UK: Physios for ME

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'.

 

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.

 

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.

 

Thank you Physios with ME. This is very useful.

 

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

 

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

 

It's 5 years yesterday since Physios for ME was formed. What a lot they have achieved. Congratulations and thank you for all the hard work.

I have asked Michelle if she will post their fb announcement on here since I cannot get it across.

 

Never quite sure where is the best place to share updates but we're 5!

https://www.physiosforme.com/post/physios-for-me-celebrate-our-five-year-anniversary

 

A fantastically successful five years, wishing you all the best for the next five and onwards.

 

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?