• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. simeyss

    Australian Telehealth MP Campaign

    Thanks for posting this here, @MeSci. The letter writing campaign will end on Friday August 9.
  2. simeyss

    Petition to help Australians with ME/CFS to access disability services

    The National Disability Insurance Scheme (NDIS) was established in Australia a couple of years ago to improve the access and quality of lives of Australians with disabilities. Unsurprisingly, Aussies with ME/CFS are routinely being denied access to the NDIS. Emerge Australia has launched a new...
  3. simeyss

    Australia’s NHMRC ME/CFS Advisory Committee releases draft report for public consultation

    Australia’s National Health and Medical Research Council (NHMRC) established an ME/CFS Advisory Committee in late 2017. The terms of reference for the committee were to report to the CEO about: the status of national and international research into ME/CFS gaps in research on ME/CFS. This will...
  4. simeyss

    ME/CFS Discovery Research Network (MDRN) - Australian collaborative network

    It is exciting! I’ll post an update after the workshop on Saturday. The group are keen to find ways to keep the community updated over time too.
  5. simeyss

    ME/CFS Discovery Research Network (MDRN) - Australian collaborative network

    Some news from the recently formed ME/CFS Discovery Research Network (MDRN), a group of Australian researchers collaborating on ME/CFS, about their upcoming research workshop. This group includes some members of Melbourne Bioanalytics: Chris Armstrong, Neil McGregor and Don Lewis. Research...
  6. simeyss

    Emerge Australia Health and Welfare Survey results

    Emerge Australia conducted a health and welfare survey of 600 Australians with ME/CFS, and has released a 77 page report of the findings. The survey covers a range of topics, including time to diagnosis, key symptoms experienced, treatments which were useful. Link to report...
  7. simeyss

    David Tuller tours Down Under!

    Details of public events in Perth. “The PACE Trial on Trial” Sunday April 15, 11am This is a free event. Bookings are essential For more details and to book: https://www.trybooking.com/book/event?eid=370824& There will be a lecture on the same topic at 3pm, with a target audience of health...
  8. simeyss

    David Tuller tours Down Under!

    Details of the Gold Coast public event: “Quality and safety for people with ME/CFS: Rethinking exercise guidelines.” Mon Apr 23, 11:00 am – 12:30 pm (AEST) Conference room Robina Community Centre 196 Robina Town Centre Drive Robina Learn why we need to think differently about exercise for...
  9. simeyss

    David Tuller tours Down Under!

    Details of Adelaide public event: “David Tuller is coming to Adelaide! Don't miss this unique opportunity to hear David talk on PACE followed by a 'meet and greet'. Tuesday 10th April at SACOSS, 47 King William Road, Unley, in the Marjorie Black Community Room. Time: 7:15 for a 7:30 pm start...
  10. simeyss

    David Tuller tours Down Under!

    It’s now possible to book tickets for the Brisbane event: *** Free public event in Brisbane *** “ME/CFS: What’s all the fuss about?” Friday April 20, 2pm-4pm. This event is hosted by ME/CFS Australia Ltd & ME/CFS/FM Support Assoc of Qld Inc Speakers: Dr David Tuller (journalist and academic)...
  11. simeyss

    David Tuller tours Down Under!

    *** Free public lecture: University of Tasmania, College of Health and Medicine *** “Chronic Fatigue Syndrome (aka ME) – Challenging the accepted dogma through research journalism” Speaker: US journalist and academic, David Tuller Date: Wednesday 4 April, 2018 (note the link below has Tues...
  12. simeyss

    Video: Q&A following Unrest screening in Melbourne, Sun Mar 18

    Here is the video of the Q&A which followed the screening of Unrest in Melbourne on Sunday March 18. The panel members were: Patient advocate: Anna Kerr Melbourne Bioanalytics researchers: Chris Armstrong and Neil McGregor Academic & journalist: David Tuller PhD student: Fane Mensah Thanks to...
  13. simeyss

    David Tuller tours Down Under!

    Thank you! Yes, my mistake. It is definitely Sunday March 25. I’ve fixed the post now.
  14. simeyss

    David Tuller tours Down Under!

    Details of Sydney public event: Sunday March 25: 1pm-3pm Thai Pothong Restaurant function room 294 King St Newtown http://www.thaipothong.com.au/newtown This is a free event (plus optional lunch, with gluten and dairy free options). The venue is wheelchair accessible, and close to public...
  15. simeyss

    David Tuller tours Down Under!

    Details of David Tuller events in Queensland: There are two confirmed events, and a possible third. **************************** Friday April 20, 2pm-4pm. This event is hosted by ME/CFS Australia Ltd. Speakers: Dr David Tuller (journalist and academic) Dr John L Whiting (Infectious Disease...
  16. simeyss

    David Tuller tours Down Under!

    Some updates on David Tuller’s Australian trip: Emerge Australia will be live streaming a Q&A event on Facebook, which will take place on Friday March 16, at 2.30pm Melbourne time. You can access the livestream from their Facebook page: https://www.facebook.com/EmergeAustraliaInc/ They are...
  17. simeyss

    David Tuller tours Down Under!

    Dates and locations for David Tuller’s Australia tour (subject to change): Edit: the dates below have been changed. These are the current dates. Melbourne: Mar 16-20 Canberra: Mar 21-23 Sydney: Mar 24-Apr 1 Hobart: Apr 2-4 Adelaide: Apr 5-11 Perth: Apr 12-17 Brisbane/Gold Coast: Apr 18-22...
  18. simeyss

    PEM and GET in ME 2017 by S. Eyssens

    The primer is now available via this link, on Emerge Australia’s website: https://emerge.org.au/wp-content/uploads/2018/02/PEM-GET-Primer-December-2017.pdf
  19. simeyss

    David Tuller tours Down Under!

    David Tuller will be touring Australia as part of his 12 month crowdfunded work for ME/CFS in mid-March. Event details are yet to be finalised, but he will be in Australia for 4-6 weeks. I will post updates of events to this thread as they are available.
  20. simeyss

    CDC: Resources for Health Professionals

    CDC updated its "Information for Health Professionals" page in its ME/CFS section on Dec 15. The page now offers links to the following documents: - IOM report (& the supplemental documents) - IACFSME Primer - 2016 Canadian guideline (draws heavily on both the IOM report and IACFSME Primer) -...
  21. simeyss

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Chris Armstrong's group uses CCC.
  22. simeyss

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    That must feel SOOOOOO good to see! Finally, eh? :)
  23. simeyss

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Yes, the Melbourne Bioanalytics team has been running on a shoestring, as far as grant money is concerned. They've done some amazing work, and have some good studies in the pipeline too. Thank you for supporting them!
  24. simeyss

    IMPORTANT - ME/CFS contact at Australian National Health & Medical Resarch Council $5M grants

    FYI, a couple of months ago (after the most recent Senate Estimates at which Professor Kelso indicated that the Targeted Call for Research (TCR), if funded, would be $3m-5m over $3-5 years), advocates organised a joint letter to be sent to NHMRC from several of our ME/CFS organisations: ME/CFS...
  25. simeyss

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Chris Armstrong's slides: https://www.melbournebioanalytics.org/me-metabolism-and-i-by-chris-armstrong-august-2017/
  26. simeyss

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Neil McGregor's slides: https://www.melbournebioanalytics.org/symptommetabolome-directed-genomics-for-mecfs-by-neil-mcgregor-august-2017/
  27. simeyss

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    And they also say this (which would essentially rule out exercise for many young people for whom it would be prescribed): "The training heart rate will aim to rise between 50% and 70% of their maximum heart rate. Using a heart rate monitor can avoid over exercising which can lead to an...
  28. simeyss

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    "Children and families are reminded that it is normal to feel tired at times, just not consistently so and not to the extent of significantly limiting functioning." Yes, exactly. And it is a sign of illness, not faulty thinking. The cruelty of the suggestion that feeling so ill all the time...
  29. simeyss

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    #IiMEC12
  30. simeyss

    Northern Ireland--Message to all GPs re: physiological nature of ME

    Wow! How exciting! Congratulations! Huge win and terrific news!