Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. Read more, Emerge AustraliaRoss House247 - 251 Flinders LaneMelbourne VIC 30001800 865 321. After completing her doctorate she continued to be involved in research, studying treatments for insomnia in Australian military veterans. Dr Stevens completed a doctorate in clinical psychology, with her doctoral research investigating sleep problems in patients with chronic fatigue syndrome/myalgic encephalomyelitis. Dr Cathie Stevens is a clinical psychologist who utilises a range of psychological therapies to treat patients with a wide range of sleep problems. Online support groups, and advocacy groups like The Solve ME/CFS Initiative, and the ME Action Network, may also be able to help. Read more. Emerge Australia has a telehealth nurse available. They basically rule out every other possible illness, while observing the symptoms that the patient is reporting in order to conclude that ME/CFS is the underlying disorder. I got more lab testing that helped to confirm the diagnosis. She works in private practice in Footscray and Niddrie. It requires surrounding yourself with people who love you and who will aid in your recovery, who will deliver groceries to you, or who will spend time with you at home when you’re too sick to go out. She has a special interest in treating patients with co-existing mental health issues and complex needs. ", "In practice, this means that someone with the symptoms of ME/CFS can spend years going from doctor to doctor unable to find a diagnosis because the doctor does not know to even look for this disease. Casey Stoner AM, two time MotoGP World Champion joins Emerge Australia as their new Ambassador, helping raise funds and awareness for ME/CFS, and the newly established Open Medicine Foundation Australia research centre. Welcome to the 53rd edition of the Research Digest. Donations of $2 or more are tax-deductible. s registered as a charity with the Australian Charities and Not-for-profits Commission (ACNC). Since ME/CFS can’t be detected via blood tests (yet), doctors diagnose it via a process of exclusion. The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society also offers a CFS/ME Physician and Clinic database. “Improvement requires lengthy, profound periods of rest. This is helpful for the doctor and will make them take your case seriously. The new Australian ME/CFS Centre for Collaborative Research is expected to officially open early in 2021 Read more, This year, Emerge Australia's Annual General Meeting (AGM) will be held virtually, due to the ongoing restrictions concerning physical distancing measures due to the COVID-19 pandemic. This process can take years,” Ryan Prior, a CNN journalist, member of the board of directors for the ME Action Network, and co-director/producer of Forgotten Plague tells Bustle via email. This fortnight's edition features a ME/CFS focused edition of the journal WORK: A Journal of … Demand to be treated with dignity and respect, and don’t let them give you short shrift.” Having an ally go with you to appointments, like a family member, partner, or a close friend, is also important Prior says. All rights reserved. Research Digest 07/08/20. Without an explanation for the symptoms, doctors often diagnose patients as depressed, which not only does not treat the patient's disease; it stigmatizes and contributes to the disbelief of people with ME/CFS.”, In order to optimize your chances at managing this disorder, it’s important to “Hold your doctors accountable,” Prior says. Prior also recommends that you “push back on anything they say that you find demeaning, lackluster, or inadequate. Read more. Emerge Australia provides an information line where you can find out about the latest news and information about ME/CFS. If you have CFS/ME you are likely to feel very tired, very often, even if you have not been active. Slowly, I moved from the very severe, to severe, to moderate on the spectrum. After completing her doctorate she continued to be involved in research, studying treatments for insomnia in Australian military veterans. Online support groups, and … "People with ME/CFS often may not 'look sick,' and, as such, it’s often referred to as an invisible illness — especially for patients who have more daily functioning ability," Adriane Tillman of the MEAction Network tells Bustle via email. Dr Stevens’s clinical interests include: Dr Stevens completed a doctorate in clinical psychology, with her doctoral research investigating sleep problems in patients with chronic fatigue syndrome/myalgic encephalomyelitis. Given that ME/CFS is still so often misunderstood in the medical field, arming yourself with both knowledge and support is key. “The most successful patients will need to radically re-orient their worldview, quickly accepting the fact that their world has been fundamentally changed,” notes Prior. We are authorised by the Australian Tax Office as a deductible gift recipient (DGR). I saw specialists. “Do your research ahead of time. Finding a doctor who can treat CFS/ME effectively can be a frustrating feat for patients, since many physicians don’t fully understand the condition, but it can be done. She is particularly interested in teaching others how to improve sleep using cognitive and behavioural strategies. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. But it’s also helpful for you in finding your tricks to beat back the disease.”. It requires incredible amounts of patience, and an abiding faith, that despite sometimes temporary setbacks, that a longer-term improvement can be possible.”. Dr Stevens has a strong interest in educating the public and other health professionals about sleep. I was a responder. Despite the challenges that people with ME/CFS face, help is available. “The main barrier to medical care is that doctors are not knowledgeable about ME/CFS,” says Tillman. By making the most of online resources, seeking out help from allies and loved ones, and doing your best to find a doctor who can support you, some degree of recovery can happen — and some patients recover entirely. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society also offers a CFS/ME Physician and Clinic database. of people with ME/CFS are housebound/bedbound, of recognition as a neurological disorder by the World Health Organization. medical bias and misleading information about ME/CFS. Add in a chronic illness that doctors may not be familiar with, and it can feel nearly impossible. Finding a doctor who understands this complex condition is central to ME/CFS recovery and management, and many patients can improve over time. “While the number of doctors I saw is painfully normal for many who will ultimately get this diagnosis, I had parents, including a mother who is a nurse, able to help me jump through the hoops in the medical system compared with others.