UK: Physios for ME

I agree, it should be useful in all sorts of clinical contexts, not just physiotherapy. Many thanks to Physios for ME.

And I agree with JemPD about changing noise to sound. NICE followed the advice from patient groups including S4ME to make that important change.
 
Andy said:
"We're pleased to announce a new resource – a downloadable one-sheet titled “How to work safely with people who have ME/CFS”.

This is aimed at physios who do not work in specialist ME services, to help them understand how to adapt their practice to work safely with people who have ME.

The new resource is a work-in-progress so we’d like to hear how useful it is in practice. You can download the one-sheet and find out more on our website here."

https://www.physiosforme.com/post/new-handout-released?postId=3eb17aac-7e9b-49df-9a5b-073a53740f63
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Great that this is being written.

Seriously hard task to cover severe (and how you might need to really limit what you do and be clever about 'picking one thing' around other limits) vs less severe, where it might be awareness/adaptations in normal sense.

I think there needs to be emphasised as a bold line (as there are now some who are muddying the definition of 'PEM' as if it is fatigue afterwards it might need emphasis here on the definition too), something like:

This means that what you see during an appointment isn't either someone's capability/limit or the consequences/impact, as this will occur 24-48hrs later. Be aware that you will need to ask the impact 24-48hrs later and note this as the 'consequence/limit' (and not what you can 'motivate' in a session) you will need to work to.

This is probably the one area to nail as if there is a penny-drop there that's a massive difference, and I know it's short for a reason.

Other thoughts however:

And also, due to issues with 'goal-oriented' habits. I think linking to the info on your website to emphasise that decreases in function are likely to occur (rather than increases) if the approach of 'pushing through' or expecting 'incremental increase' is taken.

And that just because someone might people-please or think they are getting away with that over the short-term, doesn't mean that actually function is getting worse or a 'relapse' (hate that word) isn't being caused as the effects of 'riding the limits' will hit much further in and be significant. This is a particular issue when you have those who had it for less years (and haven't experienced that pattern yet enough times to realise you can't 'just push slightly less hard' or tweak it some other way, as we all want to think we can beat things) vs those longer-term (who are living with the consequences but often not heard).

Also worth (I know this is getting long) noting that 'other committments' in a week or month will have a significant impact on what pwme will need to plan around - if they think of the concept of energy/health-wise: 'income vs disposable income' and how other tasks around the appointment (even travel) or committments mean there could be vast differences in whether there is energy to do things or it is putting them 'in debt' etc. I think my point here is that 'all the noted symptoms/adjustments to be aware of' and 'baseline concepts' will not be consistent from one appointment to the next - because one week someone might have 'spare' and the next 4 sessions not when attending, so a sheet/check before each session is more accurate.

I don't fully know how to word getting past using 'motivational language' or techniques that have got inadvertently embedded, but I do think there needs to be emphasis that this 'enthusiasm' needs to be watched out for and a communication approach that enables more frank and honest communication and self-assessment of impact will be needed otherwise patients (due to historical attitudes to them, and knowing many think saying something didn't help is 'the wrong answer') will otherwise be 'walked into' or 'not feel safe' in providing such facts or truth. I think there is an answer to this one (advice on framework might be something those ‘in physio’ know of) but atm my post long enough to think this one through further.

EDIT: I probably need to add that many assume that it is just aerobic exercise limits related to, even when people have got that message (and perhaps then assume the deconditioning security blanket for anything that e.g. might be them just moving their arm or the physio moving their body part even). I know without science to back this up it is a hard one to tackle that perhaps pushing too hard on anything also doesn't help the 'issue itself' because ME means their body doesn't operate as expect on that as well as it being 'don't over-exercise these people'.
 
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Barry said:
Excellent to see.

Possibly worth noting re the asterisked note: exercise is not only a high-risk trigger for PEM, but also a potential risk for permanently worsening ME/CFS.
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Yes this is an important point.

Also, and I don’t know how this would be best addressed succinctly, but they say ”unrelated” issues, and such issues could be genuinely unrelated, but since ME seriously impacts on one’s general stamina, muscle strength (directly via illness and indirectly via deconditioning) as well as coordination and concentration problems leading to accidents, which mean we may acquire injuries or specific localised problems, somewhat related to our ME.


I think most of us with ME will have a history of at least a few accidents and injuries over the years that can be put down to ME. Or if not that then a prolonged recovery over the average for everyday maladies due to our ME.

I know articulating this could be difficult since we are at risk for discrimination on account of our illness. Being personally blamed for how we handle our bodies where in others minor health issues are considered normal, and not receiving treatment for conditions considered treatable in others.

But I think it’s important to be accurate. I’d also like acknowledgment that ME doesn’t end with ME.

Individual parts of my body are one by one acquiring acute turned chronic injury thanks to medical neglect and untreated severe ME. Complications of ME.
 
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Thanks for all the comments on this - it is really hard to try and keep it brief enough that physios read it but to cover all the important information. We're hoping the link to our website will help with this and we've had encouraging feedback from people who have shared it with their physios that they have done exactly this.
Ash said:
Yes this is an important point.

Also, and I don’t know how this would be best addressed succinctly, but they say ”unrelated” issues, and such issues could be genuinely unrelated, but since ME seriously impacts on one’s general stamina, muscle strength (directly via illness and indirectly via deconditioning) as well as coordination and concentration problems leading to accidents, which mean we may acquire injuries or specific localised problems, somewhat related to our ME.

Individual parts of my body are one by one acquiring acute turned chronic injury thanks to medical neglect and untreated severe ME. Complications of ME.
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I think this is a really important point and so hard to explain without people jumping to the "deconditioning therefore treat with exercise" approach. It's more as a by-product of the ME not the cause of the ME
 
PhysiosforME said:
Thanks for all the comments on this - it is really hard to try and keep it brief enough that physios read it but to cover all the important information. We're hoping the link to our website will help with this and we've had encouraging feedback from people who have shared it with their physios that they have done exactly this.


I think this is a really important point and so hard to explain without people jumping to the "deconditioning therefore treat with exercise" approach. It's more as a by-product of the ME not the cause of the ME
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It’s brilliant you’ve done a great job of what seemed an impossible task.

agree that there is something different about people choosing to click through and ‘get more’ themselves once the gist has been emphasised that makes it better accepted too
 
NelliePledge said:
@PhysiosforME i wonder if education reach could involve something like the MEA do with the purple book sending it out to GPs. If a way of getting your book out to trainee or newly qualified physios. Perhaps funded by a grant and or crowd funding
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Although I’d start with the website first. Its simplicity works well to get the penny-drop of PEM across which then transforms how people see everything and is a good base to read more detail from?
 
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A poster presentation about a feasibility study of pacing with a heart-rate monitor by Physios for ME:
Results: 47 participants were recruited (32 ME, 15 LC). 7 males (5 ME, 2 LC) and 40 females (27 ME, 13 LC). Mean age 46 (46.7 ME, 45.6 LC). Average length of time – with ME 10 years, with LC 2 years. Range of severity – severe to mild. Feasibility is based on: acceptability, recruitment, adherence, suitability of outcome measures and adverse events.
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The procedure was acceptable to all participants; outcome measures were feasible, however, recruitment of PwLC was difficult. There were 4 dropouts (1 ME, 3 LC) due to medical issues not associated with the study. No adverse effects. Interviews identified 89% were going to continue using HRM after 2 months and 66% after 6 months. There was no reduction in activity levels measured with accelerometry when using pacing with a HR monitor. Some participants had significant postural orthostatic instability not previously diagnosed, some had high levels of lactic acid and some had low heart rate variability.
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Link
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In the same journal supplement it looks like there are a few other Long COVID related poster presentations including some service evaluations of a couple of UK LC clinics - I haven't looked at these at all but here's a link to the first page of conference abstracts.
 
Nightsong said:
A poster presentation about a feasibility study of pacing with a heart-rate monitor by Physios for ME:
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This is given as a test of the feasibility of doing some sort of trial of efficacy. It would be interesting to know how they plan to do such a trial and what outcome measures they have in mind.

The big question of course is what precipitates PEM and whether it has anything to do with anaerobic threshold or heart rate. I would be surprised if we have any real evidence for either.
 
Jonathan Edwards said:
The big question of course is what precipitates PEM and whether it has anything to do with anaerobic threshold or heart rate. I would be surprised if we have any real evidence for either.
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I think a big problem in real life could be establishing the heart rate for an individual's anaerobic threshold in the first place. There's an age-based formula for healthy people but it's supposed to be different for PwME (resulting in a lower threshold) and I can't recall whether it's evidence-based or arm-waving-based.
 
Sasha said:
There's an age-based formula for healthy people
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Interesting. But I wonder if it only applies under certain strict conditions of exercising. I would expect heart rate and anaerobic threshold to be very indirectly related in the sort of situations people with ME/CFS are concerned about. My guess would be that these don't generally cross the threshold with in normal people or people with ME/CFS.
 
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