• 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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A PR member managed to get the attention of the head of the WHO on Twitter!

Murph

:)
Messages
1,799
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big shout out to @Simon !!

Hopefully we hear more about the follow-up.
 

Mouse girl

Senior Member
Messages
582
Being a cynic about this, and not being able to underestimate the ability of Drs to dismiss long-haul COVID as adroitly as they have ME, I won't be waiting standing up ..... :wide-eyed::wide-eyed: :meh: :bang-head::bang-head::bang-head::bang-head:

yeah, not to be debbie downer, but yes, I'm sure that once the covid thing is solved with vaccines. Well, we hope it can be. But, once people won't fear getting sick themselves, no one will care about chronic patients. But, still, there is such massive, world wide funding to study covid, that they will reap loads of info on these severe life altering chronic conditions. Considering that I think it's.....3 to 6% of the general public have the genes to develop cfs/me from pathogens over time, so, it would only make sence that covid will be the catalyst for cfs/me in many people. We shall see what happens if anything. It is very interesting though and good to see in the news regarding chronic patients.
 

wabi-sabi

Senior Member
Messages
1,489
Location
small town midwest
@Mouse girl
BPS stands for biopsychosocial, which is not evil in and of itself. In relation to ME/CFS it means that we are sick because of false beliefs and deconditioning. The BPS people say explain ME/CFS thusly: we got mono (or some other random thing) naturally we felt awful for a long while and got very out of shape. When we tried to get in shape again it hurt, and we mistook this couch potato to 5K pain as a sign that we were still sick. Then we got more out of shape because we were afraid of the pain of getting back in shape and gradually worked ourselves into a tizzy of thinking we had a "real illness" instead of merely being out of shape and afraid to exercise our way out of it. In short, we are malingering hypochondriacs, but are too stubborn (or delusional) to admit it.

Some of us have managed to (falsely) convince our family and friends we are sick. They support our delusions and take care of us, merely maintaining our fantasies of illness and supporting us in being out of shape. Children in the UK are sometimes taken from their parents under this delusion. Sometimes the children are very seriously harmed by being forced to exercise themselves back to health.

Properly applied the BPS model acknowledges that an illness has social and pyschological consequences for its sufferers. Improperly applied, as it is to us, it suggests that a person can think themselves sick and that our thoughts and our social milieu interact to keep us sick. When it comes to ME/CFS, the BPS people happily forget about the bio part of the equation and misunderstand the psycho and social aspects. They insist on treating us with psychiatric interventions that are at best useless, and at worst, quite harmful.

See the work of David Tuller at the Virology blog https://www.virology.ws/ for a description of BPS research and the ways he is trying to fight them and protect us.