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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Phoenix Rising makes it to Pubmed!

Invisible Woman

Senior Member
Messages
1,267
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?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
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?

and vicious tyrants don't like resistance movements....
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
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!
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
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!

Yeah, that's total crap. I have learned of supplements to consider. Heard about Oxygen to help as well. Probably heard of LDN 1st on this site.

I do better than most, and stick around to offer any insight I might have. And to stay abreast of the more recent news and try to help with advocacy!

GG
 

A.B.

Senior Member
Messages
3,780
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!

All roads lead to Rome. And all psychosocial narratives lead to patients being portrayed as needing therapists. They secretly dream about controlling the lives of vulnerable patients.