Report on 2016 BACME conference

[Cinders66]

Ghastly. Just to point out some short term severe recover just through rest and TLC alone. Some long term entrenched severe see no improvement or actually just deteriorate through life's knocks despite micro managing every second, using every relaxation method around and trying to stay positive etc.

What IS not helpful is this illness, especially severe ME, being framed as mainly resting on beliefs and behaviour (the CBT model) and tweaking or encouraging changes in these aspects. For every 2 people you can drag up who got better from a CBT type approach is 2 more who attribute getting better to herbs and healing, 2 more who don't get better whatever etc. I'm sick of the same crap being rehashed by individuals (white etc) who don't even attend the uk medical ME conferences so why should I not see them as self interested and blinkered.

At least the slowness of any sort of improvement was recognised (and for severe ME able to rehabilitate we are talking if you can put one sock on one week, next week try 2) and also their success rate seemed to be "better than doing nothing" which after 20 years is poor surely?

 

[Cinders66]

"There is very little evidence for treatment for people with severe CFS/ME so the recently produced shared clinical practice document for severely affected will be very helpful."

Is anyone aware of this document? I know the BACME had talked about producing a severe ME one after their general one last year but I have not seen it.

 

[Esther12]

Is anyone aware of this document? I know the BACME had talked about producing a severe ME one after their general one last year but I have not seen it.

Their website has been down for quite some time.

 

[alex3619]

I know what you mean, but I suspect philosophers would argue that they don't recognise this nonsense either.

Philosophy requires sound reasoning and demonstration of premises. What they are doing is bad philosophy. The reasoning is often unsound, and the premises are often speculations.

 

[Invisible Woman]

"..taking personal responsibility for their own health condition was a crucial factor in making positive change..."

Excuse me?

Quick straw pole here: Is there anyone reading this thread who has not had to take personal responsibility for their own health?

This is rubbish - we have no choice but to take responsibility - many don't have access to a doctor who knows a thing about it.

Just because you're taking responsibility doesn't mean you can magically cure yourself, it just means that you learn to manage the condition better. And for most of us that would mean steering well clear of the type of codology peddled at this conference.

 

[sarah darwins]

"..taking personal responsibility for their own health condition was a crucial factor in making positive change..."

Excuse me?

Quick straw pole here: Is there anyone reading this thread who has not had to take personal responsibility for their own health?

Moving back to the UK a few years ago and learning about these twerps forced me to take responsibility for my own health by avoiding the NHS as much as possible and seeing a doctor privately. Is that what they mean?

 

[Aurator]

For some people, recovery may Not mean a return to previous lifestyles, if this contributed to them becoming ill in the first place."

What kind of logic is going on there? How can your chances of a post-recovery return to a previous lifestyle be dependent on whether that lifestyle made you ill? And how do you know whether it was a previous lifestyle that contributed to making you ill - what aspects of a person's life do and don't constitute their lifestyle, and in what way are the ones that do meaningfully measurable in terms of their beneficial or harmful effects?

Alcoholism/drug addiction would clearly be harmful to some extent, (though they are not linked even statistically, afaik, with getting ME/CFS), but we're still left with the question of why or how someone would be prevented from returning to alcoholism or drug addiction, for example, simply because this contributed to whatever illness they went on to develop.

How does this gibberish get the official stamp of approval? A child could think more clearly than this.