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

[WithHope]

I think this is a good article on balance - unlike the Indepdent article which seemed to give with the right hand and then take with the left (felt eerily like Wessley)...

Excellent in such a big paper - the challenge is to get some good journalists in reputable papers to go a couple of steps further and dig up the real story.. the deep injustices (across the world) that have been going on for over two decades.. with shocking results for people with ME/CFS. Yes we are angry - I only wish an inquisitive journalist would ask why.

 

[serenity]

sorry Village, yeh i don't get that much outta my family either - they try but so far they don't understand either. hope this helps!

 

[Rafael]

It looks like damage control. Pre-empt of potentially critical truly-independent articles.

I think there is a catch to the praise and compliments as it almost prepares public to discount future noise and criticism (because we are so connected and powerful).
We re so powerful thats why the ME research budgets are so high and there's constant ME canvassers at everyones door (not).

If we wrote it - then we wouldn't skip the part about all of the "negative studies" getting zero positives. Which is illogical given that the virus seems to clearly exist and has been found in at least 5 studies.
Skipping it gives unfair weight to the negative studies.

But its mostly all good. I don't mean to be a complainer.

 

[serenity]

i think i see it as the opposite, more like "uh oh, the dang study is positive. we better start saying nice things"
at least i hope so!

 

[camas]

A confirmed link between chronic fatigue syndrome and XMRV could spur thousands of patients to demand treatment with antiretroviral medications.

Imagine that! Seriously ill people 'demanding' treatment for their disease.

All in all a good report by the NYT. I've e-mailed this article to everyone in my family to increase its visibility.

 

[kwietsol]

Oh guys, I think he gets it. My guess is that he is a reporter who is willing to fight to get our truth out. As a founding member of the National Lesbian and Gay Journalism Association, I’d guess he has some strong opinions about government suppression of retroviral science and some experience in exposing it.

Mr. Tuller's quoting Hillary Johnson describing "a cabal of top government administrators" indicates to me that he has a clear understanding of what we are up against. His noting that Canada recently banned CFS sufferers from donating blood indicates to me that he understands the enormity of the health crisis that may lie ahead. His mentioning Dr. Jamie Deckoff-Jones’ improvements in her health with retroviral treatment indicates to me that he is willing to suggest retroviral cause.

It’s fine he has a CDC email address. Dsmom, post 11 of this thread, quotes from
http://www.wkconline.org/index.php/s...page/?sid=1035
“He just completed a three-month Knight Foundation journalism fellowship at the Center for Disease Control.”

What could serve us better? He’s been on the inside.

Kudos to Mr. T. for writing this. Please, keep going for it!

And kudos to all on the forum who have strived hard and long to get our story this kind of attention.

 

[serenity]

i'm with you Kwietsol! i think it's a great article!
made my day~!

 

[dsdmom]

Kwietsol - you're missing my point. The reason that he has a cdc address is obvious. But someone on the 'inside' of cdc writing about this? It could either be a) good since he is an insider or b) questionable because of his affiliation. I didn't make any statement as to which it was - just bringing additional information to the picture.

Personally I think the article is ok - it could have been a lot better.

 

[boomer]

I think it is a very easy read and covers a lot of territory. I think he did a fantastic job!! Anytime he wants to write more articles on cfs that would be great.

 

[serenity]

me too Boomer! i am a fan of this article
i was just having a discussion with my husband over dinner last night, saying i think this thing is about to bust wide open. he was pessimistic, saying its' been 20 years & it hasnt' yet yadda yadda... this article supports my argument, we just hit the New York Times people! & with a good article!
i used to watch these forums with interest, but i remained removed. i didn't want to get my hopes up, but by now - i'm invested. i think we are close, very very close. if the dang NIH/FDA paper comes out negative, then i'll be very disappointed.
but if it's positive, i think the cat is out of the bag. whoo hoo!!!

 

[boomer]

The statement about CDC suspecting it could be an infection bothers me. If they thought it could be an infection why didn't they try to find it. They could have put a few million into looking for an infection but they didn't bother for decades. Why didn't they? I guess they thought they could get away with it and they did.

"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.” "

 

[muffin]

"very well-informed and highly connected patient and advocacy population"

"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!!!!

 

[ixchelkali]

I don't think I've ever seen The ME/CFS population described in such a positive way, especially by a government agency. Is the CDC trying to kiss and make up or is there a catch? :-0

"Highly connected and well-informed" is not a compliment. It means we're not just plain folks. It's the same stereotyping as "yuppie flu." It says we're upper middle class, have all the advantages and have nothing better to do than to think we're sick. We're not the sort who soldier on in the face of adversity, like honest hard-working folks do. It means we're a special interest group.

At least, IMHO.

 

[muffin]

"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 there’s any new information, it’s circulated widely,” he said."

-- Actually, it is. He is not saying we are upper-middle class or wealthy and bored. He is saying that we are a hghly connected and well-informed group of people and that is TRUE. Look at this forum. So many smart people. And we react to ALL media comments and any new happenings within minutes. That's called highly-connected and well-informed. It means we are DANGEROURS, not wealthy or bored.

We are a threat. We do react super fast. If something hits the Internet, media or in government, WE ALL are on it within a few minutes. It amazes me how fast you/we all are at getting info out there and attacking and emailing to the appropriate people. I know I send out many emails all over to everyone almost every single day. I have a big mouth and I use it. Ditto for many others on this site. These folks move like greased lightening. And THAT is good!

I really do think it shows we have become a true force to be dealt with. And I am glad that this guy told everyone that this is a sick group and "This is a very well-informed and highly connected patient and advocacy population, and whenever there’s any new information, it’s circulated widely,” -- just like the poor HIV/AIDS people before us. And spreading and reacting to new info is how you WIN....IMHO.

 

[ixchelkali]

The statement about CDC suspecting it could be an infection bothers me. If they thought it could be an infection why didn't they try to find it. They could have put a few million into looking for an infection but they didn't bother for decades. Why didn't they? I guess they thought they could get away with it and they did.

"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.” "

You have to learn how to interpret CDC-speak. When they say "one of many possible triggers," they are repeating the psych school party line. Their story is that someone gets an infectious disease, feels sick, gets out of condition, then becomes afraid to become active again, and develops neurotic maladaptive sickness beliefs. So an infection can "trigger" it, but doesn't cause it. So they've been looking for the cause in things like childhood trauma.

What gets me is that while they've been busy dismissing Epstein-Barr, cytomegalovirus, HHV-6, etc as the cause of ME/CFS, they've never bothered trying to explain why patients have higher rates of those infections that healthy people. They just call them passenger infections and leave it at that. And they don't even say that it might be a good idea to TREAT those infections, that patients might feel better if those were cleared up. Nope, they just say they aren't the cause so doctors shouldn't even test for them.

 

[SOC]

"Highly connected and well-informed" is not a compliment.

I have mixed feelings about this phrase. I suspect the CDC is in major CYA mode and doesn't dare label us as hysterical anymore. There's a certain flavor of back-handed compliment in it though.... I like the "well-informed", but I wonder if the "highly connected" isn't a PR-correct translation of "sit around and bitch".

Overall, though, I think I'll take it as a compliment. Even if it wasn't intended as such, I've decided to wear the label proudly. There's historical precedent for using the other side's insults as a badge of honor.

 

[ahimsa]

Imagine that! Seriously ill people 'demanding' treatment for their disease.

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

Usually that phrase is used when patients are asking for inappropriate treatments. For example, a story might say that a patient with a viral infection "demanded antibiotics" since those drugs generally do nothing for viral infections and overuse can lead to an increase in antibiotic resistant bacteria. But in this case, although a lot more information about XMRV is still needed, it is possible that antiretroviral medications may indeed be the recommended treatment for XMRV positive patients.

Oh, well, you can't have everything. I also noticed that, although they got it right in the headline (thank goodness!), the article used "chronic fatigue" interchangeably with "Chronic Fatigue Syndrome." That incorrect phrase, which we all know is just a symptom, not a diagnosis, is used more than once. Will any journalist ever be able to get through an entire article on ME/CFS without making this mistake?

PS. I already have a free account at nytimes.com so I emailed the article to 4 different people. Might email more copies later but resting now. :sofa:

 

[SOC]

You have to learn how to interpret CDC-speak. When they say "one of many possible triggers," they are repeating the psych school party line. Their story is that someone gets an infectious disease, feels sick, gets out of condition, then becomes afraid to become active again, and develops neurotic maladaptive sickness beliefs. So an infection can "trigger" it, but doesn't cause it. So they've been looking for the cause in things like childhood trauma.

Yep, that's no admission that there's any infection, just that an infection can trigger our conditon. More CDC weasel-speak.

What gets me is that while they've been busy dismissing Epstein-Barr, cytomegalovirus, HHV-6, etc as the cause of ME/CFS, they've never bothered trying to explain why patients have higher rates of those infections that healthy people. They just call them passenger infections and leave it at that. And they don't even say that it might be a good idea to TREAT those infections, that patients might feel better if those were cleared up. Nope, they just say they aren't the cause so doctors shouldn't even test for them.

That has been bugging me big time, too! I'll even go so far as to say that it pi$$es me off. First it's, "No point in testing for HHV-6. It only reactivates in immunocompromised patients and you're not immunocompromised." Then, when a bunch of us have identified active HHV-6 (or whatever) infections, they say "But not all ME/CFS patients have HHV-6 reactivations, so it isn't a causal" and throw it out entirely. Isn't it obvious to ask WTH do these patients have reactived viruses that "nobody" gets?

One more WTH moment with this d**** disease.

 

[muffin]

OK. If you guys don't like how he wrote this article, that he did mix CFIDS and CFS, "demands treatment", etc. then email him and correct him. Give the guy MORE info so he can do better reporting on us.
We need the major media types on our side so keep them in the loop and informed or corrected.

I had sort of mixed feelings when I read his article. But overall I was pleased. So, keep at them ALL. We need the NYT, Washington Post, and the major networks, etc.
Keep emailing and informing these people so that THEY get it right.

He did quote Hillary Johnson and she really nailed the Feds but good.

 

[ahimsa]

OK. If you guys don't like how he wrote this article, that he did mix CFIDS and CFS, "demands treatment", etc. then email him and correct him.

Muffin, I liked the article. Compared to so many bad articles this was great!

I hope I did not sound too critical when I pointed out those couple things that I did not like. I don't want to send the author email about what I found wrong in his article since it is one of the better articles that I've read lately. Actually, I might send him a thank you note.

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