December |
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CFSAC Public Comments
Here’s an insight into the politics of ME/CFS research in the US. |
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Riverland meeting reminder
A reminder that the Riverland ME/CFS Support Group’s first meeting for the new year will be held on Friday 16 January 2009 at the Riverland Resource Centre in Berri. |
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PatientsLikeMe
PatientsLikeMe is a new website that promotes a community of people with diseases to share their experiences. |
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MCS tip: natural pest control
Susie Collins at The Canary Report has a handy tip for people with MCS who have a problem getting rid of creepy crawlies around the home and don’t want to use regular pesticides. |
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Consumers’ Health Forum newsletter
Here’s the latest issue of the Consumers’ Health Forum of Australia newsletter healthUPdate. |
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Merry Christmas from the Riverland ME/CFS Support Group
The Riverland ME/CFS Support Group wishes everyone a happy and safe Christmas, and prosperous and rewarding new year. |
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Merry Christmas from the Society
The Society wishes you a very merry Christmas and a happy new year. |
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Yes, happiness is contagious – so here’s wishing you a happy Christmas
Researchers have found that happiness can be studied epidemioligically. In simple terms, it’s contagious. |
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Fibromyalgia pain may cause memory blips
PhysOrg.com reports that “The chronic pain from Fibromyalgia is devastating, but the suffering doesn’t end there. According to a new study by the University of Alberta’s Bruce Dick, people with the disease may have disruption in their memory because of the pain”. |
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A NICE dilemma?
Margaret Williams has written an article for ME Action UK centering on the UK’s NICE Guidelines. |
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Inflammation from CFS may be risk factor for other illnesses
Insciences reports that on a new study linking inflammation in ME/CFS with an increasaed risk of developing other illnesses. |
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Canberra Society calling for donations
Our friends in Canberra, the ACT ME/CFS Society Inc, are calling upon the Christmas cheer of their fellow man by asking for donations to its Society. |
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Chronically ill? Dental problems? Beware…
The ABC radio program Life Matters reports on what may be an undesirable move by the Government for those with disabilities. |
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Diagnostic blood test for ME/CFS coming
KTVN Channel 2 reports on the development of the first possible diagnostic test for ME/CFS. |
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MCS protocol adopted by hospitals in Canada
A hospital protocol for dealing with patients who have Multiple Chemical Sensitivity has been created and is now in use in Canada. |
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Misplaced Enzyme Is to Blame for Quick Fatigue After Mild Exercise
Scientists at the Howard Hughes Medical Institute have discovered a reason for severe fatigue that can result after even mild exercise. |
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Phoenix Rising – Cort Johnson does it again!
Once again the amazing American Cort Johnson has put out a snappy and information-packed issue of Phoenix Rising. |
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The National Disability Strategy: something to think about
Women with Disabilities Australia has made a submission to the National Disability Strategy review which covers quite a range of issues. |
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Arrest over ME campaigner’s death
BBC News reports that “The mother of a prominent ME sufferer and campaigner has been arrested on suspicion of murder following the death of her severely ill daughter.” |
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Support Line closed over Christmas
The Society’s Information and Support Line will be closed over the Christmas break beginning Friday 19 December 2008. |
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The special pensions supplement – help Mr Rudd to help us
Your Society’s ledger for 2007/08: expenditure $32,000 and income $14,000. It doesn’t add up. |
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The MCS Research Report – here’s a form letter for you
We alerted you on 11 and 12 November that the Office of Chemical Safety had released a draft report on MCS issues. |
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Twin Study suggests that Fibromyalgia Syndrome has a strong genetic background
The European Journal of Pain is about to publish the results of a study in which fibromyalgia symptoms appear to have a strong genetic component. |
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The 7 Genomic Subtypes of Chronic Fatigue Syndrome
Adrienne Dellwo, chief contributor to About.com’s Fibromyalgia & Chronic Fatigue Syndrome section, reports that “[t]he first diagnostic test for chronic fatigue syndrome (CFS or ME/CFS) could be on its way, thanks to a genomics study lead by Jonathan R. Kerr, MD, Ph.D., of St. George's University in London”. |
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NU under fire over chronic fatigue claims
The FTAdviser reports that “[insurance company] Norwich Union has come under fire from an adviser for stopping his permanent health insurance (PHI) payments, claiming he was targeted because his condition [ME/CFS] is difficult to diagnose”. |
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CFIDS Association Funds Largest-Ever CFS Research Initiative
The CFIDS Association of America has announced that “millions who suffer from chronic fatigue syndrome (CFS) have new reason for hope today [3 December] with the announcement of an unprecedented research program to help identify biomarkers to improve diagnosis and treatment of CFS”. |
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A Profile of ME/CFS Patients - How Many Years and How Many Doctors?
ProHealth conducted a survey in its newsletter to give an overall profile of ME/CFS patients. |
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The Society on Facebook
The Society’s Facebook Cause has just passed its half century with 52 members, and the Group is approaching its ton with 80 members. |
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Farewell and thanks, Sandra Kanck
Veteran State MLC Sandra Kanck (South Australian Democrats) has retired. |
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Re-Thinking "Exercise" for Fibromyalgia & CFS
Adrienne Dellwo, chief contributor to About.com’s Fibromyalgia & Chronic Fatigue Syndrome section, has written an interesting article about the concept of “exercise”. |
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MCS research at James Madison University
The team at Multiple Chemical Sensitivity (MCS) Research at James Madison University is calling upon people to participate in two studies. |
November |
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Tissue pathology of CFS/ME
The ME Information Portal has a short article on research headed by Dr Abhijit Chaudhuri on tissue pathology on people with ME/CFS. |
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Green Christmas Giving Cards
Green Christmas Giving Cards are cards that support communities and the environment. |
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Riverland meeting reminder
A reminder that the Riverland ME/CFS Support Group’s next meeting will be held next Friday (5 December 2008) at the Riverland Resource Centre in Berri. |
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Online petition
Here’s a message from members of the Belgian patient advocacy group, MEAB.vzw, who are determined to enlist as much support as possible for their cause in changing the Belgian government’s view of treatment recommendations for ME/CFS. |
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Fibromyalgia video
YouTube has a video of a presentation on Fibromyalgia for primary care physicians. |
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Online study: more comments
We’ve had more comments about the University of New England’s online ME/CFS study. |
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Why Don't Painkillers Work For People With Fibromyalgia?
If you’ve tried amitriptyline – or any other drug for that matter – and found that it didn’t help your symptoms, you’re not alone. |
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Amitriptyline in the treatment of fibromyalgia
The medical journal Rheumatology has published a paper entitled “Amitriptyline in the treatment of fibromyalgia: a systematic review of its efficacy”. |
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The Trans-NIH Working Group on CFS
The Office of Research on Women’s Health in the US sponsors The Trans-NIH Working Group on Chronic Fatigue Syndrome which researches ME/CFS. |
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YouTube ME/CFS group
ME/CFS Awareness - My Story is the name of a group of people who have posted YouTube videos about their experiences with ME/CFS. |
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Phoenix Rising: Interview with Dr John Chia, Part II
“ME/CFS Awareness - My Story” is the name of a group of people who have posted YouTube videos about their experiences with ME/CFS. |
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Online study: comments
We’ve had a few members participate in the University of New England’s online ME/CFS study – and they’re not entirely happy about some of the questions. |
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The Music Works
The Music Works – aka The Dynamic Day Gig – is a monthly event held at the Governor Hindmarsh Hotel. It’s organised by and for people with disabilities. |
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Ten Discoveries about the Biology of CFS
Here’s a summary of an article by Dr Anthony Komaroff, MD that outlines physical aspects of ME/CFS. |
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President’s Report: AGM 2008
Society President Peter Cahalan has provided us with the report he presented to the Annual General Meeting on Saturday 9 November. |
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Volunteers wanted for online study
Researchers at the University of New England are looking for volunteers over the age of 18 with fatigue issues/disorders to participate in an online study. |
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Kidsflix
Our friends at Arthritis SA present Kidsflix, a regular series of movie presentations for disabled and disadvantaged children. |
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Fibromyalgia Can No Longer Be Called the "Invisible" Syndrome
SNM reports that “Using single photon emission computed tomography (SPECT), researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed.” |
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The Federal MCS Review: comment by Peter Evans
Peter Evans, Convenor of the South Australian Task Force on MCS, has responded to the Office of Chemical Safety’s request for comments on its draft report on MCS. |
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The Federal MCS Review: the price of lethargy is… psychiatry?
The Federal Department of Health and Ageing has just put out a draft issues paper on MCS for public consultation. |
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The National Disability Strategy: make your voice heard
We let you know on 5 November that the Federal Government was holding a public consultation process on a National Disability Strategy. |
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Society AGM photos
Photos from the yesterday’s Annual General Meeting are now available. |
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Society AGM reminder
Just a quick reminder that the Society’s Annual General Meeting will be held at 1pm today in the Disability Information and Resource Centre, Adelaide. |
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A-Frame Exhibition
Arts Access SA has created A-Frame, an art exhibition and auction featuring works created by people with disabilities. |
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Centrelink website links
Mary Campbell from the ACT ME/CFS Society has put together a list of links to Centrelink services for people with disabilities. |
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MCS Rally and National Disability Strategy
Peter Evans, Convenor of the SA Task Force on MCS, reports on the recent MCS Public Rally and the invitation for submissions to the National Disability Strategy. |
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Know Fibro
Know Fibro is a new website with information and help about Fibromyalgia, and was created by Martha Beck, PhD, in association with National Fibromyalgia Association and Eli Lilly and Company. |
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The High Cost of Progress
The blog, Izmet's Dream, has an article on an unintended consequence of modern living: chemicals. |
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Fibromyalgia educational initiative launched in the US
In a concerted effort to raise awareness of fibromyalgia in the US, The Johns Hopkins University School of Medicine, The Institute for Johns Hopkins Nursing, and the National Fibromyalgia Association have banded together to launch the “Fibromyalgia Circle of Care Initiative”. |
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MCS Public Rally photos
Photos of the MCS Public Rally held yesterday (Friday 31 October) are now available. |
October |
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CFS & Fibromyalgia Research Updates—the Sonoma Working Group
Dr Jacob Teitelbaum, a well-known authority on ME/CFS in the US, has published a report on the Sonoma Working Group, a collection of researchers presenting the latest findings to each other. |
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IACFS/ME newsletter
Here’s a great web page that explains ME/CFS to children in a beautifully simple manner. |
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Explaining ME/CFS to children
Here’s a great web page that explains ME/CFS to children in a beautifully simple manner. |
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Allergic to the 21st Century
Foxtel will be showing a 30-minute program entitled “Allergic to the 21st Century” this Thursday (30 October) at 7:30pm on The LifeStyle Channel. |
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Riverland Group 1st Birthday photos and report
Photos and a report are now available of the Riverland ME/CFS Support Group’s first birthday on Friday 24 October. |
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Want to go to a cheap music gig?
The Music Works – aka The Dynamic Day Gig – is a monthly event held at the Governor Hindmarsh Hotel. |
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ME/CFS Guidelines: online version
The South Australian-authored ME/CFS Guidelines can now be read online. |
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MCS Public Rally
The South Australian Task Force on Multiple Chemical Sensitivity will hold a public rally on Friday October 31 at 12 noon outside the Adelaide office of the federal Department of Families, Housing, Community Services and Indigenous Affairs at 11 Waymouth Street, Adelaide. |
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The Benefits of Building Your Fibromyalgia Support Network
Here’s a useful article by Dr Edward F Group III, DC, ND, DACBN on the advantages of being part of a fibromyalgia support group. |
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Obstructions for quality care
The online medical journal, ScienceDirect, has published the results of a case study on how patients with ME/CFS are likely to be treated in the doctor’s office, and how they felt about it. |
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ME/CFS artist’s exhibition
Mamie Holst is a US artist with ME/CFS and has used her illness to create art with a series of paintings. |
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Reminder: Riverland ME/CFS Support Group Birthday
Just a quick reminder that the Riverland ME/CFS Support Group low-key first birthday celebrations will take place this Friday, and you’re invited. |
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A life turned upside down
MCS receives a little more awareness and publicity in the media with a recent article in Ireland’s online newspaper, Independent.ie. |
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MCS Rally in Japan
The first ever rally for Multiple Chemical Sensitivity awareness to be held in Japan will take place on Saturday 22 November at 1:30pm. |
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Creative for a Second
People with ME/CFS tend to be a creative lot, and here’s more proof. |
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Phoenix Rising: The Cortisol Edition
Phoenix Rising is an informative newsletter put out monthly by American CFS sufferer Cort Johnson on his website CFS Phoenix. |
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Society AGM
People with ME/CFS tend to be a creative lot, and here’s more proof. |
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Major Belgian Report on ME/CFS
Dr Peter Del Fante has drawn our attention to an important new study on the diagnosis and treatment of ME/CFS. |
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Research Campaign Reaches $1 Million Goal!
The CFIDS Association of America has achieved its goal of raising US$1 million in The Campaign to Accelerate CFS Research. |
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Riverland Field Days
The Riverland ME/CFS Support Group participated in the Riverland Field Days on 17 & 18 September 2008. |
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MCS: join in the annual rally
The Society once again calls on its members to support a rally to raise awareness about Multiple Chemical Sensitivity. |
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Contribute your bit to a survey on chronic pain
Our friends in Queensland are circulating a survey which they’d like as many of us as possible to fill in. |
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Anthony Komaroff MD’s lay summary of the Viruses in CFS conference
The 6th International Conference on HHV-6 & 7 and satellite conference on Viruses in CFS held in Baltimore 19-23 June 2008 were very successful, with over 230 scientists and clinicians in attendance. |
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National Arts and Disability Strategy
The Cultural Ministers Council wants to develop a national arts and disability strategy. |
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The Society on Facebook
ME/CFS Australia (SA) Inc adds another facet to its digital presence with the world of Facebook. |
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Society meeting photos
Photos are now available from Saturday’s Society meeting held at the Disability Information and Resource Centre in Adelaide. |
September |
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Another member writes to the Pensions Review
Riverland member Clytie Siddall has added her voice to our campaign to get the needs of people with ME/CFS better understood by the Pensions Review committee. |
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The Pensions Review – a member gets writing
A member has taken up our call for people to write submissions to the National Pensions Review. |
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Our AGM is coming up – get your papers here
Our 2008 AGM will be held on Saturday 8 November at DIRC. |
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Living with Fibromyalgia documentary DVD
Living with Fibromyalgia is a feature-length documentary that has just been released on DVD. |
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Tot with ME writes book
Eve Williams, a six-year-old who was diagnosed with ME/CFS 18 months ago, wrote and illustrated her book, Bogo and Lucy’s Forest Adventure. |
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Riverland ME/CFS Support Group Birthday
The Riverland ME/CFS Support Group would like to invite you and any other member or sufferer to their low-key first birthday celebrations. |
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TV report on Sophia Mirza
The UK’s Meridian Tonight has a news item on Sophia Mirza. |
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Live chat Q&A with Dr Mark Pellegrino: new time
The upcoming live chat Q&A we mentioned a little while ago has had its time changed. |
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2009 IACFS/ME Conference
If you’re in the USA next year you may want to pop in to an international conference on ME/CFS being held there 12-15 March 2009. |
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Phoenix Rising: Interview with Dr Ken Friedman Part III
The latest offering from Phoenix Rising is the conclusion of an interview with Dr Ken Friedman. |
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Riverland meeting reminder
The Riverland ME/CFS Support Group’s next meeting will be held tomorrow (12 September) at the Riverland Resource Centre in Berri. |
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Phoenix Rising: Treating Orthostatic Intolerance
The latest from Cort Johnson focuses on orthostatic intolerance in a five-part section called “The Perils of Standing: Treating Orthostatic Intolerance”. |
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Singer/songwriter Tamara Lewis
Tamara Lewis is a singer/songwriter from Seattle who has spent 10 years living with ME/CFS. |
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Call for more money for ME research
The UK’s Bromsgrove Standard reports that “the chairman of the Worcestershire ME Support Group Ian Logan has called for more funding for research into the debilitating illness.” |
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National Invisible Chronic Illness Awareness Week
National Invisible Chronic Illness Awareness Week is held each September and is, in the words of its organiser, Lisa Copen, “a worldwide effort to bring together people who live with invisible chronic illness and those who love them.” |
August |
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Brain dysfunction may explain fibromyalgia symptoms
Reuters India reports on a recent research paper that links dysfunction in a part of the brain known as the hippocampus to symptoms in fibromyalgia. |
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Fresh scent may hide toxic secret
The Seattle Post-Intelligencer reports that chemicals used in items such as air fresheners and detergents to give things a ‘cleaner and fresher’ smell may be much more hazardous to people’s health – especially those with MCS – than previously thought. |
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Phoenix Rising: Congressional Briefing etc
The latest from Cort Johnson includes overviews of the Congressional Briefing for CFS and the recent federal advisory committee (CFSAC) meeting. |
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ME/CFSer to play at the Paralympics
Helen Freeman, an 18-year-old with ME/CFS, has been selected to play at the Paralympics in Beijing in September. |
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The unstoppable force of human nature
(or: And yet another student excels…)
This is looking to be “Amazing Student Week”, as 17-year-old UK (yep, it’s the UK again) student, Cherith Johnson, has achieved four A+s out of the five GCSEs she was entered for this year. |
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Yet another student excels
We don’t know what’s in the water over in the UK, but 13-year-old Edward Kimberley, a student with ME/CFS who is schooled from home, has achieved two A+s in his chemistry and maths IGCSE. |
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The 9 Most Common Food Intolerances
You may find this article by Sheryl Walters helpful if food affects your ME/CFS symptoms. |
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Student excels despite ME/CFS
The Ormskirk Advertiser reports on UK student David Walker who has achieved straight As in his A-levels despite having ME/CFS. |
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Live chat Q&A with Dr Mark Pellegrino
ProHealth’s ImmuneSupport.com will be hosting a live chat Q&A with Fibromyalgia doctor, Mark Pellegrino, MD on Friday 19 September 2008 from 3 to 4pm Pacific Standard Time in the US. |
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“Everybody Knows About Me”
US band Cinder Bridge has released a song about Myalgic Encephalomyelitis entitled “Everybody Knows About Me”. |
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Guaifenesin for Fibromyalgia
The Vancouver Sun reports on the use of guaifenesin in helping alleviate symptoms of Fibromyalgia. |
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ME/CFS on the radio
Dr Stephen Graves, Director of Hunter Area Pathology and the Australian Rickettsial Reference Laboratory, spoke about ME/CFS with presenter Ian Woolf on Diffusion Science Radio, a program broadcast on 2ser in New South Wales. |
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Brain fog: handy hints
Good Living with Fibromyalgia Workbook: Activities for a Better Life is a book that contains a few handy hints for those who experience one of the most common symptoms of ME/CFS/FM: brain fog. |
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2008 Riverland Field Days
The Riverland ME/CFS Support Group will be at this year’s Riverland Field Days on 17 September and 18 September. |
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Next Riverland Support Group meeting
The Riverland ME/CFS Support Group’s next meeting will be held on Friday 12 September 2008 at the Riverland Resource Centre in Berri. |
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New book and website: Surviving Severe M.E.
Surviving Severe M.E. is a book written by UK author, Claire Wade. |
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Sleep Disorders Australia: Annual General Meeting
Sleep Disorders Australia is holding its Annual General Meeting on Wednesday 20 August at 7:30pm in the Unley Civic Centre, Oxford Terrace, Unley. |
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Phoenix Rising: The Symposium on Viruses in CFS
The latest from Cort Johnson is entitled “The Symposium on Viruses in Chronic Fatigue Syndrome”. |
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Riverland ME/CFS Support group meeting photos and report
The Riverland ME/CFS Support Group held a meeting at 1:30pm on Friday 1 August at the Riverland Resource Centre in Berri. |
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ME/CFS Australia (Victoria) website up and running again
The ME/CFS Australia (Victoria) website has had a facelift and is online again. |
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Epic bike ride for ME/CFS fundraising
Eric Smart (pictured) is a former postie and now yoga teacher from Scotland. Now recovered from ME/CFS, Eric has undertaken an epic journey by bicycle to raise funds for The ME Association in the UK. |
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FMS & ME/CFS Self-Management Program
The Southern Chronic Illness Network is hosting a series of self-management courses for people with ME/CFS and fibromyalgia. |
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New support group: Southern Chronic Illness Network
The Southern Chronic Illness Network is an ME/CFS and fibromyalgia support group based in Noarlunga. |
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New book: The State of Me
The State of Me is the debut novel by UK author Nasim Marie Jafry. |
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Lost in a System Where Doctors Don't Want to Listen
The Washington Post has published an interesting article by Benjamin H. Natelson entitled “Lost in a System Where Doctors Don't Want to Listen”. |
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International Symposium video
A video is available of a Microarray Studies Session from the International Symposium on Viruses in Chronic Fatigue Syndrome and Post-Viral Fatigue held on 22 and 23 June 2008 in the US. |
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Medical abstract
The following medical abstract was posted on Co-Cure’s List Archives for August 2008. |
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Society meeting photos
Photos are now available from today’s Society meeting held at the Disability Information and Resource Centre in Adelaide. |
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Society meeting today
A quick reminder of today’s Society meeting. |
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Are you a “lurker” or a “poster”?
It could make a difference to your overall wellbeing. |
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Phone sheep
Although this has absolutely nothing to do with ME/CFS, here’s something unusual we’ve found on the Internet (where else?) that you might find interesting: Phone sheep. |
July |
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Riverland meeting reminder
The Riverland ME/CFS Support Group’s next meeting will be held this Friday (1 August 2008) at the Riverland Resource Centre in Berri. |
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Society meeting reminder
The next Society meeting will be held next Saturday (2 August 2008) at 1pm in the DIRC. |
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Yoga classes for Chronic Fatigue Syndrome
These are special yoga class that run for 6 weeks and are specially designed for people with chronic illnesses such as CFS, ME, post-polio syndrome and Fibromyalgia. |
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ME/CFS declassified as a mental illness in the UK
Britain’s Royal College of General Practitioners has recently removed its classification of CFS as a “mental health disorder” after calls from The ME Association for the RCGP to reconsider its position. |
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The lactic acid research project: healthy volunteers wanted
Dr Ian Buttfield is involved in a research project investigating lactic acid. |
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Report on health in SA: did we feature?
The State Department of Health has just published South Australia: Our Health and Health Services 2008. |
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Liverpool Daily Post article: “Struck down, but aftermath is striking”
The Liverpool Daily Post has an article about Madelaina Murthwaite, an artist with Fibromyalgia who has a new exhibition, Beauty Versus the Beast, which was created in order to raise awareness for the illness. |
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The Sun article: “Messages of hope to ill kids”
British newspaper The Sun has an article about Vikki George who has had ME/CFS since childhood and helps run a charity called Post Pals. |
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Phoenix Rising: Interview with Dr Ken Friedman Part II
The latest offering from Phoenix Rising is Part II of an interview with Dr Ken Friedman. |
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Our Badge Day sellers charm $1660 from Adelaide’s citizens
Organiser Carole Carroll and a team of volunteers from the Society and Annesley College – thanks, girls – got us our best Badge Day result in some years on Friday 27 June. |
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From our mates in Wollongong
Wollongong hosts an active ME/CFS society which puts out a regular newsletter. |
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Victorian Society news:
Lord Mayor’s Charitable Foundation “85 Days of Giving”
Nominate ME/CFS Victoria as your favourite charity in the Lord Mayor’s “85 Days of Giving” for the Society to be in the running for one of 85 grants of $3,000 being given away. |
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Recovery fom CFS – another view
Alexandra Barton has sent us information about her new book, Recovery from CFS – 50 personal stories. |
June |
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New book: Recovery fom CFS
Alexandra Barton has sent us information about her new book, Recovery from CFS – 50 personal stories. |
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Membership Application form
If you wish to join the Society, or need to renew your membership, our Membership Application form is now available as a printable PDF file. |
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Multiple Chemical Sensitivity: Artist uses art to fight illiteracy
The above headline may not make much sense, but the following is the amazing tale of Holly Pendergast, an artist with MCS who travelled to Africa with a passion for creating a series of paintings there and ended up starting a book donation drive to combat illiteracy. |
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Scientific evidence for chronic fatigue syndrome
One enterprising individual has created a YouTube video for all the naysayers who believe that ME/CFS is an imaginary disease. |
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“Not In My Head” Radio Public Service Announcement
Although it’s now a couple of years old (it was part of a 2006 awareness campaign implemented by the CFIDS Association of America), we’ve only just found this US radio Public Service Announcement via the wonders of YouTube. |
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Medical paper: “Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases”
Garth L. Nicholson, PhD, has authored a medical paper entitled “Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases”. |
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UK High Court hearing
EDP24 reports on two UK men who have won a significant legal victory. |
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Centrelink: important information for volunteers
Do you volunteer with us or another outfit or thinking about it? Here’s a Federal program which will pay for a training credit for you and perhaps put something more in your pocket. |
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Here’s something for tertiary students with ME/CFS
There’s a new program to improve support for students with disabilities in the TAFE and university systems: the National Disability Coordination Officer Program. |
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HCA Forum reminder
A reminder that The Health Consumers Alliance of SA Inc is running a forum today at 3pm. |
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Phoenix Rising: Nancy Klimas on the Immune System, Treatment and the Future
The latest offering from Phoenix Rising features on Dr Nancy Klimas. |
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MCS & the hospital environment – a recent experience
Society member Colin Northey has sent us a letter telling us about a positive experience he and his wife had when she had to stay in hospital recently. |
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Society meeting photos
Photos are available of today’s Society meeting which held at the Disability Information and Resource Centre in Adelaide. |
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Support our friendly Radio 5RPH
1197am RPH Adelaide has been a great supporter of the Society. |
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Genetic testing and your rights at work
Congress has just enacted a law to protect persons from having genetic testing – e.g. for sensitivities to certain chemicals which might be found in a particular workplace – from having their employment and other rights infringed. |
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Society meeting reminder
The next Society meeting will be tomorrow (14 June 2008) at the Disability Information and Resource Centre, 195 Gilles Street, Adelaide. |
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The Minister for Health on MCS issues
Here’s a response from the South Australan Minister for Health, Hon John Hill MP, to Sandra Kanck MLC on two issues. |
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Badge Day: Friday 27 June
The Society’s Badge Day will be held this year on Friday 27 June in the centre of Adelaide and we’re calling for volunteers to come and help us. |
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Society meeting reminder
The next Society meeting will be held this Saturday 14 June 2008 at DIRC. |
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Fibromyalgia: Catalan Government passes Resolution
We’ve received a message from Hope4all about Spain’s Catalan Government passing a resolution to “organize health services” for people with ME/CFS/FM. |
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The Feds respond to Queensland’s lobbying
Here’s a response from the Federal Department of Health and Ageing to lobbying by Queensland president Lyn Wilson. |
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Our Glenelg support group winds up
We’re sorry to announce that our long-running Glenelg support group is winding up. |
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Fibromyalgia SA Education & Information Meeting
Here are the details for the next Fibromyalgia SA Education & Information Meeting. |
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Farewell Miss Joy Miller aka The Nice Lady
We heard with deep sadness a few weeks ago that our most generous donor ever, Ms Joy Miller, had died. |
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Quote of the week
In what must be the quote of the week, Leonard Jason, a professor of psychology at DePaul University, talked about the perception some people have about ME/CFS in an interview for The New York Times in a recent article. |
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Our health system: listen in for us
The Health Consumers Alliance of SA Inc is running a forum on “What do we want from our Health System?” on Wednesday 18 June at 3pm. |
May |
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GreenPC
GreenPC is a great initiative from Infoxchange Australia in which people on low incomes and with a Health Care Card can purchase low-cost computer equipment. |
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Economist.com article: The roots of chronic fatigue
The UK’s Economist.com has an interesting article about ME/CFS entitled The roots of chronic fatigue. |
• |
New support group
A new support group has come into being in the Clare Valley. |
• |
MCS Hospital Guidelines: have your say
Hospitals are often highly hazardous places for people with Multiple Chemical Sensitivity. |
• |
Phoenix Rising: Interview with Tom Hennessy
The latest offering from Phoenix Rising is an interview with ME/CFS advocate Tom Hennessy. |
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Interested in yoga?
Josie Grigg (Dip. Yoga, B. Eng. Hons.) is a yoga instructor who runs BodyPrayer which describes itself as a “Christian Yoga/Pilates style body conditioning class”. |
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New book
Reviving the Broken Marionette is a new book by Finnish author, Maija Haavisto. |
• |
Next Society meeting
The next Society meeting will be held on Saturday 14 June 2008 at the DIRC. |
• |
Health Consumers Alliance: Open Forums
The Health Consumers Alliance of SA Inc is holding two Open Forums in Port Augusta on 11 and 12 June. |
• |
Radio interview
Society president Peter Cahalan spoke on radio station 1197am RPH Adelaide at 7:30 last night. |
• |
Disability pensions – the Queensland Society lobbies the Prime Minister
Society president Peter Cahalan speaks on radio station 1197am RPH Adelaide at 7:30 tonight. |
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Radio interview tonight
Society president Peter Cahalan speaks on radio station 1197am RPH Adelaide at 7:30 tonight. |
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Chronic Pain and Sex: a Couple's Gentle Battle With Fibromyalgia
ABC News has a helpful article about a problem facing a lot of people with Fibromyalgia: coping with intimacy and chronic pain. |
• |
ME Association survey
The ME Association is calling on people with ME/CFS to help them with a survey on how well they cope with the disease. |
• |
Interview on 9am with David & Kim
Channel 10’s weekday morning TV program 9am with David & Kim featured an interview yesterday (Thursday 15 May) with ME/CFS sufferer Imogen Newhouse and Dr Don Lewis. |
• |
Clean air is an issue for us: so support CASANZ
The Clean Air Society of Australia & New Zealand (CASANZ) is holding a special meeting tomorrow (Thursday 15 May). |
• |
Interview on 9am with David & Kim
As part of this year’s ME/CFS International Awareness Week (12-18 May 2008), Channel 10’s weekday morning TV program 9am with David & Kim will feature an interview tomorrow (Thursday 15 May) highlighting ME/CFS. |
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Blogging for ME/CFS Awareness 2008
UK blogger RachelCreative is trying to raise ME/CFS awareness by calling on fellow bloggers to blog on or around ME/CFS International Awareness Day (12 May) or leave a comment on her blog. |
• |
Victorian Society news update:
Ivanhoe Libary
The Ivanhoe Library at 255 Upper Heidelberg Rd, Heidelberg, has a display for ME/CFS Awareness Week. |
• |
Victorian Society news update:
Events
ME/CFS Australia (Victoria) has two items of interest this week. |
• |
World ME & FM Prayer and Meditation Day
In an event that coincides with ME/CFS International Awareness Day, World ME & FM Prayer and Meditation Day (also known as time2link) occurs today between 12 noon 12:30pm. |
• |
International ME Awareness Day vigil
As reported last month, Vanessa Mitchell and her son have created a website that asks people to join them in a vigil for International ME Awarenesss Day. |
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May 12: ME/CFS International Awareness Day
Today is ME/CFS International Awareness Day. |
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Feedback
We’re constantly looking for ways to improve our website, so we like to hear from you as often as possible. |
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'Seven genetic types of ME' found
BBC News reports that “Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome.” |
• |
Women With Disabilities Australia (WWDA): Report Update
Women With Disabilities Australia (WWDA)’s latest bulletin outlines a range of interesting initiatives and political lobbying efforts going on at present. |
• |
A Hummingbirds Guide: Hospital or Carers notes for M.E.
Jodi Bassett’s A Hummingbirds Guide website has a new section entitled “Hospital or carer notes for M.E.”. It contains helpful information on caring for people with ME/CFS in hospital. |
• |
Phoenix Rising: The Advocacy Month Part II
The latest offering from Phoenix Rising is The Advocacy Month Part II: The US Federal Advisory Committee Meeting on CFS. |
• |
Sandra Kanck pursues a better housing deal for people with MCS
Sandra Kanck MLC wrote to the Minister for Housing and Disability in February about a better deal for people with MCS. |
• |
Help an ME/CFS researcher
Tanya Secker, who lives with ME/CFS herself, is conducting research into the impact of ME/CFS on the quality of life. |
• |
Multiple Chemical Sensitivity on The Health Report
Norman Swan of ABC Radio National’s The Health Report interviews Professor Gail McKeown-Eyssen, a Canadian cancer researcher who has found out interesting things about the body’s pathways for people with MCS. |
April |
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ME/CFS T-shirts
Gold Coast artist Virginia McGowan has created a range of ME/CFS-related T-shirts for sale. |
• |
Volunteers Day concert
This is for everyone’s who volunteered with us. |
• |
Phoenix Rising: Interview with Dr Ken Friedman
The latest offering from Phoenix Rising is an interview with Dr Ken Friedman. |
• |
ME/CFS Society of WA: new website
Our friends in Perth, the ME/CFS Society of WA, have a new and very informative website. |
• |
The Empty Chair Project
P.A.N.D.O.R.A. has come up with a neat way to fill meetings: with photos of attendees who can’t be there in person. |
• |
Forget-me-not key rings for you
Society member Rebecca Cordingley is a talented glassmaker. She has made a small run of key rings using our Society symbol, the forget-me-not. They retail at $10 plus postage. |
• |
A New Fibromyalgia Remedy: Antiviral Drugs
U.S. News & World Report has published a news article about a treatment option for fibromyalgia involving antiviral drugs. |
• |
A Vigil For International ME Awareness Day 12th May 2008
Vanessa Mitchell and her son have created a website that asks people to join them in a vigil for International ME Awarenesss Day. |
• |
Phoenix Rising: February 2008
The latest offering from Phoenix Rising is the February 2008 edition. |
• |
Course on mindfulness and cognitive behaviour therapy
Psychologist Liana Taylor, our speaker for April, has just sent us information about a coming course at the Mindfulness Centre suitable for people with chronic health problems. |
• |
Joke of the day
Submitted by Society member Pam Noble. |
• |
A Plan to Reduce Fibromyalgia Pain
The Mayo Clinic publishes the Mayo Clinic Health Letter, a monthly newsletter that highlights various health topics. |
• |
Biological Link Between Pain And Fatigue Discovered
ScienceDaily reports that “a recent University of Iowa study reveals a biological link between pain and fatigue.” |
• |
Failure to Diagnose Fibromyalgia Costs Taxpayers and Overburdens the Healthcare System
The American Chronicle’s Lourdes Salvador reports on researchers who have calculated the financial burden on sufferers – and society in general – caused by Fibromyalgia. |
• |
From our mates in Wollongong
Wollongong hosts an active ME/CFS society which puts out a regular newsletter. |
• |
Society meeting photos
The Society held its second meeting for the year on Saturday 5 April. The guest speaker was psychologist Liana Taylor. |
• |
Society meeting reminder
The next Society meeting will be held at 1pm on Saturday 5 April 2008 at the Disability Information and Resource Centre, 195 Gilles Street, Adelaide. |
• |
Victorian Society news update
During 2007 ME/CFS Australia (Victoria) was able to call on many of its regular volunteers to run two projects. |
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Live chat Q&A with Dr William Collinge
ProHealth’s ImmuneSupport.com will be hosting a live chat Q&A with Dr William Collinge, PhD, MPH (pictured) on Friday 25 April 2008 from 3 to 4pm Pacific Standard Time in the US. |
• |
May 2008 proclaimed MCS Awareness Month in two US states
May 2008 has been proclaimed Multiple Chemical Sensitivity Awareness Month in two US states, Washington and Florida. |
March |
• |
Mercury fillings banned in Norway
Courtesy of Dr. Georgiou’s Natural Medicine Newsletter!, we’ve had word of the latest news from Norway about their attempts to deal with the potential toxicity of amalgam fillings. |
• |
World ME & FM Prayer and Meditation Day
We’ve had a message from Suzanne Olivante, head of time2link, about an upcoming worldwide day of prayer and meditation. |
• |
Are you a carer? Here’s some new local research
If you’re a carer for someone with ME/CFS, you might be interested in a new report. |
• |
A great site on making schools (and other places) healthier
The US leads us by a long way in taking steps to improve air quality and the general environment in schools for asthmatic and chemically sensitive users. |
• |
Phoenix Rising: Interview with Martha Kilcoyne
The latest offering from Phoenix Rising is an interview with Martha Kilcoyne. |
• |
NYP Chronic Fatigue Syndrome Support Group
The Yorke Peninsula Country Times has reported on the Northern Yorke Peninsula Chronic Fatigue Syndrome Support Group. |
• |
Pediatric Case Definition for ME/CFS
DePaul University’s Center for Community Research is currently conducting a study about the new Pediatric Case Definition for ME/CFS. |
• |
Steroid for Chronic Fatigue Syndrome?
WebMD reports on a doctor who believes in the use of cortisol and hydrocortisol to alleviate the symptoms of ME/CFS and Fibromyalgia. |
• |
Cortisol may alleviate chronic fatigue and fibromyalgia symptoms: study
CBC News reports that “Sufferers of fibromyalgia and chronic fatigue syndrome may see significant relief from their symptoms when administered the stress hormone cortisol, finds a new study.” |
• |
Next Society meeting
The next Society meeting will be held at 1pm on Saturday 5 April 2008 at the Disability Information and Resource Centre, 195 Gilles Street, Adelaide. |
• |
Fibromyalgia ads stir conflict: Is it a disease?
mlive.com’s Ann Arbor Business Review has published a news article about how a TV commercial for a new fibromyalgia medication, Lyrica, has sparked a controversy in the US. |
• |
Medical abstracts from Prof Garth Nicolson, PhD
Prof Garth Nicolson, PhD has supplied us with a few of his recent medical abstracts. |
• |
Pain In Fibromyalgia Is Linked To Changes In Brain Molecule
ScienceDaily reports that “Researchers at the University of Michigan Health System have found a key linkage between pain and a specific brain molecule”. |
• |
ZOO Accessible Adventure Days
Our links with other disability groups have put us on their distribution lists for the occasional special deal. Here’s one for the Adelaide Zoo in April. |
• |
ME Book Project: Lost Voices
A book and accompanying exhibition called Lost Voices is a project by Invest in ME. |
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The International ME/CFS Conference 2008
Invest in ME is presenting The 3rd CPD accredited IiME International ME/CFS Conference 2008, to be held at One Birdcage Walk in London on 23 May 2008. |
• |
Phoenix Rising: January 2008
The latest offering from Phoenix Rising is the January 2008 edition. |
• |
Riverland ME/CFS Support Group meeting
The Riverland ME/CFS Support Group’s next meeting will be held on Friday 28 March 2008 at the Riverland Resource Centre, Berri. |
• |
Lactic acid study – participants wanted
Dr Ian Buttfield some time ago approached us to see if we would encourage members to volunteer for a research project focusing on lactic acid. |
• |
Colorado Governor Declares May 2008 as MCS and Toxic Injury Awareness Month
The American Chronicle reports that Colorado Governor, Bill Ritter, has proclaimed May 2008 to be Multiple Chemical Sensitivity and Toxic Injury Awareness Month. |
• |
Smoke-free venues: is our State Government serious?
Sandra Kanck MLC continues to lobby for a better deal for the chemically sensitive. |
February |
• |
Sandra Kanck asks MPs questions regarding MCS
Sandra Kanck, Member of the Legislative Council and member of the South Australian Democrats, has written to two MPs on behalf of multiple chemical sufferers in South Australia. |
• |
Victorian Society news update:
Victorian AGM results – new committee
ME/CFS Australia (Victoria) held its Annual General Meeting on Sunday 24 February. |
• |
ONE CLICK Judicial Review: Campaign Update 4
ME agenda reports on the latest news regarding the ONE CLICK Judicial Review. |
• |
Live chat Q&A with Cort Johnson
ProHealth’s ImmuneSupport.com will be hosting a live chat Q&A with Cort Johnson on Friday 7 March 2008 from 3 to 4pm Pacific Standard Time in the US. |
• |
Canadian ME/CFS case taken to Supreme Court
The Regina Leader-Post reports on a case that has ended up in the Supreme Court of Canada. |
• |
LDDI Scientific Consensus Statement
The Learning and Developmental Disabilities Initiative, which is a part of the Institute for Children’s Environmental Health, has published its LDDI Scientific Consensus Statement. |
• |
Speaking up on health policy
The peak body The Health Consumers Alliance of SA Inc – the Society is a member – is holding a forum on health policy on Thursday 28 February 2008. |
• |
New YouTube recommendation
This YouTube video was recommended by Vicki Ryan. |
• |
High Beam Global meets the Fringe
We’ve had a message from Arts Access SA. |
• |
FibroMen Support Group
Although Fibromyalgia is a disease affected predominantly by women at a ratio of anywhere between 7:1, 9:1, and 20:1 (depending on your source), men do suffer from it. |
• |
Invest in ME Conference 2008
Invest in ME is a UK charity whose aim is to educate and raise awareness of Myalgic Encephalomyelitis (ME/CFS) and promote the acceptance of the need for a comprehensive, national strategy of biomedical research into ME/CFS. |
• |
CFS: Poor heart function could be to blame
What Doctors Don’t Tell You reports that “Chronic fatigue syndrome (CFS) may be linked to reduced heart activity – but researchers aren’t sure if heart function causes CFS, or if it’s the other way round.” |
• |
Local author to be interviewed on life fm 107.9
South Australian author and ME/CFS sufferer, Andrea Rowland, has written a book entitled Just For a Season: My journey with severe Chronic Fatigue Syndrome. |
• |
More YouTube recommendations
In what is possibly a YouTube recommendation frenzy this week, here are a few more we think you might find interesting. |
• |
New YouTube recommendations
We have two new YouTube videos for your delectation. |
• |
Victorian Society news update:
Notice of Victorian Annual General Meeting
ME/CFS Australia (Victoria) is holding its Annual General Meeting on Sunday 24 February. |
• |
Victorian Society news update:
2008 RACGP Research Foundation Grants
The Royal Australian College of General Practitioners has sent information about their Research Foundation to ME/CFS Australia (Victoria). |
• |
The president speaks
The Society’s president, Peter Cahalan, is interviewed from time to time on 1197am RPH Adelaide. |
• |
YouTube
YouTube is now enormously popular as a place for people to both post and view video clips on the Internet. |
• |
Getting access to more allied health care
The Enhanced Primary Care Program enables your GP to write a health plan for you which gives you rebated access to up to five treatments by a physiotherapist, dietitian or other registered allied health practitioner a year. |
• |
Transcript of live chat Q&A with Dr Charles Lapp, MD
ProHealth’s ImmuneSupport.com hosted a live chat Q&A with Dr Charles Lapp, MD on Friday 1 February in the US. |
• |
Health in All Policies
The State government is shaping its health agenda around the idea of health in all policies – a growingly popular concept internationally. |
• |
MedWatch: antiepileptic drugs
MedWatch is a website that details the safety of prescription drugs in the US. |
• |
National Welfare Rights Network
The National Welfare Rights Network provides free and independent information, advice and representation about Social Security law and its administration. |
• |
9th International IACFS/ME Conference
The 9th International IACFS/ME Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses will be held in the US from March 12-15, 2009. |
• |
Accessing the Medicare Psychology Rebate
The Federal government introduced new Medicare items in November 2006 for services by registered psychologists. |
• |
Society meeting photos
The Society held its first meeting for the year on Saturday 2 February. The guest speaker was physiotherapist Julie Peacock. |
• |
Society meeting reminder
A reminder that our first meeting for 2008 will be held today at 1pm at the St Peters Holy Name Church, 80 Payneham Rd, Stepney. |
• |
Campaign for a Fair Name
Campaign for a Fair Name has launched a new website. |
January |
• |
Live chat Q&A with Dr Charles Lapp, MD
ProHealth’s ImmuneSupport.com will be hosting a live chat Q&A with Dr Charles Lapp, MD on Friday 1 February 2008 from 3 to 4pm Pacific Standard Time in the US. |
• |
Transcript of live chat Q&A with Nancy G Klimas, MD
ProHealth’s ImmuneSupport.com hosted a live chat Q&A with Nancy G Klimas, MD on Friday 11 January in the US. |
• |
ME/CFS long-term study
Danish researchers have studied a group of ME/CFS patients over a nine-year period and have published the results in the Journal of Chronic Fatigue Syndrome. |
• |
Having your say on the UN Convention
The Australian government is canvassing the community on the UN Convention on the Rights of Persons with Disabilities. |
• |
Medical abstract
A member has alerted us to an abstract that, to us, is an example of how not to write a medical article. |
• |
New website: Drug3k
Drug3k is an online drug encyclopedia that provides information on prescription drugs. |
• |
Phoenix Rising: End of year ‘Story Edition’
The latest offering from Phoenix Rising is a special edition entitled The Story Edition. |
• |
Society meetings: there’ll be an admission charge
Our first meeting for 2008 comes up on 2 February. We want to advise everyone that we’ve decided to charge for our meetings. |
• |
Green Chemistry: California keeps leading the way
The campaigners for a better deal for people with chemical sensitivities in Australia keep looking enviously to California. |
• |
5 things you didn’t know about Chronic Fatigue Syndrome
A short article about Chronic Fatigue Syndrome has appeared on Seacoastonline.com. |
• |
Next Society meeting
The next Society meeting will be held at 1pm on Saturday 2 February at the St Peters Holy Name Church, 80 Payneham Rd, Stepney. |
• |
Society Constitution now online
The Society’s Constitution is now available online. |
• |
ABC News OnCall+ Pain Management
ABC News has an informative health section on its website entitled OnCall+ Pain Management. |
• |
More on the Fibromyalgia debate
Three days ago we reported on an article published in The New York Times about a debate currently going on in the US about Fibromyalgia which appears to stem from the approval of Lyrica, a drug used for the disease. |
• |
New research: Cortisol levels and fatigue
A new study has found a direct correlation between the morning levels of cortisol in people with CFS and the severity of their fatigue. |
• |
CBS3 news article and video on CFS
CBS3 has a news item and an accompanying video on Chronic Fatigue Syndrome on its website. |
• |
New York Times article on drug approved for Fibromyalgia
The New York Times has published an article on a potential controversy involving a new drug, Lyrica, which was recently approved in the US for dealing with Fibromyalgia pain. |
• |
Arts and disability news
Arts Access SA has the job of driving arts and disability programs, and its latest newsletter has some interesting material in it. |
• |
Perceived pain and weather changes in rheumatic patients
The following article may be of interest to people with ME/CFS who experience varying levels of fatigue depending on the weather. |
• |
Mayo Clinic: Fibromyalgia Tips video
The Mayo Clinic has a short video on managing Fibromyalgia. |
• |
Advertising campaign – the print version
In addition to its website, ninemsn’s advertising campaign for The Fix using the phrase “Celebrity Worship Syndrome” (“CWS”) has also been presented in print. |
• |
Recommendations for persons with CFS (or Fibromyalgia) who are anticipating surgery
ME/CFS specialist, Dr Charles W Lapp, has written an article outlining suggestions and recommendations for anyone with ME/CFS or Fibromyalgia and about to have surgery. |
Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
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(phone)