Everyone who has CFIDS has hated the name, and in recent years there has been increasing pressure on medical authorities to find a more appropriate name for it. A "Name Change Advisory Board" comprised of some of the world's leading CFIDS specialists was put together a few months ago to try to figure out a solution. They presented their recommendations at the 2007 International Association for Chronic Fatigue Syndrome conference in Florida last month.
The Board concluded that "ME/CFS" is a better name for the disease now known as CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) or CFS (Chronic Fatigue Syndrome). I feel this is a significant improvement.
While "ME/CFS" may not seem like a big deal (it's known as that in Canada and in many other parts of the world), I think it is a monumental step forward. Patients can, with medical confidence, call their disease "ME/CFS" or leave off CFS completely -- it's their choice.
They can rest assured in its diagnostic accuracy; the CFS Name Change Advisory Board is probably the most impressive committee of eight CFIDS experts ever assembled in one room, and their opinion matters.
Although ME has historically been used to describe "Myalgic Encephalomyelitis" (as CFIDS is called in the UK, much of Europe, Australia, and New Zealand), the Advisory Board felt that "Myalgic Encephalopathy" was medically more appropriate. The reason involves how the names break down:
Myalgic -- means painful muscles
Encephalo -- means brain-related
. . . and the two choices to follow "myalgic encephalo-" are:
1. myelitis -- means an inflammation of the brain and spinal cord
2. -pathy -- means disease or disorder of.
Since the Board agreed that inflammation of the brain and/or spinal cord is not present in all CFIDS patients, they therefore deemed encephalomyelitis less diagnostically accurate than encephalopathy. (Encephalomyelitis is actually one kind of encephalopathy.)
Brain abnormalities (encephalopathy) are common to all cases of CFIDS. These are most easily identified by an alphabet soup of various brain scans, neurocognitive problems, headaches, cognitive fatigue (the infamous "brain fog"), sleep disturbances, and low levels of several neurotransmitters.
I think the new name, Myalgic Encephalopathy, is a huge improvement, capturing the neurological and muscular abnormalities, even though it leaves out the immunological and endocrine abnormalities. But at least it gets the pejorative and dismissive "fatigue" out of the name. This is a big step in the right direction. It gives a medically accurate description of the illness itself and removes the stigma of having a disease with "fatigue" as the primary descriptor.
But apparently the "ME" part still has to share the name with the "CFS" part. Why not just drop the CFS or CFIDS part of the name? Well, it's due to the ICD-9 codes. ICD-9 stand for International Classification of Diseases, Ninth Revision, and it's the official system used to assign codes to diagnoses and procedures in the US. It's also used by Medicare, which determines what insurance will pay for, and, ultimately, by Social Security Disability, which determines what is considered officially disabling.
One of the reasons for leaving CFS as part of the new name is that the same ICD-9 code can still be used. Changes to the code do not come easily and usually take many years, but hopefully as ME/CFS gains acceptance, Myalgic Encephalopathy will be added to the code and the CFS can finally be dropped.
And when that comes, it will be a day I dance in the streets -- that is, as well as a person with ME can dance! A few short hops on the lawn may have to suffice.
ETA: When I was a patient of Dr Dan Peterson (one of the world's leading ME/CFIDS clinicians) several years ago he told me that every ME/CFIDS patient he'd seen has tested positive for the virus HHV6-A. I have it too. He told me that in time HHV6-A will come to be regarded as the cause of ME/CFIDS. That virus has recently been implicated in causing MS as well.
But I think it's a little more complicated than just a virus. I think that toxins play a big role, as well as sub-clinical cases of intestinal parasites and even candida.
I have to be very strict about what I eat and what supplements to take in order to function at the level I do. Even so, some days my health fluctuates wildly in spite of all I do to keep on an even keel. It can be very frustrating; I try not to let it get crazy-making, but it's difficult because I crave stability, predictability and security so much.
And I don't look sick at all. Most days I look great no matter how crappy I'm feeling inside. But of course, we all know that it is better to look good than to feel good. </sarcasm>
It's an interesting social phenomenon how for some reason it has become acceptable for ME/CFIDS to be a scapegoat for prejudicial treatment that no one would dare try to pull with any other illness. Look at what I've been going through with my ADA complaint against that health clinic in SF. If I'd had MS, AIDS or cancer, for example, they never would have dared to treat me the way they did, but because it's "chronic fatigue syndrome" (which it actually isn't, which they are supposed to know ), all of a sudden it's okay to insult me, imply it's a psychosocial disorder or AIYH, ignore my attempts to resolve the complaint or even laugh at me when I call on the phone (it happened to me for real, but I left it out of my already-lengthy complaint).
Having ME/CFIDS all my adult life has been an extended window into my true character, in terms of how I respond to it, what kind of coping skills I rely on and what kind of attitude I have about the whole thing. It's shown me parts of my personality I was ashamed of and other parts I didn't even know were there. I've had to plumb deep inside to look for hidden strengths, without which I wouldn't be here today posting on this board. No matter what the medical establishment can do for me in terms of treatment, I still have to live with this 24/7, and it's been an opportunity for me to try and put my house in order, as it were. It's been an opportunity for growth, an exercise in finding the glass is half full after all.
But I'm still glad they're trying to take the word "fatigue" out of the name! It'll make my glass seem even fuller.
ETA: I found more info on encephalopathy. I think it's appropriate to be part of the new name for CFIDS.
Key Features of an Encephalopathy
To provide some clarification, the key features of an encephalopathy (all of which are consistent with ME/research-defined CFS) are listed below:
1. A significant and sometimes diffuse disorder of the brain that can involve changes to both structure and function.
2. A neurological disorder than can be caused by infections (viral, bacterial, prion), metabolic or mitochondrial dysfunction, exposure to toxins (such as drugs, chemicals, pesticides), or lack of oxygen or blood supply to the brain.
3. A disorder that commonly produces serious disturbances in cognitive function - involving memory, concentration, etc.
4. Other neurological symptoms that can be found in an encephalopathy include myoclonus (twitching of muscles or muscle groups), nystagmus (involuntary eye movements), tremor, muscle atrophy and weakness, disequilibrium (and unsteady gait), paraesthesiae (sensory disturbances), hypothalamic dysfunction, orthostatic intolerance, and postural hypotension.
5. More serious neurological symptoms, as described in section 184.108.40.206 of the Chief Medical Officer's report (such as seizures), can also be found in encephalopathies.
6. Mood disturbances can occur.
7. And abnormalities can be found on neuroimaging, spinal fluid examination, and electroencephalograms - depending on the cause of the encephalopathy.
A Few Examples of Encephalopathies
Examples of well recognized neurological encephalopathies include:
* Bovine spongiform encephalopathy ('mad cow disease')
* Coxsackie virus encephalopathy
* HIV encephalopathy (and AIDS dementia complex)
* Hepatitis C encephalopathy
* Liver (cirrhotic) encephalopathy
* Lyme disease encephalopathy
* Mycoplasma encephalopathy
* Sarcoid encephalopathy
* Wernicke's (thiamine deficiency) encephalopathy