Far North Coast M.E. / C.F.S. Association Inc | Non-profit organisation

Far North Coast M.E. / C.F.S. Association Inc

Phone: +61 414 014 365

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25.01.2022 If you have been ripped off on TPD or income protection insurance, or on credit card or other insurance, now it the time to get your submission in. Turnbull has indicated the potential for compensation. Some class actions have begun. CEOs are starting to resign. The full extent of their bad behaviour is yet to come. We all know they wont pay for ME/CFS or CFS except after a fight ... so lets highlight this fact.... https://www.facebook.com/MECFSLegalResources/posts/809069915959810

24.01.2022 URGENT CALL FOR LOCAL RESEARCH PARTICIPANTS FOR NCNED STUDY - FNC NSW and NE QLD ONLY The NCNED are URGENTLY after patients aged between 18-60 years old, non smoking, formally diagnosed with ME/CFS and * not taking any supplements (e.g. calcium, magnesium or zinc) OR ... * willing to cease the supplements for 2-3 weeks, to participate in an upcoming investigation to continue NCNED world class research in the area of calcium receptors, signalling and on pharmaceutical intervention. Volume of blood is 85ml and will do home collection by a qualified blood collector. NCNED will travel to North Coast of NSW, for example, Lismore, Casino, Ballina, Mullumbimby. A representative of the can TRAVEL TO YOU collect samples - so you are not required to travel. Contact: Helene Cabanas, PhD Post Doctoral Research Fellow National Centre for Neuroimmunology and Emerging Diseases [email protected] +61 405345267 Griffith University Menzies Health Institute Queensland Building G40 Level 9 Gold Coast, QLD, 4222

24.01.2022 NHMRC ME/CFS FINAL REPORT ME/CFS Australia is pleased to announce that the long waited ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer has... been published. ME/CFS Australia would like to thank the members of the Committee, which included researchers, academics, clinicians and two representatives of the ME/CFS community: Simone Eyssens representing Emerge and supported by Sally Missing; and Penelope McMillan of ME/CFS Australia and ME/CFS South Australia. We particularly note that two recommendations have already been funded. The recommendation for health economic analyses is underway, with applications for a study received, reviewed and awaiting an announcement from the Medical Research Future Fund; and $3million was promised by Health Minister, Greg Hunt, prior to the election. https://www.nhmrc.gov.au//mecfs-advisory-committee-report-

23.01.2022 NCNED are currently looking for participants to donate blood in South East Queensland in the next couple of weeks. Eligibility:18-60, people with ME/CFS and healthy people, not taking regular medications and also not taking Magnesium or Calcium supplements. Please contact [email protected] or (07) 5678 9283 for more information.

23.01.2022 An open letter from the Workwell Foundation in GET: http://www.workwellfoundation.org//MECFS-GET-Letter-to-Hea Thank you Michael Robinson

23.01.2022 Hi all I have David Tuller in Lismore late next month. Would you like me to make a time for a patient talk in Lismore or within the FNC region (eg Byron, Mullumbimby)? Please let me know the interest and I will do my best

23.01.2022 Myalgic Encephalomyelitis: It's not just fatigue. Comprehensive list of symptoms at http://www.hfme.org. This design is available on t-shirts, a bag, and a pos...ter at https://www.zazzle.com//myalgic_encephalomyelitis_me_sympt. #myalgicencephalomyelitis #myalgice #mecfs #mecfswarrior #pwme #millionsmissing #timeforunrest #meawareness #cfsme #cfs #chronicfatiguesyndrome #seid #autoimmunedisease #fibromyalgia #fibro #fibrowarrior #orthostaticintolerance #posturalorthostatictachycardiasyndrome #pots #potsie #dysautonomia #spoonie #spoonielife #invisibleillness #chronicillness #chronicillnesswarrior #chronicillnessblog

22.01.2022 We are recruiting for current and upcoming CFS/ME studies we require both healthy volunteers as well as CFS/ME sufferers aged between 18-60 years old living i...n QLD. If you are interested in participating, could you please email [email protected] or call (07) 56789283 for further information. https://prodsurvey.rcs.griffith.edu.au/pr/index.php/275725

21.01.2022 ME/CFS Research - UNI SA FNC ME/CFS Asooc invite you to participate in this research by Lucy Shannon, 4th Year Clinical Exercise Physiology student. The project research question is: "What are the perceptions of health professionals and people suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) of physical activity in maintaining and improving quality of life for those with the condition?"... In essence you get to express the issues that you experienced and voice your views on physical activity. The University of South Australia invites people living with ME/CFS and practitioners treating people with ME/CFS to participate in an online survey. The study aims to identify the perceptions of people living with ME/CFS and health practitioners regarding the risks and benefits of physical activity and exercise for those with the condition, as well as trusted information sources. The results will provide valuable information regarding the perceptions surrounding physical activity and exercise in the ME/CFS community, aiding in future research and education campaigns. This project has been approved by the University of South Australias Human Research Ethics Committee and is coordinated by Dr Kade Davison, Dr Katia Ferrar and Dr Max Nelson. Your participation is voluntary and greatly appreciated. Please click the link below to access the survey and further information ME/CFS Survey: https://www.surveymonkey.com/r/RT2PGQG

20.01.2022 Apply for Energy Accounts Payment Assistance (EAPA) vouchers If you're having difficulty paying your household energy bill because of a short-term financial crisis or emergency, such as unexpected medical bills, or reduced income due to COVID-19, you could be eligible for Energy Accounts Payment Assistance (EAPA) $50 vouchers. https://www.service.nsw.gov.au//energy-accounts-payment-as

20.01.2022 A community call out for young ME/CFS sufferers to share their story.

20.01.2022 Welcome to Zeva Brennan - member number 100.

17.01.2022 Hi all ... with Caronavirus on the rise, ME/CFS Australia have issues a patient advisory to assist people to prepare and minimise risks. https://www.facebook.com/1628039257514980/posts/2522502051402025/

17.01.2022 Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day. In Australia there are an estimated 240,000 people with ME/CFS. We are part ...of the estimated 17 million worldwide who are missing from their lives due to this illness. ME/CFS is a serious, debilitating, and chronic disease which affects many systems in the body, including the nervous, immune, cardiac, gastrointestinal and endocrine systems. It affects people of all ages and backgrounds, and can be as debilitating as Multiple Sclerosis, heart disease or kidney failure. In its mild form, the individual may only be able to undertake half the activity level that they could prior to becoming sick. In its severe form, the individual may be bedridden, and need care for basic activities like hygiene and eating. The core feature of ME/CFS is post-exertional malaise (PEM) which is when all symptoms become worse following exertion. That exertion could be going for a walk, or it could be brushing your teeth or lifting your head off a pillow. PEM can last days, weeks or even months or years. The most important management strategy for ME/CFS is pacing, which involves keeping activity within the energy available so as to minimise PEM. ME/CFS is an invisible illness, because the individual can look well and the effects of the illness (PEM) are only visible when they go home, or because the individual is bedbound or housebound and isnt really seen by anyone except close family. ME/CFS is also an invisible illness because it has been ignored by research funding bodies, and ignored and misunderstood by the medical profession, for decades. In Australia, the National Health and Medical Research Council (NHMRC), the government department which funds medical research, hasnt invested in any biomedical research into ME/CFS in more than a decade. And when people with the illness seek medical treatment, they are often either disbelieved (told the problem is in their head) or told to undertake graded exercise therapy (GET), a treatment which more often than not causes them harm, because it triggers PEM. We are the #MillionsMissing. Today, we are coming together to be seen. Can You See ME?

17.01.2022 We are so excited to announce the Chronic Fatigue Syndrome Research Center at Stanford University's Second Annual Community Symposium on the Molecular Basis of ...ME/CFS, sponsored by Open Medicine Foundation. Please save the date of Saturday, September 29, 2018 so you can hear from our amazing team either in person at Stanford University or via livestream. It will be a unique and unprecedented opportunity to learn from and interact with these world-class scientists. We look forward to having you join us!

16.01.2022 https://www.facebook.com/1628039257514980/posts/2527704470881783/

15.01.2022 Is there anyone local that uses Low Dose Naltrexone? If so, what sort of levels? How do you find it?

15.01.2022 Australian Myalgic Encephalomyelitis Resource Compendium Simon Del Favero recently assembled a document which is designed to help Australians living with ME/CFS learn more about the condition, access support, & keep up to date with research & advocacy efforts. Topics covered in the document include advocacy, apps, blogs, campaigns, documentaries, documents, Facebook, forums, Instagram, references, research, support, Twitter, & YouTube.... https://lookaside.fbsbx.com//Australian%20ME%20Resource%20

14.01.2022 NCNED RESEARCH REGISTRY NOW OPEN - The NCNED is inviting patients formally diagnosed with ME/CFS, fibromyalgia and healthy volunteers (aged between 18 to 65 years old) to participate in continuing research in the areas of quality of life, calcium receptors, calcium signalling and pharmaceutical intervention. Participants will be asked to complete a series of online questionnaires regarding medical history and disability severity. If interested, a number of parti...cipants will be asked to donate up to 85ml of blood. At the present time we are seeking participants that are based in QLD or are located within the border bubble. Participants are free to withdraw at any time. For your time, participants will receive a $5 Coles voucher and enter the draw to win a $50, $75 or $100 Coles voucher drawn half-yearly. If you are interested in participating, could you please email [email protected] or call (07) 56789283 for further information. https://prodsurvey.rcs.griffith.edu.au/pr/index.php/275725

14.01.2022 https://edition.cnn.com//stanford-geneticist-c/index.html

14.01.2022 There are 3 days to go until the CFS/ME International Conference begins. We look forward to seeing you all there. Kind regards, NCNED Team https://www.griffith.edu.au/griffith-hea//ncned-cfsme-2018

13.01.2022 Recent program on Today/Tonight

13.01.2022 NCNED is currently seeking individuals who have been formally diagnosed with ME/CFS to participate in a research project investigating the Socioeconomic Impact, Quality of Life and Burden of Illness caused by national or individual large-scale life stressors. This survey is open to Australian residents aged 18-60 years old and will involve the completion of two online surveys. One of these questionnaires is NCNEDs online patient registry, if you have completed this recently ...you do not need to complete this again. The second questionnaire is a Health Update Survey which will ask 10 questions every two weeks on physician satisfaction, diagnosis difficulties, quality of life and burden of illness until August 2020. Participants will receive a $5 Coles e-voucher and enter the draw to win $50, $75 and $100 Coles e-vouchers drawn half-yearly. If you are interested in participating, please contact NCNED on (07) 567 89283 or email [email protected] We would like to thank everyone for their support as without your generosity our research would not be possible.

13.01.2022 Metabolic features of chronic fatigue syndrome Robert K. Naviauxa,b,c,d,1, Jane C. Naviauxa,e, Kefeng Lia,b, A. Taylor Brighta,b, William A. Alaynicka,b, Lin Wanga,b, Asha Baxterf, Neil Nathanf,2, Wayne Andersonf, and Eric Gordonf aThe Mitochondrial and Metabolic Disease Center, University of California, San Diego School of Medici... https://lookaside.fbsbx.com//Metabolic%20Features%20of%20C

12.01.2022 RESEARCH STUDY: Top Priorities for Patients with Syndromic Hypermobility (PhD research survey) The University of Sydney are seeking to survey patients and cli...nicians from any country who live or work with hypermobile Ehlers-Danlos Syndrome (hEDS). You may participate in the study if you: PATIENT SURVEY: Have a diagnosed or suspected case of hEDS** Have no new pain from cancer or surgery in last 6 months Are between 18 and 65 years of age http://bit.ly/hEDSpatient (45-70 minutes, you can take a break, and continue another day/time) or CLINICIAN SURVEY: Are a clinician, healthcare practitioner, or allied health professional who works with diagnosed or suspected hEDS patients http://bit.ly/hEDSclinician (10-15 minutes) **Clarification for people without a hEDS diagnosis: People diagnosed with HSD *can* take part in this study. If you are in the process of being assessed for hEDS, if your health is being managed by healthcare professionals as if you have hEDS, or if you have been told that your healthcare professionals suspect that you might have hEDS, then that counts as a "suspected case of hEDS." If you are interested in the study or have any questions, please contact Jade at [email protected]

12.01.2022 Another ME/CFS achieves a win with a decision that recognises the implications of PEM on the inability to engage in repetitive activity. Caine and Secretary, De...partment of Social Services (Social services second review) [2020] AATA 2089 55. Having regard to Ms Caines evidence and Ms Steeles reports, the reasonable conclusion is that the arbitrary but prescriptive activities required for 20 points in Table 1 could at most be repetitively performed over a sustainable period once every three days. Ms Caine has given evidence that she has learnt to carefully manage her activities to balance her physical limitations with the requirement to perform essential tasks such as shopping. There is no evidence to suggest that there is capacity or ability to increase the physical demands she places on herself. 56. Having reached this conclusion, it is not reasonable or accepted by the Tribunal that an activity which consumes 45 minutes but requires three days almost entirely dedicated to the preparation, performance and recovery should be described as being habitual or regular. It is more accurately classed as one which can be performed once or rarely. Having reached this conclusion, it is appropriate to award Ms Caine 20 points under Table 1 of the Impairment Tables. http://www.austlii.edu.au///cases/cth/AATA/2020/2089.html

11.01.2022 URGENT PARTICIPANT REQUIRED FOR LDN STUDY NCNED is currently seeking one more person for their low dose naltrexone (LDN) study on the Gold Coast. You need to have been diagnosed with ME/CFS and currently taking LDN and have been for the last 4-6 weeks on a preferred dosage of between 3- 5mg. ... You need to be aged between 18-65 years, not currently taking any other medications or supplements. You will be required to complete an online questionnaire to assess eligibility. If you live close to the Gold Coast/Brisbane that would be preferred however the NCNED can look at other areas close by as well (eg FNC of NSW). You will need to donate 85ml of blood. A home collection can be provided if you need it. The study will be finishing in the next few weeks. If you are interested in participating, please contact NCNED on (07) 567 89283 or email [email protected]

09.01.2022 ME/CFS Australia have launched their 2019 Chairs Christmas Challenge Fundraiser. Please feel free to share widely and encourage your friends and family to donate. https://www.facebook.com/1628039257514980/posts/2426488051003426?sfns=mo

09.01.2022 / () NCNED would like to hear from ME/CFS patients who are currently taking LD...N. If you are a ME/CFS patient taking LDN and would consider participating in a research program please contact NCNED. For further information please email [email protected] or call (07) 56789283.

03.01.2022 https://youtu.be/mzjKku9fwsE

02.01.2022 Hi all ... the time has come to get ME/CFS FNC ramped up a little. Id like to make this a more interactive Facebook page for people in the FNC region, and if possible, develop this into support groups in the local area. I am Chair of ME/CFS Australia - so Id like to see this group lead from the front. We have close proximity to Southern Cross University and Griffith University. We have people in this area with great activist experience. We have good levels of volunteeris...m. I cant do this alone - so I am looking for motivated people wishing to make a difference (within the confines of their condition). Thoughts? Geoff Hallmann President

02.01.2022 - ! Our Economic Impact Survey will be closing at the end of May 2019.... Understanding the economic impacts of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is important in informing public health decision making and improving illness management. If you would like to contribute to the economic impact research or make sure that your survey is completed and submitted you can access the survey here: https://prodsurvey.rcs.griffith.edu.au//in/register/index The Economic Impact Survey is paired with the NCNED Research Registry Survey - which can be completed or finalised here: https://prodsurvey.rcs.griffith.edu.au/pr/index.php/275725 Thank you to all our supporters and participants - your continued support is critical to NCNED's research and is greatly appreciated.

01.01.2022 Hi all. As you may or may not know, I am chair of ME/CFS Australia - the National Organisation. We are currently doing a fundraising drive and I would be grateful for your assistance in distributing it and supporting. ME/CFS Australia is not government funded. We quietly go about the work of representing patients with ME/CFS through patient focused information, advocacy, support of other organisations, participation in research and working towards policy change. We are... not government funded. Geoff Hallmann Chair