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.