New York Times Published: July 14, 2010 Delay in Release of Study prompts outcry

[Dainty]

I emailed a note to the corrections department, explaining the error and it's repercussions in very cordial terms and asked them to kindly correct this oversight. It would really be helpful if others did so as well. I added that the abbreviation "CFS" was well accepted when shortening the cumbersome name of this disease and that it's also called "Myalgic Encephalomyelitis", "Myalgic Encephalomyopathy" or "ME" in most other countries, how it got the name "Chronic Fatigue Syndrome" by the CDC, under what circumstances they named it, and that many in the CFS communitiy as well as clinicians and researchers in the field have taken to calling it "ME/CFS" more and more these days. Additionally, I thanked him for refraining from the use of trivializing and offensive terms such as "Yuppie Flu" and for his dignified treatment of us and our illness which we do not always enjoy in the main stream press.

Great job, Stone, it's very much appreciated.

 

[Stone]

Thanks, Dainty, but they still haven't changed it in the article. I really think it would make a huge statement if others wrote and politely asked for a correction in the nomenclature. If we do not correct these things when they happen, we deserve what we get. Little people will almost always correct it if they are referred to as "midgets". Do I really have to explain this? If we do not self-advocate for our dignity, how can we expect anyone else to care?

 

[usedtobeperkytina]

Agree with Rusty.

Now, for the problem in calling it "chronic fatigue," it is common to shorten the words in subsequent references in a news article. For example, the first time you refer to the Obama administration, all the other times you would like just say "the administration."

It is done with names. First reference might be "Dr. Judy Mikovits, a researcher at the Whittemore Peterson Institute" and other references would be just "Mikovits" or "WPI".

Since the reporters will shorten subsequent references, what we have to do is get them to use the acronym ME/CFS. It is common to say the whole name in the first reference and then using the acronym in the following references, as long as the acronym is used within a few sentences of the first reference, so the reader will pick up on what the acronym is referring to.

Since the disease is called chronic fatigue syndrome, it is for journalists to understand that the shortened form of referring to the disease is "CFS" not "chronic fatigue".

Tina

 

[camas]

I had the exact same reaction to that phrase - "demand treatment"? How strange to phrase it that way.

I'm glad I wasn't the only one who found that sentence to be a bit odd! But I'm with you, Marjorie. If I were to write to this journalist it would only be to thank him. He's done us a great service by taking this story beyond the blogosphere.

 

[serenity]

i agree! i dont' think i'd pick this journalist apart, i'd be giving him big big thanks!

 

[muffin]

Great advice and worth repeating

In a past life I was journalist-trained and was a magazine publisher. One of the first rules you learnt about writing an article was that you led with the most salient points. Every subsequent point is less important. Simple reasons for this: hook the reader as soon as possible, and editors cut from the bottom. Following this rule, imo the article is squarely against the CDC and fully supportive of the conspiracy theorists. Just check the tenor of the first 4 or 5 paragraphs. Irrespective of what the CDC says later in the article, and it does appear to be CDC pap, the journalist has really gone out of his way to side with the conspiracy side. This is quite a departure for a major media which are typically very conservative.

Please, if you are critical of the article and respond to the journalist, be careful to separate criticism of his efforts and criticism of comments from CDC.

Learned something new about journalism and how it works. Thanks for this Rusty!

 

[BEG]

And I should definitely say THANK YOU to pollycbr125 for starting this thread. Marjorie

Me, too. Thanks, pollycbr125. :Sign Good Job: BTW, I linked it to my facebook page.

 

[muffin]

To quote Glenn Close, "I am not going to be ignored." (Good one Tina!)

TINA: Originally Posted by muffin
"Stephan Monroe, director of the C.D.C.s division of high-consequence pathogens and pathology, said the agency believed that infectious agents could be one of many possible triggers for the disease but that no pathogen had yet emerged as a primary cause.

He said he was not surprised by the current uproar among patients. This is a very well-informed and highly connected patient and advocacy population, and whenever theres any new information, its circulated widely, he said.

Monroe has NO CLUE just how well-informed and highly organized we are. They zig, we zag. They lose. Guess I have to email this NYT article off to my friends, Kathleen at DHHS and Thomas at CDC. Just to keep them up to date...so helpful like that!

KEEP BEATING ON THAT DRUM!!! EMAIL, SCREAM, YELL, WE CAN'T STAY IN THE 1980'S ANYMORE!!!!
===========================================

TINA: LOL (laughing at Kathleen being your friend.) I guess the squeaky wheel gets the grease, right?

To quote Glenn Close, "I am not going to be ignored."
--------------------------------------------------------------
MUFFIN: I have emailed both Kathleen and Tom so many times that if the FBI shows up at my door to tell me to stop emailing them I would not be surprised. I give advice, esp. to Frieden since the poor guy is my age and has steppped into a huge mess at the CDC and not just the CFIDS mess.

I do believe that because the CDC/CFS funding was so very low (under $4M) and below any radar for funding, etc. that Freiden had to know the whole background on the issue of CFS before it smacked him in the head and he did not have an idea of what had gone on for 30 years before he got there. I have also told him I felt badly for him that he had stepped into a huge mess that others created and now he had to fix (like poor Obama trying to fix the 8 years of mess before him).

I do think we have to educate these people because they just don't know how bad a situation this really is. I do believe that Reeves did everything to keep that CFS program funding low and under any radar. It was a deliberate way to kill it off via no funding and make it just "go away". The Feds pay attention to the big money - the billions spent on DoD programs, etc. but no one would really bother with a tiny little neurotic program under $4M - and Reeves was correct about this. The rotten @*@()$(R% also did not use children as he was told to in any study/survey and he did that so that again, the CFS program stayed under the radar. As stated before, when children are involved, people pay attention. When children are sick and their lives destroyed (bedridden, dying, etc) THAT"S when the public pays big attention and gets mad as hell. And Reeves knew that too.

For these reasons and many others I do believe there has been a very concerted effort to kill off CFIDS research, funding, etc. and tag us as nuts. Thus far it worked. But NOT anymore!
Once the public finds out that Reeves and the CDC allowed a deadly Retrovirus out into the public and in the blood supply, oh my...Poor Freiden will really have his hands full and I really will feel bad for him.

 

[George]

Hey Muffin

What about a writing campaign sending out the Canadian Consensus Criteria as the criteria to adopt? Could you compile a list or start a thread of people to write and we all send out copies to Gov'ment, Media and advocacy groups.


P.S. sorry I bit your head off the other night.

 

[muffin]

Will look into this George. I am not up on the Canadian Consensus so I would need time to undertand and help from our Canadian friends!
Dont' worry about biting my head, I am very pushy - or rather very pushy when it comes to CFIDS and being irritable makes me even worse. Not to worry - you and I are dog buddies!!!!!

 

[usedtobeperkytina]

What Rusty is referring to is the inverted pyramid. It is the most common form of news writing. When people "read" newspapers and magazines, they actually only scan it. They look for a headline that interests them. Then they start to read the article but stop and move on to the next article when they have lost interest.

As I had to tell some people who worked for me for a while. This would not be an acceptable form:

The garden club met on Thursday to decide what their annual flower will be. Suzie Jones brought the pineapple cake and punch, but Sally Layfield brought some surprise gifts.

Jones said she thought the daisy would be the best choice this year, in harmony with the optimism in the country.

Layfield disagreed. She favored the rose.

An argument ensued and Layfield got so angry she pulled out her gun and shot Jones. ....


As Rusty said, that is called burying, when the main point or the most important point or most interesting point is "buried" in the article, instead of in the lead paragraph and lead sentence. So if you want your reader "scanning reader" to get the news, put it at the top.

Also, as Rusty said, those articles don't come out the right size by chance for every article. Editors cut off some if too long. It is easy to have the least important at the end so editor just cuts off the end.

Tina

 

[*GG*]

Deleted, grabbed wrong paragraph