JoanDublin
Senior Member
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- Dublin, Ireland
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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They also claim that NICE recommends less supportive behavior from significant others
Alison Wearden is an entrenched member of the BPS (psychosomatic) school of thought regarding ME/CFS. In this study they were expecting that empathy (High-EE-EOI/HEE-EOI) from partners and parents of ME patients would make us sicker, since there's some old crap from the pals claiming as much, though I think lacking much (any?) basis.
Instead they found that critical (High-EE-C/HEE-C) partners and parents make ME/CFS patients more depressed. Like, duh Though they seem to be overstating things quite a bit in the abstract by not distinguishing between critical and "overly" helpful partners and patients, and simply saying that HEE causes worse problems.
They talk to patients, but they don't really listen to them. Their internal delusions are drowning out everything the patient says.If they actually sat down and listened to a few patients they would never have gotten this bizarre idea that supportive friends and family make the situation worse. Or maybe they did listen but operate under the assumption that whatever the patient says must be wrong.
Of course much of this fails to explain anything about the outcomes of many PWC who don't live with significant others.