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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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Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Eg I see this comment on Reddit "
"ME is the inappropriate name, it suggest a cause of the disease nobody has yet to prove or even make likely, and indeed there have been several other names around the globe (and still are).

Chronic fatigue syndrome is an appropriate name as it simply describes the symptoms. Which is the only thing we know. The Newsweek article when it came out called it Yuppie flu, that is another option if you feel CFS isn't good enough.

Describing syndromes in a way which makes it sound as if they have a specific pathology is dishonest, and it does a disservice to those affected by it."

Don't have energy to reply effectively to this today! https://www.reddit.com/r/medicine/comments/6as4he/what_would_florence_do/
 
Mary

Mary

Moderator Resource
Messages
17,376
Location
Southern California
Jenny TipsforME said:
Eg I see this comment on Reddit "
"ME is the inappropriate name, it suggest a cause of the disease nobody has yet to prove or even make likely, and indeed there have been several other names around the globe (and still are).

Chronic fatigue syndrome is an appropriate name as it simply describes the symptoms. Which is the only thing we know. The Newsweek article when it came out called it Yuppie flu, that is another option if you feel CFS isn't good enough.

Describing syndromes in a way which makes it sound as if they have a specific pathology is dishonest, and it does a disservice to those affected by it."

Don't have energy to reply effectively to this today! https://www.reddit.com/r/medicine/comments/6as4he/what_would_florence_do/
Click to expand...

Yeah, that was pretty bad, to put it mildly. I did a reply but this person is apparently a troll and cares nothing about reality so I don't expect any meaningful response.

But @Jenny TipsforME , the link in your post appears to have disappeared - it was there and now it's gone (I think - I still find Reddit a little confusing! :confused:)
 
*GG*

*GG*

senior member
Messages
6,389
Location
Concord, NH
Mary

Mary

Moderator Resource
Messages
17,376
Location
Southern California
Jenny TipsforME said:
@Mary thanks, :)

I can still see link
Click to expand...

He or she is a troll, actually it was quite obvious from their first post. I'm not going to waste any more energy on them! But maybe others may get a little education :sluggish:

Jenny, when I go to Reddit it shows an apparent link for your blog but when I click on it the link says "removed". So the link is there, but it doesn't go anywhere.
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
@Jenny TipsforME

Aww, thanks for posting a link to one of my #MillionsMissing tweets. :) I could not take any photos this year so I just used photos & images from last year.

I was happy to see that both NIH and CDC posted something about ME Awareness Day.

I created a thread for the CDC blog post here - http://forums.phoenixrising.me/index.php?threads/america’s-hidden-health-crisis-hope-for-those-who-suffer-from-me-cfs-posted-by-cdc.51430/

And here's a tweet from Solve ME/CFS group with a link to NIH statement

https://twitter.com/i/web/status/863135665973809155
 
Jenny TipsforME

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@Mary I agree not worth wasting energy on trolls but I was deflated to think that's what other people would see.:( I'll add the link again.

I only commented on CFS because when I shared a newspaper article on Reddit Americans complained they didn't know what ME was...

What did cheer me up was seeing this tweet from Andy Burnham (UK politician)
https://twitter.com/i/web/status/862938179648856065

I RT anyway and then thought "hang on on that formatting (of the text image he's sharing) is really familiar, the words are familiar too. Oh because I wrote them!" It's a snippet from a post I wrote for the uk stopGET petition... :lol:
 
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