Thread by @karenphysiocouk

With the #NICE roundtable happening on Monday to discuss concerns over the updated #ME guidelines, let me address a key concern about removing GET - that there would be a "reduction in services".

Here's what a specialist ME service could do without GET.../1

Take basic objective measurements, like HR and BP, using them in tests like the NASA Lean test to screen for orthostatic intolerances and refer on as required /2
batemanhornecenter.org/wp-content/upl…

Use Heart Rate monitors to take 2 weeks of baseline data alongside an activity diary, then use that data to;
a) identify stressors (& provide adaptive aids to modify these)
b) re-organise activities to allow for restorative rest

Work with the patient with regards pain relief to explore modalities, even - heaven forbid - hands-on techniques.
Not everything works for everyone but it’s worth exploring if it alleviates pain /4

You could even look at exercise for a purpose – pain relief, improve circulation to ease OI symptoms, or try to help with specific activities.

Isometric is best to avoid passing the aerobic threshold and you’ll need to monitor for PEM /5

With exercise, keep in mind #pwME’s muscles are quicker to fatigue and slower to recover, so standard strength training will be counter-productive.

@4Workwell have explored training options in this paper

workwellfoundation.org/wp-content/upl…

Exploring the Autonomic Nervous System is another option.

Methods to stimulate the parasympathetic nervous system might help – again, not everything helps everyone so working together to try, monitor and evaluate would be key. /7

For those with severe ME, advice on positioning to minimise contractures, maximise lung function and reduce pain. You can train carers on moving and handling. /8
physiosforme.com/severe-me

#OTs can look at cognitive function and provide things like memory aids to help. Their expertise in modifying the environment to manage sensory sensitivities would be invaluable too. /9

If applicable, assisting with managing work – modifying activities or helping to negotiate more appropriate hours. And assistance with red-tape admin tasks, like applying for benefits, would ease cognitive load and provide stability /10

Not to mention medical cover of course, or the support of dietitians for adequate nutrition, and even psychologists to help people deal with the impact of a severely disabling condition /11

All of this could be done very easily at the patient’s home. Because a service expecting #pwME to attend outpatient appointments is a service not designed for pwME /12

This kind of service might even already exist – in which case, the original complaint falls flat on its face.

So… tell me again that without GET there’d be nothing to offer...

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