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Fighting About The Name ME/CFS

I would like to ask all of you to stop fighting about the name Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Names are just groups of words strung together. They often have preconceived linguistic meanings but those can be changed through branding. Just look at Obama's campaign. He has the worst name for a president imaginable. A Muslim-sounding first name, Sadam's middle name, and a last name that sounds almost exactly the same as Osama, a word that rings a terrible feeling in the heart of every American. Not to mention the color of his skin, which unfortunately makes it all worse.

In 2008, Obama completely changed the feeling associated with his name through well-thought-out branding alone.

Corporations spend billions of dollars on advertising which connects precisely chosen emotions with their brand name. They spend that much money on it because it works. When the oil company BP had their terrible oil spill years ago guess what they spent the most money on? Not cleaning up the spill or repairing old infrastructure that caused the spill, but on advertising. They changed their logo to have green colors and launched a massive advertising campaign about how environmentally friendly they were. Because more important than the truth is the emotional response people had with their brand. Which can be changed. And was much more successfully changed than if they spent the money on actually becoming more environmentally friendly. We don’t have the money for advertising or PR campaigns but my point here is that the meaning connected to names is not set in stone and can be changed.

I understand that most of you dislike the name Chronic Fatigue Syndrome because of how it feels, but trying to change the feeling associated with the name of our illness now is a futile waste of time. Because of the lack of funding, we have no large organization like the American Cancer Society or the Epilepsy Foundation to do the branding needed to change how the name comes across and feels to people. It takes skilled, educated marketing wizards to do this kind of work and they are not cheap. So fixing the perception of the name Chronic Fatigue Syndrome isn’t going to happen now. Research discoveries will force increased funding and that’s the time to try to rebrand the illness.

Furthermore, I don’t understand how you all expect to spread awareness of a name change when we can’t even manage to spread awareness about the illness itself. There are no channels to spread a name change. It would just lead to a third name out there getting used.

Imagine a president running for election and using different names in different parts of the country. It would effectively split his/her votes by the number of names used and that president would not get elected. We really need to be consistently using the same name that has been used for years. I believe it’s better to use the name Chronic Fatigue Syndrome in the USA than Myalgic Encephalomyelitis because it’s been used for 40 years and we need to maintain connection to that history. Every person who hears the name Myalgic Encephalomyelitis and doesn’t hear about Chronic Fatigue Syndrome doesn’t make connections if they hear the name CFS later. I use both to unite the world under the same name but it’s really not ideal. All the prejudice and people not taking it seriously, introducing it with two names just adds to the question mark weirdness and likelihood whoever is hearing about will just shrug and forget it. I personally have Chronic Fatigue Syndrome and I am not ashamed or embarrassed. But I will continue to use both names religiously to include sufferers in the UK and not contribute to the opposite affect- less awareness about ME.

Trying to change the name now also makes us look ashamed and embarrassed, like we are running away from the truth. This is the opposite of what we want. We should be standing tall exemplifying the certainty and reality of our illness. This may seem like a small thing but it’s actually huge. People pay more attention to this than they do to the words in the name. Imagine if Barack Obama cowered every time he said his name or tried to change it before running for president. It would only solidify all the prejudices associated with his name. Because it would mean he believed the prejudices were true. Instead, he stood tall with his given name and showed people who he was, gave speeches that created immense emotional response which he connected to his name and branded the name itself with things like the logo of farm fields stretching off into the sunset (symbolizing prosperity and a brighter future) inside the "O" of Obama. That’s just one example, they made all kinds of branding efforts.

So I’ll repeat, that to me, I have Chronic Fatigue Syndrome and I am not embarrassed or ashamed. It is the rest of the world who should feel embarrassment and shame. (Yet I will continue to religiously use ME/CFS)

There will be a time to change the name because the current two names are names of syndromes (collections of symptoms), not an illness. When Superman aka Ron Davis finishes the Nano Needle diagnostic tool it will prove this is an illness not a syndrome. When he then disseminates it to every lab in America and people all over the world start getting diagnosed, showing it to be a much more prevalent illness than anyone thought, the world will take notice. When he either figures out the mechanism or a cure, this will be the time to change the name for several reasons.

When people try to change the name now, they do so with significant ignorance about what is causing the illness. Suppose they were successful at changing the name (which they wouldn’t be for aforementioned reasons), Ron Davis has personally told me this could cause problems restricting the kind of research NIH and private donors want to support because it will define the illness as having a certain cause. I’ve read name after name proposed in forums and comments over the years that make so many ignorant assumptions about the nature of this illness. This needs to stop. You don’t know what causes ME/CFS - even the few of you who go around posting everywhere with absolute certainty about it. You’re just doing harm by causing closed mindedness. Superman will solve this through extreme open mindedness, following the science wherever it leads. And he will look into all possibilities without discrimination.

When a big scientific breakthrough happens, the news and publications will spread throughout the scientific community. This is the time to change the name because we can piggyback the new name on the back of this unique time of awareness. Researchers will also know what causes the illness and can finally give it an appropriate name that supports the cause and severity and doesn’t lead to furrowed eye brows. Trust me, Ron is already thinking about this and has already come up with scientifically sound names pending proof of various hypothesis and axed them because they don’t do justice to the severity and level of suffering of ME/CFS. He’s thinking about this and as long as I am able to, I will hear whatever name he’s thinking of before it goes public and get to veto if it has any whisper of negative insinuations.

There we have the best scenario for a name change, based on the true cause of the illness, and with an easy way to disseminate awareness of the new name, associating it with new scientific discoveries.

There’s also a group of you who are ME police and post everywhere you can to call it ME. I once simply forgot to add ME to CFS in one of my posts and someone commented to "please call it ME". Shame on you. This just distracts everyone from the content of what I worked very hard to communicate and which was meant to help you. I’ve also even seen someone comment on my page that CFS isn’t the real illness ME is the real one along with some gibberish about CFS being caused by some very specific thus and such and ME being caused by something else ridiculously specific. This is outrageous and so idiotic I’m almost at a loss for words. First of all, why try to separate them? This is only doing harm. There’s no way to differentiate between them scientifically so what’s the point? You’re just causing division and distress. Secondly, despite whatever kooky Judy Minkovitz articles you post, there is no science behind this. The two names are geographical, that’s all. One is used in the UK and one in the USA. Until SCIENCE shows otherwise they are the same illness. As far as the supposed "outbreak" in incline village we know nothing about it or if it was even an outbreak and not a "cancer cluster". Every illness that affects people randomly will wind up with random areas of concentrated numbers of patients in certain areas. It means very little at this point. This is what I believe to be the case until proven otherwise by SCIENCE.

I don’t even understand the desire to change the name to Myalgic Encephalomyelitis. Myalgic Encephalomyelitis is used in Europe and prejudice is worse there. Proof that a science-y sounding name does not help awareness or understanding. Even if we could change the name and unify everyone under ME (which we can’t) it would accomplish nothing in fact it would cause harm as I’ve stated earlier because it would disconnect the illness from the last 40 years of suffering and prejudice in the USA. NIH doesn’t get to just get away with what they’ve done.

Enough with the petty infighting in the ME/CFS community. I sometimes think we are our own worst enemy. Groups splintering off into smaller subgroups of online communities often just diminishes our power and leads to ignorance in these subgroups due to lack of diversity of opinion. We’re all fighting for the same thing and it’s time you all acted like it.

A lot of the reason for this is the lack of a central organization uniting us all like other illnesses have. The absence of which gives random people on the internet a much louder voice than they deserve considering their knowledge, experience and intelligence. I see this problem all throughout the ME/CFS community.

We have such limited energy and resources. All the time we spend fighting about the name of the illness is time not spent on something that would actually make a difference.

It’s time to put all of this bullshit behind us and look at what we all have in common and come together around it. We are much stronger as one than a bunch of different bickering factions.

But I guess it depends on what you truly want. Do you want things to get better for ME/CFS patients or do you want an outlet to vent your anger, frustration, heartache, sadness etc at the expense of the wellbeing of ME/CFS patients around the world? I’ve got news for you regardless - we all feel those same things. And we all want a cure.

Our best chance at a cure is working together on things that matter and make a difference. Stop fighting about the name. Call it ME/CFS until the research shows us what it should be called and gives us a way to actually officially change the name. Stop the splintering and divisiveness based off ignorance and pettiness. We are stronger as one, united by a common goal and a common name.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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