IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

@Trish

I know you don't live in Tower Hamlets @Trish .

Just an example of what can be done.

EDIT:1) crossposted with above. Who knows what is provided or done? Especially for ME. 2) if it were me, I might enquire.

 

We turned up to s paediatric appointment in a wheelchair and this was noted.

At the previous appointment we could not get parked anywhere close to the entrance and my daughter had " palpitations" that evening - she thought she was having a heart attack. As my aunt had experienced this on several occasions and no cardiac issues found, i could calm her down. Hence the use of wheelchair ( loaned frm red cross) for the next visit. I explained what had happened, slightly confused look for a response.

For our sign off visit we did not use aids and got a smile. Duly noted in the follow up letter that a wheelchsir was not used.
Felt very much like a ticky box parameter.

 

I think its more observable that they claim the tested treatments work on all criterias of ME to maximize bums on seats in their clinics by using "evidence based treatments" from their poorly designed trials.

When a stage hypnotist or a psychic medium recruits from an audience is he going to bring people on the stage who have seen the bullshit already?

 

So far as ME is concerned and all those associated with it, yes no definitely a very good thing.

Edit: Got my logic frack to bont, so tweaked.

 

Agreed, it's about evening out energy usage to avoid/minimise the deep troughs, which crucially includes look-ahead perception to slow down/stop before it's too late, given the inevitable delay between cause and effect.

 

There is a bit of discussion now.

One personk thinks that PACE results are hard to ignore, that CBT over Skype could be the norm for future studies, and that there should be a CBT/GET trial for severely affected (he has not heard of FINE apparently).

The other person thinks most of the PACE criticism doesn't make sense.

Please do not disturb the PACE apologists in their natural habitat, they are a rare breed and easily startled.

 

Oh well, Valentijn has posted. Let's hope they are not too startled.

 

Oh the poor things won't know what's hit them, poor lambs.

 

When startled, they are likely to emit various alarm calls, common calls being "Harassment!", "Vexatious!", "Militant!", "Bullying!", and "Unreasonably Angry!" as well as other variations on the theme.

 

Realy???

 

Isn't that just robots tracking me on line?

Too right that the results are hard to ignore.
Even I find Skype exhausting.
But Skype with a furry robot would be OK because you could just mess about.

Indeed, David and I often don't make sense. When David is round I get wrist ache from using the corkscrew*. But it's thirsty work this PACE stuff.

*Note that this is actually a libellous untruth. Purely poetic license to embellish the narrative. Something that David never does, surprisingly for a journalist.

And anyway In vino veritas.

 

FINE was for those unable to get to an ME centre, which also included those who were not severe but who did not have a local ME centre, or were unable to travel. Our "local" centre, for example, would be OK for someone with moderate symptoms to get to if someone drove them there, but even a mildly affected one would find it a challenge to get there, do the course, and get back using public transport.

Looking at the Fatigue scores, they weren't all that much worse than the PACE set: there were many at 11 bimodal (worst score) but not at 33 when the severity scaling was brought in. Is that a reflection of the limits of the fatigue scale or a reflection of their failure to entice more severely affected patients to take part?

We haven't dissected FINE because the results were not pushing for CBT/GET, and the trial was largely disregarded.

 

*rational viewpoint overload!!!!!!*

 

And who knows? Maybe they'll stop diagnosing CFS and instead diagnose MUPS/BDD/somatoform disorder? Nobody forbids them to do so. And maybe the reason why they diagnosed CFS (or "chronic fatigue") at all was because they could say it's psychological and prescribe CBT/GET. Maybe they don't care about the name...only about the fact that they can say it's psychological.

 

Fortunately they seem largely immune to rationality