Activate Now
ProHealth health Vitamin and Natural Supplement Store and Health
Home  |  Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help
Facebook Google Plus
Fibromyalgia  Chronic Fatigue Syndrome & M.E.  Lyme Disease  Natural Wellness  Supplement News  Forums  Our Story
Store     Brands   |   A-Z Index   |   Best Sellers   |   New Products   |   Deals & Specials   |   Under $10   |   SmartSavings Club

Trending News

Brain White Matter Abnormalities in Female Interstitial Cystitis/Bladder Pain Syndrome: A MAPP Netwo...

How One LLND Treats Lyme disease and Co-infections Using Natural Medicine

Top 7 Nutrient-Dense Foods That Make Calorie Counting Obsolete

Acupuncture reduces hot flashes in breast cancer survivors

For veterans with Gulf War Illness, an explanation for the unexplainable symptoms

SURVEY: Has Your Illness Affected What You Eat?

DePaul Study Recruiting Participants

VIDEO: Dr. Horowitz Discusses Lyme Disease and Chronic Illness

Cocoa flavanols lower blood pressure and increase blood vessel function in healthy people

Detection of Invasive Borrelia burgdorferi Strains in North-Eastern Piedmont, Italy.

Print Page
Email Article

Stigma of chronic fatigue illness adds to suffering - survey

  [ 23 votes ]   [ Discuss This Article ] • May 16, 2014

Stigma of chronic fatigue illness adds to suffering - survey
Press Release: Voxy, Friday, 9 May, 2014

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.

ME/CFS, also known as Royal Free Disease, Chronic Fatigue Immune Disorder, Tapanui flu and Yuppie flu, is understood to result from changes to the immune system in response to an initial infection. Sufferers can be bed-ridden for weeks or months with typical flu-like symptoms such as fever, sore throat, swollen glands, muscle and joint pains. They also suffer mental sluggishness, sleep disturbance and extreme fatigue. Symptoms come and go over a period of time, and even between relapses the person may still feel very tired and unwell.

"People with ME/CFS often feel that its 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 everyday 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."
Maintaining friendships with ME sufferers, even though they may feel too unwell to go out, was one way people can show their acceptance and give support, he says.

President of ANZMES Heather Wilson says the results of the survey confirm anecdotal evidence about the experiences of people with ME/CFS.
She says the "good news" is that international biological research is making significant discoveries about abnormalities in the neurological, immune and energy-producing systems of people with ME.

"However, until these have been translated into treatments that improve the quality of life of people with ME/CFS it is important that all those involved, including friends and family, the health system, and societal support systems, understand the true impact of this serious, devastating condition and provide the support that they can."

Please Discuss This Article:   Post a Comment 

[ Be the first to comment on this article ]

Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Subscribe Now!
Receive up-to-date ME/CFS, Fibromyalgia & Lyme Disease treatment and research news
 Privacy Guaranteed  |  View Archives

Vitamins and Supplements

Featured Products

Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
FibroSleep™ FibroSleep™
The All-in-One Natural Sleep Aid
Ultra ATP+, Double Strength Ultra ATP+, Double Strength
Get energized with malic acid & magnesium
Vitamin D3 Extreme™ Vitamin D3 Extreme™
50,000 IU Vitamin D3 - Prescription Strength

Natural Remedies

Priming Your Immune System for Cold & Flu Season Priming Your Immune System for Cold & Flu Season
Why Berries Offer a Rainbow of Health Benefits Why Berries Offer a Rainbow of Health Benefits
Herbal Inflammation Management for Whole Body Health Herbal Inflammation Management for Whole Body Health
Repair Damaged Mitochondria and Reduce Fatigue Up to 45% Repair Damaged Mitochondria and Reduce Fatigue Up to 45%
More Weight Loss than Any Other Discovery in Supplement History More Weight Loss than Any Other Discovery in Supplement History

What is Fibromyalgia?
Fibromyalgia Diagnosis
Fibromyalgia Symptoms
Fibromyalgia Causes
Fibromyalgia Treatments
Fibromyalgia Diet
Fibromyalgia Medications
M.E. & CFS
What is M.E./CFS?
M.E./CFS Diagnosis
M.E./CFS Symptoms
M.E./CFS Causes
M.E./CFS Treatments
M.E./CFS Diet
M.E./CFS Medications
What is Lyme Disease?
Lyme Disease Diagnosis
Lyme Disease Symptoms
Lyme Disease Causes
Lyme Disease Treatments
Lyme Disease Diet
Lyme Disease Medications
M.E. & CFS
Lyme Disease
General Health
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing