UK: Physios for ME

[bobbler]

I’m sure it’s well intentioned and am willing to give them the benefit of the doubt because of their other work and discussions on here.

But taking about rehabilitation and using phrases like “complex, heterogeneous & multisystem“ with no evidence is really unhelpful and potentially damaging. It seems to contradict the aims of the letter about BACME’s approach. We know how these terms are used against us and used to muddy the water.

Many of us in our professional careers have gone to a conference and got caught up with whatever hot topics were doing the rounds in that bubble. Then returned to our jobs talking about them before realising it was all bullshit. But it’s a concern if these were the themes that were going around at this conference.

nah, in most areas I worked in anyone who was trying to push ambiguous terms eg like 'storytelling' as buzzwords, would super-quickly get pulled up and asked for precision in what they mean. Particularly in job interviews for anywhere worth its salt/not a niche small agency or tiny dept with a boss that loved that BS and most avoid.

No... what are we actually talking about doing. What are the results of that. WHo specifically are we targeting. Have we checked what harms and what helps.

Some of the stuff might sound like buzzwords but something like segmentation is very specific and most of them are used because they are 'does what it says on the tin' terms. Like failure demand. Deliver something crap that harms and makes things worse and you make more work until the point all someone is doing is replying to the results of people wondering where their parcel is instead of working towards getting parcels somewhere on time.

 

[bobbler]

I suppose 'heterogeneous' does make sense when talking about Long Covid where physios will be seeing patients with different problems under one umbrella definition.

I think they can have the respect to use the specific terms as an area (rehab, not physiosforme), but choose not to

I don't understand the cycles that ME/CFS ends up being allowed to fall into its EXHAUSTING even when we don't turn our back for a minute the whole area slips back into, including advocates (and the ones I have in mind when writing this aren't physiosforme but other advocates) putting back the bigotry that we spent so many years working to move out of the area. Lumping people into MUS-y, fatiguey BS departments where we get our rights removed for healthcare and other services and other human rights.

Focusing on the least ill instead of what we do know about who we do know it. That's not 'inclusivity' it's exclusivity - ensuring that the ones we know are obviously incredibly ill get nothing. Still. Ever. Worse the same thing that harmed them and the horror of the tyranny of it all pretending forcing it onto them to do the same is OK and they are mad for saying different. The ones who are that ill because they were harmed by the last BS, ergo if that was being used as 'a test' that we didn't have something ameliiorated by bullying and BS then DEFINITELY are who a service should be for. Making us sound like people with a fake illness. Because we are now offering an 'antyhing but ME/CFS service' under the funding supposed to be for those with ME/CFS because that's nicer (and I say nice is the cover for those who aren't being kind). But it's OK because the agression terms sound nicer to outsiders so we are even more done-over.

No wonder none of these questions are answered because these are as a larger combined entity by the sounds mostly people who want to be able to do what they want without responsibility for the outcomes, specifically around harm. And physiosforme might be the only ones who get/got it.

All allies should be making sure they are stepping outside of this muddy the waters, nothing phrase BS and showing them up by bringing specificity to specific things with everything they do and letting outsiders and bill payers see the difference between the blatherers with nothing behind the talk and what moving forward requires is 'got' (that they often want to sidestep in order to carry on in a world where they aren't held to anything, including checking something doesn't harm before claiming it's 'help' etc)

 

[Trish]

This was always my fear around Physios for ME, that it was all a front to push rehabilitation and ever increasing activity and there it is in plain black and white this is the new name for GET with the goal of increasing activity. They have no evidence any of this works and plenty of historical evidence it harms. When will the abuse of patients end?

I don't think we have seen any suggestion that Physios for ME support the sort of 'rehabiltation' that encourages people with ME/CFS to increase their activity beyond their current capacity. They are very much on our side on this. Their published material is fine as far as i recall. They may be using the word 'rehabilitation' to mean pacing advice of the sort most of us would support. I hope they will clarify that for us.

Edit: Michelle from Physios for ME was a co-author of the open letter criticising the BACME guide for therapists which is the wrong sort of rehab:
An Open Letter to BACME re ME/CFS Guide to Therapy 2025

 

[hotblack]

They may be using the word 'rehabilitation' to mean pacing advice of the sort most of us would support. I hope they will clarify that for us.

I wondered if they meant it for those people who are classified as having Long Covid but do recover? As others have said LC seems to cover a wide range of things. It’s one if the reasons that bundling all of these conditions together seems unhelpful to me. It creates ot allows for confusion. Especially when we have finally got a study in DecodeME that shows there is a condition identifiable as ME/CFS.

I also agree with your other comments. As a group and as individuals they’ve been very clear and supportive of us and on where the problems are. I understand people’s fears but see nothing that indicates they are or would push GET. Just as we ask organisations like Physios for ME to be mindful of their words I think it’s only fair we are with ours.

 

[Jonathan Edwards]

I agree that the PhysiosforME policy seems sensible. But the policy of applying treatments because they seem to help without formal testing is precisely the approach Chalder and Wessely used with CBT. It has taken 30 years to reverse that.

 

[MrMagoo]

I feel a bit sorry for Physios for ME because I think they are totally on board with us, but they can’t say the sort of out-and-out stuff we say otherwise they would be healthcare pariahs (like us).
They have to exist in “that” world.
ME (and LC) might not be a “complex multisystem disease” as is always quoted, but they may as well be thought of as complex and heterogeneous and they do affect multiple systems.

 

[MrMagoo]

What I mean is there’s no reason to throw the baby out with the bath water. If they’re going to buck a trend and deliver a message and learning to other physios, I can live with it just being the stuff about how they treat us, someone else can do the politics.

 

[hotblack]

I get what you’re saying @MrMagoo and and agree we need to be careful here and that the complex multi system language is used by many.

But pairing it with rehabilitation? There’s only one meaning there and it’s one which is not open to us. We of course all want to be restored to health but for that we need treatments and there are none.

I see a place for physiotherapists to be of help to us. But it has to be based in understanding and acceptance of that reality.

 

[Barry]

I agree that the PhysiosforME policy seems sensible. But the policy of applying treatments because they seem to help without formal testing is precisely the approach Chalder and Wessely used with CBT. It has taken 30 years to reverse that.

Understood and appreciated. But was there a time when pacing fell into that category, where many people with ME knew it helped, but no formal testing to back it up at the time?

 

[StellariaGraminea]

I think the word 'rehabilitation' may need to be rehabilitated. It seems to mean different things to different people. When i hear it, I think of someone being supported by a health professional back to their normal life and activities, i.e. a sort of a "fixing". I don't think it's always meant that way, sometimes it seems more about "managing" or avoiding deterioration, or giving information etc. I think the second meaning is lost in translation when physios say 'rehab'... non-physios / drs etc probably hear it as 'fixing'?

 

[Jonathan Edwards]

But was there a time when pacing fell into that category, where many people with ME knew it helped, but no formal testing to back it up at the time?

Pacing is not a treatment that earns anyone a living. And, yes, it is still in the category of unproven.
Since it is based on what people with ME/CFS say they think is the best way to live it is reasonable to present it to people newly diagnosed - but only in those terms. It should not be presented as 'what we know is best'. I don't think there is any comparison with attempts to devise treatments based on speculated physiology.

 

[Utsikt]

I get what you’re saying @MrMagoo and and agree we need to be careful here and that the complex multi system language is used by many.

But pairing it with rehabilitation? There’s only one meaning there and it’s one which is not open to us. We of course all want to be restored to health but for that we need treatments and there are none.

I see a place for physiotherapists to be of help to us. But it has to be based in understanding and acceptance of that reality.

There was a discussion about «rehabilitation» in relation to the open letter to BACME:

I think the problem here is definitely the traditional view of rehabilitation! It is based on the deconditioning theory and expects people to improve.

If i have to use the word rehabilitation I tend to quantify it by using a definition of rehab that is pretty old (1980) from the cancer field but does include supportive care - in my opinion it fits much better with the broad range of people physios can support amd much more aligned with ME. But I'm pretty sure this isnt a common perception/understanding of the word!

Then Sivan responded by saying essentially the same thing about what rehab is. I’m not sure most people picked up on the similarities back then, and most of the criticism was directed at Sivan’s response:

Depends on colleagues understanding about "Rehabilitation". It is defined by WHO as "set of interventions to optimise functioning or improve functioning", and that is 90% of any healthcare activity.

A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too.

Your open letter has been signed by a physiotherapist and psychologist - what they do with patients is improve function and that is rehabilitation. If we want to remove rehabilitation from the picture, that means RCP, RCOT, RCP, BPS, and charities all are out of this. I am sure you don't imply this.

 

[Jonathan Edwards]

I think the word 'rehabilitation' may need to be rehabilitated.

Wouldn't it be better just to say it is not relevant to ME/CFS?
I quite clearly means getting people well again over a defined period of time. Looking after my 102 year mother for the last five years was not 'rehabilitation'. The situation for ME/CFS is different but it is equally not 'rehabilitation'. Rehabilitation comes with goals and outcome measures and an assumption that you can measure benefit of treatment, none of which apply.

I trained in rheumatology and rehabilitation. I chose to look after people with RA -"managing" or avoiding deterioration, or giving information etc., precisely. That was rheumatology. Rehabilitation I got a taste of and, as my deputy boss admitted when I left, was 'mostly drivel'. It was and still is, a charade, designed for a political purpose, to make it look as if something is being done. There are exceptions, chiefly stroke and MS episodes, but ME/CFS is not analogous.

 

[Jonathan Edwards]

The key practical point is that all rehabilitation is delivered in fixed term courses. There is nothing to deliver in a fixed term course for ME/CFS, any more than there ever was for RA. On the very first job I did in rheumatology we did have people brought in to the ward for a fortnight's treatment that might, although it wasn't, have been called rehabilitation. One of the people who came in for that care used the same word - 'drivel'. Within five years no unit in the UK was doing that because RA was being taken seriously and we all knew short courses of 'treatment' achieved nothing.

 

[StellariaGraminea]

Wouldn't it be better just to say it is not relevant to ME/CFS?

Yes it would, in its first & most obvious meaning. But I think its second meaning needs to be scrapped and called something different, "supportive care" maybe, with no implication of curing or fixing anyone. I think some people are intending the second meaning while using the word "rehabilitation" and things are getting lost in translation.

 

[Jonathan Edwards]

some people are intending the second meaning while using the word "rehabilitation" and things are getting lost in translation.

Agreed, and lost in DHS working parties setting up service templates.

 

[Peter T]

I think the word 'rehabilitation' may need to be rehabilitated. It seems to mean different things to different people.

We tend to focus on the meaning of ‘doing things in order to get better at them’, which unfortunately is not currently a desirable course of action for ME/CFS. Indeed rehabilitation is often under pinned by the assumption that all you need to do is establish what individuals are currently able to do and then break down activities into suitable components or pitch activities just above what can be done comfortably, then do these activities as identified repeatedly in order to improve. Rehabilitation units then continue doing that whilst the individual improves or until any improvement plateaus out, when they work towards discharge.

However rehabilitation can be broader than this and is also used to mean whatever rehabilitation professionals do even if that is not aimed at restoring impaired or lost function. This can include very varied things, from just helping the individual to understand their condition and its impact to introducing aids or exploring how to engage the world given current ability levels. In relation to ME/CFS the big question is how it best to address this when there are limits on potential activity and in the context of various hypersensitivities, etc.

 

[MrMagoo]

I think it’s going to be hard for Physiotherapists to avoid the word “rehabilitation” as that’s what physio is, a form of rehabilitation.
I also suspect it’s less absolute in their world than it is in others.

Y’know, like how in the opposite, the brain trainers say “recovery” when they mean “slight improvement” not actual full recovery and restoration to previous health.

 

[bobbler]

There was a discussion about «rehabilitation» in relation to the open letter to BACME:

Then Sivan responded by saying essentially the same thing about what rehab is. I’m not sure most people picked up on the similarities back then, and most of the criticism was directed at Sivan’s response:

A person has hip replacement to reduce pain and improve function - that is rehabilitation. A person with cancer has tumour debulking and chemo for improving symptoms and function - that is rehabilitation too.

Just seen this quote from Sivan again. He really is disingenuous or kidding himself. The way this is written is to infer someone with cancer would have debulking to 'remove as much of the tumour as possible' and the same reason for chemo 'to remove cancer cells'. Even when it is 'palliative' because someone cannot be 'cured' it is termed as 'rehab'.

As he knows full well the bit that involves the 'rehab department' is neither of these. And his dept isn't sending anyone off for these treatments, doing those treatments or taking the credit for whether they work or measuring the harm and logging the outcomes against their dept mortality stats (in fact do they have such measures).

If someone with either of those problems was consigned to one of his departments to never be provided any other treatment they would have a significantly worse outcome too, with no access to medical treatment - as the rehab depts do neither hip replacements nor cancer surgery or chemo. You'd hope they wouldn't be tormented by said department as if 'never mind about not getting the actual treatment bit, no excuse for you not acting as if you did, let's get you doing more and building up again minus the fixed hip/treated tumour' because that would be cruelty, particularly if the person was reporting back that they were worse for it (not 'feeling as if they were') and it wasn't heard. Those patients require and deserve and get orthopedic experts and oncology managing them. The slippery sophism that consistently fills his replies is concerning.

 

[bobbler]

And the following sounds like a plain threat: unless I'm in charge and all you get is rehab depts that'll GET people (shove off with the 'pace up' responsibility skirting) we will use that 'refusal to accept something that harms' as an excuse to what isolate us from access to all medical departments.

What has been going on regarding the note of 'and charities all are out of this' ?? what has been going on in the dark?

Your open letter has been signed by a physiotherapist and psychologist - what they do with patients is improve function and that is rehabilitation. If we want to remove rehabilitation from the picture, that means RCP, RCOT, RCP, BPS, and charities all are out of this. I am sure you don't imply this.