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Does Chronic Fatigue Syndrome Deserve a Better Name? -- Boston Globe article

LaurelB

Senior Member
Messages
139
I wanted to write very quickly to let you know about a Boston Globe reporter who responded to (and followed up on) my email the other day.

Deborah Kotz had written an article called "Report deals blow to fatigue sufferers" in regards to the latest XMRV studies.

Since I've been too sick to keep up with the latest study details, I focused instead on her use of "chronic fatigue" vs "chronic fatigue syndrome." I also sent her a link to my video testimony from 2009. I never expected to get a reply.

She wrote back, however, and told me my testimony really affected her. She seemed genuinely interested in learning more about the illness.


She wrote a blog post in response, which is now up and can be found here (you may need to cut and paste):

Does Chronic Fatigue Syndrome Deserve a Better Name?
http://www.boston.com/lifestyle/health/blog/dailydose/2011/06/does_chronic_fa.html?camp=misc%3Aon%3Atwit%3Artbutton



She posts my video and asks questions about the name, and whether we need a better one.

I want her to know this is an important issue to us, so please vote on the poll if you can. You do not need to register to do so. So far, less than 100 people have voted. It would be great if we could have more votes showing the need for a new name.


I also want to encourage those of you who are able to respond to write something in the comments section (you do have to register to do so). This is a reporter who seems compassionate and open to learning more, and that's a rare thing these days. It would be nice to give her our support and thank her for taking an interest, while also letting her know that ME/CFS is a 'hot topic" that generates public interest. Informative but polite responses would be wonderful.



In regard to the comment she makes about my blog, please note she did not mean it in a negative way. Some people thought she was being sarcastic, but she was not. She wrote me personally to say "some folks who commented thought I was somehow criticizing you for writing the blog when I meant it as an expression of amazement that you can summon the strength to keep a blog going in your condition."


She was very kind to me in all her emails.


Anyway, if nothing else, please vote!!


Thanks everyone!



Laurel
 

Nielk

Senior Member
Messages
6,970
Laurel,

Great job you did. It's amazing how much effect you have from your bed.
Thank you.
I just voted and left a comment.

Nielk
 

Nielk

Senior Member
Messages
6,970
Your video is very powerful.
My daughter (who is well thank God) watched it and was so moved by it. She cried and cried.
It's from watching your video that she started understanding what I am going through.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
thank you, Laurel! well done :)

I voted, and will comment when I have time to register
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
What are you guys talking about voting for, Chase?

GG

Voting the poll (about whether CFS needs a new name) in this article:

I wanted to write very quickly to let you know about a Boston Globe reporter who responded to (and followed up on) my email the other day.
...

She wrote a blog post in response, which is now up and can be found here (you may need to cut and paste):

Does Chronic Fatigue Syndrome Deserve a Better Name?
http://www.boston.com/lifestyle/health/blog/dailydose/2011/06/does_chronic_fa.html?camp=misc%3Aon%3Atwit%3Artbutton



She posts my video and asks questions about the name, and whether we need a better one.

I want her to know this is an important issue, so please vote on the poll if you can. You do not need to register to do so. So far, less than 100 people have voted. It would be great if we could have more votes showing the need for a new name.

...
 

LaurelB

Senior Member
Messages
139
Thanks so much everyone. GG -- the voting is for a poll linked above about whether CFS should have a new name. It's part of the article.
 

illsince1977

A shadow of my former self
Messages
356
Laurel,

From my bed to yours "Thank you." I voted. I was 23 when I got sick.

I have seen your testimony before and it is very moving, but of course it was well worth re-viewing. You are very articulate. I am so appreciative we have your voice.
 

Enid

Senior Member
Messages
3,309
Location
UK
Caught up a little late but just voted too LauralB - (should have been changed years ago !).
 

Sing

Senior Member
Messages
1,782
Location
New England
Good job! The better we can connect with media and individuals who have a public voice, the more we will let society understand our reality more accurately. It is worth it to try to connect.

I write letters to the editor, which are published, and sometimes I write to journalists. This is in addition to trying to explain a few things, convey a picture, to people I deal with in various ways.