Marc Simon
ME/CFS Information

Introduction

I am currently doing battle with a beast called ME/CFS (another link) Because of this I can no longer do a lot of the things I used to do (including hiking). Hopefully this page will serve to educate the public and provide other ME/CFS patients the benefits of what I have learned.

ME/CFS: Why talk about it?

Imagine transitioning from a healthy, productive and active person to a disabled and sick one within the time frame of a few weeks. Then going from doctor to doctor in search of a diagnosis while you are sick and in pain only to encounter ignorance. Imagine dealing with insurance companies, government agencies and medical bureaucracies trying to get disability matters straightened out all while you are extremely ill - an effort that would tax the patience of a healthy person.

This is the experience that people suffering from ME/CFS go through. Because the medical establishment is slow to recognize ME/CFS, many patients are denied supportive medical care and proper medical validation of their disability. Workers who contributed to the social security system are sometimes denied disability payments because they find it hard to get a diagnosis and/or find a doctor that will advocate for them to receive disability payments. Unlike others suffering from chronic disease, ME/CFS patients still lack a socially respected name for their condition and as such they are treated shabbily on the whole by the media, the medical profession and the government.

Unfortunately this response by the institutions of our society is not without precedent - Multiple Sclerosis sufferers were also treated this way in the early 20th century. Hopefully by talking more about conditions like ME/CFS we can generate the grass roots political pressure necessary to get our institutions to take these problems seriously.

Some of my thoughts on various ME/CFS subjects

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