The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Top 50 CFS Blogs And Websites For Patients With ME/CFS

Discussion in 'General ME/CFS News' started by Dolphin, Oct 16, 2017.

  1. Dolphin

    Dolphin Senior Member

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  2. Wally

    Wally Senior Member

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    @Dolphin and @Tom Kindlon - thanks for posting and tweeting this information.

    A question about the list? Has anyone ever looked at the criteria* this site uses to arrive at a finding of the “top 50 blogs”?

    If yes, do you think the list is fairly accurate? Are some blogs coming out higher using their criteria and “search and social metrics”?

    In other words have patients or others in the ME/CFS community reviewed whether these blogs are what a large segment of the patient population think are the top blogs and/or are ranked accurately? I do realize there is a lot of subjectivity to lists like this and the use of metrics is suppose to take out some of the subjectivity, but I always like to understand in whose opinion or criteria/metrics I may be being influenced by in forming my own opinion.

    Has Phoenix Rising (“PR”) ever polled its members to ask what blog or other resources available on the internet re ME, CFS and/or SEID that they would recommend to other patient’s and/or their caregivers? The advice from other patients can sometimes be the most valuable source of where you can find good information on the internet. PR has a large membership, so it might be an interesting exercise to see what a test poll might reveal.

    Note, This is how the site describes how they arrive at determining who makes their list.

     
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  3. Demepivo

    Demepivo Dolores Abernathy

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    Having supplement superstore Pro Health as #1 is a bit odd as the stuff is just recycled from elsewhere...
     
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  4. charles shepherd

    charles shepherd Senior Member

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    But good to see two UK sites - ME Association and ME Research UK - occupying third and fourth places!

    CS
     
  5. Joh

    Joh Inactivist

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    My favorite blogs were included - just one missing: http://25pillsaday.com/
    (by Mary who also wrote the highly successful ME petition on change.org)
     
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  6. markielock

    markielock staying independent, one day at a time

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    This is awesome, thank you! I am so out of touch with blogs/news outlets for ME/CFS. I'll enjoy browsing through these :)
     
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  7. NelliePledge

    NelliePledge plodder

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    I find it weird the way they make you "subscribe" to the sites when you could just google. I don't see the point of the list.
     
  8. Stuart

    Stuart Senior Member

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    'Top' is not the same as Best. So grain of salt on such lists.
     
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  9. Wally

    Wally Senior Member

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    @Stuart - this is how this site describes their pick of the “ top 50 blogs”.

    See, https://blog.feedspot.com/cfs_blogs/
     
  10. hellytheelephant

    hellytheelephant Senior Member

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    Isaiah 58:11, Mel9, Orla and 6 others like this.
  11. SamanthaJ

    SamanthaJ Senior Member

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    I like that one too. Was good to see a couple of PR members' blogs on there, though shockingly no @hellytheelephant, whose blog I follow and recommend! I also like Laura's Pen, which wasn't listed - https://laurachamberlain.co.uk
     
  12. Joh

    Joh Inactivist

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    You're right, my memory has gotten so bad, I also recommend Laura's Pen very much (including the awesome comics and videos) and will check out Helly's blog. :)

    It's funny, that I never read blogs before I got my diagnosis. With becoming homebound I started to read many and they've become important for my sanity and for not feeling so alone (it helps to read that others experience the same and put my thoughts into words). And they're also great advocacy to show our everyday life and struggles with this disease. So thank you to the bloggers. :balloons:
     
  13. Demepivo

    Demepivo Dolores Abernathy

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    *Yes, agree that the MEA have done well recently with their various campaigns.

    *MERUK have always done good clear explanations of the science.

    *I will vouch for Spoonseeker & Jenny's tips too
     
  14. hellytheelephant

    hellytheelephant Senior Member

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    Thanks @SamanthaJ and others ....I have just subscribed to Laura's pen....also @Jenny TipsforME is a favourite.

    As is Jamison writes, which i found out about on PR- so good to see a bloke blogging on this illness.
     
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  15. NelliePledge

    NelliePledge plodder

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    Yes but why does the site make you “subscribe” to other sites you can just Google?
    Is it making Money out of collecting email and Facebook addresses??
     
  16. SamanthaJ

    SamanthaJ Senior Member

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    I found if I clicked on the link to the blog (in italics under the image), it just took me to it without having to enter details. I agree it's not clear what happens if you enter your email address.
     
  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Thanks :) it boosted my mood to see my blog on there anyways. The email letting me know my blog was on the list said it was compiled by a panellist, which implies it wasn’t purely a metrics exercise. I’d be surprised if my blog was in the top 50 from a stats point of view. I’ve not had the energy spare to promote it much for a good while and I blog on average just once a month, at the end of the month.

    Laura’s Pen should definitely be on the list. Spoonseeker is one I read fairly regularly. I find reading proportionally much harder than writing though with ME, so I don’t actually keep up with many blogs (or threads on here). I dish out the words to decipher but I can’t take them myself :rofl:
     
    Last edited: Oct 19, 2017
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