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.
Society Seminars for 2019
Saturday 23 March 2019 1:30pm Speaker: [to be confirmed] Topic: Pacing Venue: Sophia House, 225 Cross Road, Cumberland Park
Saturday 22 June 2019
1:30pm Speaker: Occupational Therapist [to be confirmed] Topic: [to be confirmed] Venue: Sophia House, 225 Cross Road, Cumberland Park
Saturday 7 September 2019 Annual General Meeting
1:30pm Speaker: [to be confirmed] Topic: [to be confirmed] Venue: Sophia House, 225 Cross Road, Cumberland Park
Saturday 23 November 2019
1:30pm Speaker: Mike Musker from SAHMRI Topic: [to be confirmed] Venue: Sophia House, 225 Cross Road, Cumberland Park
Christian Read has taken everything from period pain pills to heavy opioid-based medication to manage the severe pain he suffers from multiple sclerosis (MS).
...
After years of unrelenting pain, Mr Read approached a local GP about possible treatment with medicinal cannabis and was offered a low dose.
He said "within a week" he realised it was making a difference.
"It's been remarkable how quickly it transformed my day-to-day living," Mr Read said.
For patients like Mr Read, accessing alternatives such as medicinal cannabis had been difficult until the Federal Government relaxed restrictions in March 2018.
New data obtained by the ABC revealed just how popular the controversial treatment had become, with more than 3,100 medicinal cannabis scripts approved by the Therapeutic Goods Administration (TGA) from March to January 2019.
Metabolomics has quickly become one of the hottest research trends in chronic fatigue syndrome (ME/CFS). The metabolomic work in ME/CFS started with the Australians, picked up speed when Ron Davis and Bob Naviaux took it up, and is now being done all over the place. Hanson, Unutmaz and Lipkin make up the short list of new researchers involved.
With Ian Likpin and the Simmaron Research Foundation producing the first metabolomics study of cerebral spinal fluid (CSF), we should soon learn if the metabolomics profiles found thus far – which Hanson’s study reported have demonstrated an unusual consistency in ME/CFS – extend to the CSF and therefore the brain as well.
This study, partially funded by the Solve ME/CFS Initiative (SMCI), demonstrated how hot a topic metabolomics has become. The SMCI did a clever thing when, seeing that ME/CFS samples from prior NIH awards to Dr. Hanson were available, paid Metabolon to analyze them for her.
This study was, with its 832 metabolites surveyed, easily the deepest single look into the metabolomics of ME/CFS ever. Metabolon, the company doing the analysis, broke down the metabolites found into eight super pathways and 83 (!) sub pathways, making its analysis a very fine-tuned one.
No magic bullet was found – no single metabolite is yet able to explain ME/CFS – but the study did point an arrow in a promising direction.
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 12 February 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
NHMRC ME/CFS Advisory Committee Report To The CEO – Making Submissions
South Australian news
Monday 18 February 2019
From the ME/CFS Australia (SA) Inc committee:
Daunted by the process for responding to the NHMRC Draft Report?
ME/CFS SA has pulled together some information to assist with your submission process, including what you might say and how to submit.
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 18 February 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.
For some Valentine’s Day is a day not of love but of profound, despairing loneliness. The candies, cards and flowers from kind people can sometimes serve to open a void of despair, a black hole of unhappiness for them. They are people made lonely through disease. Some lonely for life.
And loneliness kills. That is the brutal bottom line on several recent studies. One by insurance giant Cigna found widespread loneliness, with nearly half of Americans reporting they feel alone, isolated or left out at least some of the time. Releasing the study, Dr. Douglas Nemecek, the company’s chief medical officer for behavioral health, said, “Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity.”
I’m fortunate that I’ve seldom been lonely, and never for long. But I’m privy to some of the worst loneliness on the planet. I write and broadcast about those who suffer from Mylagic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome. It is a disease of the immune system, possibly related to Lyme Disease and Fibromyalgia.
Their disease produces loneliness that those who aren’t lonely can only look upon aghast. We can talk about ME, investigate it, try to understand it. But we can never fully understand its limitless duration.
This suggests that silicone may trigger immune responses that increase the risk of developing either of the conditions. However, researchers noted, more studies are needed to fully interpret this relationship.
It was thought that breast implants did not trigger any immune response because a sturdy membrane separates the silicone from the adjacent tissue.
In recent years, however, some local immune responses were observed around breast implants and a relationship between silicone breast implants and autoimmune syndrome induced by adjuvants (ASIA) — a recently discovered condition in which exposure to a trigger leads to autoimmune responses — was suggested.
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.
Indian American teen Vidhima Shetty, of San Ramon, Calif.,
with her recently published book, "An Adolescent's Guide
to ME/CFS," that sheds light on chronic fatigue syndrome.
(Photo provided)
San Ramon Indian American Teen Vidhima Shetty Publishes Book on Chronic Fatigue Syndrome
An Indian American high school girl from San Ramon, Calif., has published a book discussing chronic fatigue syndrome.
The book, "An Adolescent's Guide to ME/CFS," written by 17-year-old Vidhima Shetty, attempts to shed light on a little-known disease that affects over 24 million people around the world.
Shetty's book provides a clear and concise overview of a disease with no cure, pinpointed cause, or FDA-approved treatment, and dives deep to reveal the struggle of patients that have to cope with one of the world’s biggest medical mysteries, according to the young author.
To help fund research in this field, Shetty is donating all proceeds from her book to the Open Medicine Foundation, which uses advanced scientific research to find a cure for this disease, a news release said.
“I wrote this book because I wanted to educate more people about this life-altering disease,” Shetty said in a statement. “I couldn’t imagine what ME/CFS patients, especially those who are my age, have to go through if they didn’t know much about the disease.”
Trying to be a good parent is a tough job, and to be a good parent with chronic pain is even tougher. Antoinette Sinnas is one mother living like this, and she knows the emotional side of it can cut even deeper wounds. Here, she opens up about losing your life, but still existing… From fibromyalgia and myalgic encephalomyelitis to spinal stenosis, this is what it means to suffer – and survive – such silent but excruciating conditions that are still surrounded in stigma.
I’m no stranger to chronic pain. What I suffer from is spinal stenosis, a condition that narrows the spinal canal, putting pressure on the spinal cord and nerves.
The left side of my body is most affected, and until my recent surgeries, I experienced excruciating pain that originated from my neck, shooting down to my foot. This used to be accompanied by numbness, tingling and a terrible burning sensation. Although my symptoms are gradually decreasing, my leg is perpetually weak, my knee buckles quite often and I feel like I was being skewered and grilled.
Year in, year out, full-blown flare-ups would put me totally out of action. This worsened each year and disrupted my family life, sleep patterns, emotions, stomach, menstrual cycle and made me lax as a wife and mother.
A copious amount of drugs and numerous conservative methods of pain relief couldn’t take it away. I was advised that the risk of surgery at my young age may do the trick, or I could end up in a wheelchair… or worse. The strong painkillers were eating into my body due to their harsh side effects. It was a catch-22; we didn’t know whether to wind the watch or bark at the moon.
Since January 2018, I have been more or less bedridden. Much as I try, the pain is hard to hide from my children. The guilt monster emerges from under the bed and plagues my feeling of being an incompetent mother. I am in no contest, aiming to be a super mum, but I find it heart-breaking that my young daughters are more attuned to my pain and always put my needs before theirs.
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
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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.
Alliston resident Marla Flear lives between her apartment
and minivan due to a rare condition called Multiple
Chemical Sensitivity (MCS). She has tried many things
to make her apartment more livable, like using fans to
ventilate fresh air into her living room. But she can
only spend about two hours in the building before
her symptoms become unbearable.
(Photo: Brad Pritchard/Metroland)
‘I can’t go anywhere’: Chemical sensitivities complicate Alliston woman's search for housing
Marla Flear living between apartment and van to manage symptoms
There have been many nights when Marla Flear has been forced to flee her apartment and sleep in her van, even when it’s -30 C outside.
The 63-year-old Alliston resident doesn't have much choice in the matter. Either she toughs it out in her vehicle, or she gets severely ill and makes another trip to the emergency room.
For the past 25 years she has lived with multiple chemical sensitivity (MCS), a condition that affects about three per cent of Canadians or about one million people across the country.
Things like air fresheners, laundry soap, perfumes/colognes and essential oils make her extremely sick, causing her to vomit, have breathing problems and shake.
While she got the apartment at an affordable housing building in August, she couldn't move in right away due to the odours from the new floor and fresh paint.
While those scents have gotten somewhat better, she’s never been able to stay inside the apartment for more than three hours at a time due to other odours in the building, like air fresheners used by other tenants.
Flear runs fans constantly to circulate fresh air into her unit, and she also uses expensive air filters, but they have limited effect.
A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and nitrosative stress in genetically predisposed individuals.
The consequences are detailed, including the role of increased intestinal permeability and the translocation of commensal antigens into the circulation, and the development of dysautonomia, neuroinflammation, and neurocognitive and neuroimaging abnormalities.
Increasing levels of such stress and the switch to immune and metabolic downregulation are detailed next in relation to the advent of hypernitrosylation, impaired mitochondrial performance, immune suppression, cellular hibernation, endotoxin tolerance and sirtuin 1 activation.
The role of chronic stress and the development of endotoxin tolerance via indoleamine 2,3-dioxygenase upregulation and the characteristics of neutrophils, monocytes, macrophages and T cells, including regulatory T cells, in endotoxin tolerance are detailed next.
Finally, it is shown how the immune and metabolic abnormalities of chronic fatigue syndrome can be explained by endotoxin tolerance, thus completing the model.
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.
Fibromyalgia is a chronic condition that affects millions of people in the United States. However, the authors of a new study now warn that a significant number of people who have received a diagnosis may not, in reality, have this condition.
People with fibromyalgia experience pain all over the body, as well as fatigue, headaches, and increased sensitivity to painful stimuli.
Other symptoms may include depression and anxiety, poor sleep, and problems with memory or thinking.
According to the Centers for Disease Control and Prevention (CDC), fibromyalgia affects approximately 4 million adults in the U.S., which equates to about 2 percent of the adult population.
To diagnose this condition, a physician is likely to ask about a person's medical history. They may also perform a physical exam and request X-rays and blood tests.
Although fibromyalgia is prevalent, new research has found that doctors have misdiagnosed many people as having this condition. Dr. Frederick Wolfe from the National Data Bank for Rheumatic Diseases in Wichita, KS, led the study.
The findings, which appeared today in the journal Arthritis Care & Research, indicate that using textbook criteria to diagnose someone can lead to a different prognosis than using a clinician's in-person assessment.
Unexplained fatigue is commonly reported in the general population, with varying severity. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sits at the extreme of the fatigue continuum, yet more individuals experience unexplained prolonged fatigue (1–6-month duration) or chronic fatigue (> 6 months) that, although debilitating, does not fulfil ME/CFS criteria. This review examines the empirical literature comparing symptoms for those with prolonged fatigue, chronic fatigue and ME/CFS.
Recent Findings
Substantial overlap of self-reported psychological, physical and functional impairments exists between chronic fatigue and ME/CFS. The conversion rate from prolonged or chronic fatigue to ME/CFS is not understood. Current research has failed to uncover factors accounting for differences in fatigue trajectories, nor incorporate comprehensive, longitudinal assessments extending beyond self-reported symptoms.
Summary
Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.
Keywords
Myalgic encephalomyelitis,
Chronic fatigue syndrome,
Fatigue,
Autonomic Function
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.
