Community news (research, advocacy, anything 'newsworthy')

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  ME/CFS Awareness Week 2021 WRAP UP
  • Sarah_Em_Aus  

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  Telehealth extended until end 2021
  • melco  

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  @crashdummy thanks for your excellent comments. This was not the recent news about Medicare, it is old news that I have just found out about. I'm not aware of the media covering it
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  Australian You+ME Registry Opens
  • Sarah_Em_Aus  

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  @iris this is in the You+ME app where there is a predefined list of symptoms you can select from and you rate each symptom from 0-4 every day (or on whatever schedule you choose) so I don't think that's an option. You can add your own symptoms, but I'm trying to avoid doing that as much as possible to keep the data clean.
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  Research in Queensland
  • iris  

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  GP education module
  • iris  

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  @iris Fantastic. I will be doing the same.
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  ME/CFS Awareness Week 2021
  • Sarah_Em_Aus  

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  @Sarah_Em_Aus Happy awareness day!
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  Tell your #MillionsMissing story
  • Sarah_Em_Aus  

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  Current affair
  • iris  

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  yes, I know what you mean!
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  ME/CFS International Conference 2021
  • Looch  

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  @iris I did read somewhere that they were working on it but can’t find where I read that now
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  Daniel Missailidis is Young Achiever finalist. Vote daily until April 12 to support him!
  • Simone_Em_Aus  

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  That’s fabulous news!!
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  Evidence for PEM being unique to ME/CFS
  • river  

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  @river Thank you for posting this article, I will definitely have a read later today.
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  #MEaction has found a new Executive Director
  • Sarah_Em_Aus  

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  Ron Davis' family was featured in People!
  • Sarah_Em_Aus  

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  @Sarah_Em_Aus To have scientists like Rob advocating for people with ME/CFS is so valuable!
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  Recently published ME/CFS research
  • Jess_Em_Aus  

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  @Simone_Em_Aus The other problem Warren has is logistics. These samples have to be sourced close to the lab within a certain time frame. That's a problem for much research and I think a key to this is collaboration internationally using the same methods with a well-characterized cohort. But yes - funding is everything.
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  Research Interview: Professor Ken Walder
  • Simone_Em_Aus  

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  COVID research with relevance to CFS
  • river  

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  International Women's Day
  • EmergeAustralia  

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  CDC resources for ME/CFS
  • river  

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  That's a great link @river - and it's very welcome to see the CDC coming around - as you well say, it's hugely influential, and hopefully a sign that the writing is no the wall for the (well-dunked) psychosocial approach to treating ME/CFS. Agree they're not all the way there yet, but it's a great start.
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  Australian ME/CFS researcher is semi-finalist in Vic Young Achiever Awards!
  • Simone_Em_Aus  

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  Yayyy how exciting! I haven't had an opportunity to meet Daniel yet but, let's just say I'm involved in some way with what his team is doing and it's really cool.
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  The first Emerge Australia online support groups (ever!) start tomorrow!
  • EmergeAustralia  

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  I just completed my first Rural Folk connection group and enjoyed the chat. Thanks, Rebecca, Lizzie and Lisa.