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    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Top 50 CFS Blogs And Websites For Patients With ME/CFS

Wally

Senior Member
Messages
1,167
@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.

CFS Blogs List

Chronic fatigue syndrome (CFS) is a debilitating disorder characterized by extreme fatigue or tiredness that doesn’t go away with rest and can’t be explained by an underlying medical condition. CFS can also be referred to as myalgic encephalomyelitis (ME) or systemic exertion intolerance disease (SEID).*

These are the Best CFS blogs from thousands of top CFS blogs in our index using search and social metrics. Data will be refreshed once a week.*

Follow these blogs to keep up with the latest information relating to CFS.

These blogs are ranked based on following criteria*

  • Google reputation and Google search ranking
  • Influence and popularity on Facebook, twitter and other social media sites
  • Quality and consistency of posts.
  • Feedspot’s editorial team and expert review
 

markielock

Senior Member
Messages
319
This is awesome, thank you! I am so out of touch with blogs/news outlets for ME/CFS. I'll enjoy browsing through these :)
 

NelliePledge

Senior Member
Messages
807
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.
 

SamanthaJ

Senior Member
Messages
219

Hajnalka

Senior Member
Messages
910
Location
Germany
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
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:
 

NelliePledge

Senior Member
Messages
807
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??
 

SamanthaJ

Senior Member
Messages
219
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??
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.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
*I will vouch for Spoonseeker & Jenny's tips too

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

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:
 
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