Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia | Other

Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia

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25.01.2022 UPDATE (08/01 2:30pm AEDT) If you are an NDIS participant or provider that has been affected by the bushfires, see the latest information on help available for ...participants who need assistance with their disability supports, and find the current list of NDIA and partner office closures. More information: http://bit.ly/36su3HI [Image description: Image is a graphic with an illustration of the map of Australia on the left and text on the right that reads: Bushfires information and support]

24.01.2022 Paul Glare qill be the keynote speaker for ME/CFS & FM AGM to be held at #RoyalNorthShoreHospital on Friday the 17th January

23.01.2022 A study finds differences in the use of energy by immune cells in ME / CFS NIH-funded research (US National Health Institutes) suggests changes in the immune system in myalgic encephalomyelitis syndrome / chronic fatigue syndrome. The new findings published in the Journal of Clinical Investigation suggest that specific immune #Tcells of people with #myalgicencephalomyelitis / #chronicfatiguesyndrome (#ME / #CFS) show interruptions in the way they produce energy. The research ...was supported by the National Institutes of Health. "This research provides further evidence of the role of the immune system in ME / CFS and can provide important clues to help us understand the mechanisms underlying this devastating disease," said Vicky Whittemore, Ph.D., program director at the National Institute of #NeurologicalDisorders and #Stroke (NINDS) of the NIH, which partially funded the study. See more

23.01.2022 CFS not always visible ...

23.01.2022 A straight talking 7 minute video made by "Broken Battery". Released 5th Feb 2020

22.01.2022 HELPING DOCTORS DIAGNOSE AN INVISIBLE ILLNESS Without a diagnostic test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) it can almost be impossible for people to get the help they need. Dr Brett Lidbury and Dr Alice Richardson from the Research School of Population Health at The Australian National University want to change this. Unfortunately, people with ME/CFS have not only suffered a lack of care from the medical profession, but humiliation as well, say...s Dr Lidbury. He says, it’s not unusual for people to spend years, even decades, looking for an answer to their debilitating symptoms. Sometimes people can’t even make it to a doctor to get help, because their illness is so severe. Using powerful statistical methods, the team at ANU has looked at the results from routine pathology tests. They did find potential biological markers for ME/CFS, and interestingly these are hiding within the ‘normal’ ranges of these tests. Although these results are promising, Dr Lidbury heeds that because the sample size was so small 100 people from the same geographical location more work is required before they can develop diagnostic guidelines for doctors.

22.01.2022 #ME #CFS #Australia's Chair’s #Christmas Challenge IS BACK!!!

22.01.2022 #NellyThomas, comedian and author, is a mother to a young girl with #ChronicFatigueSyndrome and Professor #SonyaMarshallGradisnick, #GriffithUniversity, is researching #ChronicFatigue Syndrome - they both spoke with #KiaHandley https://www.abc.net.au///mornings/chronic-fatigue/11645618

22.01.2022 https://www.health.gov.au//coronavirus-covid-19-advice-for

21.01.2022 'The glacial pace of progress serves as a reminder that we need to pursue a variety of research approaches and to get expeditious regulatory reviews of treatments once they reach clinical trials.' - Henry I. Miller- physician, is a Senior Fellow at the Pacific Research Institute #MyalgicEncephalomyelitis #ChornicFatigueSydnrome #Diagnosis #Treatment https://www.acsh.org//chronic-fatigue-syndrome-progress-to

21.01.2022 https://www.who.int//novel-coronavirus-/situation-reports

20.01.2022 The year 2019 in review from the Open Medicine Foundation, outlining their ME/CFS research and education done in collaboration with three of the world's top medical research centres: Stanford University (California), Harvard affiliated hospitals (Massachusetts), and Uppsala University (Sweden).

20.01.2022 Noticeably an article citing Chronic Fatigue and not #ChronicFatigueSyndrome , however it is sometimes of interest to see an elite athlete succumb to #Invisibleillness "#Stoner previously suffered from #chronicfatigue during his #MotoGP career with the conditions forcing him out of races in 2009." #CaseyStoner

20.01.2022 For those who are interested this is a survery from Chronic Pain Australia on Pain and your experience with health professionals should you wish to provide your input.

17.01.2022 "Breaking through the stigma of Chronic Fatigue Syndrome", from ABC Radio, Newcastle, Australia, last week. 16 minute recorded segment.

17.01.2022 www.facebook.com//photos/a.332007933570301/2722080644563006

15.01.2022 "Medicine can be both wondrously innovative and stubbornly resistant to change" #DavidTuller https://www.statnews.com//proposed-british-guidelines-rej/

15.01.2022 "Once bright and energetic 12-year-old Ethan struggled to get out of bed in the morning. But, as his mum Shelley says, that was just the beginning. At first, doctors prescribed bed rest. They thought it was a virus and they said you can’t really do anything for a virus, he’ll just get over it, they said. But he couldn’t go to school. He'd drag himself out of bed and go, but the next day it was like a truck had hit him, he was so exhausted. That went on for six months. I knew ...something was really wrong. I was very frustrated, and felt as though no one was listening to me. Ethan couldn’t concentrate, and he’d get irritated. ME has severe neurological effects so he basically shut down, he couldn’t string sentences together, he couldn’t find the words to speak. Ethan couldn’t remember things that had happened yesterday, and this is a kid who tested as academically gifted at school." See more

15.01.2022 We’re trying to help people who have this illness have information that could be used to argue for more resources for diagnosis and treatment, https://www.newswise.com//study-finds-many-youth-living-wi

15.01.2022 lMay you be given the true blessings of Christmas, love, joy, peace and hope

15.01.2022 Urgent call for patients aged 18-60 yo! #GriffithUniversity #NCNED

14.01.2022 You are cordially invited to the Annual General Meeting of the ME/CFS & FM Association NSW Inc. Saturday - 22nd February from 1.00pm to 3:00pm It is being held in the Meeting Rooms at West Ryde Library - 2 Graf Ave, West Ryde.... ( 2 hour Free Parking is available in West Ryde Marketplace or in Coles Urban Village). Alternatively it is a short 8 minute walk from West Ryde Train Station .

13.01.2022 [from the ME Association (UK)] The Index of Published ME/CFS Research has been updated to take account of the research published during September 2019. The Index is a convenient way to locate and read the most recent studies and also those that were published previously. It lists studies by subject matter and author, with links to PubMed or the relevant Journal.... It is free to download, comes with an interactive contents table and is an A-Z list of all the most important studies (and selected key documents and articles).

12.01.2022 Today is International Day of People with Disability and there are over 650 events being held nationally to celebrate the day. There are talent and art shows, d...ance parties and sports carnivals all which help create inclusion and accessibility for the 4.4 million people living with disability. See more

12.01.2022 "The catastrophic collapse of Tony Wallace’s life began slowly and silently. --- An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. --- Over time, his ambiguous symptoms have morphed into a condition that defies medical diagnosis, resists treatment and relentlessly, ruthlessly drains the life out of his body." ABC News (Australia), Jan 13th 2020

11.01.2022 News from the #NCNED

10.01.2022 One of the key points in the draft guideline is that exercise is not a treatment or cure for ME/CFS and should not be presumed to be safe for those with this disabling and often neglected illness." https://www.nice.org.uk//nice-draft-guidance-addresses-the

08.01.2022 Might some of us be interested in keeping an orange sky post covid-19? https://orangesky.org.au/covid-19/

08.01.2022 "One of the main characteristics of #ChronicFatigueSyndrome (AKA #ME/ #CFS or #myalgicencephalomyelitis/chronic fatigue syndrome) is non-restorative sleep". https://www.prohealth.com//deep-sleep-improves-me-cfs-symp

07.01.2022 MotoGP legend Casey Stoner talks about his personal encounter with the physically debilitating ME (CFS) and the need for research for a cure. Oct 21, 2020.

07.01.2022 #SSI #Multilingual #Disability Hub can help with settlement services, care, resources and the #NDIS

07.01.2022 The Latest News from the #NCNED

06.01.2022 Myths and Misconceptions of PEM in ME by Dr. Mark Guthridge. Dr. Mark Guthridge is a senior Research Scientist (PhD) for the Australian Centre for Blood Diseases at Monash University in Melbourne, with an interest in ME (CFS), immunology, metabolism, hematology and cytokines. PEM = Post-Exertional Malaise... PENE = Post-Exertional Neuroimmune Exhaustion https://www.facebook.com/notes/millionsmissing-canada/myths-and-misconceptions-of-pem-in-me-by-dr-mark-guthridge/773373676357690/ https://twitter.com/Dr_M_Guthrid/status/1094170151740731393

06.01.2022 "The relationship between physical activity and sleep patterns was particularly pronounced in individuals with greater self-reported pain." https://www.psychiatryadvisor.com//daytime-physical-activ/

05.01.2022 With Tax Time upon us, ME/CFS Australia is reaching out to the ME/CFS Community to promote our tax deductible fund raiser to their family and friends. https://www.facebook.com/MEcfsAU/posts/2614889485496614

05.01.2022 "For a long time, the condition wasn't taken seriously by mainstream medicine. Sufferers were dismissed and told the symptoms were in their head."