Hello Orla,
 

Quote Originally Posted by Orla View Post
Honest discussion impossible with psychologisers

I think the idea is unworkable for many reasons. For starters they will not treat us like equals. They never do. Some might be happy to get yet another forum to promote their ideas, but they will exit, or distance themselves,as soon as people start asking awkward questions, start pointing out inconsistencies in their positions, flaws in their ideas, start pushing them to really answer questions they are skirting around etc. Ths happens again and again with these people as I have known others to try to debate with them over the years.

I have also experienced people, who were obviously taken in by these quacks, to act essentially as mouth pieces for them, which is sad to watch, and can be very destructive in a forum. This would likely be their method of communication of choice, filter what questions they want to answer, seem like they are answering, or seem like they are saying something when they are saying the opposite, avoid answering questions, ignore cetain people, undermine critics, play the victim and so on.

If people want to know what these people think then just look at their words and their actions. There is no substitute evidence, and no short-cut to going around just seeing what they say and do. The evidence is there for the examining. It is important as well to read critiques of their ideas, as otherwise some flaws can be missed, or even if someone knows they are talking nonsense, it can be useful to see concrete evidence against their ideas.

There is no mystery to what CBT is, just look at a psychology book or information from CBT associations. We don't need to ask these basic questions. As for those who promote CBT for ME/CFS, again this information is in the public domain. Though I do think there can be something of a difference in the US and UK in this regard, but this gap will lessen if the Peter White's of this world get their way.

No matter how tempted we might be to try to put a positive spin on their ideas, or try to convince ourself that they are not just off-the-wall and can be reasoned with, it all comes back to the evidence on the ground, how people are treated, and the lack of biomedical research and treatment. This is the result of definite policy and not some accident of history.

There is no common ground with these people, either you think we are all nuts and imagining we are sick when we are not, or you don't. These people need to be opposed and got rid of, because while they have any power they will oppose us as they have done very successfully until now. They may pretend to try to reach common ground, but they do not budge and inch from their position, so any attempts to reach common ground will only result in PWME/CFS moving towards the psychologising position rather than vice versa.

This has happened in the UK with groups or individuals who tried this approach essentially ended up being co-opted into the psycho-social view of this illness. Interestingly, though the psychologisers might pretend to be trying to reach common ground, or listening to the patients, they are very prepared to undermine even the groups they are "working with" publicly. If they are prepared to do this publicly, they will do it even more in the board rooms, committees etc.

Why waste energy trying to move the immovable, who are not biomedical clinicians so who cannot come up with good treatments anyway, when so much work needs to be done? For example: educating the less stubborn/ideologically committed doctors and researchers; raising money for research; general awareness raising; helping patients with difficulties with housing, welfare etc.; and publicly opposing what these people stand for when possible (e.g. by responding to bad or misleading article, and responding to good coverage in order to encourage it).

I think before people bend over backwards to accommodate those who would seek to frankly destroy our lives, surely helping those who really need it, and helping those who would like to support us, should come first?

Orla

Very well put - but that is also why I argued for doing it ourselves, somewhat systematically, also (in part, perhaps) in the context of The Church of False Illness Beliefs to keep it readable and fun.

Let's not let these cretins define terms ad libitum !

Best regards,

Maarten.