge/facts - IOM report, etc - that we now have at our disposal to point to... which make someone who doesn't believe it look pretty silly if they pride themselves on being a smart/rational/scientifically-minded person). We don't need to ask to be believed anymore, we are past that. And using the word belief implies we are asking them to believe something... when we don't have to... the facts are there. It's time to recognize! People are selfish and given the option of dismissing someone else problems and returning to their own (much lesser) problems... they will... so why should they be given the option to "believe" us. Especially when it is not a question of believing but opening their eyes and seeing. And they will see by being educated.

So a simple tagline along the lines of ... "Help us fight our disease" is something i prefer. Then the the campaign would highlight facts etc that are going on in the medical field in 2015, IOM report etc. We need respect/credibility brought to our disease and only if we get that will we succeed in solving it/funding etc. I think a tagline asking people to believe us is a step in the other direction... back where we were 10/20 years ago.

It's no longer a question of belief... the facts are there... it's about getting our disease recognized. We need to state boldy that it IS a real disease and educate people on this with the evidence (which we have) to support it. Asking people to believe us... gives people a choice to believe or not to believe. You would not see a campaign for Cancer asking for people to believe. That would sound odd. With the facts on the table regarding ME/CFS in the year 2015, there is enough evidence there that someone choosing not to believe looks irrational. This should be our marketing campaign. People need to know there thinking and perception of ME/CFS has not caught up to date with the current thinking of top medical institutions like the IOM, etc. They need to know their perception of ME/CFS is out of date...

As for stigmas, ill add my thoughts:

Stigma 1
-People with ME/CFS are malingers/lazy. People with ME/CFS have always been unsuccessful people due to laziness. They just want hand outs and to take it easy. Just like any other disease: ME/CFS can and DOES affect anybody from any walk of life. It affects people who came from all different occupations: Judges, Athletes, Sports Stars, Scientists, Carpenters, Lawyers, Investors, Hairdressers, Garbage-Truck drivers, Entrepreneurs, PHDs, etc. People need to understand this - and how do you make the under - by telling them it. I was an Entrepreneur myself in the feild of digital marketing - and i sold my business in 2012 for close to $500,000 - just after i got diagnosed and became housebound/bedridden with ME/CFS. I'm not saying this to boast (and, i know, many people have been much more successful financially than me) but i say it to prove a point we are not malingers or unsuccessful members of society. Cancer affects anyone no matter their occupation, so does ME/CFS. I feel that point needs to be driven home. I was lucky to achieve some success before i got sick, and it allows me a lot of leverage with doctors, friends, etc. My heart breaks for people who got sick before they could accomplish some of their goals... who absolutely would have if they did not get sick.... and cannot rebut some idiot who just thinks they are lazy like i can with the proof of what i accomplished before i got sick.

Stigma 2 (And i believe this is the worst Stigma holding us back)
People think ME/CFS is less bad than it is. It is a very under-respected disease. I often say it is like having Cancer, but you just don't die. I remember a friend of mine who had Cancer who was able at one point to kick a ball at the park and he became very fatigued and had to sit down. If a passerby said "Why is he sitting down?" and you replied, "He has Cancer" instantly they would understand and respect why he was sitting. But if you said "He has ME/CFS" it's a different story... EVEN-THOUGH someone with ME/CFS would feel EXACTLY THE SAME fatigue and weakness as my friend who has Cancer in that example. And the person with ME/CFS may even have worse fatigue - many cannot even get our of bed. (A related goal is to educate the public that, like with most diseases, there are degrees of severity of ME/CFS. That is important! People assume that because they know someone with ME/CFS who can play tennis once a week (who would be considered to have very, very mild ME/CFS) that ME/CFS is really a very mild disease. I personally hate this, because while i know that that if that person did not have ME/CFS they would probably play 3-4 times per week (so it is affecting them) other people like me cannot even walk to the back of a supermarket.

Stigma 3
It's not just fatigue. The severe muscle pain i am in all the time is often worse than the fatigue. Due to this muscle pain i cannot be on my feet more than 10-15min per day or the pain in my legs gets so bad i cannot sleep that night. Likewise, typing on the computer like this will cause severe pain in my arms and upper body.

Please appreciate we are very happy to have your help, but you did ask for our opinions and unless we speak candidly to you how can you really get a good insight into our illness so you can market it effectively. I don't usually get involved in writing on the forums due to it worsening my symptoms, but i felt great responsibility to speak candidly about something as important as a marketing campaign for ME/CFS... so that i helps us go forward, and not backwards.

Because ultimately the goal of such a campaign is to help us get funding and a cure for our disease... so we can start living again. The alternative, no cure, for me personally is torment: being in constant physical pain, watching life go by on me, not accomplishing my goals (the hardest part for me because i am such a driven person) while others dismiss my illness simply because of the stigma attached to it.... a stigma that still exists only because they have not been updated with the current facts/findings/medical reports about ME/CFS.
..... I second Lissa's BRAVO!!! That's the approach....state the facts! I said to my husband last week..."If only the CFS community aired an informational commercial like we now see for Lupus."...... Thank you Luke!
 

Grace2U

Active Member
Hi Jenny,
Yes I believe Mary Dimmock has given permission for this to be spread widely. If you want permission to do something specific with it you could try emailing her:

" The community is welcome to use it if it's of benefit in their advocacy efforts. The document can be accessed at http://bit.ly/The_Burial_of_ME.

Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.”

From here:
http://forums.phoenixrising.me/index.php?threads/thirty-years-of-disdain-how-hhs-buried-me.37318/
Thank you Jenny for sharing..... I read just a few pages (beginning with page 10) of Mary Demmock's Book and believe it to be at the top of my best resources.:) THANK YOU Mary Demmock!
 

Grace2U

Active Member
Just a random thought to throw out: I've always thought a good visual to pursue would be to show people going about their day with life bars above their heads as in a video game and sure, their energy gets depleted but they go to sleep and it gets back up to full energy!
Then there's us.... start with only a few blinking red bars even if we "don't look sick" and then get depleted into negative territory fast...all kinds of warnings about different systems failing... and then trying to rest to get it up which it never really does. Tagline maybe: can you see us?
I LOVE THIS idea SOTI :) I "vote" for YOUr captive idea followed by LUKE's silent listing of CFS facts/symptoms.
 

Grace2U

Active Member
Hi @John Kim , welcome to Health Rising. We’re glad to have you.

Let us not forget the legal system, aside from the well-known abuse in disability cases, which has long been known to abuse ME/CFS patients.

I went thru a nasty legal battle while horribly ill (homebound/bed bound but legally required to appear in court). While my own testimony was practically incomprehensible due to dysautonomia/ME dementia worsened by 2 days in the courtroom, I had personal, medical, and professional witnesses. In the final order, however, I lost nearly every count, because, in the words of the judge, I did "not appear ill”.

I will suffer financially for the rest of my life because of that judge’s erroneous, misinformed, hateful, biased decision. I know I am not alone.

Side note: I looked like hell, to be sure. I ate nothing and drank very little so that I wouldn’t vomit or soil myself. I relied on countless medicines. During breaks, I lay on the floor. I used a wheelchair. To the uninformed I probably looked like I didn't care about hygiene or appearance, and was simply lazy and disrespectful enough to rest my head in my hands all day and rest my feet up on the adjacent chair. You see, even when our “invisible illnesses” become visible, they are often dismissed as lazy, malingering, or worse.
I would love to send a letter to that judge if you are willing to forward his contact info. (I imagine you can contact me via Cort.) That is a disgrace :( I am sorry. :(
 

Empty

Well-Known Member
What if I have spent years doing all sorts of lab tests and nothing is ever abnormal enough to explain my level of disability?

What if no treatment works? I've tried psychotherapy, vitamin & antioxidant & mineral supplementation, meditation, yoga, antidepressants, gluten avoidance, low dose cortisol, t3, various stimulants, various adaptogenic herbs, vacations, nootropics, various dietary modifications, sleep aids, B12 and folate, ignoring symptoms and continuing, total stress avoidance, and more stuff I can't even remember. None of these felt like they were treating the underlying issue (many did nothing), and the effects were so modest I lost interest after a while. A few were even harmful (stimulants and antidepressants).
Hi Pold,

I should have mentioned that post of mine you quoted was a shot at a tagline directed to johnkim... not directed towards patients. Sorry for not making that clear.

I haven't had many tests at all, you see. I have been denied them. I do not know how I would feel if I had had a mass of testing done and it showed nothing. I have some abnormalities in bog standard bloods but even they are ignored. Most of the examples look to me like alternative therapies or psychology and anti depressants would not work for a flu like illness imo. Have you had an MRI scan? POTS testing?
 
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Grace2U

Active Member
I like the idea of battery charges above the heads of people with CFCs and those without.

I'd also thought it would be great to mod my favourite game Skyrim to give it a new quest: "Congratulations!" It would display in writing, "you have contracted M.E.!" You'd then have to try to do a quest to find first a diagnosis against a horde of disbelieving healers and obnoxious Orcs, then a cure, which ultimately doesn't exist. You will travel far and wide looking for the weirdest herbs and spells, which end up not working. During your quest your Stamina bar would constantly deplete on the smallest exertion, if it goes down too far then your health bar would deplete. If you let your health and stamina deplete too much then they shrink permanently, and can't be upgraded when you level up. You have to rely heavily on a paid companion who makes nasty comments at you constantly until finally giving up and deserting you, hopefully while you are staying in an inn and not in the wilderness where you would get eaten by a giant spider. If you are really unlucky you'll have to spend the entire quest in bed with writing on the screen telling you "the light is exhausting you and causing you pain, quickly find a cure" (the non existent one) if you don't close your eyes the stamina bar starts going down. Not a game I'd like to play, not that I could since playing games now makes me dizzy.

Please forgive my nerdy rants.

On a different note I often dismiss obnoxious remarks with humour, though be warned Aussie humour is highly sarcastic, and non Australians can often be unintentionally offended. So husband says "why haven't you done the dishes?" I'll reply with "I leave it like that because I know it annoys you".
Or being a Muslim and wearing a headscarf I have someone ask "what is that thing on your head called?", I'll reply "Steven", no really, what is its proper name? "Mr. Steven"

I mention this because maybe a humorous approach making fun of preconceived prejudices may be an idea, but I'm not American, and in America it could be an awful idea. How about: " I was feeling bored with feeling respected by my community, I was sick of having a fabulous career, and earning a large income, I had too many friends and fulfilling hobbies, and exploring the world was a terrible idea, so many awful things to do. But now my life has changed for the better. Everyone calls me a hypochondriac, I have no life or respect and I gave up all that awful money for the joys poverty. I don't have to worry about travel or hobbies or career. I now have the joys of being confined to my house... Etc. but then maybe not everyone understands irony.

Why have friends when you can have rejection? Why have wealth when you can have poverty? Get your CFS here! Call now and we'll tie you to your bed for six months, unable to move, with a loudspeaker over your bed telling you that you're lazy. Ok I'm getting a little dark now.

Stigmas: lazy, not trying, secretly on drugs, like being sick, don't want to get better, haven't tried the latest aardvark juice so I deserve everything I get, maybe if you give up ( insert every food or beverage known to man) then you'll get better, are you sure you're not depressed? You're faking sickness to get the attention of the people who are ignoring you because you are sick.
Sorry for the too-long post.
If Cort's site allowed for it I would give your post 5 Stars! Even as an American I get and appreciate your sarcasim :) My daughter and I use it all the time while other family members just don't get it! Interestlying enough she and I both have a love for Australian Cattle Dogs..... My best buddy, "Jeb", is my Health Rising pic.
 

Grace2U

Active Member
Chronic Fatigue Syndrome is Cancer, is Hypothyroid, is POTS, is Lyme Disease, is M.S. is Myalgic Encephalomyelitis, is Heart Disease etc. etc. etc. Get a real Doctor, get a real diagnoses and discover which disease you really have.
Do you know something about CFS we, as a CFS community, should know? I am confident my "real Doctor"/Neurologist, who was recognized and featured in "Best Doctors" by the U.S. News & World Report, will arrive at a diagnosis within this calendar year. If, as you suggest, CFS is actually another disease or condition, wouldn't the multitude of tests I've had indicate one of the above? Does POTS or Thyroid issues bring with it burning and aching pain? I think back decades ago when CFS was labeled the "Yuppie Disease".....which of the above was that? If you are right, then we should each take a different approach to solving this unrelenting affliction. Thank you for your thoughts.
 

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