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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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.
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.
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.
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.
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.
Recently, he [Brian Vagstag] started dating a woman who also suffers from the disease. “We do nothing together, all the time,” he said.
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.
Is there a report button? That would be useful.
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.
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"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
Agree.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.