1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by pollycbr125, Jul 14, 2010.

  1. CBS

    CBS Senior Member

    Messages:
    1,356
    Likes:
    216
    Western US
    In a former life, I had more than my share of contact with the media. When a major paper reports on something of vital interest to you and you come away with some mixed feelings but pleased overall, you can almost always assume that you've won that battle and that your "adversary" isn't feeling pleased at all.

    At least from my experience, this is as much as one can expect, less than we can dream of, and we all know that it is more than we can count on.

    And yes, the CDC in its 25 years of deliberately trying to marginalized us has cast itself as adverse to the well-being of real CFS patients. Why hasn't the CDC ever attempted to investigate the efficacy of treating all of those co-infections that are so poorly controlled by our poor little abused and traumatized psyches/immune systems?

    If, when published, the results of the FDA/NIH paper continue to support the conclusions of the original Science paper, the pent up rage that will be directed at the CDC will be like nothing they have ever experienced before. In the end, I'd rather be in my shoes with the disease than in their shoes having to defend their past.
  2. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    I'm not really complaining about the article itself. He covered the story, that's a big plus in itself. And I don't blame him for quoting the weaselly things the CDC etc are saying. I'm just trying to see it as Mr Joe Average Reader might. Short of a reporter deciding to do a real investigative report, I think it's pretty good. And the New York Times is a major newspaper that will reach a lot of people. Hopefully, it will also reach some ME/CFS patients and their families who might not be so "well connected and well informed."
  3. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    One thing this article does, and it's a BIG plus, is make it much harder to bury the NIH/FDA paper (if anyone were so inclined).
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    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."

    Tina
  5. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    The politics of this article, in my reading, are that David Tuller remembers how the history of the AIDS crisis went, how it was ignored because it first affected a marginalized, disrespected community, how people went without diagnosis or treatment and were dying right and left. Secondly he is a professional journalist and wants to stay that way (these are tough times for the journalism business), so for now, as the jury is still out on the science, he isn't passing judgement. His article skillfully bridges both sides--FOR NOW--and that is what a number of scientists and other leaders are also doing, hedging their bets, not burning their bridges. Their goal is to keep the lines of communication open and to stay in the game. However, should we have more strong, unequivocal studies come out linking XMRV to ME/CFS, these people will quickly side with us.
  6. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i'm thrilled with the article, it's about the best we can expect right now. the only thing that bothers me or stops me from emailing it all over is that it even mentions psychological illness. i don't repeat articles that even mention it - at all. but that's just me, i can't expect a reporter not to mention as part of the history of this illness. we all know it's true. i just won't feed the sharks, uninformed types will just jump on that one thing so - i dont' send that to friends or family. if any mention of psych causes at all is in an article. again, it's just my personal policy cuz i know the people i'm dealing with. but... that's it! i can't find one other down side here. i think we all may have gotten, well understandably ticked off & maybe overly used to picking things apart looking for the negative. maybe i'm naive, but i see this as nothing but great!
    "well informed (educated) & highly connected" i see as a great compliment, & a warning!
    :)
  7. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    I took "highly connected" to mean that we are connected in a meaningful way, that there is lots of interaction among us. As in, he might have perused this forum and other blogs besides Hillary's and has seen the sheer numbers of members and threads.

    Even a cursory glance here on PR would show someone that there is a lot of brain power and a lot of very connected people having significant conversations.

    I'm thin skinned enough to take offense where it might not be intended, and that phrase didn't strike me as a yuppie flu diss.

    FWIW ;-)

    Shelley
  8. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    not at all! it means we have computers & we use them. no, we have nothing better to do than learn about our illness - we can't do anything else. yes, we rely on each other for support - no one else will support us!
  9. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    I know what you mean serenity. Every time I read words like "once know as the yuppie flu..." I want to throw something. By propagating this stuff it's never really in the past.

    But practicality takes over as I don't have anything within reach that I absolutely don't need, so I refrain from throwing them. :Retro smile:

    Funny, I saw the warning in there as well.
  10. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    Maybe you're right; maybe it's just the mood I'm in at the moment. I hope so. It would be nice if the CDC would stop making subtle digs at the patient community. Maybe they have, and I just didn't recognize the change. That would be A-OK with me.
  11. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    thanks Otis!
    if this all comes out - & the psych stuff is over, then i will bitch endlessly about how they used to say it was all in my head. but for now, i dont' even send that stuff out. not until we have it gone completely.
    yes Ixchelkai, i know what you mean - i happen to be having a good day. i am aware that my mood is good today & perhaps that influnces what i see. when i sleep poorly, i know i take offense much more easily. but i happen to have gotten a good night's sleep & then woke to find this article that i am pretty much in love with :)
  12. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    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.
  13. SOC

    SOC Moderator and Senior Member

    Messages:
    4,959
    Likes:
    5,507
    USA
    :Sign Good Job:

    Well done!
  14. JAH

    JAH Senior Member

    Messages:
    216
    Likes:
    93
    San Jose
    I just emailed the article to my sister. When I had to type in the verification words (those distorted words you have to enter to send stuff), they were "fatigue Leaving"

    I'm not kidding,

    JAH
  15. Mya Symons

    Mya Symons Mya Symons

    Messages:
    827
    Likes:
    165
    Wyoming
    I still can't figure out this quote thing. I showed my son and asked him if reply with a quote meant a quote from a famous person. He is my go to IT guy. He had a good laugh and explained it to me and then I had a good laugh. I guess I am a "fossil" when it comes to computers.

    This is what you do with the reply quote button :)

    "According to the C.D.C., at least one million Americans are believed to have chronic fatigue syndrome, marked by disordered sleep, cognitive problems, headaches, joint pain and profound exhaustion. The illness has no known cause and has frequently been dismissed by doctors, researchers and the general public as psychosomatic or psychiatric in nature."

    I'm confused about this quote from the CDC--Wasn't it them who frequently dismissed this illness as psychosomatis or psychiatric in nature, and, therefore, everyone else did the same?

    I am a little bit or a lot a pessimist. I am wondering if the CDC isn't buttering us up so that it will be easier to dismiss us once again. I was thinking the other day--I wonder if the reason the CDC has not replicated the Whitmore Peterson results out of embarassment and nothing more. I think it takes a certain personality to make it through med school and rounds: a very confident one. Maybe they do not want to have to admit they may have been wrong so many years ago to save face in front of their peers. What a ridiculous reason that would be if it were true.

    My husband is the opposite of me--he is the optimist. He says we should have a confirmation in a few weeks. I really hope he is right.

    O.K. my quote did not come out highlighted likes everybody elses. What am I doing wrong?
  16. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    This is a reply with quote (click Reply With Quote button). It codes on the editor screen like this.
    HTML:
    [quote="Mya Symons, post: 113206"]O.K. my quote did not come out highlighted likes everybody elses.  What am I doing wrong?[/QUOTE]
    and looks like this in the post:
    This is a reply with quote when you remove the =Mya Symons;102284 section of the code before the wording you want to quote. It codes on the editor screen like this:
    HTML:
    [QUOTE]O.K. my quote did not come out highlighted likes everybody elses.  What am I doing wrong?[/QUOTE]
    and looks like this in the post.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,404
    Likes:
    4,134
    Sth Australia
    I thought that was a great article, the best we could probably hope for at this point of time.

    I feel like we've finally come to age with being recognised as a force now by the CDC. Interesting they didnt put any of their normal crap when they commented about the patient group, I think its the first time ive seen them comment without terms such as "hysterical" or the other terms deogerative (is that word right? im struggling to think) .. they often use for us.
  18. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    913
    Likes:
    325
    Brisbane, Aust
    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.
  19. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    Emailed it to London Times Health Editor
  20. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    Excellent points, rustyJ!

    Thank you,

    Sing

See more popular forum discussions.

Share This Page