O'Dowd-Crawley early intervention study

Trish said:
So all you have to do is avoid boom and bust, sleep well and think positive. Sorted.
What a pile of useless platitudes.
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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.
 
Carry a small notebook around with you for a week or so. Try
to notice what you are saying to yourself in the course of the
day and write these thoughts down. Notice particularly what is
on your mind when you are feeling unhappy or upset. What
thoughts are behind this?
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Write balanced thoughts down on a small card and carry them
around with you. Get the card out and read them when you find
yourself having negative thoughts.
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Good advice if you really want people to think you have lost the plot.
 
JohnTheJack said:
Hehe. A masterpiece.
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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.

Trial intervention - ...This will be provided as an information booklet (Appendix); one face to face treatment session (up to an hour); and three telephone follow up sessions (20 minutes each) at 2 weeks, 6 weeks and 10 weeks. The intervention will be given by an experienced, trained CFS/ME therapist within two weeks of the patient agreeing to be randomised.

The EI has been adapted from the treatment approach delivered by the Frenchay CFS/ME service which follows NICE guidelines for CFS/ME (August 2007). It focuses on strategies to improve sleep (sleep hygiene) and balance activity using activity diaries. This includes making sleep and rest routine; monitoring the type and amount of activity undertaken every day; helping to develop consistent daily activity levels; and includes components of CBT, graded Exercise Therapy and activity management in a pragmatic approach delivered by the therapist. CBT will be used to explore barriers to progression, as fatigue and disability can be perpetuated by fearful cognitions, avoidance of perceived risky situations, all or nothing behaviour, inappropriate beliefs about rest and sleep, and focussing on symptoms only. A one-to-one model of delivery will best suit the individualised cognitive and behavioural responses identified.
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Only one mention of "exercise" in 20 pages. [eta: actually 3 mentions - search function not working properly]
 
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Sly Saint said:
Good advice if you really want people to think you have lost the plot.
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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.
 
Snowdrop said:
This reminds me of how the BPS researchers have never bothered to track adverse outcomes.
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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?
 
Carry a small notebook around with you for a week or so. Try
to notice what you are saying to yourself in the course of the
day and write these thoughts down. Notice particularly what is
on your mind when you are feeling unhappy or upset. What
thoughts are behind this?
Click to expand...

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!"
 
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