Welcome to Phoenix Rising!
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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Well... it's hard to know.
Things have moved forward. 20 years ago pwME were told not to contact patient groups. When patients were involved / in contact with other pwME this was considered to be a perpetuating factor in their condition and meant that they were less likely to recover.
My own opinion is that "they" didn't want us talking to each other as the more we learned the less likely we were to believe the psychobabble BS.
This abstract doesn't comment on that (which might be good in itself). Perhaps we've moved on a little?
The belief is that you come to rely on your online friendships in the forum and then there is no incentive for a person to want to get better from their illness. This doesn't just apply to CFS/ME. I've also read this about breast cancer survivors. Absolute nonsense!Well... it's hard to know.
Things have moved forward. 20 years ago pwME were told not to contact patient groups. When patients were involved / in contact with other pwME this was considered to be a perpetuating factor in their condition and meant that they were less likely to recover.
My own opinion is that "they" didn't want us talking to each other as the more we learned the less likely we were to believe the psychobabble BS.
This abstract doesn't comment on that (which might be good in itself). Perhaps we've moved on a little?
The belief is that you come to rely on your online friendships in the forum and then there is no incentive for a person to want to get better from their illness. This doesn't just apply to CFS/ME. I've also read this about breast cancer survivors. Absolute nonsense!
The belief is that you come to rely on your online friendships in the forum and then there is no incentive for a person to want to get better from their illness. This doesn't just apply to CFS/ME. I've also read this about breast cancer survivors. Absolute nonsense!