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Letters From Our Readers – Name Change Discussion 9-19-07

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A Woman of Few Words

Let’s DO it! – Kathleen


AME for a Cure

I would love to see the name changed to AME – Autoimmune Myalgic Encephalopathy – so we could market our cause more effectively. “AME for a Cure” would be a great slogan to print on t-shirts, mugs etc. for fundraisers. What do you think? – Barb


Get Rid of “Fatigue”

I would like to see the word fatigue removed from the name entirely. We use that word to describe something that is far beyond fatigue. Most of the uninformed take the words chronic fatigue to mean that you’re tired a lot. So, I guess I’m voting not CFS. The words ME stands for are hard to pronounce, and don’t mean anything to people who don’t have it or are not in the medical profession. When I am asked what my health problem is, I would like to be able to give them a simple name that would be in some way descriptive. So, I guess I’m also voting not ME. Since I have FM as well, I usually just say I have that when asked. So many have been diagnosed with FM that lots of people I know are becoming familiar with it.

No matter the name change, I’m so glad for the support you offer those of us who struggle with this syndrome. (I wonder why it is called a syndrome rather than a disease. It tends toward thinking it is just in your mind, not real.) In many ways, it seems that getting the word out about all this is what is most needed. I have a very understanding husband and many friends who encourage me but I know that isn’t true in many, maybe most cases. Thanks again for your work. – Jeannette


New Name Might Mean Earlier Diagnosis

My son was twelve when suddenly one day he could no longer get up from his bed. He was bed bound for six months and had to use a wheelchair for 12 more months. All but one of the 10 or so local doctors we visited diagnosed him with depression and left him for a mental case. When asked about his high titers of EBV, the diagnosis of chronic fatigue was ludicrous to them. They said he is just plain tired and lazy and he does not want to go to school.

If the words Myalgic Encephalopathy/Encephalomyelitis were to be used for his diagnosis, I am totally and 100% sure that he would not have had to suffer countless visits, abuse and mockery – which to this day he still gets from ignorant people…I would get rid of the word CFS completely, to dispel forever with the over simplistic and superficial connotations of CFS. The European definition of this illness, ME, would also do away with the initial American references of the “yuppie flu,” since ME has a long history of cases and epidemics going back several centuries.

Change CFS to ME as Myalgic Encephalopathy/Encephalomyelitis. People would have more respect for patients suffering this debilitating disease. Doctors would diagnose it sooner because they would suffer no shame from other colleagues for making a ridiculous diagnosis. Patients would also recover sooner since a prompt diagnosis would set them on to the road of better diet, sound sleep, anaerobic exercise and immune defense right away. – Stephanie


ME/CFS Will Not Be Understood

I disagree with the name change. People who do not have this illness will never know what you are talking about if you just call it ME/CFS. – G


Whatever We Call It, Find a Cure

There’s no reason to call this many-headed monster ME/CFS. Might as well say I’m eating a bowl of vanilla/vanilla ice cream. Call it ME; call it Elmer Fudd; call it, as more than one doctor has said, “I don’t know what’s wrong with you.” I wouldn’t care what it’s called if someone would get cracking on trying to find a cure instead of spurious and incredibly expensive attempts to mask the symptoms of the rotten thing… Call it ME-CFS-CFIDS-EBV-Brainfade-I don’t know what’s wrong with you. That will cover all facets of the illness and the ignorance of doctors. – Lea


Diagnostic Test Needed More Than New Name

No matter what name you use, people with Chronic Fatigue Syndrome, other autoimmune dysfunctions or chronic mycoplasma-fungal infections are going to get little acknowledgement/cooperation from the CDC, insurance companies, or even most doctors, because the symptoms are varied and there is not a test or test panel that clearly defines these conditions (with the exception of PCR for mycoplasma).

Furthermore, whereas “encephalopathy” clearly describes symptoms found in almost all CFS sufferers, “myalgia” does not. I have interviewed many, including vets recently returned from the Middle East. Although several mentioned joint pain, very few specified muscle pain as one of their symptoms. (Next to extreme fatigue, brain fog and IBS were the most commonly noted symptoms among those I interviewed.) – Therese


ME/CFS Covers So Much More

I think it is so important to make this change over from CFS to ME/CFS, and eventually just ME. It is so much more than just CFS, even though there is a stigma also attached to the illness. ME/CFS covers the whole gambit of the illness… This name definitely indicates there is something going on not only with the immune system, endocrine system but another major system, the brain. I mean CFS alone is important because the fatigue is unbelievable, but it leaves the brain out and all that it operates (or doesn’t when sick). This is such a great idea. I can’t wait to cast my vote! – Doe


Non-Acceptance of Encephalopathy

When we heard the term ‘name change’ at first, people with ME in the UK thought you meant change the name from the disastrous, relatively recently invented term Chronic Fatigue Syndrome back to the accurate original WHO-recognized Myalgic Encephalomyelitis.

That [Encephalopathy] has been introduced from nowhere over the last few years is just a red herring. Myself and every person with ME I know in the UK, and on Internet groups, are appalled by ProHealth’s endorsement of the term Myalgic Encephalopathy. We do not accept that term and never will; it is inaccurate and has no ICD Classification, which is exactly what the psychiatric lobby wants.

We also have many years experience of the high levels of spin and promotion of the useless and often damaging CBT/Graded exercise fraudulent ‘treatment’, which has damaged so many people with Canadian definition ME here in the UK. Do not think the benign sounding CBT/GET ‘therapy’ produces benign results. It has put people in wheelchairs and has taken many people from moderately ill to very severely ill. Of the very/severely ill PWME represented by the 25% Group here in the UK, 80% found that graded exercise made them more ill, indeed some were not severely ill before the ‘treatment’ of CBT/GET.

The CFS CBT/GET ‘treatment’ is really an abuse of CBT proper, and the therapy world should be concerned at the misapplication of therapeutic methods, indeed the distortion of therapeutic methods in such ways that harm is the result, on severely organically ill citizens.

You have certainly lost support in the UK as hardly anyone wants to call Myalgic Encephalomyelitis Encephalopathy, and those who thought it may be a good name soon change their minds when they understand the implications. The name change is a legal disaster waiting to happen. Please do not add promoting CBT as a ‘treatment’ or for ‘psychological support’ either.

We need homecare, our legitimate health insurance and legitimate sickness benefits first, a roof over our heads, our legal status as full citizens back, and proper relevant biomedical research building on existing research, first and foremost….

Here in the UK, the vast majority want to retain the name Myalgic Encephalomyelitis, and to have the Canadian Definitions endorsed and adopted by our health policy makers and the government, we want our government to fund relevant biomedical research and for the rest of the world to wake up to the fact that the psychologising spin here in the UK is very advanced, and so we can detect the direction of future problems for people with ICD Canadian Definition ME (itis) if the name [Encephalopathy] is adopted…. – Victoria, Person with ME and UK Citizen.

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8 thoughts on “Letters From Our Readers – Name Change Discussion 9-19-07”

  1. annavirgil says:

    I feel we should incorporate the word “cancer” in the name. Then we might find a cure and get funding for research. This is a lifetime cancer that just keeps reaching out and claiming more and more of our bodies functions. We just dont die as quickly.

    1. beckysanders says:

      I agree!!!!!!!!!!!!!!!!!!!!!!!!!!! Somewhere I saw ,

      MUPS Multible

      Very funny-not!!!!!!!!!!!!!!!!!! I want to live!!!!!!!!!!!!!!!!!!!!!!!!!! WHY DON’T THEY HELP US????????????????????????????????????????

      So sad aand angry, and tired of Drs…………..NO HELP!!!!!!!!!!

      Frustrated, SOME ONE HELP US!!!!!!!!!!!!!!!!!!!!!!!!

      Drs don’t want to see me coming, treat me so mean!!!!!!!!!!!!!!!!!

      Becky Sanders

  2. brightraven says:

    I wonder if any effort at all is being made to change the hugely outdated case definition and diagnostic criteria as well. As most know, the current Fukunda criteria is too vague and is not an accurate depiction of CFS, particularly since it can exclude post exertional malaise (which is truly the hallmark of CFS).

    I am very optimistic about the name change and hope it will lead to good things. However, I feel it is equally important to update the case definition, perhaps adopting the Canadian version, which I’ve posted below. This is not only more accurate, but a definition agreed upon by just about every CFS specialist in the U.S. Adopting this case definition will not only help legitimize CFS, but will help bring better and quicker diagnosis, treatment, awareness and research. It will also help to solve the problem of prevalence, and eliminate those with other “fatiguing” illnesses.

  3. ninibmr says:

    I agree with Barb who posted the great idea of naming it AME and using “AME for a Cure.” What a wonderful idea! Let’s all get on the bandwagon for this one! The only specific I could get from all of my testing was that I have an autoimmune disorder, so this fits! Bonnie

  4. bonetobone says:

    I also really like the name AME. It’s clear, simple, and even a bad doctor should be able to remember that title. I also like the idea of incorporating “cancer” into the definition as these illnesses really do steal your life, as one poster put it. And we don’t die physically, it’s our LIFE that is taken.

  5. beartow says:

    Is the new name change of ME the only option we have? Is this permanent, etched into stone? I previously felt it should be CFS/ME. I am now very concerned in reading other’s replies about ME being the new name. Has enough time been spent in weighing all the pros and cons for the name ME? Is ME a valid ICD code? Is placing the focus on myalgia the right direction to go? Your suggestion of a Neuro Immune Disorder makes sense — if any sense can be made of this nightmare of ups and downs. After all, if this is a neurologic disorder then work with that. I am so tired (again, no pun intended) of trying to have to explain what is wrong with me and then being ashamed of what is wrong with me. And I am with you — we all have much to be thankful for in having Pro Health and a world wide forum in which to exchange information.

  6. calette says:

    Please don’t change the name to exactly the same name!

    I agree to Barb and Jeannette’s suggestions. Please take these seriously. I have spent over thirty years being embarrased every time someone asks me what is wrong with me. I can hear the new conversation in my head. It goes like this-
    “What’s the matter with YOU?
    me “I’m sick.”
    “What is it?”
    me “Oh, I have MECFS”
    “What’s that?”
    me “It means myalgic en-something or other, chronic fatigue syndrome.”
    ” Oh, yeah, ??????…” as the person rolls theirs eyes thinking I’m so pathetic,

  7. nana33 says:

    I feel the ME sounds like I AM the problem. If I say I have ME/CFS and FM, they will laugh and say yea, I thought you were the problem. ME is demeaning to me!

    Its bad enough to have the FM pain and fatigue, but add a name that sounds as if its “all in my head” is depressing to say the least. That is all I have time or energy to say. Thankyou for your work in this area.

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