Jayhawk I admire your honesty, thank you. I never believed in CFS also, although in my country at the time it was called ME when I was healthy (now in the UK it's called 'CFS/ME', which when used is simply called CFS like in America).
I too only believed in ME when I ended up disabled by it and the rest is history. I was in denial for years and actually got a lot worse because to give in to my symptoms, (before they made me bed ridden) well by doing that I saw myself as weak and useless person. Back then I was only medium affected and could get out of the house and drive a car a short distance. So I did mini relapses frequently to prove to myself on occasion I could do things. Sort of like episodic masochism, ending up on the floor after playing squash or tennis and not being able to walk and be helped back to the car. People thought I was crazy doing that to myself. As ME progresses then one has no choice to give in to symptoms (e.g back off in a symptom flare), one is simply disabled full time, with no remission.
I thought like this as I was never told what ME was, and the doctor told me outright it was a psychiatric problem found in school phobics and the depressed. So I couldn't become that person, and had to join a gym and get fit and go back to college full time, which of course failed. (So my doctor influenced me to have a negative view on ME, even when I had it).
I think a lot of CFS patients hate the CFS label, and some even hate themselves (because of the views in society and from medics). Personally when I was still walking around and doing part time college it didn't matter, but when in hospital or in an ambulance then the label CFS becomes very dangerous.
Doctors think we're making symptoms up and won't refer us to have tests as this only encourages attention seekers, like CFS patients are....apparently. This is what they think in general anyway.
Personally, I feel it's less psychologically damaging to not tell people if you have CFS or ME and a lot of us live in the closet to avoid abuse or hostile reactions, even from friends and family. I've told one person outside my family and it took me two decades. I never accept the label in front of doctors though. They call it 'Chronic Fatigue' half the time and smile when you tell them it's actually an immune disorder that affects the brain.
You're so right in what you say, that CFS (by logic) can never describe a serious disease and people shouldn't use the word. The problem is until the name change is official, medics just correct us so we're rather forced into a corner and have to use it.
It actually make sense people dismiss CFS, because actually it is a silly name and plenty of people meet criteria for it, who don't have a chronic disabilty at all, (especially if doctors think chronic fatigue is also chronic fatigue syndrome). Who ever thought of the label CFS in America needs to apologise publically to people with neuro immune disease and ME for what happened by that terrible decision.
CFS was ME (a neurological disease, circa 1969), it was the CDC's decision to end that. How ironic all these years later XMRV is found.
I too only believed in ME when I ended up disabled by it and the rest is history. I was in denial for years and actually got a lot worse because to give in to my symptoms, (before they made me bed ridden) well by doing that I saw myself as weak and useless person. Back then I was only medium affected and could get out of the house and drive a car a short distance. So I did mini relapses frequently to prove to myself on occasion I could do things. Sort of like episodic masochism, ending up on the floor after playing squash or tennis and not being able to walk and be helped back to the car. People thought I was crazy doing that to myself. As ME progresses then one has no choice to give in to symptoms (e.g back off in a symptom flare), one is simply disabled full time, with no remission.
I thought like this as I was never told what ME was, and the doctor told me outright it was a psychiatric problem found in school phobics and the depressed. So I couldn't become that person, and had to join a gym and get fit and go back to college full time, which of course failed. (So my doctor influenced me to have a negative view on ME, even when I had it).
I think a lot of CFS patients hate the CFS label, and some even hate themselves (because of the views in society and from medics). Personally when I was still walking around and doing part time college it didn't matter, but when in hospital or in an ambulance then the label CFS becomes very dangerous.
Doctors think we're making symptoms up and won't refer us to have tests as this only encourages attention seekers, like CFS patients are....apparently. This is what they think in general anyway.Personally, I feel it's less psychologically damaging to not tell people if you have CFS or ME and a lot of us live in the closet to avoid abuse or hostile reactions, even from friends and family. I've told one person outside my family and it took me two decades. I never accept the label in front of doctors though. They call it 'Chronic Fatigue' half the time and smile when you tell them it's actually an immune disorder that affects the brain.
You're so right in what you say, that CFS (by logic) can never describe a serious disease and people shouldn't use the word. The problem is until the name change is official, medics just correct us so we're rather forced into a corner and have to use it.
It actually make sense people dismiss CFS, because actually it is a silly name and plenty of people meet criteria for it, who don't have a chronic disabilty at all, (especially if doctors think chronic fatigue is also chronic fatigue syndrome). Who ever thought of the label CFS in America needs to apologise publically to people with neuro immune disease and ME for what happened by that terrible decision.
CFS was ME (a neurological disease, circa 1969), it was the CDC's decision to end that. How ironic all these years later XMRV is found.
