ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Helping Doctors Diagnose An Invisible Illness
Wednesday 2 October 2019
HELPING DOCTORS DIAGNOSE AN INVISIBLE ILLNESS
Researchers hope that a new biobank will help them develop a blood test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
To understand why a diagnostic test is so important, you first need to put yourself in the shoes of someone with an invisible illness.
Imagine, you’re suddenly very unwell and haven’t been able to go to work all week.
You manage to make it to the doctor. You say, you’ve never felt this bad before.
Your doctor notes your high temperature, but thinks it’s just a virus. She recommends taking time off work and runs some blood tests just to be safe. “We’ll give you a call if anything shows up,” she says.
Months pass. You never get that call, but you never get better either.
Every day you are physically deflated by bone crushing fatigue. Not tiredness. Medical fatigue. They are two completely different things, but no one understands this.
“You look so good,” you hear your friends say. Or even worse, “Oh, I completely understand what you mean. With the kids, and work and everything, I get tired too.”
When you go back to the doctor. You list off a range of symptoms, but in the context of a 15 minute medical consultation it is hard to get everything out. She listens and then says the test results look great. “You’re fine,” she says. “You should get some more exercise and eat better.”
But you’re not fine.
If your illness was an iceberg, fatigue would just be the bit that points out above the water.
You might not know it yet, but you are dealing with a severe, complex illness, with symptoms so extreme that they impact almost every system in your body, from the way your brain functions to your gut, and your immune, endocrine and cardiac systems.
You are living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), as described by thousands of patient advocates across the world.
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