ANZMES: "..worse scores than those with other neurological conditions..."

Firestormm

Firestormm

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Stigma of chronic fatigue illness adds to suffering - survey

Friday, 9 May, 2014 - 14:53

A new survey shows people with debilitating Chronic Fatigue Syndrome, or ME (Myalgic Encephalopathy) feel misunderstood and stigmatised, and more public education about the condition is needed.

Dr Don Baken, a clinical psychologist at the School of Psychology at Massey University’s Manawatü campus who has researched the issue, says the impact on sufferers of Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) can be devastating, and feeling stigmatised just adds to this.

He carried out a survey of 221 people with ME at the request of the Associated New Zealand ME Society (ANZMES) to better understand the impact of the condition, which affects around 20,000 New Zealanders.

The survey findings are being released to coincide with ME International Awareness Day on May 12...

"People with ME/CFS often feel that it's impact is poorly understood and trivialised," Dr Baken says.

Survey respondents reported a very low quality of life, he says. "The average respondent was in the bottom 10 per cent of the population for measures such as the NIH PROMIS physical health scale [a measure of physical quality of life developed by the National Institute of Health in the US]."

More than three quarters of respondents reported struggling with basic everday tasks and meeting family responsibilities. "They also rated their executive functioning to be extremely low, for abilities such as planning, organising, strategising, paying attention to and remembering details, and managing time and space," says Dr Baken.

Two thirds of respondents had trouble counting the correct amount of money to make purchases, and 85 per cent had problems reading and following directions, such as those of a new medication.

Many respondents felt stigmatised by the condition. Half indicated that they often felt embarrassed by their physical limitations and about a third felt embarrassed about the disease itself. Only about 15 per cent said that they never felt blamed for their condition by others, he says.

Dr Baken says those most ill would not have been well enough to complete the survey and the results would have been even worse if the most severely affected were included.

"What’s particularly interesting about all these findings is that this group reported worse scores than those with other neurological conditions such as Parkinson’s and Multiple Sclerosis," he says.

"Because of the nature of the condition and the stigma that many feel because of it, it’s difficult for this group to advocate for themselves," he says. "More needs to be done to understand the impact of this condition and how society can support the people who suffer from it."

Read more: http://www.voxy.co.nz/health/stigma-chronic-fatigue-illness-adds-suffering-survey/5/189853
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taniaaust1

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Thanks Firestormm for that find. I think I'll send this to the one who's assessing my situation at the Equal Opportunity Commission so he can hopefully understand what Im experiencing a bit better. I cant even advocate properly to my own professional advocate who I know isnt understanding this illness.

This article and the fact that its ME International Awareness Day on May 12 could be used to try to get reporters to do articles on ME/CFS. I suggest for people try to draw to attention of as many reporters as possible to this article (your newspapers and current affair shows). Maybe some of them would do something on ME International awareness day and this.
 
alex3619

alex3619

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The people who need to be convinced are the experts, the authorities, the policy-makers. They have prestige, power, a reputation. They stuffed up, badly. Its human nature to be blind to your own failings.

We have had a test for ME, or at least primary disabling pathophysiology in ME, for at least 65 years. It was only 7 years ago that we started to realize this.

This disease violates common conceptions people have about disease. That includes even doctors. ME is different.

There is going to be huge resistance to change. At first it will be like trying to divert an iceberg by blowing on it. Then it will be like, finally, we have a tugboat pulling the iceberg on a new course via cable. Then the iceberg will melt. Then people will ask why we didn't see the obvious. Then history will be rewritten, as it often is. Though this time it might be different, as historians will have the internet.

We need to support our researchers. That's the first thing. I do not include psychogenic medicine in this, but do not exclude other psychiatric and psychological researchers. By support I mean by participation, by promoting, by funding and by advocating for research priority, including funding. However I also mean politically.

In an ideal world a million patients should have signed the letter from our experts supporting the CCC as an interim diagnostic criteria.

We need to challenge false and dangerous abuse of authority, whether by bureaucrats or doctors, in these matters.

We need to promote the latest and best science in the media, on social platforms, and to government.

We need to be better organized.

There are huge differences in some of our goals, but some basic things I think are universally agreed on, and those should be our priorities: more and better research; a moratorium on government funding on psychogenic medical studies; better medical support for patients, and training for doctors; better social support for the most financially and physically challenged patients, and an end to medical abuse of the very sick.

Above all, I think we need to shock the world to change, by

1. deliberately, systematically and carefully making everyone aware of how much they "authorities" and "experts" have stuffed up.
2. disseminating the consequences of this systematic failure ... this largely means to the public, and includes videos and documentaries, but also books and as we saw lately, even song.
3. calling the medical profession to account. Its not a doctor, or a few doctors who have stuffed up, its nearly all of them.

To change something it first has to be seen that something needs to be changed.
 
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