An Indefatigable Debate Over Chronic Fatigue Syndrome Science Virology 2010 01 15

[flybro]

Thank you Maatern Maartensz,

brilliantly put, and oh so true.

How many years does one behave reasonably and politley for?

How absurd that our reasonable, polite rationality is greeted with, ignorant, irrational, degrading disinterest.

Polite and rational is what happens before you get too smacked about by ignorant, irrational, degrading disinterest.

How many more years for this shocking reality to be unchallenged by the media, by the physicians and by our governments.

The only polite thing left for us to do, is go away and die quietly. All other forms off polite, scientific, rational requests have been tried, repeatedly, by many for years and years.

 

[fresh_eyes]

Hi Kelly, welcome. Much of what you say makes sense, but you lost me here:

...most journalists aren't aware that competing interests include ideology.

I'd venture to say that everyone with a decent education is aware that competing interests - in any arena - include ideology. The notion that this is not the case for journalists just doesn't make any sense.

 

[CJB]

<s>
Now, the evil or stupid things others do does not justify that one be evil or stupid oneself, but there really is a serious problem:

How to deal with unreasonable or irrational people, including journalists, bureaucrats and medical doctors?

And if, as you say, it is "human nature" to be unreasonable or to draw false conclusions from evidence, why should I or other people play by the rules as if that were the reasonable and fair thing to do, simply to avoid being labelled adversely?

Anyway: I HAVE been polite and factual and I HAVE used citations when trying to prove a point, and while I DO agree those are nice and proper tactics, at least when speaking to nominally rational people like mathematicians and physicists and people with an IQ over 130, which is what most journalists, most bureaucrats and indeed most doctors do NOT have, I was not answered and was studiously disregarded by journalists, bureaucrats, and medical and psychological folks, while the impolite non-factual and unfounded accusations of people with ME by journalists and psychiatrists - "Yuppi-flue! All in the head! Malingerers! Frauds!" - have been in the papers now for over 30 years that I know of (indeed with a few rare and great exceptions like Hillary Johnson).

So... while your recommendations are nice (and a bit run of the mill), I am afraid most people who are polite, friendly and kind, and quote authorities, won't be heard either, if they write about ME. (Hillary Johnson also fails horribly by your strictures.)

Well... by now it seems to me much more important to first get a public hearing and be publicly recognized, politely or impolitely, rationally or irrationally, and then play it from there, instead of being polite and crawling Mr Niceguy to all manner of journalists who don't have a hundredth part of my knowledge of science, and 40 or more IQ-points less, but who nevertheless determine what manner of hearing a patient with ME will (not) get depending on the niceness and humility and politeness of one's prose. I simply ran for thirty years into a conspiracy of silence, of incompetencen and of indifference, all backed up by continuing insistence that *I* ought to be polite, normal, not complain too loudly, and anyway better shut up or visit a psychiatrist, if I wanted help or be heard.<s>

:victory:

 

[CJB]

As a journalist I would respectfully disagree. Mr. Kean did his job and he did it quite well given that like most journalists he is not up on all the myriad nuances of the issues surrounding CFS. Most patients don't even know half of the history or science - it is not reasonable to expect someone who writes many articles a week on a wide range of issues in health, science and medicine to be an in-depth expert on any or all of them. How much did you know about CFS prior to becoming ill if you are a patient? This was a short article not War and Peace. <s>

I'm sorry, but I strongly disagree. It's a journalists job to dig down -- not to whip something into print to fill a void. If you don't dig down and get to the facts and the nuances, you really can't call yourself a journalist. This results in lightweight, misleading reporting that got us into this mess in the first place. Yuppie flu my ass.

 

[Kelly]

Guess I'll just have to take my little 'ol Mensa level IQ and find another job. I actually have interviewed many of the researchers in the field as well a number of patients. How's that hole in your foot working for you?

 

[Kelly]

Since this was a less insulting post I'll answer.

As I sure you know, and I'm sure you follow it closely, hundreds of newspapers have cut staff, eliminated their health and medicine beats and even closed their doors in the past two years. No matter where you work, the fewer people there are to do a job, the more that is piled on them. Yes, most journalists would agree that in the current situation they are spread far too thin to do the kind of job they want to do. It doesn't make them bad reporters, just ones who don't have enough time in a day or resources to do their work. I understand that it's not your world, but then CFS isn't theirs.

I understand that you disagree, but it doesn't change reality. I'll repeat. Mr. Kean followed strict protocols and did his job. Not liking it does not mean it was a poor job or biased.

 

[Kelly]

Hello Kelly,



Also Kelly, since you are a journalist, and I like to indulge in positive recommendations as well: I think it may be a good idea to make a good interview with a person like DrYes - who has ME and knows science - on what it is like to have ME, and on what may explain it, and get that published in a quality-paper.

Guess I'll just have to take my little 'ol Mensa level IQ and find another job. Ms. Johnson did a good investigative piece in the 1990s. She now acts as a political activist not a journalist.

Since you asked so politely, I actually have interviewed many of the researchers in the field as well a number of patients - one of whom is in the Nevada XMRV cohort. None of them went by Yes.

 

[Kelly]

I'm sorry, but I strongly disagree. It's a journalists job to dig down -- not to whip something into print to fill a void. If you don't dig down and get to the facts and the nuances, you really can't call yourself a journalist. This results in lightweight, misleading reporting that got us into this mess in the first place. Yuppie flu my ass.

Since this was a less insulting post I'll answer.

As I sure you know, and I'm sure you follow it closely, hundreds of newspapers have cut staff, eliminated their health and medicine beats and even closed their doors in the past two years. No matter where you work, the fewer people there are to do a job, the more that is piled on them. Yes, most journalists would agree that in the current situation they are spread far too thin to do the kind of job they want to do. It doesn't make them bad reporters, just ones who don't have enough time in a day or resources to do their work. I understand that it's not your world, but then CFS isn't theirs.

I understand that you disagree, but it doesn't change reality. I'll repeat. Mr. Kean followed strict protocols and did his job. Not liking it does not mean it was a poor job or biased. As for "yuppie flu" blame that on a copy editor - you of course understand the difference.

 

[Kelly]

Hi Kelly, welcome. Much of what you say makes sense, but you lost me here:



I'd venture to say that everyone with a decent education is aware that competing interests - in any arena - include ideology. The notion that this is not the case for journalists just doesn't make any sense.

Can't say as I disagree, but there are nuances that are too extensive for such a board.

 

[Esther12]

Slightly OT, but I think a lot of people on this board have slightly misplaced expectations as to how they are to be treated. This might not be especially relevant to this thread, but it’s close enough to the current discussion that I might slide it in.

It's not fair, but the weak and ill are often going to be treated badly. You can get angry about that, and it would be fair to do so, but to many of those in positions of power your anger will seem faintly amusing. We’re not seen as equals, our hardships are seen as insignificant, and the way we’re treated unimportant. Our outrage at this can come across as like a petulent child’s temper-tantrum.

I don’t think we should just accept this, but I do think that we need to be aware that this is how things currently are and that pretending otherwise will just weaken our ability to communicate. From my reading of blogs, comments on articles, etc, since the XMRV news, it really seems that the responses of CFS patients are serving to turn some of those previously uninterested in CFS against us. I wouldn’t bother. Anger and outrage, even when justified, are unlikely to gain new allies.

It’s not fair that we have to show such control, but I think it is the way things are. I was just reading the minutes of the December Parliamentary committee on CFS, and the way in which politicians felt able to blame patients and their support groups for the failure of the NHS and benefits service was disgusting, but that’s the way things are. CFS is a complicated topic, full of the sort of injustices and hardships people will want to avoid taking responsibility for – if we give them any excuse, they’ll take it.

I don’t want people to think I’m telling others how to behave or write, I’m not. We’re all free to behave as we’d like, but I do think we should be thinking about what approach will best serve our interests. I could be wrong, and we should be upping the anger, accusations and fury, but I don’t think this is the case.

Anyway, I thought the piece in Science was okay. I wish they’d let me write a piece rallying against all the problems there are with CFS research, but I’m not surprised that they did not.

PS - another thing is that, if there are nine super-reasonable, calm, persuasive CFS patients, and one CFS patient who gets caught up in their anger, it's the angry one that will be remembered and that other commentators will choose to reply to.

 

[usedtobeperkytina]

First off, I think Kelly and I are commenting on our knowledge of journalism in the US. As has been stated on another thread, European journalists tend too have slightly different standards. So the comment derailing the news media treatment of CFS seems to be from experiences with European journalists.

Second, I don't think it is quite fair to blame the journalists for the treatment of CFS in the 1980s. Fact of the matter, the authority on the matter was the CDC, and we all know what they said. To not go to the CDC for explanations would be bad journalists. And if the CDC couldn't figure out the illness was organic, how can we expect journalists from the outside to know it? The fact of the matter is that we have a complex illness with no visible signs and for decades no consistent objective biological abnormality except reactivated EB. It left a lot of room for varying opinions, even among experts. And don't get mad at the media for "yuppie flu" moniker. They also labeled H1N1 as Swine Flu. And that was wrong. CDC officials were associating the illness with the lifestyle of people in an affluent area, along with their personality. Not the journalists fault, the CDC was doing that. So it got a made up label based on what the officials were saying about it. And some journalists went deeper and saw the truth.

While the poster is praising Hillary Johnson, a few things need to be known: Number one- she has the illness. So her ability to know it and report on it is much different from someone approaching it from the outside, trying to be fair. Number two- while her book is certainly a great achievement in exposing the problems and chronicling the CFS history, it can't be considered an example of unbiased journalism. I am not criticizing. It was a book, not a newspaper article. And for those who don't know, a magazine article has different standards than a newspaper article.


Folks, the fact of the matter is this, you are not going to take away the power of the media. They are the fourth estate. Therefore, do you want to win them over or alienate them? Do you want to convince them you are suffering from a neuroimmune disease or do you want them to think you have emotional problems? You won't win a war against the news media.

And remember, most journalists honestly do want to be fair and accurate. That is why they went into the business. Yes, they fail, but they are not out to destroy the sick people.

When I had the small city newspaper, the local mayor did not like my news reports. He was very controlling. He tried everything short of suing me on baseless grounds, withdrawing my business license or levying a special newspaper tax, or breaking my legs. He insulted me privately. He criticized me publicly. He refused to answer any of my questions. He used public funds to start a competition publication and offered free advertisement to local businesses. This went on for three years. But what happened? He was voted out of office. And I still reported on what he said in public meetings. I got more information from others in the city. I still did a good job without his help. And he turned everyone against him with his obvious strong arm tactics to take over the role of the news media. Being mayor wasn't good enough.

It's like a local business owner said he told him at the time, "You don't get into a battle with someone who buys their ink by he barrel." I have not known anyone who ended up in a power struggle with the news media and winning.

Another politician, a state legislator, said he wanted to talk to the mayor and explain that for years as a union representative, he was only able to change things by using the news media.

Not that there isn't bad journalists. And I cringe when I see it because it reflects badly on my profession. But, the overall industry, in the US, is still serving the public's interest well.

Tina

 

[Martlet]

Guess I'll just have to take my little 'ol Mensa level IQ and find another job. Ms. Johnson did a good investigative piece in the 1990s. She now acts as a political activist not a journalist.

Since you asked so politely, I actually have interviewed many of the researchers in the field as well a number of patients - one of whom is in the Nevada XMRV cohort. None of them went by Yes.

Kelly, there is no need for this level of rudeness.

 

[kwietsol]

Kelly, there is no need for this level of rudeness.

Thank you, Martlet. And thank you, all moderators, for keeping this forum a peaceful, enjoyable place to visit.