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.
Although by no means perfectly dependable, the NHS Choices Behind the Headlines is generally a useful resource for lay and professional consumers bombarded by distorted coverage of science and health information in the media.
Is intended for both the public and health professionals, and endeavours to:
• explain the facts behind the headlines and give a better understanding of the science that makes the news,
• provide an authoritative resource for GPs that they can rely on when talking to patients, and
become a trusted resource for journalists and others involved in the dissemination of health news.
FDA Says Some Lyme Tests are Dangerous - Will Start Regulating Them - Major Changes Expected
Posted on November 27, 2015
Last November the FDA stated it was going to start regulating what it calls "Laboratory Developed Tests". These are tests that are developed by and for single laboratories (often genomic firms) but have not been subjected to regulatory approval. At the time the FDA's regulation was created these tests were rare but with the development of genomic testing thousands have been developed. Many labs do subject their tests to stringent internal and/or independent testing but not all do.
The FDA, however, believes some of these tests are doing more harm than good.
In some cases, due to false-positive tests, patients were told they have conditions they do not really have, causing unnecessary distress and resulting in unneeded treatment. In other cases, the LDTs were prone to false-negative results, in which patients’ life-threatening diseases went undetected. As a result, patients failed to receive effective treatments.
Medical Marijuana Great for Migraine, Fibromyalgia and Irritable Bowel Syndrome, Survey Finds
Posted on November 27, 2015
One-hundred percent (100%) of people with migraine headache, fibromyalgia or irritable bowel syndrome who use medical marijuana for a minimum of 30 days report a reduction in pain and discomfort, a survey of 621 by the Care By Design found.
People included in the survey suffer from a range of different conditions, and some suffer from multiple conditions, including:
“A majority of patients (88.2%) reported that cannabis therapy improved their overall sense of wellbeing,” the study found. “Patients with fibromyalgia, headaches and migraines, PTSD and anxiety reported the greatest improvement in general wellbeing (as compared to other patient groups).”
I have lived with the illness myalgic encephalomyelitis (ME) for nearly 35 years. The condition is also (misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”. For more information see “About”.
Ever since the results of this £5 million (US$8m) publicly-funded trial were published by The Lancet in 2011, patients have been attempting to gain access to the trial data as the results were spun in a surprisingly positive light. In 2014, I made a request under the Freedom of Information Act (FOIA) to ascertain the number of requests which had been made in total. The answer wasn’t clear but the figure seemed to be well in excess of 150. However, very little data has been released so far and patient groups are still puzzled by how the results have continued to be framed in such positive terms.
Professor White has also used patients’ efforts to access trial information as a vehicle to make spurious claims of harassment against members of the PACE team and a “campaign to discredit the trial”.
“These are really…immunological disorders” Dr. Carl-Gerhard Gottfries (psychiatrist)
It’s a fascinating story. It involves a psychiatrist who over fifty years ago cured his chronic fatigue syndrome using an immune booster. When he was barred from treating others in the clinic with it he resumed his psychiatric work but never stopped thinking about it. Thirty years later he used the same agent to successfully help many people with ME/CFS in an ME/CFS clinic in small town on the west coast of Sweden.
His names is Dr. Carl-Gerhard Gottfries. He’s the founder of the Gottfries Clinic in Sweden. He became interested in ME/CFS and FM almost fifty years ago after the Asian Flu epidemic of 1957/8 ravaged Sweden leaving some with severe and long lasting post-infectious fatigue. When doctors couldn’t explain what was going on with these patients, they were sent, of course, to his psychiatric clinic.
Gottfrie’s detailed examinations of over a hundred patients, however, uncovered no signs of a psychiatric disorder. He might have left it at that – another medical mystery – but then he caught the flu.
Gottfries was in bed for a week – that was normal – but then like his patients he had trouble recovering. Convinced that some of the infection must remain Gottfries began attempting to boost his immune system. In the late 1950’s he didn’t have many options and so he began a course that many today would find frightening – he began poking himself with vaccines.
It took him three years but eventually Gottfries found that a staphylococcus aureus vaccine (Staphypan Berna (Berna Biotech, Switzerland) containing a mixture of staphylococcus strains and a toxoid worked, and his fatigue went away. When his superiors balked treating patients at their psychiatric clinic with vaccines Gottfries returned to his focus on dementia and other diseases.
Visual stress could be a symptom of chronic fatigue syndrome, research suggests
November 24, 2015
People suffering from chronic fatigue syndrome (CFS) could experience higher levels of visual stress than those without the condition, according to new research from the University of Leicester.
CFS, also known as myalgic encephalomyelitis (ME), is a condition that causes persistent exhaustion that affects everyday life and doesn't go away with sleep or rest. Diagnosis of the condition is difficult as its symptoms are similar to other illnesses.
The results of the study, which is published in the journal Perception, could help in the diagnosis of CFS, as the findings suggest that there are visual system abnormalities in people with ME/CFS that may represent an identifiable and easily measurable behavioural marker of the condition.
The Summerside Art Club has taken over the Eptek Centre with an all-new show, entitled “Nostalgia,” bringing to life memories and interpretations of artists in a dazzling display.
Liana Brittain, a member of the club, suffers from Fibromyalgia, a complex chronic pain disorder that affects her physically, mentally and socially.
She discovered “zentangle” as a therapeutic way to relax and intentionally facilitate a shift in focus and perspective.
“Zentangle was formed when a yoga instructor and artist combined their abilities to create a healing experience,” explained Brittain. “So I adopted this style of artwork in order to help maintain my Fibromyalgia (at a lower level) and how much chronic pain I experience at a time.”
Intricate patterns are drawn by Brittain and then coloured and shaded to create a three-dimensional effect. Her watercolour painting, entitled “Once Upon a Time,” represents a page in a child’s fairy-tale book.
“It’s a good therapeutic experience,” she added. “And it took me around two or three weeks to complete.”
Sleep Improvement for Fibromyalgia Sufferers Possible, Study Shows
Posted on November 23, 2015
A new drug being tested in clinical trials to treat fibromyalgia, called Tonmya, is showing promise for sleep improvement and pain reduction.
Tonmya is being evaluated in the 500-patient Phase 3 AFFIRM study in fibromyalgia. The primary outcome measure for this study is a pain responder analysis, which basically means patients report a minimum of a 30% reduction in pain from their baseline after undergoing treatments for 12 weeks.
The drug is taken at night daily, and researchers are seeing that patients are seeing improvements in sleep.
“Our new analyses of the BESTFIT data show that those patients who reported the greatest improvement in sleep quality were the most likely to experience pain relief,” said Seth Lederman, M.D., Tonix’s chairman and CEO. “We also observed that the group treated with Tonmya was approximately twice as likely as placebo-treated patients to be in the top third of reported sleep quality improvement. Among all patients in BESTFIT who ranked highest in reported sleep quality improvement, twice as many Tonmya-treated patients experienced at least a 30% improvement in their pain as compared to those treated with placebo.”
In a public talk in Edinburgh on Monday [16 November 2015], psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media.
The authors of the UK’s £5 million PACE trial have claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome. Patients have criticised the trial’s methodology since its publication but criticisms have been dismissed by the study authors as reflecting “the apparent campaign to bring the robust findings of the trial into question.”
Professor Coyne’s attention was drawn to PACE by the authors’ latest claims, made in a recent Lancet Psychiatry paper, that long-term follow-up of patients confirmed these benefits. Coyne published a detailed blog post condemning the paper as “uninterpretable” and as having used “voodoo statistics” in a failed attempt to correct for “fatal flaws.”