Special Report - Online activists are silencing us, scientists say Reuters March 2019

Could you make use of ThreadReaderApp?

https://techcrunch.com/2018/01/04/thread-reader-app-twitter/

 

Are you sure you dont want to go on twitter. You can argue all day long there.

 

Bang on. When my wife went to see a specialist we were lucky, because (I only much later realised) he had no hidden agenda, just doing what all clinicians are supposed to strive for - whatever is best for their patient. After spending a lot of time talking things through with my wife (she had already had the exclusions investigations done), he basically told us that there was nothing he could do because my wife was already doing what he would have advised anyway. He offered that advice very kindly and respectfully I would add. There is absolutely no doubt in my mind, that if ME could be cured by pwME pushing themselves hard but within sane limits, then my wife would have been fully cured a long time back. And from what I see from people here, she is pretty typical.

 

I think the mistake is to think that a condition is either psychiatric or neurological. By definition all psychiatric conditions are also neurological.

And paranoid psychosis is not a symptom. It is a recognised pattern of disordered brain function manifest as patterns of behaviour, just as diabetes is a recognised pattern of metabolic dysfunction. In the absence of any known neurological basis it is treated pragmatically in terms of the pattern of dysfunction. And it is the diagnosis, in as much as 'a diagnosis' is a clearly defined category. The symptom (or sign), if you like, is paranoia and paranoia also occurs in dementia and other contexts.

You make fair points though and I guess the ultimate message is that all these concepts are slippery. We just have to be careful not to use them in ways that do not help.

 

You don't want me on twitter, I can assure you, and nor do I. There are times when I need the gentle but firm hand of S4ME moderators. Best not to put a loose cannon in a china shop.

 

If CBT and GET worked, there actually would not even have been a need to develop them since the vast majority of us tried that naturally, in most cases pretty much the first thing we tried other than severe patients.

I also think this is very cogent. One thing PACE probably tells us (and SMILE) is that whether or not any of these approaches help, it does not matter a jot which way you do it. So it seems pretty certain that people could have done it for themselves.

 

Wow, I've really taken to Laura Elliott.

 

Yes, me too. She apparently put together an article/reply and has been pitching it to the bigger papers/outlets, but will publish on medium tomorrow if no one picks it up. Judging by her twitter threads I feel pretty confident that an article from her would be a good thing.

 

If only MS and SW had the same level of self awareness .

 

I said that without moving my lips!

 

Absolutely. It is, as always, far too easy to tar everyone with the same brush, when many are truly decent dedicated and highly competent professionals. I would have thought they might find much of this deeply embarrassing, or at least will one day once the realise what is going on.

 

Now THAT'S astute.

 

For me it is really not complicated. Applying clinical treatments to an illness, on the basis that it is a different illness (deconditioning perpetuated by unhelpful beliefs, in our case), is just plain wrong, full stop. Anything else is just a distraction from this.

 

@Forestvon, it was both.

 

100% this. Also, if we give the impression of stigmatising mental illness it opens us to the charge of opposing BPS-based treatments because we ourselves don't want that stigma. There should be no stigma or shame in mental illness; my objection to BPS approaches is solely due to lack of efficacy. If, for example, somebody demonstrated tomorrow that anti-psychotics would remove all of my ME/CFS symptoms, I'd neck them like candy and be thrilled doing so.

 

What on earth is going on?

Dr Mark Porter now has a piece in The Times: https://www.thetimes.co.uk/article/...ue-syndrome-is-a-complicated-matter-28f7xcsgt

Anyone fancy a game of whack-a-mole?

I've reached my article limit, so can't access it.

 

Glad I didn't waste my second free article on Rod Liddle, so I can read this now .

 

What a bland article written in a well-meaning but clueless tone. Doesn't distinguish between chronic fatigue / chronic fatigue syndrome. A few excerpts to give the flavour:

Ok, I'll try to have five minutes' rest every hour, and avoid the temptation of having a lie in if I feel tired. Thanks.

I hope an article worth reading doesn't turn up in the Times this week because I've used up my two free articles now. Somehow I don't think it's going to be a problem.

 

This tweet is from the sister of the boss of the SMC. It looks like assistance in antagonizing/trolling to try to sustain the dying false narrative.

https://twitter.com/user/status/1107681142570913794

 

So according to Mark Porter anyone writing on the subject needs a thick skin to cope with the feedback. Ye Gods!* How are all these people so unaware, so satisfied with pontificating about subjects on which they can't even be bothered to find out more. And it's not about them and their thick skins or lack of them! Nobody, not one journalist has bothered to talk to anyone except Sharpe and people on his safe list.

* I'm fumbling about in the very bottom of the swear bag to avoid being moderated. eta din't know ye gods was in there!