Australia - Mason Foundation to investigate viability of ME/CFS Biobank - update - funding awarded for biobank

Action CIND · Aug 17, 2019

Snowdrop said: ↑

Would like to see Canada involved. Maybe through Women's College Hospital's environmental illness unit in Toronto. Maybe through UBC at the complex chronic disease program. Though I think both those institutions still have some learning to do re: ME.

@Action CIND
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The Toronto doctors are quite knowledgeable. BC now has Dr Nacul which should improve the situation there. We recently met with our federal Minister of Health asking for more funds for research so we can only hope she comes through.

Sly Saint · Oct 2, 2019

Another article on this:
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.”
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full article here
https://science.anu.edu.au/news-events/news/helping-doctors-diagnose-invisible-illness

MyalgicE · Oct 21, 2019

Sunshine3 said: ↑

What worries me is anyone can use the app, so people misdiagnosed could well use it. Are we just going to end up with nothing meaningful from information gathered?
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I asked Prof Fisher about this and he said people can self-diagnose then they will be looking for those who meet CCC:

https://meaustralia.net/2019/10/20/australian-biobank-due-to-open-next-year/

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Australia - Mason Foundation to investigate viability of ME/CFS Biobank - update - funding awarded for biobank

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Australia - Mason Foundation to investigate viability of ME/CFS Biobank - update - funding awarded for biobank

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MyalgicE Senior Member (Voting Rights)

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