O'Dowd-Crawley early intervention study

Thanks for the brief sum up @Trish. I tried to open the file, but the Acrobat file caused my laptop to have a hissy fit and overheat and other things stopped responding, so no way can I read it!

 

My unhelpful questions are

How do supposedly serious people come up with such garbage?

How can a group of people purport to study a condition for so long and still know nothing about it?

When will someone pull the plug?

 

And this is the expertise that pervades everywhere.

We were issued the advice/ activity / sleep sheets by our paediatrician upon referral, probably as there are no paediatric guidelines here and it will be preferred as " best practise" .

There is nothing like the disappointment and self doubt when " professional" advice does not work.
Self doubt is horrible for a child/ young person to experience, especially when their world has changed so much, so quickly.

No looking for comorbidities, no acknowledgement/ knowledge of heart issues in PEM .

It is CF , not ME and as such is inherently dangerous. Russian roulette.

 

Well that was worth waiting for...!

 

I see they have also nabbed Balancing Activity and Rest

 

Good advice if you really want people to think you have lost the plot.

 

Given all the things mentioned in the protocol that don't seem to be in the booklet, the therapist would have had a heck of a lot to cover in the hour-long one-to-one session.

Only one mention of "exercise" in 20 pages. [eta: actually 3 mentions - search function not working properly]

 

This reminds me of how the BPS researchers have never bothered to track adverse outcomes. So no harm done. Dispelling unhelpful beliefs runs the risk of rendering all negative thinking as bad and only positive thoughts as good (the implication is even in the language).

It presumes that there is no harm in unrelenting positive thinking.

I think they are wrong.

ETA: I meant to quote slysaints quotes.

 

I hadn't realised Action for ME were so involved in this. What a disaster for patients they have been.

 

Does the Balancing Activity help overcome the vertigo?

 

I've only just twigged why - it's because any stories of adverse outcomes would encourage false illness beliefs in all patients, which is exacty what the BPS crew are trying to stop. Why should patients with adverse outcomes (ie those who didn't follow the BPS approach properly so are responsible for their own situation anyway) be allowed to influence other patients who still have a chance of improving, by drawing attention to their self-inflicted tales of woe? Quite right that nobody should be allowed to mention adverse outcomes.

So it isn't even necessary for the BPS crew to be incompetent or evil, they just have to act in accordance with their principles, not tracking adverse outcomes is entirely consistent with that. Adverse outcomes are to be ignored on the scale of the individual patient and, for consistency, on the grand scale of the whole group of patients being observed.

Not really science though is it, or even anything worthy of the word "study". Perhaps "manifesto" or "creed" or "tenets of our belief" would be better. Why are they allowed to call it a study? Why can't people who are used to reading studies see straight through it? Because it suits their interests too perhaps?

I'm ranting. Never mind, I'll just call it study and publish it. Why not?

 

This reminds me of an NLP course that we were all sent on in the early 90s. There was a lot of focus on "negative self talk".

I'm sure the 30 people (out of 60) sold off on a 3 month contract with no guarantee of.continued employment found it very helpful. Not.

It certainly did nothing for the rest of us who had to somehow still try to get the job done. "No whinging - that's negative. Make sure you're listening to the course tapes in the car!"

 

Drive while listening to tapes. Because multi-tasking for PwME is a breeze..... (sarcasm)