Wednesday, September 28, 2005

CFS Awareness Day Message 2004 "For The Severeies"

By CFS sufferer Ricky - posted his site, 1 May 2004.

This message was posted to the CFS-Severe mailing list, a mailing list for those with the most severe types of CFS/ME, on the occasion of International CFS Awareness Day. Each awareness day, many people with CFS/ME post to different groups to improve "awareness" of CFS/ME, and I didn't feel I had the energy to do that this year so I posted this message instead.

Dear Severeies,

This CFS Awareness Day I wanted to talk to those who are probably the most "Aware" about CFS of anybody I can think of.


You and you and you and you. And me.

These so severely affected that literally every second of our days and nights is governed by this stupid goddam diseease. We never get even a tiny break, we always have to work out if our bodies can "afford" an activity in advance, even if that activity means taking one swallow of a drink, or turning over in bed.

This disease has betrayed us. Doctors everywhere have betrayed us - although with some notable exceptiions. The governments around the world have betrayed us. Our friends have often betrayed us. For some of us, even our families have betrayed us.

So what do we have left?


Our determination to KEEP ON LIVING at any cost. And sometimes the cost is so high it would be mind-boggling to anybody who didn't have severe CFS and didn't understand.

So we need to keep up the good fight for another year, guys. Keep on hanging in there by any means we can. KEEP ON LIVING in this non-living type of living death.

Just hang on, however you can.

With a round of silent applause for us all,
- - -

You go to the emergency room [with very severe ME/CFS] when things are REALLY REALLY bad, when you are just so desperate, beyond desperate for help and what happens? Not only do you not get any help but you end up even sicker.
-- Jodi Bassett, very severe CFS/ME sufferer
- - -

Wikepedia on Chronic fatigue syndrome

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is an organic disorder of unknown and possibly multiple etiology, affecting the central nervous system (CNS), immune system, and many other functions. CFS is characterized by a number of features, the most common and notable one being severe mental and physical fatigue (physical) fatigue, which is unrelieved by rest, and usually made worse by even modest exertion. It is currently considered by most authorities to be incurable, although some cases resolve or improve over time, and treatments bring a degree of improvement to many others.

[Treatments eh? I wonder which treatments 'bring a degree of improvement to many others' - there are none that I know of]


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