I’ve managed one skim through, my thoughts....
Basically whilst there’s some welcome sensitivity to many of the challenges caused by severe ME, imo this is undermined by the constant “recovery” focused language even in the context of setting minute goals to people unable to possibly do anything and the message throughout of universally instilling optimism to the severe ME situation where the simple truth is that approach might be inappropriate and could lead to pressure and tensions etc within families if the patient is stuck or deteriorating set against this framework.
It seems to assume people with severe ME have devoted 24 hour care where someone can be there as you need, to stroke your head etc and doesn’t at all acknowledge the challenges of living with resentful or patchy family care, paid care or inpatient care.
It’s trying to apply micromanagement , 2 minutes of this type rest, 3 minutes another, to symptoms that can be unpredictable and in control of the sufferer. This would be really difficult to manage in therapist led intervention way. It could also make life more miserable.
It totally understates the risks of Hospitals and seems to only have taken patient evidence from those who got out of severe ME , so the patient advice is one sided. Is a patient who can have light gradually reintroduced just naturally getting better to allow that process , rather than it being an effective desensitisation treatment as suggested. I don’t think theres evidence supporting assertions that sensory sensitivity can be rehabilitated unless the person is generally improving, sure they can subside but that’s different. I also don’t think there’s evidence increasing sensory stimulation can facilitate other improvement. It writes that inpatient admission could have as a goal significant improvement, but that’s a massive ask and that wasn’t acknowledged. The typical bps sleep curtailing advice seems highly risky, I’m speaking from friends needing 22 hours per day and getting worse if they don’t have that.
Whilst it recognises the myriad potential for symptom exacerbation and need for great care with everything, It doesn’t seem to recognise potential underlying pathology much or that this in itself might be a barrier to attempts at rehabilitation. It’s suggested laying down is bad, causing symptoms in itself but ME Itself might necessitate that, thats the vicious trap, ME is like a trap. As
@Jonathan Edwards said treating an inability to do activity with that activity as treatment is a problem. It doesn’t, as many severe who aren’t getting better do, place any hope on emerging treatment or research.
I feel it’s largely been written by a person/people who’ve had, people with experience with short term, steady rising severe ME, well cared for who’ve learnt a lot but think that their pacing, grading, rehabilitation, desensitisation etc be generalised across the board to all sorts of other severe ME presentations/circumstances. It seems to expect with intervention the illness can be stabilised and improved, which It can be but the only narrative seemed to be in this document that it likely WILL be, that’s a huge problem. The bps have buried CFS in their good news with exercise narrative and I fear this document will still too much put the ball in patients court to diy , as is also the case with other CFS medical literature out there. This reinforces in the medical profession’s mind the idea of CFS sorted by behavioral interventions.
Whilst there’s loads of good stuff, some possibly taken from the late Emily Collingridges book, it’s not helpful to me because it would stimulate lots of interference and a bigger prodding stick from those who read it, people easily convinced that all with ME can be put on this supposed recovery ladder/path, no matter what stage or severity.
With tweaks, some cuts and a change of tone the document could be helpful but I don’t think bacme Would do that , just as they continue the good news of Pace.