NHS Talk Plus Video Modules for people with Long Term Conditions (LTC)

https://www.talkplus.org.uk/long-term-condition-video-modules

in each module you can access a pdf of all the slides.

first one on pacing

by accident I got to this page

https://www.talkplus.org.uk/the-boom-and-bust-cycle-video-module

Most of the videos are from around 2018.
I didn't realise that the whole 'boom and bust/pacing' had become so generic (APT) and was being applied to pw all kinds of LTCs, not just ME/CFS.
Kind of ironic seeing as the PACE trial was supposed to have proved it not as effective as CBT/GET.
So how does the Chalder/Sharpe/White style CBT for CFS fit into the picture?

What a mess. I wonder if NICE had any idea what they were endorsing by leaving CBT as a recommended 'treatment' in the ME/CFS guidelines.

 

The point I was trying to make was that there is supposedly 'CBT for CFS' (several documents on this from the usual bps proponents), using the 'boom and bust' /fear avoidance/ deconditioning scenario for CFS. This was, and largely still is, the supposed 'evidence based' approach to 'treating' CFS (and ME); a bespoke form of CBT.

At the same time, the ME community have been trying to get the model and the related information on 'pacing' corrected, as it applies to ME.

However, it appears now that this is not now regarded as CFS specific and applies to other LTCs (I watched the 'boom and bust' and 'pacing' videos) including arthritis, copd, cancer etc.
any LTC patients who suffer from fatigue and exacerbation of symptoms following too much activity.
In effect, PEM, although they don't use the term.

So, it was bad enough that ME was clubbed in as an MUS, PPS, although it supposedly had it's own version of therapy. But now it looks like what has happened instead (and now we can also add Long Covid to the group), the model and 'treatment' has instead been expanded to include all chronic illness.

 

The BPS / CBT model of fatigue in chronic conditions certainly extends beyond MUS / PPS. For instance, Prof Rona Moss-Morris has received funding from the MS Society. Another example is the recent LIFT trial for rheumatoid conditions, funded by the charity Versus Arthritis (ex-Arthritis Research UK), which we have discussed here: https://www.s4me.info/threads/cogni...atic-diseases-lift-2022-bachmair-et-al.28302/

 

Yes, I'm aware of that. But as I said before, I hadn't realised that they were also being given exactly the same spiel of the 'boom and bust' cycle, and the same type of 'pacing' as pwME/CFS.
So what is the point in all the literature on 'Pacing for people with ME' if it's the same as 'pacing for insert illness here '?

 

Here is the NHS patient info on pacing (for pwpain):
11850Ppacing.pdf (ouh.nhs.uk)

in the words of Ellen Goudsmit
"Pacing versus graded activity: As I've noted before, pacing does not rely on plans. Indeed, if you see references to plans, goals or targets, you are probably reading about some form of graded activity.

Graded activity or as it is sometimes known, graded exercise therapy (GET), is based on a theory. This theory assumes there is no ongoing disease process, but that symptoms after the acute phase are largely the result of a lack of fitness due to avoidance behaviour, plus stress, anxiety or depression. Hence it is considered safe to push yourself a little in order to reach goals. Indeed, proponents of this approach believe that listening to your body is likely to perpetuate the illness, as you need to increase your activity levels to improve your fitness. (No pain, no gain). Those advocating GET also refer to consistency in order to avoid the boom-bust cycle of overexertion and relapse."