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.
Saturday 24 March 2018
1:30pm Speaker:Carol Hunter of Rose Park Psychology. Topic: Coping strategies for patients, carers and families living with ME/CFS.
Saturday 30 June 2018
1:30pm
Speaker: to be announced
Topic:
to be announced
Saturday 11 August 2018
1:30pm
Speaker: to be announced
Topic:
to be announced
Saturday 24 November 2018 Annual General Meeting
1:30pm
Speaker: Dr Michael Musker, Senior Research Fellow, SAHMRI
Topic:
Examining Chronic Fatigue Syndrome using biological markers: A comparison of controls and sufferers
MONTREAL April 25, 2018 /PRNewswire/ - International experts will participate in the first-ever Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Canadian Collaborative Team Conference on May 3–5, 2018 at CHU Sainte-Justine. The conference will bring together 250 researchers and healthcare professionals from various disciplines to develop an international research agenda for this debilitating disease, for which there is no known cause or effective treatment.
"I am extremely encouraged by the interest shown by leading researchers and clinicians, who recognize the importance of establishing research priorities that will advance our understanding of ME/CFS and identify new strategies for treating patients," says Dr. Alain Moreau, Head, Viscogliosi Laboratory in Molecular Genetics of Musculoskeletal Diseases, CHU Sainte-Justine Research Center and Scientific Chair of the Conference.
The conference will focus on:
Methods to properly diagnose patients with ME/CFS;
The role of biomarkers in diagnosing ME/CFS;
Benefits of establishing a biobank to advance research;
Ways to improve clinical care for ME/CFS patients; and
How to initiate, support, sustain and advance research on ME/CFS.
I read about low-dose lithium a few months ago. The article said that it might help prevent dementia and improve memory.
So, being old, with the usual forgetting where I put things and all that, I started taking 5 mg a day, a very low dose. To my amazement, after just a few days I found myself free of the chronic fatigue that had plagued me for more than a year after I had shingles. I haven’t seen this kind of result mentioned in any of the articles I found. I thought I was going to have to live the rest of my life at 25 percent energy, so it feels like lithium saved my life — or 75 percent of it, anyway.
Your story is intriguing. There is a new theory about chronic fatigue syndrome (Clinical & Experimental Immunology, February 2017). Immune cells may become impaired after infection, childbirth or trauma. Calcium channels that normally increase in number drop instead.
While it is not clear how lithium might affect fatigue, basic research shows that it does change how some brain cells handle calcium (Bipolar Disorders, November 2016). Researchers believe this may help explain how lithium works for people with bipolar disorder, but it also might tie in to your experience.
The article you read about dementia might have been a study showing that in Denmark, people are less likely to develop dementia if their drinking water contains more lithium (JAMA Psychiatry, Oct. 1, 2017). We hope that further research will clarify this connection.
Make sure your doctor knows you are taking low-dose lithium. You should ask to have your kidney and thyroid function monitored periodically, since at high doses lithium can harm these organs.
There was a time when former professional squash player John Rooney looked destined to rule the courts for even longer than he did. However, over a decade ago, he was diagnosed with Chronic Fatigue Syndrome (CFS) and, just like that, the future he had envisaged was stolen from him.
Even now, Rooney, who returned with his family from the United States to Galway just a fortnight ago to take up the Racquets Manager position at Galway Lawn Tennis Club, finds it all hard to accept. Despite having achieved so much in his career, he struggles to look beyond that time when his professional career came to an unceremonious end.
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 23 April 2018
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 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.
Welfare Rights Centre SA is a community legal centre which specialises in social security law. The Centre has 30 years of experience and expertise in social security law and Centrelink administration. We provide free legal advice and representation to clients facing Centrelink problems. Our clients are the most vulnerable in our community; including terminally ill clients, systematically abused and significantly mentally ill clients attempting to obtain the Disability Support Payment, young people escaping horrifically violent homes to obtain a payment to afford food and people leaving domestic violence relationships to get payments to start a new life.
...
In the 2015-2016 financial year, we provided legal advice to well over 2,000 clients facing Centrelink issues and saw over 500 clients through the Housing Legal Clinic.
Late on Friday afternoon, 26 May, we received the surprising and shocking news that the Welfare Rights Centre SA was unsuccessful in retaining their funding beyond the 30 June 2017.
This level of expertise does not exist anywhere else in South Australia. All this experience will be lost if the closure goes ahead. The inability to get timely access to secure income support is often at the root of other legal needs, including housing, credit and debt and family violence. We have assisted domestic violence victims, vulnerable minors, people with significant disabilities and those facing homelessness.
Not sure what you can do to support your ME/CFS community?
Buying an Entertainment Book for yourself or as a gift for others is one way of supporting your Society.
Even if you are unable to dine out, you can save money at selected supermarkets and other retailers. The two for one vouchers come in handy with visitors and children, when using entertainment venues or activity centres.
Let family and friends know they can purchase their new Entertainment Books from us. Not just books covering South Australia; books are available for other states in Australia.
"The Entertainment Book is great value for such a low price. There are a lot of savings I get back instantly. It more than outweighs the original price. There is something for everyone, casual, fine dining, adventure and family...." - Susan L
Laura Janner-Klausner is often so tired that she falls asleep at work and carries a pillow, ear plugs and eye mask wherever she goes.
Reform Judaism’s senior rabbi is not lazy — she has revealed she is one of 250,000 people in the UK who suffers from chronic fatigue syndrome (CFS).
She spoke publicly this week for the first time about her life with the debilitating illness which causes fever, aching, prolonged tiredness and depression in the hope it will break the stigma attached to the condition.
AuthorJoanna Charnas recently wrote a self-help book about living with chronic illness. In the #Book, she draws on her experiences with #Chronic Fatigue Syndrome (CFIDS), an illness that she contracted at age 19. It left her in a debilitated state for 17 years, finally resulting in a diagnosis. Joanna, a former HuffPost blog contributor, now works at a Navy medical center in San Diego. Her second book, “100 Tips and Tools for Managing Chronic Illness,” is full of personal anecdotes about her condition written with insight, heart, and humor. The book was made available on Amazon and the Barnes & Noble website as of April 20, 2018.
Joanna Charnas holds a B.A. and an M.S.W. A native of New York City, she has been a social worker for 30 years and currently specializes in group therapy. Joanna recently granted an exclusive interview where she discussed her illness, writing a book, and more.
Researchers have found that increased levels of three proteins in the saliva, namely alpha-enolase, phosphoglycerate mutase 1 and serotransferrin, may help differentiate fibromyalgia (FM) patients from those with other inflammatory diseases.
Researchers investigated whether saliva from FM patients has potential diagnostic and/or prognostic biomarkers that could improve how patients are managed and treated.
I sat down with David Tuller for an in-depth discussion of how he arrived in the ME/CFS space, his ongoing work debunking the farcical PACE trial, its Australian impact, the difficulties of publishing good journalism on the topic, and his plans for the future.
You can support David Tuller and find his work here:
4:11 - Interview starts 3:38 - Q1: What brought you to our sunny shores and how has your trip been so far? 5:52 - Q2: What originally sparked your interest in ME/CFS? 7:13 - Q3: Any reason you post on Virology blog as opposed to making your own blog? 18:48 - Q4: Your work is currently made financially possible through crowd-funding? 26:58 - Q5: I can imagine crowd-funding has the potential to be both stressful and rewarding? 30:37 - Q6: Why do you think the PACE authors and the Lancet are so defiant in the face such rigorous, sustained criticism? 33:24 - Q7: Adapted from Reddit user u/ASABM: What corrections would you like to see made in the PACE trial's published papers or is outright retraction the only proper solution? 35:00 - Q8: What do you make of certain researchers attempts to paint themselves as freedom-fighting martyrs in response to the careful criticism that to my mind are leveled not against them specifically but rather against the studies they've published? 36:22 - Q9: Under my specialists instructions, I'm still following the adaptive pacing principles as outlined by the UNSW Lifestyle Clinic. I understand you're talking to people like myself who've undertaken the same program. What kind of things have you been hearing so far? 41:38 - Q10: Do you think there's a way for the ME/CFS community to bridge the gap between us and those who endorse PACE? 43:23 - Q11: What are your priorities for the year ahead? (From Reddit user u/JosephStash) 45:31 - Q12: What should ME activists be highlighting to the public in order to raise our profile? (From Reddit user u/JosephStash) 48:32 - Q13: Are you aware of anyone else in our Parliament that may be receptive to our cause? (From Reddit user u/JameseyJones) 50:18 - Q14: How do you think we can recruit more journalists like you to investigate and report accurately on ME/CFS? 54:55 - Q15: How did you become such a bad ass mofo? (From Reddit user u/travellingbrooke)
Trial By Error: Professor Michael Sharpe’s Gaffe on Australian Radio
By David Tuller, DrPH
Wednesday 18 April 2018
*A clarification has been added to this post–see below
It’s Thursday morning in Australia, and I’ve just arrived in Brisbane after a red-eye from Perth, with a week left to go on my tour Down Under. Of course I’m backed up on things I need to write about, and hope to have some down time soon to pull stuff together. (I only post on here from Monday to Wednesday, because Professor Racaniello posts from Thursday to Sunday. I’m doing this post now from the Brisbane airport so I can get it up before Wednesday ends in New York.)
First, for those keeping track, here is yet another clip of me talking. This is a conversation with young Australians with ME/CFS. They “meet” regularly for video chats, and invited me to join them a couple of weeks ago. I enjoyed hanging out with them online and suggested that I didn’t have to be in Australia for us to do this again:
Since criticizing my crowdfunding efforts, Professor Michael Sharpe has continued his quixotic and silly twitter campaign to rebut his many critics. I have chosen for now not to engage with him further, since he is apparently impervious to reasoned argument. Of course, his self-portrayal as the aggrieved party in the PACE saga is unattractive and untrue.
An Epstein-Barr virus erupts from an infected
immune cell, called a B lymphocyte.
(Credit: Analytical Imaging Facility at
the Albert Einstein College of Medicine)
Scientists discover some kissing (disease) cousins
Epstein-Barr virus is infamous for causing mononucleosis – aka the kissing disease – but its impact may be even more far reaching and damaging.
Scientists at Cincinnati Children’s Research Foundation in the US report that Epstein-Barr virus (EBV), known as the virus that causes “mono” or glandular fever, also increases the risk of some people developing seven other major diseases, including multiple sclerosis, rheumatoid arthritis and type 1 diabetes.
In a far-reaching study they showed that a protein produced by EBV, called EBNA2, binds to multiple locations along the human genome that are associated with these diseases.
Their findings shed new light on how environmental factors, such as viral or bacterial infections, poor diet, pollution or other hazardous exposures, can interact with the human genetic blueprint and have disease-influencing consequences. However, they say its full impact could take years to explore.
Video courtesy of the Cincinnati Children’s Hospital.
The society's constitution has been updated:
