Mailing address: PO Box 28,
South Australia 5007
Office: 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.
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
HAVING endured more than 20 operations for breast cancer and gynaecological issues, Tisha Bratt was ready to put her health problems behind her.
But she didn't know she was about to be struck down by little-understood health problem that would see the high-flying financial director unable to do basic sums or even write her own name, leave her bed bound for months at a time and still be affecting her 22 years later.
Despite her health problems, Tisha was as active and fit as she could be.
She first noticed her strange new symptoms following an activity holiday, when she suddenly developed a ‘horrendous’ pain in her finger.
“It was like someone was pushing a hot metal spike into my finger – it was really odd,” says the 60-year-old who lives in Chandler'sFord with her husband, Simon.
“The next day it was gone but then a week later I felt the same pain in my toe. Then, when I was driving, I went to change gear and it felt like my left arm was going to break. I thought it was because I’d hurt it playing squash, but then it occurred to me that I’m right handed, so it didn’t make sense.
“Then I developed flu-like symptoms. I’d be off work for a few days, feel better and go back and then be ill again.
“I was so exhausted, I kept having to have time off. I would be in bed and be so exhausted that I couldn’t even turn over.”
Eventually Tisha’s GP sent her to a specialist who diagnosed ME.
FM is a chronic pain condition, characterized by numerous associated symptoms that include widespread pain, fatigue, sleep disturbances and dyscognition. Some symptoms may be shared with other conditions also in the FM patient.
As with many forms of chronic pain, multiple treatment approaches can be considered. Clinicians often match the appropriate treatment strategy with the needs of the individual patient.
Historically, the management of FM had largely fallen under the purview of rheumatologists. Most recently, patients have been reaching out for treatment from a wider range of health experts that include primary care physicians, psychiatrists, and neurologists.
Does your skin burn like it has a sunburn on it? Does contact with your clothes aggravate you beyond belief? Does even the lightest touch make you want to jump out of your skin? That sounds like Allodynia.
Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that does not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation. Clothes will hurt against the skin. Even the slightest of breezes will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.
The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, post herpetic neuralgia and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.
Since I’ve been reporting on fibromyalgia, I’ve had the opportunity to interview some awesome researchers. Even though it feels like a cure for fibromyalgia is far away, there are some incredibly committed, talented researchers out there who are working so hard to help us. I think some of them want the answers just as much as we do, and their perseverance and dedication is paying off.
Nearly every month there’s another study hinting at the mechanisms causing fibromyalgia symptoms, or there’s more progress being made in developing new treatments. Reading about these breakthroughs is always exciting because it means fibromyalgia is gaining legitimacy, and we are slowly – albeit very, very slowly – moving toward a potential cure.
But for every one of those exciting headlines, there are others that just make me shake my head in frustration. Here are a few recent examples:
“Fibromyalgia symptoms can include breast pain”
“Female fibromyalgia patients experience sexual dysfunction and mood, anxiety disorders, according to study”
“Fibromyalgia sufferers have difficulty maintaining continuous sleep, study says”
“Fibromyalgia disability status linked to severe symptoms, higher medication use and physically demanding jobs”
“[Fibromyalgia is] worse than chronic pain alone, but exercise helps”
#MillionsMissing - Video by Jularah in support of the #MillionsMissing M.E & C.F.S campaign. Song 'One Voice' by Jularah. It took me months to record due to ill health and I had to get a guitarist to play for me due to pain and fatigue.
Norwich Christian set for long term Tanzanian mission
New Costessey Christian Joy McCann will head out to Tanzania on Sunday as a long term missionary, after visiting Africa for the first time in April, when she realised a vision God had given her during her 13 years of ill health with Chronic Fatigue Syndrome.
Joy’s journey to Africa began in 2002 when she was diagnosed with Chronic Fatigue Syndrome/ME. It was during this time that she had visions from God of a place in Africa where she was to go to when she was better.
Last year after suffering with the illness for 13 years Joy was healed, through a lot of prayer at her church, Gateway Vineyard, in Norwich.
Here Joy describes her experience of visiting rural Mwanza in April and how it has led to her exciting decision to become a full time missionary with the organisation Tanzania Bridge of Hope.
Leigh-Ann Horn was a podiatrist in Benoni for 18 years, but she sold her practice after the onset of Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), also known as ME/CFS.
She has lived with the disease for the past 15 years, being forced to stay at home on most days, due to a lack of energy.
Sufferers feel exhausted most of the time and often can’t function for more than three hours at a time, without sleep.
Additionally, people with the disease can’t perform physically straining activities, crashing quickly after doing something mundane, such as running a few metres too far or walking in a swimming pool for a few minutes too long.
Sleep often doesn’t help and stress makes the disease worse.
The Morehill resident worked with the early symptoms of the disease for several years, but eventually couldn’t anymore.
"We can make a model for that (mitochondrial problems) and explain almost everything about what we see in this disease."
– Ron Davis
What an exciting presentation took place at the San Francisco #MissingMillions protest site on May 25th. Not only did Ron Davis of the Open Medicine Foundation say that he thinks (very early in the OMF's End ME/CFS project, by the way) that not only do they believe that they're really onto something, but that they're already pursuing compounds that might help and talking with drug companies.
Obviously, it's early days yet, but the OMF clearly believes they may have opened an important new beachhead in this disorder – one that could explain much.
First some ME/CFS and OMF news....
The Consortium Approach Wins Out
Ron must have been smiling when NINDS ME/CFS project director Vicky Whittemore outlined the broad strokes of the Working Group's strategy to reinvent ME/CFS research. About a year ago on one of her frequent trips to Washington, Linda Tannenbaum, the Executive Director of the Open Medicine Foundation, plopped Ron Davis's plan to end ME/CFS down on Vicky Whittemore's desk.
Whittemore's eyes widened: here was a comprehensive plan featuring some of the top researchers in the country. I wouldn't be surprised if the mere presence of this plan featuring these figures helped convince Whittemore ithat she could successfully push the NIH hard to take ME/CFS seriously.
The plan proposed that a consortium of researchers from across the country participate in a methodical effort to understand and cure ME/CFS. Yesterday, Vicky Whittemore proposed that the NIH fund a consortium of research/treatment sites that would work in unison to solve ME/CFS.
You are invited to participate in the research project described below.
What is the project about?
The project aims to explore how ways of coping with pain and other symptoms of fibromyalgia are related to functioning in people with fibromyalgia. It is hoped that results may assist psychologists in targeting treatment for improved functioning, however no causal links will be able to be identified in this study.
Who is undertaking the project?
This project is being conducted by Heather Trainor. This research is part of the degree of Master of Psychology (Health) at The University of Adelaide, under the supervision of Professor Helen Winefield, Miriam Henke, and Dr John Baranoff.
Who is invited to participate?
Participation in this study is open to people who:
Have received a diagnosis of Fibromyalgia from a medical practitioner
Are Australian residents
Are over the age of 18
Are proficient in English (no translation services available)
Activists remained completely silent, some wearing gags over their mouths, as they protested alongside the pairs of shoes from midday to 2pm.
The tagline and the empty footwear referenced the fact that millions of people are missing from their careers, schools, social lives and families across the globe due to the debilitating symptoms of the disease, the organisers said.
South Australian Health and Medical Research Institute (SAHMRI)
Research participants wanted
Chronic fatigue syndrome: Leptin, interleukin 6 and clinical symptoms.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome (CFS) is characterised by a constellation of symptoms in previously healthy and active individuals.
Because of these symptoms, quality of life of people with CFS can be extremely compromised. While the search for a clear-cut cause remains elusive, we believe that we can make a major contribution to a person’s quality of life by elucidating the biological basis of their clinical symptoms.
If the biology underlying the disabling symptoms of CFS is elucidated, we will be able to target treatments aimed at symptomatic improvement.
What is the purpose of this study?
To evaluate the relationship of the hormones (cytokines) Leptin and Interleukin-6 on the symptoms of Chronic Fatigue Syndrome. We can test these by using a blood sample. We are also embarking on the development of a genetic database for CFS.
It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t. Decades later, I’m still living with bone-penetrating exhaustion and brain fog as thick as pea soup. I spent much of my 30s and 40s tethered to my bed, too weak to function. I’ve had to abandon both my career in international relations and my social life.
It’s a disease that can force you to put your life on hold. According to the Institute of Medicine, it can reduce an individual’s ability to function more than heart failure, multiple sclerosis, or end-stage kidney disease. There’s no generally accepted diagnosis for ME. It can take up to five years to be accurately diagnosed, and up to 90 percent of people with it are never accurately diagnosed. Worse still, the FDA hasn’t given the green light to any treatments for it.
Those of us with ME have long hoped the government would come to our aid. Instead, in 1988 it gave the disease a new name, chronic fatigue syndrome, that stigmatizes people with this condition. And the National Institutes of Health has generally looked the other way. Year after year, the NIH has set aside a paltry $5 million to $7 million of its $30 billion annual budget for ME research. Compare that with the $100 million set aside for research on multiple sclerosis, which affects about 400,000 Americans.
Chronic Fatigue Syndrome, or CFS, is an innocuous name given to a debilitating disease. Its seriousness is better indicated by the term Myalgic Encephalomyelitis (ME), a label preferred by many of its victims. On May 17-18, the Department of Health and Human Services hosted the biannual public meeting of the Chronic Fatigue Syndrome Advisory Committee by webinar. This was a fitting time for such a meeting, as May is International ME/CFS Awareness Month.
The trigger for CFS/ME is not known. The lack of research on the disease means there is no truly effective and widely available therapy that would allow the more seriously ill victims to lead meaningful lives free of pain and incapacitating fatigue.
The disease often appears to strike at random. It’s impossible for any of us to know how to protect ourselves from the illness.
PLOS editors discussing authors’ decision to remove chronic fatigue syndrome data
By Alison McCook
May 20th, 2016
After PLOS ONE allowed authors to remove a dataset from a paper on chronic fatigue syndrome, the editors are now “discussing the matter” with the researchers, given the journal’s requirements about data availability.
As Leonid Schneider reported earlier today, the 2015 paper was corrected May 18 to remove an entire dataset; the authors note that they were not allowed to publish anonymized patient data, but can release it to researchers upon request. The journal, however, requires that authors make their data fully available.
Nobody likes to have to cancel plans, but for many people who live with chronic illnesses, it’s a regular part of life. Having an unpredictable condition means you can’t always make it out of the house, even when you want to. Some friends get it and will always be happy to reschedule, but unfortunately not everyone understands.
We askedour readers to tell us some texts they’d love to get, instead of silence or frustrated replies, when they have to cancel plans due to illness. If you’re ever unsure how to respond to your friend’s last-minute cancellation, we hope one of these sparks an idea.