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Harvard Health CFS website content

Discussion in 'General Advocacy Discussions' started by InitialConditions, Jul 5, 2020.

  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome-a-to-z

    This could really do with being challenged. Harvard has had some good material on ME/CFS over the past couple of years, especially with the launch of the Harvard ME/CFS Collaboration.

    I wonder if it's worth trying to get this changed? I know others have had some luck in the past amending website content.
     
  2. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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  3. Trish

    Trish Moderator Staff Member

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    DokaGirl, Lisa108, Hutan and 5 others like this.
  4. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    website wants $4.99 a month to see content. Grrr!
     
    DokaGirl, Hutan, alktipping and 2 others like this.
  5. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    How strange. This wasn't coming up before, but now it is...
     
  6. strategist

    strategist Senior Member (Voting Rights)

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    It's a small problem. Should be easy for patients to fix it themselves. I'm a bit busy now and if no one else writes an email to Tompkins I'll do it.
     
  7. dave30th

    dave30th Senior Member (Voting Rights)

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    1,735
    is this a new thing on their site? did it pop up now for a reason?
     
  8. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Prob want to keep vexatious patients out from reading whatever it is they wrote?

    Thanks for the alert anyway. Even when we can't read the full stuff it's interesting to see how they prevent us seeing information. I wonder how often this will happen... I know lots of med stuff is behind paywalls, but this seemed rather different to me.
     
  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Location:
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    I'm not sure if it's new. Someone on Facebook must have found and read the page, and posted about it on one of the groups.
     
    DokaGirl likes this.
  10. strategist

    strategist Senior Member (Voting Rights)

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    Has anyone written an email to Tompkins yet?
     
    DokaGirl likes this.
  11. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Could we do a letter addressed to the website's content manager supported by Ron Tompkins or someone else from the Harvard ME/CFS centre?
     
    sebaaa and DokaGirl like this.
  12. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Maddening info. It is so frustrating the evidence-based material is taking so long to get out there!

    I'll try to write...

    ETA: very tapped out with other stuff right now, so can't promise, but it's not right such a well known/respected institution has this type of stuff on its website
     
    andypants likes this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    Sticking my nose in From this side of the Atlantic isn’t there an ME group in Massachusetts that’s pretty good on the advocacy side? Maybe they would get involved
     
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    There's a good one that I remember of but I'm not 100% sure it's this one: https://twitter.com/MassMECFS.
     
    Sean and NelliePledge like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Ariel and Barry like this.
  16. Ariel

    Ariel Senior Member (Voting Rights)

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    I would be interested to know what this (paywalled?) Harvard website says? I hope it's not terrible.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Well the first 2 paragraphs are a mess that confuses chronic fatigue with ME and anyway this Harvard Health site is pushing a lot of dubious stuff, it doesn't look like a serious thing, more of a money-making project.
    BPS nonsense.
     
    Amw66 likes this.
  18. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    5,337
    Harvard Health is woo central.
    Lot of snakeoil without the overt " alternative" positioning of , say, GOOP.
    To be avoided .
     
    Snowdrop likes this.

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