“Bugger All”: A Frightening Lack Of Research And Support

Remy

Administrator
Not news for our Australian friends, I fear...

http://junkee.com/the-invisible-suffering-of-australians-living-with-chronic-fatigue-syndrome/73998


Put bluntly, Australians with ME/CFS are in crisis. Estimates of how many of us there are range from 92,000 to 242,000, and the absence of a more accurate figure reflects the general state of apathy regarding ME/CFS by our health authorities.
Advocacy groups such as Emerge and state based ME/CFS societies run on the smell of an oily rag. They provide excellent information and advice, but are rendered almost useless to patient groups in terms of practical assistance.

Greens Senator Scott Ludlam recently raised the question of how much Commonwealth funding goes into ME/CFS research with the Community Affairs Legislation Committee. The initial (very low) figure of $2.4 million over 14 years was quickly revised down to $1.6 million when challenged, but even this figure is debatable according to the breakdown of the funded studies on the Emerge website.
Senator Ludlam also noted the lack of any formal training for medical professionals, nurses or allied health services to appropriately support people with ME/CFS. In practice, this results in patients having difficulty getting diagnosed, and discrimination by out-of-depth doctors acting as gatekeepers to desperately needed services. There is a lack of support in claiming the DSP (Disability Support Pension) and arranging in-home GP appointments for house and bed-bound patients. Mention you have ME/CFS to hospital staff and the issue is likely to be sidestepped or dismissed. As most people with ME/CFS have adverse reactions to medications and extended recovery times after surgical procedures, this can have deterimental effects on care.
 

Remy

Administrator
And we admire socialized medicine because?
Because it doesn't bankrupt you to get the same level of non-care. And it does provide benefits to others with more treatable conditions that are unable to access services due to lack of insurance. No one needs a billion dollar health insurance industry that has nothing to do with actual, you know, health.
 

IrisRV

Well-Known Member
So you can wait months for non-emergency care. And it's cheap?
Like I don't wait months for non-emergency care? ;)

Convenient Care gets us in for acute infections, but a regular GP or specialist appoint can easily be 2-6 months out where I am.
 

Empty

Well-Known Member
Senator Ludlam raised two avenues for change with the Community Affairs Legislation Committee: “What would it take to get a clinical advisory group for ME/CFS?” and: “Could the Commonwealth Government find it in its heart … to support Emerge Australia?” With that, he identified the two areas where support is most needed: improved medical care and patient advocacy
It Is a very good article. Thanks @Remy
 

Who Me?

Well-Known Member
My PCP is one guy in a tiny office with duck wall paper. If I need to get in she will squeeze me in.

I was thinking (you were supposed to read my mind) about surgeries etc that can take months to get schedules, so I hear.
 

Who Me?

Well-Known Member
I can't remember the numbers so don't come after me about it but I do remember hearing that a huge number of people who end up homeless in the U.S. are because they had medical emergencies that they could not pay for.
 

Strike me lucky

Well-Known Member
I got testing through a research university ie nk function testing a few years back. Last year saw an immunologist, i spent most of my time explaining to him what an nk function test was. Then he pointed at testing he did and i shook my head no, that tells you how many nk cells which were fine. My test showz they are functioning very low. I stiĺl dont think he got it. I gave up and thought he cant be a great specialist if i know more than him??
 

IrisRV

Well-Known Member
I loved this bit:
Advocacy groups such as Emerge and state based ME/CFS societies run on the smell of an oily rag.
Some clever creative person (that's not me :oops:) could make an interesting graphic or media campaign out of that. All of our programs are running on fumes -- advocacy, research.
 

madie

Well-Known Member
I got testing through a research university ie nk function testing a few years back. Last year saw an immunologist, i spent most of my time explaining to him what an nk function test was. Then he pointed at testing he did and i shook my head no, that tells you how many nk cells which were fine. My test showz they are functioning very low. I stiĺl dont think he got it. I gave up and thought he cant be a great specialist if i know more than him??
It's like your factory has plenty of workers, but they're all just hanging out.
 

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