Big news piece: Chronic Fatigue Syndrome Patients Push for an Elusive Cure

[Sasha]

Thanks to all the people who have put good comments on that article. Well worth doing.

 

[alex3619]

Update

Clearly Olga or someone at Atlantic has been listening:

New title:
The Tragic Neglect of Chronic Fatigue Syndrome

most of the references are now to 'chronic fatigue syndrome' rather than chronic fatigue, so it looks like someone has been busy.

It goes to show that much of the misreporting is not due to malice or prejudice, just how pervasive the misinformation and ignorance are. So many sources a journalist might check to confirm a story, or get background, might just keep misinforming them.

 

[Sidereal]

Many of the comments in the comment section are horrifying.

 

[Sasha]

Many of the comments in the comment section are horrifying.

Many of the comments in the comments section seem to be from just a couple of people and they may be persistently posting because people are responding and feeding them with attention. They want to goad people into responding and it's working, so they're doing more of it and they're taking over the comments section.

I think it's best to ignore trolls and idiots. It's easily possible to address their arguments without hitting the 'reply' button to their message or without addressing them by name.

They're just stick-poking kids. It's not possible to convince them of anything and even if it was, they'd never lose face and admit it. We should ignore them completely and just say the important, serious things that need to be said.

 

[Large Donner]

Many of the comments in the comments section seem to be from just a couple of people and they may be persistently posting because people are responding and feeding them with attention. They want to goad people into responding and it's working, so they're doing more of it and they're taking over the comments section.

I think it's best to ignore trolls and idiots. It's easily possible to address their arguments without hitting the 'reply' button to their message or without addressing them by name.

They're just stick-poking kids. It's not possible to convince them of anything and even if it was, they'd never lose face and admit it. We should ignore them completely and just say the important, serious things that need to be said.

Yes! Here, here!! Absolutely!!!

Having said that I'm going over there right now for a war with them, I cant stand it when someone is wrong on the internet.



.......I decided to order Pizza with that generic custard cheese stuff instead and wash it down with aspartame!!

 

[Esther12]

I thought some of the responses to shitty comments were good: calm, cautious and informed. Those comments can only be helpful imo. Some people can be attracted to drama and it's best not to give it to them, but I don't think that means it's a bad idea to respond to any of the unreasonable stuff posted about CFS.

 

[jimells]

If there is going to be a followup article on the name controversy maybe they are investigating exactly who has been pulling the strings for the past 30 years. I'm very sure there is a juicy story involving corruption and undue influence, if anyone will seriously look.

 

[Snowdrop]

I thought some of the responses to shitty comments were good: calm, cautious and informed. Those comments can only be helpful imo. Some people can be attracted to drama and it's best not to give it to them, but I don't think that means it's a bad idea to respond to any of the unreasonable stuff posted about CFS.

Why the need to respond and highlight their idiot opinions when you can simply post a comment that addresses issues and clears up any misconceptions for the reader without referring back to something vile.

 

[Snowdrop]

If there is going to be a followup article on the name controversy maybe they are investigating exactly who has been pulling the strings for the past 30 years. I'm very sure there is a juicy story involving corruption and undue influence, if anyone will seriously look.

Yes, and that story is all laid out in a document by Mary Dimmock. It's quite long and thorough and can be found in my signature.

 

[Sasha]

I thought some of the responses to shitty comments were good: calm, cautious and informed. Those comments can only be helpful imo. Some people can be attracted to drama and it's best not to give it to them, but I don't think that means it's a bad idea to respond to any of the unreasonable stuff posted about CFS.

I also thought that there were some really excellent responses to some of the shitty comments but the problem with a direct response to a shitty comment is that it rewards the troll/idiot with attention and they produce more shitty comments and the whole thread goes down the pan.

Also, other well-intentioned people who are not as skilled in responding calmly will see others responding and will try to join in the effort but because they're not as good at it, will post badly and will get riled and start hurling insults and there we are again, down the pan.

Anyone with any sense (I'm sure) can see that the troll/idiot is a troll/idiot but it's unpleasant and offputting to have to wade through their dreck and I think it puts people off both reading the comments and making comments of their own. And it leaves a bad impression overall.

Responding to a point without responding to a person is much more effective, I think.

 

[Snowdrop]

Yes, it encourages them to have someone respond and then when ill people read it it gets them upset. Some people can't deal with it. And then it all goes down hill. I haven't been to the article site. Is there a report button? That would be useful.

It is unfortunate when the media site doesn't patrol the site for trolls. The other thing that might work is to simply call them out.
Hey we've got a troll lol. And then carry on with constructive commenting.

 

[jimells]

Recently, he [Brian Vagstag] started dating a woman who also suffers from the disease. “We do nothing together, all the time,” he said.

 

[Sasha]

Yes, it encourages them to have someone respond and then when ill people read it it gets them upset. Some people can't deal with it.

This is another issue: some PWME can't hack the stress of reading angry conflict. I couldn't, when I first came to the forum and there was a well-intentioned member (no longer posting) who used to get into big arguments with people and I couldn't bear it. As soon as that member started posting on a thread, I would abandon that thread.

Is there a report button? That would be useful.

Unfortunately there isn't or I'd have been all over it!

The other thing that might work is to simply call them out.
Hey we've got a troll lol. And then carry on with constructive commenting.

I would honestly not even do that because that's also showing them that they can upset people and provoke a reaction. I think the best thing to do is just to act as though they're invisible, and just talk over their heads to the grown-ups.

 

[panckage]

"devote a pot of money - they believe $250 million is realistic"(??? Is it me or do PWME sound unrealistically greedy?)

That's the way it sounds when the author quotes the number . I believe the number comes from how much CFS should be funded if it were to have funding equity with ALS and other diseases. I think it is also contains a retroactive amount as well. It would have been awesome if the author had mentioned this. Journalism is all about creating controversy these days so it's not surprising that factoid was left out

 

[Sasha]

That's the way it sounds when the author quotes the number . I believe the number comes from how much CFS should be funded if it were to have funding equity with ALS and other diseases. I think it is also contains a retroactive amount as well. It would have been awesome if the author had mentioned this. Journalism is all about creating controversy these days so it's not surprising that factoid was left out

I think it's in relation to MS on a per-patient basis and contains no retroactive amount.

 

[duncan]

My problem was strictly with the wording, with the possible misapplication of a colloquialism here or there - never with the amount. Devote "a pot" of money? Perhaps not the best choice of words - to some it may connote a large sum, usually used or gotten irresponsibly or even illicitly. And then "they believe $250 million is realistic"; the possible inference here is we are not a realistic group at all...and by extension, we may not be realistic about a number of things. I could almost hear a snicker: They think THAT is realistic?

Of course, that is just my reading. We all interpret differently.

 

[Forbin]

Does this mean that I shouldn't use my favorite retort to trolls: "When are your parents coming to pick you up?"

 

[Sean]

Many of the comments in the comments section seem to be from just a couple of people and they may be persistently posting because people are responding and feeding them with attention. They want to goad people into responding and it's working, so they're doing more of it and they're taking over the comments section.

I think it's best to ignore trolls and idiots. It's easily possible to address their arguments without hitting the 'reply' button to their message or without addressing them by name.

They're just stick-poking kids. It's not possible to convince them of anything and even if it was, they'd never lose face and admit it. We should ignore them completely and just say the important, serious things that need to be said.

Agree.

Respond to any points worth responding to, correct any important factual errors (preferably with a reference or two to back your claim). But don't respond to them directly or even acknowledge their existence.

These people are obnoxious narcissistic immature brats, who have no intention at all of engaging in an honest, open minded, evidence based discussion, and they not worth wasting your precious time & energy on.

They are doing it for no other reason to feel important, to feel like they can influence other people. Their particular psychopathology is that they can't do it in a good productive way, so they they do it in a dirty destructive way by trying to drag the rest of us down into their psychological & ethical cesspit.

Don't fall for it. Rise above it. Just ignore them.

Once they realise they are not getting the desired responses, they will either get bored and move on, or they will try to escalate the situation by making ever more ludicrous, outrageous, and provocative statements.

Either way, just keep ignoring them.

 

[Esther12]

I reckon that if the people making good responses fail to do so, then we'll just be left with people making slightly weaker and more upset responses - which is more likely to be fun for anyone looking for a reaction. CFS articles can attract smug and thoughtless 'skeptics', and calmly pointing out to these people that they've not thought things through properly is helpful imo. I'm pretty much always in favour of trying to argue things out though (in theory, even if I'm sometimes to lazy in practice).

 

[Snowdrop]

I think you're missing the point that trolls don't listen to reason. They just don't. There is no point to the attempt. You don't achieve anything and they get attention. It's a lose/win where you lose they win scenario.
Again, you can make good points for readers to read without having to respond to trolls.