What's in a name? A lot it would seem.
The more I think about my diagnosis of Fibromyalgia, and the more I think about my other diagnosis of Chronic Fatigue Syndrome, the more I wonder about both diseases. Depending on who you speak to, you'll realise that not all doctors even refer to these conditions as "diseases". Some doctors refer to FM & CFS as syndromes. Some doctors refer to them as mental illnesses rather than neurological conditions, which is completely incorrect. Then you have the doctors who don't refer to them as anything because they unfortunately believe neither FM or CFS exist, apart from in their patient's head.
Doctors did not come up with the name for CFS, just as they didn't come up with the name for Fibromyalgia. The CDC (United States) were responsible for naming these two (and often overlapping) medical conditions. Heresay from a lot of different sources say that CDC employees still often joke about both conditions. They've always joked about CFS being "The Yuppee Flu" however apparently, they call Fibromyalgia "The New Yuppee Flu". As I said, this is just heresay...however when you look at the CDC's research about both conditions, and when you listen to the attitudes of Reeves and other CDC staff members, you do tend to quite easily beleive the rumours about their "Yupee Flu" comments, or jokes rather. I personally can imagine these idiots in their little white coats joking about both FM & CFS while burying and ignoring every piece of scientific data, research and statistics they receive about both conditions, but that's just me.
The CDC renamed Myalgic Encaphalomyelitis (M.E.) in the 1980's after the Lake Tahoe, Nevada outbreak - they called it Chronic Fatigue Syndrome. The people in Nevada unmistakably had (have) M.E. The MRI findings and other medical testing each patient underwent proves this. Unfortunately though, M.E. stuck like glue and has caused mass confusion since. CFS is often referred to as CFS/ME. In other words, both conditions are referred to as the same disease and this is absolutely not the case. The majority of patients diagnosed with CFS/ME are never told to go for an MRI, not before their diagnosis or after it. The reason for this in Australia is because of the restrictions the government has put on diagnostic and medical testing for not only CFS patients, but FM patients as well. That's right, the government have put a limit on what tests CFS/FM patients can and can't have. Very, very disturbing. Anyway, in order to receive an accurate diagnosis of Myalgic Encephalomyelitis, the patient must fit certain diagnositc criteria. This includes distinct lesions on the brain. Therefore, patients with a diagnosis of CFS/ME who have not been sent for an MRI have been misdiagnosed. This is a certainty. I'm sorry, but there is no way around it.
To be diagnosed with CFS/ME - depending on which of the 11 ways you can be diagnosed, a patient simply needs to report feeling fatigued for 6 months or more. This is enough for a lot of doctors to make the diagnosis. In Australia, the diagnostic guidelines for CFS are the same as Canada's. To be diagnosed with FM, a diagnostic test using "Tenderpoints" is given. If a patient reports more than half the 18 tenderpoints to be painful when pressure is applied, they are often diagnosed with FM. They are then told (like CFS) that all their other symptoms (including Depression and Anxiety) are due to their newly diagnosed, incurable disease. This diagnosis often happens when not every other medical condition has been ruled out.
For instance, my GP wanted me to go for an MRI. She was worried, and still is to my knowledge about the possibility of Multiple Sclerosis. When she told me she wanted me to go for an MRI (over a month ago) - I told her I didn't want to as at the time, I was sick and tired of spending all my time between doctors, pathology centres and x-ray places. I needed a break! She was fine with this and said that from then on, she would leave all care regarding my disease up to my specialist. My specialist feels there is no need for an MRI. Even though a diagnosis of FM or CFS should never ever be made until ALL other medical conditions have been ruled out...he doesn't feel the need for an MRI. He doesn't feel the need to send me for one? Or is it more accurately that according to government guidelines, he's not actually meant to send me for one? I personally suspect the latter given the facts at hand.
CFS/ME patients are being told they have M.E. when they don't. Fibromyalgia patients are being told they have Fibromyalgia when in a lot of cases, they don't. These diagnosis's for the most part are being made before other medical conditions are being ruled out. M.E is a potentially fatal disease...if someone with Myalgic Encephalomyelitis does too much, if they put too much strain on their heart by overexertion, they can and do die. M.E. patients are required to wear heart monitors so they can be extremely vigilant and aware of when they need to rest. Making sure you don't do too much when you have M.E is a matter of life and death...it only takes a tiny bit of research and 5 minutes reading to know that. It only takes 5 minutes (or less) worth of reading to know that CFS and M.E are two very different medical conditions. A lot of M.E patients don't even suffer fatigue. Fatigue is NOT even essential to the diagnosis of M.E!!! The CDC have not only caused mass confusion for CFS sufferers by linking the name to M.E but they've done an amazing amount of damage to M.E patients, especially severe M.E. patients who must wear heart monitors and stay close to their oxygen tanks!
I honestly understand why CFS and FM are often referred to as "wastebasket" diagnosis's. Some people refer to them as a diagnosis of "elimination" - I absolutely don't use that definition though simply because the majority of us have not had every other medical condition eliminated before our diagnosis. Any diagnosis of CFS/ME is incorrect - that's a fact. Unless a CFS patient has undergone testing for M.E (a condition which there are numerous medical tests for) and been diagnosed with M.E, then they don't have it. Myalgic Encephalomyelitis MUST be separated from CFS for the benefit of all involved. This won't happen unless the CDC pull their finger out though, which is unlikely to ever happen.
CFS and FM are real...I'm not saying they're not. To those of us who are sick, unable to leave the house or in some cases, bed...to those of us who are reliant on many medications, walking aides, wheelchairs...to those of us who suffer every single symptom of CFS and FM, our medical condition is extremely real. The friends we've lost, careers we've had to give up, ridicule and misunderstanding from those closest to us, and worst of all, the shit we've had to (and still do) put up with from our doctors, CFS and FM are real. Something that's stolen our lives from us has to be real. None of us asked to get sick, none of us choose to stay sick, simple as that. The fact is though we're all suffering from something the medical community DO NOT understand. They say they do, but they clearly don't.
Chronic Fatigue Syndrome and Fibromyalgia: Both named by the CDC. Both are serious diseases with ridiculous names that alter the public's perception of how sick we really are. Any research (including the XMRV link) to do with both are covered up by the CDC. Both diseases have suspicious restrictions on them in relation to diagnostic testing and even treatment. Both are neurological conditions being palmed off as psychiatric conditions. Another widely misunderstood condition (M.E.) was deliberately linked to CFS by the CDC...unfortunately advocacy groups ignore that fact and still use the CFS/ME terminology. Both diseases have diagnostic guidelines which make absolutely no sense. Both diseases DO cause immune dysfunction but this fact is also covered up and flat out denied by the CDC.
Both these diseases just don't make any bloody sense and on top of being sick day in, day out.....we're forced to live with this knowledge. We're forced to live with not only the physical and cognitive symptoms, but the misunderstanding and confusion about these diseases, not just among the general public - but among the medical community as well. No wonder we need to be our own medical advocates, THERE IS NOBODY ELSE.
So, what's in a name? You tell me.
Em
xoxoxo
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