• 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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  1. A

    Farewell, until we meet again

    See you soon @trishrhymes :)
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    Another "Oh Well" thread.

    See you soon hopefully @Wonko :)
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    Mrs Sowester's Magic Beans

    Is it me or does this gentleman remind anybody else of someone?
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    Very Sad

    @TiredSam and @trishrhymes I believe, but I'm only just catching up on 12 hours worth of threads and posts, so there may be more.
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    Mrs Sowester's Magic Beans

    Following! Can't wait to see all the big pharma shills casting their scorn on this. If @Mrs Sowester says it works then that's good enough for me, it's bound to work on everyone and there's definitely no need for a pointless series of double-blind randomized trials I say!!1!
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    Solve ME/CFS Discovery Forum 2017

    It was a great forum, the board's recent bizarre decisions has lead to us having no moderators at the moment, unless things turn around then PR is likely to go downhill very rapidly.
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    Solve ME/CFS Discovery Forum 2017

    A few questions answered by @znahle via Facebook video - https://www.facebook.com/SolveMECFSInitiative/videos/10154940527922108/
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    Google health recommends a psychologist and GET to treat CFS/ME

    They don't appear to list it as a psychological disease, as far as I can see. http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490 However, despite their page below being shown as having been updated 5th October, they still recommend CBT & GET...
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    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    I think this is the video? https://www.facebook.com/SimmaronResearch/videos/1691287094236773/
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    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    Coverage from Simmaron. http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/
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    Columbia University's NIH funded Center for Solutions for ME/CFS - news and updates

    Announcement from Columbia. https://www.mailman.columbia.edu/public-health-now/news/nih-awards-96-million-grant-columbia-myalgic-encephalomyelitischronic-fatigue-syndrome-collaborative Announcement from the NIH (covering all 3 research centres and the data centre)...
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I asked the same question on the last petition the MEA ran, from memory the explanation given was that a deadline would encourage people to sign it and ending it would give them an opportunity to present the total to NICE. Neither answer I really understand, as you say, leaving it open would...
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    "Unrest" updates

    Once Dismissed And Hidden, Chronic Fatigue Patients Speak Up - audio interview with Jen https://www.sciencefriday.com/segments/once-dismissed-and-often-hidden-chronic-fatigue-patients-speak-up/
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    Blue Ribbon Foundation: new ME/CFS 5 hour online continuing education course

    http://me-pedia.org/wiki/The_Blue_Ribbon_Foundation http://me-pedia.org/wiki/Forgotten_Plague
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    Blue Ribbon Foundation: new ME/CFS 5 hour online continuing education course

    From their Facebook post, https://www.facebook.com/CFSDocumentary/posts/1646671338697048
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    Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

    https://www.huffingtonpost.com/entry/misdiagnosed-how-children-with-treatable-medical-issues_us_59d6b302e4b0705dc79aa68f
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    Jackson Labs: Helper cells with heightened self-reactivity identified

    https://www.jax.org/news-and-insights/2017/october/helper-cells-with-heightened-self-reactivity# Link to study (open access) - http://www.cell.com/cell-reports/fulltext/S2211-1247(17)31311-6 ETA: Link to paper
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    Cosmopolitan: Millions of Women Suffer From a Disease That Virtually Sucks the Life Out of Them

    For anybody who does Facebook, here is Cosmopolitan's post sharing the article - https://www.facebook.com/Cosmopolitan/posts/10155864110697708 - and even the comments seem reasonable.
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    CDC still looks like it plans to eliminate the $5.4 million annual budget for CFS

    @Dolphin , just an FYI, assuming you are using Adobe Reader to view that, or any other, PDF, if you go File>Properties, then you will be able to see when the document was created (19/05/2017) and last modified (25/05/2017).
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    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Have now diverted a regular donation I was making elsewhere, it will now be going towards supporting the Biobank. Here is the donation link http://cureme.lshtm.ac.uk/donate-to-cureme/
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Respectfully, I'll remind you that the title of the thread is "ME/CFS Collaborative Research Centers & Data Management Center Announcements". It's not "Ron's failed bid" or "NIH delivered the money they promised but we need more". I'm in no way trying to shut down conversation, just take any...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    No.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    And dragging things back on topic again, link to Cornell's Center for Enervating NeuroImmune Disease - http://neuroimmune.cornell.edu/ which has links to descriptions of the various components of their Research Centre.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    No, it's not relevant to this thread, which is about the funded centres. Start a new one or move over to the proposed petition thread.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Is there any chance that we can keep posts on this thread to conversation about the funded projects and related news? By all means discuss the failure of Ron/Stanford to win funding but for clarity on both topics please use a different thread for it.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Links to the project info on the funded teams on the NIH site; Williams/Research Triangle Institute Data Management and Coordinating Center - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479323&icde=36244853
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Links to the project info on the funded teams on the NIH site; Unutmaz/Jackson Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479803&icde=36166814 Clinical Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479804&icde=36166814 Clinical...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Links to the project info on the funded teams on the NIH site; Hanson/Cornell Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479859&icde=36166731 Clinical Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479860&icde=36166731 Integrative...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Links to the project info on the funded teams on the NIH site; Lipkin/Columbia Admin Core - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479908&icde=0 Project 1, Microbiology of ME/CFS - https://projectreporter.nih.gov/project_info_description.cfm?aid=9479909&icde=0 Project...
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    BBC Radio 4: The Film Programme - Unrest

    Or you can look at it from the angle that Jen is using this extended publicity period to raise as much awareness as she can. For that reason I'm, personally, happy to wait.