• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

ABCNews.com piece on CFS and XMRV

jackie

Senior Member
Messages
591
Rrrr! Thanks so much for giving us a Heads-up re: this piece. I know there was a place to contact the editor "if you have info on this Topic"....but I don't have the where-with-all to fight today!

Of course, some of the info was correct....but I personally objected to the spin put on it.

Although it IS good to be told I'm a FAKER no longer!!! Reporting like this amazes me.

But the only conclusion I can come to is that the REAL story isn't available in enough places/sources for the average writer to access?

Most people today still know so little about CFS. If Reeves comments are what's out there (his derogatory and sceptical views) - then that is what will be reported.

Unless this was written with inflammatory motives - and I'm too naive to recognize that? I've become so sensitive and distrustful, I honestly can't tell any longer!

"We" need a good writer to introduce some of the findings that are being discussed at the CFSAC meeting....to counter the ignorant statements in the media. And then overwhelm those media outlets with the right "spin"!

Thank God, we have Hilary Johnson speaking the truth. We simply need her truth in more places!

thanks again....I've been trying each day to search for articles (especially re: XMRV) but I missed this one... and it's actually the second in a week I've taken exception to!

jackie (am I being a CURMUDGEON?):p:(
 

sarahg

Admin Assistant
Messages
276
Location
Pennsylvania
Abc article "is your bitterness a medical condition?"

Well it's a big step up from just a short time ago

http://abcnews.go.com/Health/ColdandFluNews/Story?id=7688631&page=8

Please be sure to click through the other pages to see what other conditions "CFS" is lumped in with in this article. It actually made me so mad that I somehow talked PANDORA into responding to it, and they did!

Here is the story of PANDORA's response

http://cfsknowledgecenter.ning.com/profiles/blogs/chronic-fatigue-syndrome-are


I'm not sure if it is because of XMRV or PANDORA or both that they decided to be at least a little bit less idiotic... and of course in the new article itself it would have nice to see an apology and a retraction for their earlier articles, an apology for reporting false information and needlessly making fun of very physically ill people, as well as not conducting accurate research in writing the "bitterness" article. I'd say overall we still deserve that apology.
 

MEKoan

Senior Member
Messages
2,630
Sarah, I'm so glad I did not see this before now.

I find it distressing that it's still there. I wonder if there's a way to get them to take it down. It's pretty egregious, even for the bad old days.
 

MEKoan

Senior Member
Messages
2,630
Rrrr & Jackie,

"Chronic Fatigue Patients: No Longer Fakes?"

:mad:

"Fakes"

:mad:

"?"

:mad:

Many outlets have a person who just writes titles. The title is often written to be catchy. This one is just crappy.

:cool:
 

Rrrr

Senior Member
Messages
1,591
ABCNews.com

yes, there was a lot wrong with that article, starting with the title!