UK: Physios for ME

[Jonathan Edwards]

I’m not sure how helpful it is to pick at things like -where the document acknowledges that physios usually follow a “reconditioning model” but this isn’t good for pwME - to pick at the existence or effectiveness of said “reconditioning model”.

Because the reconditioning model is the brainwashing that is at the root of the problem of all physios thinking that their job is to increase activity. The pacing up tendency will not go away until physios realise that their job, whatever it is, is not to get people to do exercises.

Sometimes pwME have a problem which requires physio though.

And sometimes they need an optician but you wouldn't want opticians telling every patient they need special glasses when they don't need.

In all my years as a rheumatologist I very rarely referred anyone for physio. For most things 'physio' is recommended for there is no reason to think it does any good.

 

[Jonathan Edwards]

How, though? Which skills are unique to physios that can contribute to managing pwME/CFS?

None. The skill would be unique to enlightened health care professionals, some of which might be physios. A physio would have the added advantage of being able to point out that advice from other physios might be misguided, and be listened to.

 

[Utsikt]

None. The skill would be unique to enlightened health care professionals, some of which might be physios.

So there is no need for physios per se.

A physio would have the added advantage of being able to point out that advice from other physios might be misguided, and be listened to.

With what authority? If the physio is saying that you shouldn’t listen to the physios because the physio teachings are wrong, then their qualification as a physio wouldn’t matter to their argument. So we might as well focus on recruiting non-physios with scientific training that can tell the entire field that they have got things wrong because they aren’t doing the science correctly.

 

[Jonathan Edwards]

With what authority? If the physio is saying that you shouldn’t listen to the physios because the physio teachings are wrong, then their qualification as a physio wouldn’t matter to their argument.

I don't think that argument works too well. If everyone supposed to have a particular expertise agrees on something then it is hard for someone who does not appear to have that expertise to claim otherwise. If someone with the supposed expertise disagrees their opinion will carry more weight. This is not an argument about the appropriateness of that fact, just a reflection of the way things work.

So there is no need for physios per se.

Sure, I am not suggesting we need physios. am simply agreeing that in the current situation an enlightened physio may be able to contribute something useful. If someone with ME/CFS is insistent that they see a physio because it s obvious to the they need one (and I suspect there are many) then seeing an enlightened physio might be a very good thing. But that is different from recommending that everyone sees a physio.

 

[Kitty]

What concerns me about the document is that people who get it—people who really see ME/CFS—will know they never need to address the question of increasing activity. Patients are already desperate to do that and already know how to do it. Take off the shackles and they'd be away like a sighthound after a rabbit.

As with any other healthcare professionals involved in ME/CFS, physios only need to address the absolute reality of the shackles and the impossibility (as things stand) of releasing or even loosening them.

 

[Utsikt]

I don't think that argument works too well. If everyone supposed to have a particular expertise agrees on something then it is hard for someone who does not appear to have that expertise to claim otherwise. If someone with the supposed expertise disagrees their opinion will carry more weight. This is not an argument about the appropriateness of that fact, just a reflection of the way things work.

I see your argument, and I understand that it might be the case for e.g. a doctor where you’d need some amount of medical knowledge to assess the claims. But for physios? All you need to debunk it is a basic understanding of the pitfalls of RCTs and the concept of natural recovery.

And the (B)PS physios are already using the argument that everyone else are wrong - because you have to consider the PS as well.

Sure, I am not suggesting we need physios. am simply agreeing that in the current situation an enlightened physio may be able to contribute something useful. If someone with ME/CFS is insistent that they see a physio because it s obvious to the they need one (and I suspect there are many) then seeing an enlightened physio might be a very good thing. But that is different from recommending that everyone sees a physio.

Do you know of any physios you’d recommend for a patient? Seems like saying that we should let kids meet unicorns if they want to.

 

[Jonathan Edwards]

All you need to debunk it is a basic understanding of the pitfalls of RCTs and the concept of natural recovery.

Which for someone with ME/CFS in a cramped rushed GP office alongside a benevolent but ignorant carer is about as likely to fill the room as the moon being made of cheese!!

Do you know of any physios you’d recommend for a patient? Seems like saying that we should let kids meet unicorns if they want to.

I can think of four physios who seem to be more enlightened than the average healthcare professional.

 

[Utsikt]

Which for someone with ME/CFS in a cramped rushed GP office alongside a benevolent but ignorant carer is about as likely to fill the room as the moon being made of cheese!!

Sure, but the physio won’t help you there either. And why would the GP listen to a physio? If the point was to convince GPs, why not use GPs based on the same logic?

I can think of four physios who seem to be more enlightened than the average healthcare professional.

Are they enlightened enough to avoid recommending pacing up? Hilliard seems to have a decent grasp of PEM and ME/CFS but still conclude that a physio should tell pwME/CFS when and how to do more.

 

[Jonathan Edwards]

And why would the GP listen to a physio?

GPs are always listening to physios. They love to hear that there is something they can send the patient off for. I think you are assuming we live in a rational world. It is full of quirks and inconsistencies. If GPs got the message, fine, but it is hard to deny that having some physios who understood and helped people with ME/CFS back off trying to do too much might be helpful.

Are they enlightened enough to avoid recommending pacing up?

Perhaps we should ask @PhysiosforME ?

 

[bobbler]

Sure, but the physio won’t help you there either. And why would the GP listen to a physio? If the point was to convince GPs, why not use GPs based on the same logic?

Are they enlightened enough to avoid recommending pacing up? Hilliard seems to have a decent grasp of PEM and ME/CFS but still conclude that a physio should tell pwME/CFS when and how to do more.

I think it’s worth you looking at the physiosforme website and then letting us know what you think as I find that is useful resources for pwme.

 

[Utsikt]

GPs are always listening to physios. They love to hear that there is something they can send the patient off for. I think you are assuming we live in a rational world.

Perhaps that is my mistake. Although any physio caring for pwME/CFS would have to disclose that it’s management and not treatment. But maybe a GP won’t care and just want them out of their office.

If GPs got the message, fine, but it is hard to deny that having some physios who understood and helped people with ME/CFS back off trying to do too much might be helpful.

If you really think that’s possible. I’ve seen five physios myself, and even the ones that say they get ME/CFS and have worked with pwME/CFS for years can’t help but default to pacing up.

Perhaps we should ask @PhysiosforME ?

Hilliard co-founded PhysiosForME. Yet she recommends pacing up in the latest post.

 

[Utsikt]

I think it’s worth you looking at the physiosforme website and then letting us know what you think as I find that is useful resources for pwme.

The website is cluttered, but this one with info for physios talks about massage, acupuncture, vagus nerve stimulation, music therapy, mindfulness, calf exercises, and more.

What else can I do | Physiosforme

www.physiosforme.com

Edit: they usually say that there is low evidence for these interventions, but that begs the question of why you’d mention them at all. And this quote makes it seem like they think it works for some, which is a logical fallacy (like saying that Rituximab worked for some in P1/2 when we know it’s ineffective based on P3):

It is vital to understand that every person is unique and their response to a treatment is unpredictable. The evidence base for any intervention is very limited. Therefore, there is no approach that is suitable for all.

 

[Kitty]

I think it’s worth you looking at the physiosforme website and then letting us know what you think as I find that is useful resources for pwme.

The discussion's been looking at that most recent post, and while I agree it shows some very welcome understanding, there's still a way to go. This, for instance:

We also support our patients with appropriate ‘exercise’/movement. As I said previously, exercise/movement needs to be prescribed at the right time.

It shows the author thinks movement needs to be prescribed, and that therapists know when the right time is to prescribe it (presumably the patient doesn't, otherwise they wouldn't need a therapist).

It's overreach and nonsense all at the same time.

The post has some of the problems we discussed in the BACME guide to care, but the difference is that there is insightful content. It's in need of some red ink rather than being consigned to the recycling bin.

 

[Kitty]

Also, @PhysiosforME – my posts are in the spirit of friendly criticism. I have a lot of respect for what you're working to achieve.

I've conspicuously avoided drafting this sort of content myself, and if I tried I'd get it wrong. It's a minefield, where written content needs numerous pairs of eyes and you need to be prepared to end up with very little. Very little's usually all we can say.

 

[MrMagoo]

It’s a bit hard to discuss the document when people want to abolish physiotherapy and physios per se more than deal with the real-world situation I find myself in, which is that
-physiotherapy exists
-I sometimes need to see physiotherapists
- physiotherapists sometimes run ME/CFS clinics
- some physiotherapists are actually taking an interest in trying not to harm pwME

are S4ME going to stop working with physios for ME given this strength of feeling against physiotherapy existing?

 

[Jonathan Edwards]

are S4ME going to stop working with physios for ME given this strength of feeling against physiotherapy existing?

Maybe you hadn't noticed that the person critiquing physio in general is co-authoriing a letter with PhysiosforME, in a constructive collaborative spirit. Maybe you are just a bit behind on the posts!!


And members here are free to express whatever opinion they like, as long as it is civil.

 

[MrMagoo]

Maybe you hadn't noticed that the person critiquing physio in general is co-authoriing a letter with PhysiosforME, in a constructive collaborative spirit. Maybe you are just a bit behind on the posts!!


And members here are free to express whatever opinion they like, as long as it is civil.

I absolutely had, which is why I am wondering why there is this interminable hand-wringing over whether physiotherapy as a discipline is wrong.

So no I’m most certainly not behind but I am drained by the discussion of “the concept of physiotherapy is useless and does no good so needs to be disregarded and all that flows from them must be wrong” when there’s a few useful points which could be debated, maybe even -revised!?- regarding the post above, which are lost in the melee of bashing the entire concept of physiotherapists and arguing that they are never required in any situation but if they are in such situation they will get it wrong.
Draining.

 

[MrMagoo]

The post has some of the problems we discussed in the BACME guide to care, but the difference is that there is insightful content. It's in need of some red ink rather than being consigned to the recycling bin.

This. Can we have a thread. I don’t have the energy for the other stuff.

 

[Utsikt]

So no I’m most certainly not behind but I am drained by the discussion of “the concept of physiotherapy is useless and does no good so needs to be disregarded and all that flows from them must be wrong” when there’s a few useful points which could be debated, maybe even -revised!?- regarding the post above,

Well, I did start off with outlining issues in every single statement in the first part of the post. All of those points have been discussed at length here for years, so I’m getting quite tired of us having to point them out time and time again. Feel free to focus on those and ignore the other posts.

which are lost in the melee of bashing the entire concept of physiotherapists and arguing that they are never required in any situation but if they are in such situation they will get it wrong.

If you can point me to a single physio that doesn’t recommend something like pacing up for pwME/CFS, I’d be very happy to read about it. I have never seen that yet, so I don’t think my position that «physios always find a way to sneak in rehab» is unreasonable.

I can understand that you find the discussion draining. I also do, especially because I’ve been forced to deal with physios that are unable to let go of pacing up for more than three years running, and they are ruining my life, my health, and straining relationships. I think the people that take it upon themselves to put out information for others have a duty to get this right. They are causing serious harm through their negligence by making it virtually impossible to get others to believe that pacing up is harmful, because «it’s endorsed by these ME/CFS physios» and others.

 

[MrMagoo]

Well, I did start off with outlining issues in every single statement in the first part of the post. All of those points have been discussed at length here for years, so I’m getting quite tired of us having to point them out time and time again. Feel free to focus on those and ignore the other posts.

If you can point me to a single physio that doesn’t recommend something like pacing up for pwME/CFS, I’d be very happy to read about it. I have never seen that yet, so I don’t think my position that «physios always find a way to sneak in rehab» is unreasonable.

I can understand that you find the discussion draining. I also do, especially because I’ve been forced to deal with physios that are unable to let go of pacing up for more than three years running, and they are ruining my life, my health, and straining relationships. I think the people that take it upon themselves to put out information for others have a duty to get this right. They are causing serious harm through their negligence by making it virtually impossible to get others to believe that pacing up is harmful, because «it’s endorsed by these ME/CFS physios» and others.

I’m not even reading it all, it’s too long. It’s a discussion that is inaccessable to me, due to my ME.