Mailing address:
PO Box 322,
Modbury,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)
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.
Disclaimer
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, 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.
Support
ME/CFS Australia (SA) Inc wishes to thank Eco Pest Control for its support of the Society.
Hannah Gibson has been living with chronic illness for most of her life. So why does she still struggle to get medical professionals to take her condition seriously?
Before I found my current GP, I always had the urge to censor myself went I went to the doctor. To make my story palatable, less daunting. To put the doctor at ease. This was the result of 22 years of learning the culture of biomedicine, gaining an understanding of the kinds of illness or presentation of symptoms many doctors (note, not all) prefer to hear about. I don’t make up symptoms; any time I have come to a doctor’s door I have genuinely needed help. Which makes it all the more painful when a doctor’s eyes glaze over as they mentally clock out, wishing they had a different version of sickness in front of them. I can see when they get excited at the prospect of seeing something unique, and I even see their frustration when they can’t diagnose me easily.
...
Recently there has been a jump in stories of New Zealanders with complex chronic conditions like Ehlers-Dahnos, fibromyalgia, chronic fatigue syndrome/ME and endometriosis who are being treated like their symptoms are fictitious. The word ‘psychosomatic’ is bandied around, a triumphant cry that doctors use when they mistake a complex case as something that is ‘an invention’, ‘attention-seeking’ or ‘laziness’, simply because it doesn’t fit into the neat categories that biomedicine holds so dear. I know doctors want to be able to diagnose problems, but I worry that too often when things are challenging they brush people off.
But calling someone living with chronic fatigue syndrome, fibromyalgia, dysautonomia, and other complex conditions ‘inventive’ or ‘factitious’ doesn’t actually make the problem go away. The pain stays; the fatigue too. And the frustration and feeling of being utterly alone increases, because many of us are brought up to believe in our doctors. I know it’s a big ask – but please, doctors, treat our suffering with more respect.
The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship.
Rachel Jeffrey who blogs at rachelmwriter.com
and has just written her first novel.
From blog to blockbuster for Bridgend woman?
By GEM Staff Reporter - GEM Reporter
Thursday, 17 January 2019
Copyright & Trade Mark Notice & 2013 - 2019.
A young writer and blogger from Bridgend has just published her debut novel.
Rachel Jeffrey, 20, says writing has provided her with a welcome distraction from the medical problems she faces.
She said: “I was diagnosed with cerebral palsy at the age of two. Then in 2011, I suffered an accident when I fell out of the back of a minibus at school.
“It took three years to find out about my slipped disc. It was removed in October 2016 at Morriston Hospital in Swansea.”
Rachel has also been diagnosed with chronic fatigue syndrome and facet syndrome.
Despite her physical difficulties she produces a stream of cheerful blogs at rachelmwriter.com to encourage other people with disabilities. Reading and writing have always been an important part of her life.
PETITION NOTE: On September 18th, a group of concerned writers, activists, artists, filmmakers, physicians, and scientists came together to write an open letter to Netflix to request that Afflicted be immediately removed from the service. Sign this petition to endorse the letter. All signatures will be sent to Netflix. Please note that the below is an excerpt. You are encouraged to read the full text of the letter at: https://medium.com/@afflicted/open-letter-to-netflix-regarding-the-afflicted-docuseries-d2b5263c9eb6
----------
We request that “Afflicted” docuseries be immediately removed from the service. We further request that a formal apology be released that includes a statement of Netflix’s future plans for the programming of documentaries, television, comedy specials, and feature films about disability and projects that include talent, key crew, and/or consultants with disabilities.
We express our profound disappointment with the recently released Netflix docuseries “Afflicted.” We are deeply concerned about its unethical treatment of its subjects and its many factual errors and omissions. Its inclusion on your platform—which reaches three hundred million viewers worldwide—will reinforce barriers to appropriate medical care or disability benefits, dampen the support of vital research, and add to the stigma and social isolation of an already profoundly marginalized group of people.
Photographer Marie LeBlanc suffers from
Multiple Chemical Sensitivity, a little-known
but complex chronic condition affecting about
three per cent of Canadians. Her work is on
display now at or near Habitat for the Arts.
(Supplied photo)
'She was passing through town and shouted at us from across the road'
Exposure to everyday chemicals can make photographer Marie LeBlanc sick.
Even the tiniest amount of perfume, hairspray or pesticide in the air can trigger symptoms like burning eyes, headaches and skin rashes.
But the artist said fresh, clean air eases her daily struggle, and when she breathed Jasper’s “pristine” air was inspired to share her message.
LeBlanc suffers from Multiple Chemical Sensitivity, a little-known but complex chronic condition affecting about three per cent of Canadians.
She said: “Fresh air is good for everyone but for people like us it’s what we are struggling for. We are searching for clean air and the air here, wow.
“It’s less pain, my head is clearer. When you’re in a building overexposed to certain things it affects your pain level and the way you think. In fresh air it’s a little bit better.
“I wanted to go to Jasper because the air is so much better there. When I go outside it’s like wow, the air is so good.”
People with fibromyalgia tend to have mood disorders and mental conditions such as anxiety and depression, which can diminish their quality of life.
They also have elevated levels of cortisol — a strong indicator of stress — and reduced levels of molecules that suppress inflammation and regulate mood.
This is our first major survey capturing the experiences and views of people living with chronic illness. This is an opportunity to stand up (or lie down) and be counted and have your voice heard. Your responses will inform our chronic illness manifesto for change.
This survey is open to anyone with a long-term health condition or impairment that restricts their day to day life.
The survey takes about 20 minutes to complete. You can complete it in stages, coming back to where you left off. Please take breaks when you need to. We appreciate the effort surveys like this can take, and your answers are incredibly valuable. The more responses we get, the stronger our case for change.
Words and art have power. Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are invited, along with any would-be poets and artists among friends and family, to compose a slam poem or artistic piece based on their journey with ME/CFS. "Hearts and Hope United" is an opportunity to share individual experiences with ME/CFS while inspiring others. Submissions should cultivate messages of hope and positivity. Artists may use a “pen name” if they prefer to remain anonymous. Inspiring and creative submissions will be made available at omf.ngoand on social media.
“We are eager to hear your voice and allow the ME/CFS community to join in solidarity for inspiration and to build more awareness about the challenges that everyone is facing,” said Dr. Neal C. Goldberg, executive director of Lev Leytzan. Marilyn Simon-Gersuk, Open Medicine Foundation's director of communications and development, said, “OMF is leading research and delivering hope to end ME/CFS and we welcome the creativity of people affected by ME/CFS and their community to inspire hope through this Poetry and Art Slam."
From Jan. 3–Feb. 3, 2019, submissions can be submitted to www.omf.ngo/poetry/. Upon review, entries will be hosted on OMF’s webpage (omf.ngo/poetry-submission) to be enjoyed by all. Those with ME/CFS are encouraged to invite family, friends and medical team members to check the site regularly for inspiration.
A poem from both the youth and adult category will be selected and set to music to be released and performed in May during the May Momentum program.
Fears over a drug that can be used to treat alcohol addiction are unfounded, according to its first ever systematic review, led by academics at The University of Manchester.
Though the study found no evidence of any serious side effects linked to Naltrexone, many doctors hold back from prescribing the drug, often citing liver toxicity as a reason.
The review of 89 placebo controlled randomized clinical trials of naltrexone is based on 11,194 participants published inBMC Medicine.
...
Naltrexone is being investigated for a range of other conditions such as other addictions, gambling and other impulse control disorders.
Anecdotal evidence also suggests that at a very low dose, it may also be able to treat a range of immune-modulated conditions including Crohn’s disease, HIV, multiple sclerosis, fibromyalgia and Chronic Fatigue Syndrome (ME/CFS).
Cognitive problems of men with fibromyalgia — involving their memory, verbal fluency and problem-solving abilities — significantly affect their work, social relations and self-perceptions, a study finds.
Besides pain and fatigue, cognitive dysfunction is a common complaint among patients with fibromyalgia. These cognitive difficulties are often described as “fibro-fog,” which may include a perceived deterioration in mental clarity, as well as increased forgetfulness and difficulties in solving problems.
Memory dysfunction in fibromyalgia may impact working memory (short-term storage of information while performing other mental tasks), episodic long-term memory (used to remember particular episodes and experiences), and semantic memory, which involves aspects such as the meaning and relation of words.
People with fibromyalgia have also shown worse scores in performance-based memory tests, greater susceptibility to distraction, and higher levels of anxiety and worry about their memory than patients with other rheumatic conditions or healthy controls. Unlike women with fibromyalgia, men with this condition have regarded cognitive challenges as a significant interference in their ability to work.
“It seems that men and women experience dyscognition and its impact on daily life differently,” the authors wrote.
Brain Imaging and Behavior publication from Dr. Jarred Younger’s SMCI Ramsay pilot study supports involvement of neuroinflammation in ME/CFS
January 16, 2019
The researchers found markers of widespread neuroinflammation and metabolite abnormalities in the first whole-brain Magnetic Resonance Spectroscopy study of individuals with ME/CFS
Dr. Jarred Younger (Director of the Neuroinflammation, Pain and Fatigue Laboratory),
pictured with lead author of the Brain Imaging & Behavior study, Christina Mueller (MS),
and co-author Joanne Lin (PhD, post-doctoral fellow).
“Metabolite and temperature abnormalities were distributed across large portions of the brain, and are consistent with global neuroinflammation”
Researchers from the Neuroinflammation, Pain and Fatigue Laboratory, led by Jarred Younger (PhD) at the University of Alabama at Birmingham, and University of Miami Miller School of Medicine radiology experts published a new ME/CFS study in Brain Imaging and Behavior. With seed funding from SMCI’s Ramsay Award Program, the researchers brought novel use of a neuroimaging tool, magnetic resonance spectroscopy (MRS), to examine inflammatory processes at work in the brains of people with ME/CFS.
Dr. Younger’s pilot study provides compelling evidence that low-level neuroinflammation - present across a range of brain areas - is a factor in ME/CFS. The results corroborate previous observations of brain abnormalities, including elevated lactate, and extend findings from MRS studies that were limited to specific regions. Fulfilling a key goal of the Ramsay Award program, the data was recently used in a proposal to the National Institutes of Health to run an expanded study.
Image credit: Mueller et al. Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis
/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy. Brain Imaging Behav. 2019 Jan 7. doi: 10.1007/s11682-018-0029-4.
Read the full study here, and get a breakdown below.
What you need to know:
Dr. Jarred Younger and his co-authors completed a neuroimaging study of a female cohort of 15 individuals with ME/CFS (who met a modified Fukuda case definition) and 15 age-matched healthy controls using magnetic resonance spectroscopy (MRS).
MRS, a type of MRI scan, provides a non-invasive method for evaluating the types and quantities of chemicals in the brain using 3D images and can give a readout of metabolic changes.
The researchers found that “metabolite and temperature abnormalities were distributed across large portions of the brain” in ME/CFS participants, as compared to controls.
The most significant finding was elevation of choline in the anterior cingulate (ACC) area of the brain on the left side. Increases in choline are associated with immune cell activation and the authors note that previous research indicates a critical role for the ACC region in cytokine-induced fatigue.
Lactate (a byproduct of glycolysis in an oxygen-limited environment) was found to be increased in a number of brain areas, consistent with brain inflammation and an energy deficit at the cellular level.
Higher average temperatures were observed in five brain areas; the researchers included assessments that showed this finding wasn’t attributable to differences in blood flow or whole-body temperature. Inflammation requires more metabolic expenditures and three of the five areas also measured increased lactate, suggesting increased metabolism that could be related to neuroinflammation.
The authors acknowledge a few limitations of the study, including the small sample size, but these preliminary results support a hypothesis of neuroinflammation in ME/CFS and provide a benchmark for replication using larger study groups.
→ Want more information about the work of Dr. Younger? Watch an SMCI Science & Discovery webinar featuring a discussion with Dr. Younger below and check out coverage from Cort Johnson’s Health Rising blog here.
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
Do what you love, as the saying goes. And what Robin Marie loves is cuddling.
From a simple hug to full-on spooning, Marie of Kansas City, Missouri, makes about $40,000 a year offering professional cuddling services, according to SWNS.
"It’s very rewarding," Marie said. "It causes the body to release oxytocin, the 'bonding hormone,' which makes us feel happier and less stressed."
The sessions last between one and four hours, at $80 an hour, Marie said, but there are rules. All clients must be clothed at all times and the relationship is platonic.
“In the summer gym shorts is OK, as long as they come below the middle of the thighs," she added.
There are many reasons for seeking the services of a pro cuddler, according to Marie. “I get single people, people who are happily married, unhappily married, widowed, divorced, people in monogamous relationships and those with multiple partners," she said.
“Many people find it difficult to ask for what they want or need in life and seeing a cuddling professional can really help with that."
Marie, who went full-time in the career about a year and a half ago, has her own robust dating life separate from her job. "My boyfriends have been fine with it," she said. "They know that it’s not sexual at all."
She said her services have not only helped her clients, but herself as well.
“I have fibromyalgia and I’ve definitely noticed a reduction in pain, an improvement in my sleep, an increase in energy and a general reduction in my stress," she said. "... Cuddling has really helped me to go with the flow a lot more."
Call for Research Participants
Aged between 18 and 65
years
We are looking for volunteers with Chronic Fatigue Syndrome (CFS) or healthy individuals without CFS to take part in a study inevstigating fatigue and its impact on everyday functioning.
As a participant, you will be asked to complete an online survey, which will ask you questions about your CFS, your experience with CFS and your everyday functioning. The questionnaire should take between 40 and 70 minutes to complete.
Participation in this study is entirely voluntary.
To volunteer or for further information please click on the link or use your QR scanner to complete the following screening questionnaire:
Survey: What Should Be Considered In The Design Of A Clinic To Treat Complex Health Conditions?
South Australian news
Tuesday 15 January 2019
Please read the letter below from Cathie Powell at Bridges & Pathways and consider completing the online survey. It only takes about 10 minutes and can really help highlight the need for a round the clock, all in one clinic for all those with chronic complex health conditions.
What should be considered in the design of a clinic to treat complex health conditions?
We have an urgent request for you to respond to this State Health Survey about ‘the need for a one-stop clinic for people with chronic and complex conditions in South Australia’.
This is a unique opportunity for you to have your say on matters that are important to you about the services you require to manage your chronic condition/s.
While this is not the proposed ME/CFS clinic, it would be complementary and your responses will let the State Health Department know what all South Australians with complex chronic conditions need to manage their health.
We are aware that many of you have difficulty completing online surveys due to the severity of your illness, and that you may also require assistance from family members and / or carers to compile the information. With this in mind we are showing the questions below in printed form, so you have time to think about them before you go online to complete the survey.
As you reply, it is important to remember this is a State Clinic. The aim is to address Service gaps and reduce waiting lists that cause unnecessary stress, disability and the need to go to hospital emergency departments.
Some examples for us might be the lack of:
• GPs and GP clinics that provide continuing and appropriate care with both during the day and after hours access.
• Care Managers, Practice Nurses to coordinate the range of services you need.
• Affordable physiotherapy, exercise physiology, dieticians, occupational therapy, psychologists.
• Holistic providers (many of you have advised us, you use these as part of your care)
• Community education programs, Information, phone and other on-line support from peer groups.
For those of you who are house bound and or live in rural areas,
• The need for 24/7 phone support
• Telehealth GP appointments both with the doctor and your Case Manager
• Problems you have with physical access, ambulance, wheel chair, lifters for examination tables.
• Multiple Chemical Sensitivity issues
Any other issues related to the cost of your care e.g.
• The cost of medications
• Cost of tests to guide treatments and help with assessments.
• Services to meet Centrelink and National Disability requirements.
When you open the survey online, you will find the following explanation and 6 questions. As this is an opportunity to have your say, we suggest you to think about the questions before you answer. Thank you!
What should be considered in the design of a clinic to treat complex health conditions? Patients who have chronic and complex health conditions often utilise significant health services, not always at their convenience, through hospitals and emergency departments when access to their GP / other services, cannot be gained. SA Health wants to hear from consumers about what they would like to be considered in the design of a One-Stop Clinic for consumers with chronic and complex conditions.
Questions
1. What professions / healthcare workers would you like to see working there (eg: doctors, nurses,
physiotherapist, dietician etc)? (be as specific as you can)
2. What services would you use (eg: physio, wellness and prevention health education, nursing, etc)? (be as specific as you can)
3. What currently makes accessing health services difficult?
4. What would make you go to a ‘one stop clinic’ rather than present to an Emergency Department?
5. What would stop you from going to a ‘one-stop clinic’?
6. Any other comments or suggestions?
Below is the link to the on-line survey about the design of a clinic to treat complex health conditions on behalf of the SA State Health Department. We urgently request you complete it.
Thank you in advance. If you need help please ask your carers to assist you.
Regards Cathie and the SA ME/CFS Fibromyalgia Collaboration Clinic team. South Australian ME/CFS/FMS Clinical & Research Collaboration c/- Bridges & Pathways Institute Inc
Office: 08 82704316 or Mobile: 0447 133 682 or AH: 08 8358 6086
Email: bpprojects02@gmail.com
Women, who are healthy, but who exercise vigorously at most once per week or not at all, aged 18 to 65 and on no regular medication, wanted as volunteers for innovative Adelaide research investigating MRI markers of brain inflammation in fibromyalgia syndrome. Must not be biologically related to any one with fibromyalgia or chronic fatigue syndrome.
Participants are needed for an online survey (about 20 mins). Researchers from University of SA and Flinders University are looking to understand consumer health care needs.
Your support in this study will help us to understand your health care needs, determine how responsive your health system is to your needs, and identify areas where health systems could improve to better serve these needs. In appreciation you will be invited to enter a draw to win one of 10 x AU$50 Visa Cards. You will also have the opportunity to receive a copy of the findings.
ME/CFS Australia (SA) Inc Co-Signs International Open Letter
South Australian news
Monday 14 January 2019
ME/CFS Australia (SA) has signed an open letter to the journal Psychological Medicine asking for the 2013 PACE paper to be retracted.
By Deborah Marlin, Committee Member
Originally published on 30 March 2017
No doubt you will remember the PACE trial, a research study conducted in the UK looking at the effectiveness of GET (graded exercise therapy) and CBT (cognitive behaviour therapy) in the treatment of ME/CFS.
In 2013 the research team published a paper in the journal Psychological Medicine, in which they stated that each of these treatments led to recovery in 22% of patients, compared with only 7% in a comparison group. The two treatments, they concluded, offered patients “the best chance of recovery.”
There has been much criticism of the research methods used in this study from other researchers and from the ME/CFS community. ME/CFS Australia (SA), also, has serious concerns about methodological design flaws in the PACE trial.
The society's constitution has been updated:
