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

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New ME/CFS News Tracking/Trending Blog

Hi All!

I love to keep up with news and research - our news...but I have to conserve my energy too -
so visiting 300+ blogs everyday is not an option.

In my past I loved building databases - large ones. So I put my skills to task
and compliled a small database/list of blogs and sites that are associated in some way
with ME/CFS/FM/NID/X etc.

I wanted to be able to glance at a site and see what was 'new" quickly
and often- so I formated this one to list newest posts at the top -
pretty simple.

http://mecfsblogroll.blogspot.com/

So in sum, I created a "ME/CFS News Tracking" blog-style site to help me keep up
with "our" news (not for personal posts or not a forum) - like a
reference site. I am working on others ways to help it be useful and
relevent (and me too) - news-wise.

BTW, its been losing its formating - so if you view it and it's a list
without the headlines and time posted - then its messed up and re-
visit later - I'm still working things out.

Take care everyone - and if you'd like to add a site/blog or see I've
missed a few please please let me know.

Its like our personal Drudge Report - hah!

God Bless,

Elisabeth

(P.S. I really hope its helpful to someone. It is really a time and energy saver for me and comforting to me - to be able to keep up with friends in this community and news/reserach. Of course this site (Cort's news portion) is always trending on it!!! )

NOT SELLING ANYTHING - BUT I AM PUTTING WPI DONATION REQUESTS ON THE SITE!
 

illsince1977

A shadow of my former self
Messages
356
Personally, I prefer subscribing to RSS feeds directly or through Google Reader or one of other RSS feed readers available to keep up with the blogs I like. I commend you for using your skills in service of the community, but am puzzled by this approach. I'm sure I must be overlooking something! I do intend, though to give your page a thorough review to see if there are any blogs or sites I can subscribe to that have escaped my notice until now. Thank you.
 
Thanks GG, WillowJ and Illsince --- so much, everyone. I so appreciate the kind words!!!! I worked really hard on it and hope it can be of value.

RSS through Google Reader is great too - but as you know, some of us are too sick, don't want the work/bother, the searching and updating or want to preserve their anonomity.

Take care and thanks again for the feedback and support - it means more than I can say...

Elisabeth
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanku Elisabeth!

It looks like a massively helpful resource, so I'll bookmark it.
I've never used Google Reader or RSS feeds (I don't even know what they are), and I'm sure that many others haven't either, so you've created something really helpful.

Could I make one suggestion? It would be nice if there was a slightly longer bit of text for each of the entries, to get more of an idea about what each one is about.
Would that be possible?
 
Hi Bob & Valentijn,

Thank you so much for the kind words and great support. I am so lucky to be part of this community. I am so happy that you both like the site.

I struggle with my relevance with this illness - and part of my goal was to find something to help myself and others...

So the positive feedback is so happy-making!

And Bob, I will definately look into your suggestion regarding lengthening the text portion - I love hearing of ways to improve it - and see if its possible...

Thank again.

God Bless,

Elisabeth
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I struggle with my relevance with this illness - and part of my goal was to find something to help myself and others...

I know what you mean Elisabeth. I suppose that most of us probably do at times. The connections we make on the internet do help a lot don't they!

So the positive feedback is so happy-making!

You totally deserve the positive feedback, after all of that work!

Thanks again for what you've created Elizabeth.
 

shannah

Senior Member
Messages
1,429
Great job Elisa!

I see some there that I'm never seen before. I too have been too ill to figure out the RSS feeds and the like so appreciate your efforts and your willingness to share.

Here's a little thought for you.

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.
~Christopher Reeve ~
 
Bob- You are truly an Angel - you are soooo encouraging and thoughtful...so grateful for your kindness.

Mellster - Thanks so much for your positive comments!!!!

Shannah - I am the same way - RSS is too much for me. When I read your post I thought - what another ME/CFS friend once said to me "Jesus whispers" - well, basically what I mean is that your quote meant a great deal to me personally. I have a necklace from the Christopher Reeves foundation that i use as inspiration - and your quote just moved me to tears - so thank you so much - you must be a very special girl to have such a huge impact on someone...God Bless you!

Thanks all for all your support - it REALLY means so much to get feedback, inspiration, encouragement and community from others - in the "same boat" so to speak!
It moves me forward...

Elisabeth
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Thanks for your work in putting together this blog roll, Elisabeth!

I'm another ME/CFS patient who knows about RSS but finds it a bit of a hassle, too. I'd much rather browse a list like this. Plus, when new ME/CFS blogs come out then they can be added to your list.

So, many thanks for your hard work. I'm a former software engineer and I miss my old job very much. I often wish I could find a useful way to contribute that I could handle with my current condition.
 
Hi Ahimsa,

You are so sweet - thank you. It's a labor of love and it helps me so much. I'm not to fond of my RSS reader either. In addition to blog feeds, I'm adding WPI, research updates and advocacy groups.

I've added bout 25 or so new feeds - I've gottn quite a few emails from people - to add their site or blog.

You will find a way to use your substantial talents as a software engineer - an opportunity will just present itself - that's what happened to me...

Thanks so much for your kind words and support. I love you quote, btw.

God Bless,

Elisabeth

http://mecfsblogroll.blogspot.com/