UK: Physios for ME

[Jonathan Edwards]

I just don’t think it’s a core reason for the systemic problems we see

I don't think I have ever suggested that. The issue I am concerned about is the best tactics for minimising harm.

 

[Jonathan Edwards]

So the children are take away because of the parent’s beliefs, not their behaviour.

Precisely.

 

[Axel]

Generally speaking, as we see with the climate, coming to terms with the fact that there can be no experts in the unknown is a step that most people find difficult to take.
Those who have the most to lose, however, are managers. They must have the courage to admit that they do not know and to return to the pure observation of phenomena, without making predictions.

 

[hotblack]

I don't think I have ever suggested that. The issue I am concerned about is the best tactics for minimising harm.

I know and understand your intent. I really do. As I said I appreciate it. You are a hugely important voice and person to have on our side. Like you we all just want to stop this.

I do think sometimes some patients see things said and feel like they are being dismissed. And some healthcare professionals use things as an excuse to dismiss patients or not reflect on their own misunderstanding or mistakes. I think the latter is a real risk for harm and we can reduce how many people get in these dire situations if we had proactive planned appropriate care and support.

So i just think we need to do everything we can to be clear on this and mindful of the distinction and I do think we can improve how we do that. We can’t control how everyone else sees or responds to what we say but we can try our best to not put things in a way which can be misconstrued or misused.

I’m really sorry if that ever comes across in an accusatory way. It’s a hard and emotive topic for me but communicating around it poorly is on me to try to improve.

 

[MrMagoo]

Too much whataboutery.

What if it’s not ME. What if it’s psychological.

I never really understand why the treatment for someone with a psychological block on moving or eating is to withdraw any help, though. Fairly sure that’s not in the “How To Treat and Cure Mentally Ill People” textbook, but then I’m not a Dr.

 

[Sean]

I never really understand why the treatment for someone with a psychological block on moving or eating is to withdraw any help, though. Fairly sure that’s not in the “How To Treat and Cure Mentally Ill People” textbook, but then I’m not a Dr.

Our mere existence exposes their profound ignorance and incompetence (on this matter), and their inability to face up to it and admit it.

So their default response is disgust, loathing, fear, anger, contempt, and dismissal.

 

[neurophusion]

The reason why 'doctors in charge' do not take any notice of the 'education' at present is that it is all pretty much nonsense and it is not too difficult to see that.

This also demonstrates double-standards. Those 'doctors in charge' seem willing to swallow the BPS rehabilitation nonsense with glee, despite it being just as bad as all the biobabble and quackery.

 

[hotblack]

I do think sometimes some patients see things said and feel like they are being dismissed. And some healthcare professionals use things as an excuse to dismiss patients or not reflect on their own misunderstanding or mistakes. I think the latter is a real risk for harm and we can reduce how many people get in these dire situations if we had proactive planned appropriate care and support.

So i just think we need to do everything we can to be clear on this and mindful of the distinction and I do think we can improve how we do that. We can’t control how everyone else sees or responds to what we say but we can try our best to not put things in a way which can be misconstrued or misused.

Sorry for going on a bit, but I wanted to explain a bit more. People with good intentions using words which some patients and some healthcare professionals see differently and have a risk of being counterproductive is exactly what the discussion here is about.

I have little doubt of the intent of all in @PhysiosforME or of @Jonathan Edwards or various others. These are people who have stood by us with clear professional costs at times and sometimes have their own personal experiences of the impact ME/CFS. They, like most of us here, want to help. They care.

My comments don’t intend to single anyone out or point fingers. I think at times we can all be guilty of wording things poorly or getting the wrong end of the stick. I know I do. For most of us we’re lucky in that it slides by without much notice. We’re unlucky in that few listen to us either but there we go. Those with higher profiles and impact have a harder time as there is more risk of unintended consequences. They also have the chance to improve things though, it’s a double edged sword and a tricky one to balance.

When people flag a concern I think it’s important for everyone to reflect and consider how we can do better. We as patients don’t want to attack or push away allies. When there is a problem we want to make it as easy as possible for people to reflect and hopefully adapt how they communicate and present things. Those who are having their language questioned I hope can take the feedback on board and do so. We all want the same thing here.

 

[Utsikt]

This also demonstrates double-standards. Those 'doctors in charge' seem willing to swallow the BPS rehabilitation nonsense with glee, despite it being just as bad as all the biobabble and quackery.

Absolutely!

We will never succeed in changing their minds with objectively wrong arguments, but there is no guarantee of changing their minds with objectively correct arguments.

It also presents a challenge for the non-BPS doctors that try to fight for the people with ME/CFS. They have to argue that the behaviour of the patient is correct, but for a different reason than what the patient (or doctor) claims.

The battle is more uphill than it has to be because of the bio babble.

 

[Felis Catus]

It also presents a challenge for the non-BPS doctors that try to fight for the people with ME/CFS. They have to argue that the behaviour of the patient is correct, but for a different reason than what the patient (or doctor) claims.

People with cancer who believe they got it because their ex partner was stressing them out or who believe juice diet, prayer or magnetic bracelets are making them better still get proper medical care. No one scores their beliefs to determine which care tier they should get.

 

[rvallee]

Where? Within the medical community I cannot think of anyone giving a plausible account of ME/CFS. You will not find it in lectures or textbooks or information sheets or videos (except of course for S4ME stuff). Where are people saying it the right way. Certainly not Bateman Horne or governent education sheets.

It's mostly non-physicians, that's certainly a problem. But there are plenty of things said by physicians that are sensible and reasonable, they just don't tend to be combative or insistent about it. So there is a dynamic where only more combative people will speak out, trying to put too much into it, but it's not hard to find them, we have seen plenty over the years.

Obviously this is not a problem of not saying it the right way. Like I said, both the NICE and Cochrane efforts were done the right way. Made zero difference, they just cancelled it outright.

 

[rvallee]

People with cancer who believe they got it because their ex partner was stressing them out or who believe juice diet, prayer or magnetic bracelets are making them better still get proper medical care. No one scores their beliefs to determine which care tier they should get.

Yup. Ultimately this is what kills this argument. It's only ever used as a hammer to bash us when it concerns disputed illnesses. It's an excuse, not a reason. It's a vibe, not an argument.

 

[Utsikt]

People with cancer who believe they got it because their ex partner was stressing them out or who believe juice diet, prayer or magnetic bracelets are making them better still get proper medical care. No one scores their beliefs to determine which care tier they should get.

ME/CFS is still stuck in the psychosomatic dark ages in the minds of some people, and for most others it’s stuck in a muddle of biologically oriented pseudoscience. There’s only an extremely small minority that are involved in it that does not have a completely unrealistic image of what ME/CFS is.

For outside observers, it looks like two opposing parties each arguing about made up things. Even though the disease they are trying to argue about it real and devastating.

So if we want to influence the outside observers (in this instance doctors) with no skin in the ME/CFS game - how should we approach it? What gives us the best chance of ensuring the patient gets the appropriate care? How can we increase the likelihood that they do not fall victim to normal human biases and default to the authority which is BPS in our case? Or that they see some arguments that are wrong and assume everything is wrong?

That’s what I’m trying to talk about. Not how things should be. But about what we can try to do today to maybe save some of the lives we continue to lose to a sadistic system.

I don’t think the BPS folks would have gone away if there was no bio babble in the ME/CFS sphere. But I still think we’d have an easier time convincing others if the babble wasn’t so prevalent. It might not be much, but it might save some lives. Is that not worth the effort to try to influence the people that propagate the babble?

 

[PhysiosforME]

Hello! Office move is just about complete (although super stressful due to unhappy consultants throwing spanners into the works at the last moment!!!!)

Thanks everyone for the discussion on my reflections from Amsterdam. I’ve read through the comments carefully and wanted to respond properly, because a number of important points have been raised.

Just to clarify, I’m responding here as Michelle, because it was my LinkedIn post and my reflections from the Amsterdam conference. I’m not speaking formally on behalf of Physios for ME, although I suspect the others will agree with much of what I’m going to say.

Having gone back to my Amsterdam presentation, I think we probably agree on considerably more than my LinkedIn post conveyed. Ironically, several of the questions being raised here, about what we mean by rehabilitation, the limitations of the evidence for pacing, the distinction between clinical observation and evidence of efficacy, and how cautiously we should interpret emerging physiological research, were also points I was making during the conference.

I think part of the problem is that I tried to compress a week of conference discussion into a relatively short LinkedIn post, and some of the qualification disappeared in the process. I am not trying to dismiss all of the concerns here as misunderstanding, though. In particular, the discussion has made me think harder about some of the terminology used professionally.

There are several different issues being discussed, so rather than write one enormous post I’m going to respond to them separately: rehabilitation; pacing and the role of physiotherapy; clinical experience versus evidence; and the language around complexity/multisystem research.

1. On “rehabilitation”

I think this is probably the biggest area where my LinkedIn wording created debate!

In Amsterdam, I actually spent the first part of my presentation asking “what is rehabilitation?” and showing that the term is used in quite different ways. I included definitions focused on independence, participation and adjustment, as well as more traditional ideas of restoration, and then shared my preferred model that describes rehabilitation as preventative (preventing deterioration) , restorative, supportive and palliative (in this case meaning managing of symptoms not end of life) .

This is based on an older definition from Dietz (1980) and is always the definition I use when asked to present on rehabilitation, particularly in the field of ME and/or Long Covid. It’s this broader definition I had in mind when I used the word in my LinkedIn post.

To be clear, I was absolutely not talking about taking someone with ME, establishing a baseline, and then progressively increasing their activity with the expectation that this would restore function. I do not think reduced capacity in ME can simply be assumed to be deconditioning, and I do not think increasing activity should automatically be the goal.

What I was trying to get at was a much broader role: helping someone avoid deterioration, adapt to current limitations, manage activity more safely, maintain function where possible, prevent secondary complications, and support participation in whatever is meaningful and achievable for that individual. This was the framing in both my presentation and the panel discussion I chaired in Amsterdam.

However I can see why the sentence in my LinkedIn post, “How do we make rehabilitation genuinely individualised rather than assuming that increasing activity is always the goal?”, could understandably be read as though I was still accepting the basic rehabilitation model and simply arguing for a more personalised version of it. Just to reiterate this is not what I meant.

I think the discussion here probably flags a real issue around the use of the word “rehabilitation” in ME/CFS. Some clinicians use it in this broader sense, to include supportive care, adaptation, prevention of secondary problems and helping someone live within their current capacity. Others may understand it primarily in terms of restoration, progression and “getting back to normal”, which also reflects the experiences many of you have described. This means there is a communication problem regardless of what any professional definition says.

I don’t think that means physiotherapists have no role. Quite the opposite. Several people in this thread have described situations where physiotherapy could have been helpful if the clinician had properly understood ME, for example when treating back pain, recovering from an injury or surgery, or trying to prevent secondary problems, but where standard assumptions about progressing activity instead caused difficulty.

For me, that is a very important part of the role: making sure physiotherapy for any reason is adapted to ME, that PEM is understood, and that people are not harmed by applying standard rehabilitation principles without taking the illness into account.

I still think supportive and preventative approaches sit within the broad professional concept of rehabilitation, but fully appreciate the concerns raised about the use of the word rehabilitation. I am interested to get your thoughts on this so will save the rest of my response for a bit later!

 

[hotblack]

Thank you for the detailed post and background Michelle. It’s really appreciated and I hope it helps explain your position and what happened here to people.

then shared my preferred model that describes rehabilitation as preventative (preventing deterioration) , restorative, supportive and palliative (in this case meaning managing of symptoms not end of life) .

I think these are fantastic aims (although the word restorative is still a bit open to misinterpretation IMHO, it’s rehabilitation in another white coat, we cannot be restored to health). But it seems clear these aims are not rehabilitation to anyone outside a very small group of people using a word to mean something different from the common and dictionary definition. And the issues this causes are, as you cover and has been discussed at length here, pretty clear.

So what word would describe these aims better do you think? Will you consider trying to find one and use it professionally as well as advocate for use of it amongst your peers? (At least in the context of ME/CFS).

 

[Evergreen]

I don’t think that means physiotherapists have no role. Quite the opposite. Several people in this thread have described situations where physiotherapy could have been helpful if the clinician had properly understood ME, for example when treating back pain, recovering from an injury or surgery, or trying to prevent secondary problems, but where standard assumptions about progressing activity instead caused difficulty.
...
I still think supportive and preventative approaches sit within the broad professional concept of rehabilitation

Hi Michelle, lovely to have you here and good to have this discussion.

To help me understand what you mean in practice, could you please give examples of
(a) supportive, and
(b) preventative
physiotherapy interventions that you think might be appropriate for at least some individuals with

(i) mild
(ii) moderate
(iii) severe
(iv) very severe ME/CFS?

 

[Trish]

Thank you Michelle for taking the time to explain your approach clearly. I was already aware that this is your view from the excellent Physios for ME materials, so it's good to have it confirmed and confusions sorted out.

For me, that is a very important part of the role: making sure physiotherapy for any reason is adapted to ME, that PEM is understood, and that people are not harmed by applying standard rehabilitation principles without taking the illness into account.

That would be a big advance. My own contact with physios for back pain and shoulder fracture treatments have not taken ME/CFS into account at all. One physio refused to listen, the other was happy for me to adapt the shoulder exercises to do them lying down, but did not see any need for her to help me to do so.

I still think supportive and preventative approaches sit within the broad professional concept of rehabilitation, but fully appreciate the concerns raised about the use of the word rehabilitation. I am interested to get your thoughts on this so will save the rest of my response for a bit later!

I think the discussion here probably flags a real issue around the use of the word “rehabilitation” in ME/CFS. Some clinicians use it in this broader sense, to include supportive care, adaptation, prevention of secondary problems and helping someone live within their current capacity. Others may understand it primarily in terms of restoration, progression and “getting back to normal”, which also reflects the experiences many of you have described. This means there is a communication problem regardless of what any professional definition says.

This reminds me of the problem we have with the word pacing. As you know we have an ongoing problem with BACME's conflation of pacing with pacing-up, and their supporting an inappropriate rehabilitation model, and the MEA supporting it too.

I think the only way to handle these problems with terminology is to stop using them. Why not refer to supportive care instead of rehab, and exertion rationing instead of pacing?

 

[MrMagoo]

Thanks Michelle, looking forward to reading the long-form reasoning behind other words

 

[Jonathan Edwards]

As might be expected, I agree with the others. The word rehabilitation should come nowhere near ME/CFS because it gives the wrong impression and will lead to a perpetuation of bad practice.

Rehabilitationists have often tried to argue that they do more than just optimise recovery - it is their selling stance, as we have seen from Dr Sivan. But the reality is that the health care system has a resricted usage for the term which involves short term care and goal setting. That leads to invalid PROM-based audit projects and bogus 'health services research' such as Heritage. Everywhere in NHS England at least there is pressure to do and discharge, which is not what is needed.

Support and prevention do not need the label 'rehab'. They are essential elements of all long term medical care.

 

[Robert 1973]

I think the discussion here probably flags a real issue around the use of the word “rehabilitation” in ME/CFS. Some clinicians use it in this broader sense, to include supportive care, adaptation, prevention of secondary problems and helping someone live within their current capacity. Others may understand it primarily in terms of restoration, progression and “getting back to normal”, which also reflects the experiences many of you have described. This means there is a communication problem regardless of what any professional definition says.

Thanks for engaging. I agree with this.

The OED defines rehabilitation in the medical sense as:

Restoration of a person to health or normal activity after injury, illness, disablement, or addiction by means of medical or surgical treatment, physical and occupational therapy, psychological counselling, etc.

If the medical definition of "rehabilitation" is inconsistent with the OED definition, that is a clearly a problem that needs to be resolved, particularly in the context of ME/CFS. If there needs to be a umbrella term to include supportive care, adaptation etc. as well as restoration, progression and getting back to normal, then I would suggest that it would be helpful if a new term was coined -- one that doesn't mean something different to what most people think it means.

When my Dad was dying of irreversible liver disease he was discharged from hospital to a rehabilitation unit for several weeks before he returned home. It was a complete waste of time. There was no way he was ever going to be rehabilitated in any sense or the word. All he needed was a care package and a hospital bed in his bedroom. I wonder how much money is wasted on this type of "rehabilitation".