ME/CFS AUSTRALIA (SA) INC
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PO Box 28,
South Australia 5007
Closed while relocating
1300 128 339
ME/CFS Australia (SA) 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.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Survey gives patients with "invisible" illnesses a chance to speak out about how they are treated
Thursday 7 October 2010
Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out About How They Are Treated
Patients who suffer with chronic fatigue, fibromyalgia, pelvic pain, TMJ, migraines, chemical sensitivities, and more can speak out in an anonymous survey about how the medical community treats them.
PRLog (Press Release) – Oct 02, 2010 – Patients with "invisible" illnesses, such as chronic fatigue, fibromyalgia, vulvodynia, interstitial cystitis, migraine, irritable bowel syndrome, chronic pelvic pain, and a host of other pain and inflammatory disorders have tremendous difficulty finding the help and treatment they need; even finding a diagnosis is a challenge. Doctors often dismiss their symptoms as being imaginary, which further demoralizes an already suffering patient.
Now, as part of the research for a new book on how the medical community treats patients with "invisible" illnesses, patients can express their feelings and speak out through an anonymous patient survey. All respondents will receive a downloadable pain trigger journal.
According to Susan Bilheimer, author and survey creator, "It's time that the medical community recognized that patients with illnesses that are chronic and not easily diagnosed are not problem patients, but patients with a problem. Just because you can't see pain and inflammation doesn't mean they aren't real. There are certainly exceptional doctors who understand chronic illness. But for those who don't, I'm hoping to send a wake-up call that it's no longer acceptable to dismiss and mistreat suffering patients."
So far, over 1,100 responses have been received. A number of organizations, such as the National Vulvodynia Association (www.nva.org) and the Interstitial Cystitis Association (www.ichelp.org), have encouraged their members to take part.
To take the survey, go to http://www.surveymonkey.com/s/TDWVHDW.
This survey is associated with the Invisible Illness Advocate (www.InvisibleIllnessAdvocate.com) and Secret Suffering (www.SecretSuffering.com) websites (Susan Bilheimer, founder, and Robert J. Echenberg, MD, medical advisor).
About Susan Bilheimer: Susan Bilheimer is a writer, radio host, and speaker on women's health issues. She is the co-author of "Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships" with Robert J. Echenberg, MD. Her own journey with perimenopause, pelvic pain, and invisible illnesses led to development of websites and books to educate and empower patients. For more information, go to www.SecretSuffering.com or www.InvisibleIllnessAdvocate.com.
The above originally appeared here.
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