Is it beneficial to engage with the BPS proponents?

[Trish]

I have doubts that it is beneficial.

The patients focus too much on what the BPS people are doing and thinking. I understand that it is traumatic to discover that a portion of society has such negative views and isn't interested in a respectful relationship with us.

We should be focusing more creating what we want and communicating effectively with society.

That is a valid view if BPS were not impacting people's lives right now. If it were simply a historic anomaly in a field well served now by good science and appropriate care for pwME.

Sadly we see, from things like Cochrane doubling down against evidence and multitudes of research papers taking an exercise rehab and psychotherapy approach to Long Covid, rhat we have a long way to go.

The only examples I've seen of light dawning for BPS believers is if they get ME/CFS themselves. And even there it's shaky and can turn against us, as we've seen with Garner.

 

[Pateo]

When I eventually found ME/CFS on the wwweb it was with such a shock/horror of recognition that I quickly closed the page and went into denial for, I think, about three years.
I finally found a sympathetic GP who agreed with my tentative self-diagnosis after many years of doing the rounds and being treated with scorn.
After all, I decided to find the answers for myself; was doing quite well and improving until Covid knocked me off the ladder and down the snake to square one. Three times. At least it didn't kill me. So it goes.

 

[Pateo]

Are there any examples of it being beneficial to engage with the BPS proponents? They seem to be doing whatever they want, no matter the evidence.

So if we can’t get them tø change their minds, what are the benefits?

Maybe that the patients’s perspectives are being shared in those circles, but even that seems to be able to be twisted to serve their purpose.

Getting someone feeding support would be beneficial, but would that not involve getting non-BPS people involved instead? The same for help at home. The BPS proponents won’t help if they think it’s harmful to help us, and they won’t stop thinking it’s harmful if they won’t change their minds.

I’m wondering if our efforts might be best spent trying to keep them out of the places that have not yet been affected, and trying to establish research and care outside the BPS sphere - so as far away as possible from their clinics, e.g. in hospitals under normal departments.

Part of that might be to continue to try to limit their influence on others through arguing against them and demonstrating to third parties that they are wrong.

Since we are almost, by definition, branded as incompent, ignorant losers who need to get a life there is no point whatsoever in "casting pearls before swine".
Stay away and do not feed the animals. Its worse than a simple waste of time.

 

[Sean]

That is a valid view if BPS were not impacting people's lives right now. If it were simply a historic anomaly in a field well served now by good science and appropriate care for pwME.

Sadly we see, from things like Cochrane doubling down against evidence and multitudes of research papers taking an exercise rehab and psychotherapy approach to Long Covid, rhat we have a long way to go.

Yep. We simply don't have the luxury of ignoring these views and their proponents. They are not on the fringe in the political power game, they have been and still are among the most powerful and influential of all.

Until that changes and they are sent to the fringe where they belong, we have to keep paying attention to their work and critiquing it.