Ground-breaking research at Griffith University into Chronic Fatigue Syndrome (CFS) is leading the way for the development of a new screening tool for the condition.
The research team from the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Menzies Health Institute Queensland, has identified new markers that can be used to screen patients and is now looking to partner with diagnostic companies to bring a test to market. The screening test is expected to benefit all those with symptoms of the condition.
“Over the last four years, with support from the Queensland Government and philanthropic donors, we have identified unique markers in CFS patients,” says Professor Marshall-Gradisnik.
“This screening test may be expected to become a laboratory standard to provide more certain, and cost-efficient, diagnosis for CFS. Currently patients may be undergoing a range of tests to diagnose for CFS which incurs a significant cost to the health care system.
“CFS, also known as myalgic encephalomyelitis (ME), affects up to 400,000 Australians, many of whom are housebound or bedbound. Patients are isolated and further stigmatised by disbelief of their condition.
“This illness has traditionally been difficult to diagnose, meaning that people can go for months without getting the care and attention they require. We are confident that the new screening test currently in development will provide efficient and increasingly accurate screening for people with CFS. This test may also be used to monitor and track the progression of their illness,” says Professor Staines.
Developing this screening test and engaging potential diagnostic companies reflects the innovative research being undertaken to deliver better health outcomes for CFS patients in Australia.
Awareness and support of CFS is currently gathering momentum in Australia, with a recent Senate Estimate Committee highlighting the requirement for increased research and funding regarding the condition. https://www.facebook.com/SenatorLudlam/videos/vb.17351204469/10153980238139470/?type=2&theater
Good news for some people who have MCS/ES, CFS/ME, and FM
RESCUE PLAN FOR PEOPLE WITH CENTRAL SENSITIVITY SYNDROMES:
THE CITY OF TARRAGONA (CATALONIA, SPAIN) IS THE FIRST MUNICIPAL GOVERNMENT THAT IMPLEMENTS IT!
The first municipal government that has stepped forward to implement this plan, is the City of Tarragona Municipal Government (Tarragona is a major city 100 kilometres south of Barcelona). In the plenary session held last November 30th, the “Institutional Declaration of support for people with Central Sensitivity Syndromes” was approved, which consists of a concrete programme of measures. This is a historical step.
In part, the agreement includes:
FIRST. Create and develop a specific support programme for people with CSS and their families in the City of Tarragona, in which the representatives of those affected have to be involved and which will include:
Carry out (with a yearly update) a diagnosis and census of those affected by CSS in the City of Tarragona, showing what is the actual situation and the specific needs of these patients and their families.
An intervention protocol for the staff of the Area of Services to Citizens of the Tarragona City Government to look after those with CSS- including a list of economic subsidies for food, first necessity elements, reduced water bill, and home help specific to the needs of these patients.
Housing protocol for people with CSS, especially those who have MCS and/or EHS, those threatened by eviction or those who are forced to leave their home. This protocol has to include a series of safe social housing (green/white spaces: free of xenobiotics and electromagnetic waves).
Create green/white spaces in all municipal buildings (free of xenobiotics and electromagnetic waves).
Eliminate, as much as possible, the use of pesticides in the whole of the municipality. In the case when this is not possible, establish a communication protocol to contact those affected and the press regarding the places and dates of the interventions with preventive advice.
Training for social workers and educators about CSS, its social, health and economic reality. Elaboration of information and education to increase the knowledge about these illnesses amongst the general population and of the city workers in particular, with the objective of diminishing the stigma that is now present regarding these illnesses.
Protocol for adapting working conditions of the municipal workers who have CSS with specific measures of support when having a flare up. These would be the measures: work schedule flexibility, encourage work from home through internet (teleworking), reserved parking spaces and include in the collective agreement not deduct the salary of the first 20 days of sick leave.
Diana Crumpler, whose first book, Chemical Crisis, received widespread critical acclaim, wrote Prostituting Science – The Psychologisation of MCS, CFS and EHS for Political Gain in memory of a friend and fellow sufferer of Multiple Chemical Sensitivity (MCS) and Chronic Fatigue Syndrome (CFS). They shared “a wonderful 25 year long, hands-across-the-ocean friendship.” Pam lived in Ontario; Diana lives in Australia where she worked as a teacher and librarian until she retired in 1984 due to ill health.
Taking up from where Rachel Carson’s Silent Spring left off, Prostituting Science delves into the subject of non-communicable diseases plaguing society today. Based on the understanding that illnesses like ADHD, autism, Alzheimer’s, Parkinson’s, depression, schizophrenia, MCS, EHS (electromagnetic hyper-sensitivity), and CFS are more than just diseases of our civilization, Crumpler asserts they are by-products of our reliance on chemo- and electro-wizardry, and she presents credible, authoritative evidence to support her claim.
In the introduction, Crumpler writes, “Welcome to the world of alien refugees: the world of the chemically and electrically hypersensitive, aliens within their own civilization, refugees from the realm of twenty-first century chemo- and techno-wizardry. For such people, ‘going green’ is not an ideological or a philosophical choice; rather, it is their only feasible modus vivendi, their only way to wellness, and for some, the only means of survival. It is a world that I, myself, know all too well, having inhabited that hell-hole for the best part of my life.”
In addition to an impressive collection of scientific data, the author shares the story of her own family’s descent into the disabling illness of MCS, CFS, and EHS – all of which were a consequence of exposure to heavy pesticides. Skeptics may be dismayed to learn that these pages contain all the evidence needed to convince even the most hardened among them that all of the above-mentioned diseases are bona fide physiological disorders.
But Crumpler does not stop there. She includes an extensive Glossary, References, Index list, and effective treatment protocols for recovery. She also documents gross abuse of civil and human rights – including the author’s abduction and committal under an involuntary psychiatric treatment order on the grounds that “MCS and EHS do not exist” and that “to believe in their physicality constitutes a delusion and, hence, a manifestation of psychosis.”
Prostituting Science details one family’s battle with MCS, CFS, and EHS. The book also explores the mechanisms behind these diseases and their allied disorders and explains the paradox whereby the more that is known of a cause of any of these three illnesses, the more vehement and widely accepted have become allegations of what is called psychogenesis (the origin of symptoms seen as a result of emotional [versus physiological] causes). Crumpler refutes these allegations and takes the risk of publicly declaring her belief instead in the physicality of MCS and EHS. She writes, “Only by speaking out, by making MCS, CFS, and EHS issues of public concern can we create the climate of awareness necessary to prevent being done to others (possibly with fatal results) what was done to me. To allow oneself to be cowed into silence is to betray the memory of the many friends already dead from these, the most physical of illnesses.”
Writer Pelda B. Hyman called Prostituting Science “A monumental and perhaps the most inclusive work ever on MCS and EHS.” But I think the last word should go to the author, whose dedication includes this tribute: “To Owen, Belle, Jordan, Fraser, April, Emily, and Sebastian, our hopes for the future, in the hope that hard-won awareness will allow your futures to be all that we had once planned our own to be. And in memory of my father, Francis Denis Connellan (1904 – 1979), field naturalist and campaigner for environmental awareness in the days before that term had become a buzz word.”