UK: Physios for ME

[Sasha]

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.

I calculated my aerobic threshold according to the supposed ME/CFS formula and it was so low I could barely do anything so I had to ignore it, and yet I don't go around getting breathless the whole time, so maybe you're right and they're not related in real life very much.

 

[John Mac]

 

[Binkie4]

Just released by Physios4ME to acknowledge their 6 years in existence

PhysiosforME, 1 day ago, 4 min read

Karen photo-bombs the team

It is now six years since the formation of Physios for ME, when four physiotherapists with a shared goal – to improve physiotherapy care for people with ME – got together online, gave ourselves a name and made a long list of goals. Our work is predominantly in our spare time, but we are gifted with links to academia through one of our team which has allowed our research projects to really flourish.

What we have achieved so far has exceeded everything we had first planned, but with each passing year our ambitions have grown. We have diverse experience and eclectic interests.
For example:

• One of us is an avid player of lawn bowls
• One of us attends a punk/rock festival annually
• One of us has published four horror novels
• One of us goes to France every year to cycle up mountains (slowly)

This weekend all four of us got together in person and we had a productive time planning, plotting and celebrating our progress over the last twelve months.

Our book
Our book continues to receive positive reviews and this month a German language version was released via hogrefe. We are thrilled our work can reach a wider global audience. With regards other languages, our publisher can typically only licence translation rights to another publisher or organisation, not individuals. An interested party can approach us with regards translation and we can then pass this on to our publisher.

Research
The focus of this year has been our original research projects.

• The feasibility study on transcutaneous auricular vagus nerve stimulation began recruitment in September 2024 and data collection is just about to complete. This project also marks the start of Karen’s PhD journey – good luck Karen!
  
• Through her role at the University of Liverpool, Nikki is supervising a number of fantastic Masters students working on projects such as a survey of athletes with Long Covid and/or ME, and a survey and in-depth interviews on the experiences of people with ME and Long Covid with vagus nerve stimulation.
  
• Michelle was invited to be a scientific advisor on the ERASE-LC trial.
  
• Natalie was clinical advisor to a study on energy management for long covid, which was published as preprint this year.
  
• Nikki was a co-author of a paper called "Long COVID is NOT a Functional Neurologic Disorder"
  
• Michelle was co-author of a paper about priorities for research, education and clinical practice and policy from the Long COVID Physio International Forum
  
• Michelle and Nikki have peer reviewed articles about ME.
  
• Finally, the pilot study on heart rate monitoring has been analysed and written up, and we are hopeful for a publication in the near future.

Presentations
We are often asked to deliver training or present our work, and as much as we’d love to say yes to everyone, we have limited time and resources unfortunately. However, we have been quite busy over the last twelve months! You can see links to these presentations where available over on our presentations page.

• ME CFS Long Covid: Digging Deeper, run by the Norwegian ME Association – presented on physiotherapy management for ME and Long Covid to health professionals, and then to people with ME.
  
  
• Lecture on ME/CFS and Long Covid to undergraduate physiotherapy students at the University of Liverpool and University of Newcastle.
  
  
• Sheffield ME and Fibromyalgia group – physiotherapy management of ME and service delivery in the NHS
  
  
• Long Covid syndrome Rehabilitation: community of practice (Birmingham region) – presentation about vagus nerve stimulation for people with ME
  
  
• Royal College of Physicians (Edinburgh) – presentation to over 200 delegates on ME, PEM and pacing
  
  
• Workshop on management of PEM to the DHSC research working group
  
  
• CSP annual conference – Heart rate monitoring for people with ME and Long Covid

Advocacy and support
We have met with senior representatives of the Chartered Society of Physiotherapy to reiterate the importance of physiotherapists understanding how to manage people with ME safely. We will be having ongoing communication and look forward to working with them to further raise awareness.

Nikki and Michelle have continued to be members of working groups for the Department of Health and Social Care delivery plan. Our response will follow its publication, which is due imminently.

We supported the There for ME campaign to fund the plan, and we were delighted to have met with the ME Local Network UK team (MELNUK) with whom we look forward to future collaborations.

Our inbox remains busy with queries from people with ME and physiotherapists, and although we are unable to give personal medical advice or recommend private physiotherapists, we do our best to provide support or signpost resources.


Plans for the next twelve months
Our focus will be continue to be research. In November 2025, Nikki will be presenting three projects at the Chartered Society of Physiotherapy conference – a study on lactate in healthy subjects, the outcome of interviews with people with ME who use heart rate monitoring to pace, and interviews of people with ME who have tried vagus nerve stimulation.

We also have several original projects in the pipeline, one of which may be the biggest we have ever attempted.

Let’s see what our seventh year brings!

 

[Dolphin]

Physios for ME on Facebook:

We've just published a pre-Christmas update on our blog with an overview of our work the last few months.

Wishing everyone a peaceful break and we'll see you again in the New Year

A Christmas update from Physios for ME

Before we take a short break over the holidays, we thought we’d share a few updates on our work over the last few months. ResearchThis remains one of our main focuses and there’s a lot going on, driven by our research lead Dr Nicola Clague-Baker.In October we had another publication success with...

www.physiosforme.com

 

[Dolphin]

From the Chronic Living Therapy e-newsletter


Natalie Hilliard - Physiotherapist

Natalie is a friend of someone with Severe ME, she has had Long Covid herself, and is an experienced Physiotherapist, author and researcher. She co-founded Physios For ME.

With tips on how to support pacing (particularly for the newly diagnosed) and advice on spotting PEM in clients, this is a really useful article for therapists to delve into.

(She'll be back in 2026 for Part Two...)

Read Natalie Hilliard's article (part 1)
https://chroniclivingtherapy.com/natalie-hilliard-physiotherapist-part-one/

 

[Utsikt]

Their conclusion, that exercise is not the solution to ME/CFS, is good, but there are a lot of problematic statements here. Actually, almost everything is some kind of wrong.

Fundamentally, the usual ‘reconditioning’ model of Physiotherapy does not work for this patient group.

Does it work for anyone? I’d love to see the high quality trials..

It is therefore imperative that Physiotherapists understand the evolving pathophysiology of ME/CFS and Long Covid. They can then apply this knowledge to any treatment plan.

There are no treatments..

For example, we know there is an energy production dysfunction in this patient group: any treatment needs to take this into account.

An energy production dysfunction has not been established.

This is why it is so crucial to get physiotherapy right. It’s important to say here that a skilled Physiotherapist working with this patient group will be able to help gauge when a patient is ready to expand their activity or indeed, start to ‘exercise’ or move more.

Not all exercise is bad, but it needs to be:

• the right type
• the right amount
• prescribed at the right time
• monitored very carefully

What is the basis for thinking that exercise might help some? Which benefits are exercise supposed to produce, and are they worth the cost of having to do less of something else?

What issues do you support patients with?​

There is a lot! Mostly we support people with energy management/pacing. We use various approaches, techniques and tools. These approaches aim to help stabilise symptoms and are not necessarily curative.

«Not necessarily curative» is an understatement. It’s never curative.

However, I have seen many patients with long covid go on to make a full recoveries from a solid pacing plan. It’s important to have the right advice as soon as possible after any post-viral diagnosis.

Yeah, that’s called natural recovery. Nobody are arguing against early pacing, but to say that it might influence your trajectory other than avoiding avoidable deterioration is completely unfounded.

> Pacing with a heart rate monitor​

We help our patients with using a heart rate monitor to support with their pacing. Heart rate monitoring is based on research by The Workwell Foundation. It shows that by keeping under the anaerobic threshold, some people with ME/CFS and Long Covid can improve and stabilise their symptoms. We have a page on our website all about heart rate monitoring.

There is no basis for saying that staying below the anaerobic threshold specifically can improve or stabilise symptoms, outside of what you’d achieve with general pacing.

> Appropriate ‘excercise’/movement​

We also support our patients with appropriate ‘exercise’/movement. As I said previously, exercise/movement needs to be prescribed at the right time. If someone is in a relapse or cannot manage everyday activities, adding in an exercise plan would likely cause them PEM (post-exertional malaise). It should be avoided in this situation. The type of exercise/movement is also important to consider and it needs monitoring.

More of the absolute belief that exercise is somehow good for your health if you’re sick.

> Identifying other, sometimes treatable co-morbidities​

We can help identify other co-morbidities, such as:

• POTS (postural orthostatic tachycardia syndrome)
• MCAS (mast cell activation syndrome)
• various types of hypermobility

Do we even need to talk about this?

Severe/very severely affected patients​

Assistance for severely and very severely affected people is often sought from the main caregiver. Advice can include:

• signposting to other services
• making sure there are appropriate moving and handling practices in place
• advice for avoidance of pressure sores and contractures, if the person is bedbound.
• help with reports for benefit applications.

In this role, we are often a sounding board for the person with severe/very severe ME or for their family/care giver.

This is the only point so far without any objections.

The second part of the article about PEM is better, even though the recommend DSQ for identifying PEM formally, and they could probably have given even more precise descriptions by borrowing from the factsheet.

It’s clear that Hilliard is familiar with ME/CFS and PEM, and would do a far better job at being a physio for pwME/CFS compared to almost any physio out there, but the physio reflexes seem to be kicking in regarding exercise and rehab, and there are too many unfounded claims in the first part.

 

[Trish]

I agree it's better than some other articles we've seen about help with pacing, but there are too many things that are concerning, particularly the claim that a physio can help determine when to increase activity. We have no evidence that's true.

In ME/CFS or Long Covid, it is fundamentally the opposite approach. Less is more, pacing is the priority, there is no ‘pushing’ through. The reconditioning model for this patient group simply does not work and can be harmful. ‘Exercise’ based models can cause someone with ME/CFS or Long Covid to relapse. For some, this can be a permanent deterioration.

This is why it is so crucial to get physiotherapy right. It’s important to say here that a skilled Physiotherapist working with this patient group will be able to help gauge when a patient is ready to expand their activity or indeed, start to ‘exercise’ or move more.

Not all exercise is bad, but it needs to be:

• the right type
• the right amount
• prescribed at the right time
• monitored very carefully

 

[Kitty]

It’s important to say here that a skilled Physiotherapist working with this patient group...

I can't understand why a physio would even be working with people with long Covid.

Fair enough if they have an injury or are developing physical problems due to being bedbound, but otherwise there's no role for them at all.

 

[Utsikt]

I can't understand why a physio would even be working with people with long Covid.

Fair enough if they have an injury or are developing physical problems due to being bedbound, but otherwise there's no role for them at all.

Agreed. As this post demonstrates, no matter how well meaning, you’re bound to end up with something resembling pacing up or excessive focus on prioritising physical activity for the sake of doing the physical activity.

 

[Kitty]

As this post demonstrates, no matter how well meaning, you’re bound to end up with something resembling pacing up or excessive focus on prioritising physical activity for the sake of doing the physical activity.

Yep. And what tends to get forgotten is that appointments with any kind of clinician are stressful and exhausting.

I'm only moderately affected, but a medical appointment uses up at least 50% of my going-out-of-the-house capacity for the whole week. If the clinician's delayed, the waiting room's noisy or I couldn't find a parking space, I'll also have a day of miserable PEM afterwards.

That's a major sacrifice, and people shouldn't be asked to make it unless they're getting more out of the appointment than they're putting in. It's hard to see how that could be the case.

 

[rvallee]

I agree it's better than some other articles we've seen about help with pacing, but there are too many things that are concerning, particularly the claim that a physio can help determine when to increase activity. We have no evidence that's true.

I have not seen any evidence for the Goldilocks zone either, where everything about the exercise has to be "just right". It's a common trope, always used as an excuse for why this type of exercise at this intensity level on this schedule and coached this way doesn't help this person, but it's never been more than an assertion that has allowed for failure to never be considered.

Helping this patient population requires letting go of faith-based biases like this. No, rehabilitation cannot magically do what nothing else can do, and this idea that there is this perfect combination of things that can unlock everything has been extremely harmful for so long.

I'm assuming that saying so would be extremely unpopular, but that's just how life is, it doesn't care about intent and good will and anything of this sort. Sometimes there's nothing you can do. This is understood everywhere about all things except in so-called evidence-based medicine where trying is considered its own achievement, or whatever.

 

[rvallee]

I can't understand why a physio would even be working with people with long Covid.

Fair enough if they have an injury or are developing physical problems due to being bedbound, but otherwise there's no role for them at all.

Physicians have been sold this lie and bought it whole and are sending sick people with PEM and other chronic illnesses that have nothing to do with lack of fitness or a deficit of exercise all the time, so it is good that physios know what to do about it.

But unless there is an additional problem where PEM is in the way of recovery, the only physiotherapy to do here is nothing. This is not a problem that falls in this category. In fact it would immensely helpful if they simply sent them back saying "this is not a problem where physiotherapy can help, no matter how much you want to shake some BS Cochrane review about it so please stop offloading this problem unto us because we'll send them all back". It would send a message, a useful one for a change.

 

[Sean]

I have not seen any evidence for the Goldilocks zone either, where everything about the exercise has to be "just right".

And, of course, requires the instruction and oversight by a 'professional expert' to achieve.

It just continues the long discredited and very destructive assumption that patients don't know their own body and its limitations, but by some miracle, against all evidence and logic, the experts do.

Take away that unjustified assumption, and the whole claim falls apart. As it should.

 

[Peter T]

To be fair, early on in the course of my ME I would have benefited from an explanation of PEM, permission to do less and someone to talk through how to reduce my activity levels. Who would be best to do this is more of an open question.

This is probably something different people have different needs in relation to. I struggled for a long time with pacing.

 

[PhysiosforME]

To be fair, early on in the course of my ME I would have benefited from an explanation of PEM, permission to do less and someone to talk through how to reduce my activity levels. Who would be best to do this is more of an open question.

This is probably something different people have different needs in relation to. I struggled for a long time with pacing.

This is certainly my approach when I work with people with ME and or Long Covid symptoms - your point about permission to do less is probably one of the most useful interventions that we have! It is fascinating as someone with a background of promoting physical activity/exercise, the general consensus is that people don't do enough and how can we get them to do more - however for people with ME and LC the message that exercise is good is hard to resist!

 

[Trish]

I agree that permission to do less can be very helpful. In a way, having a physio saying that to a pwME and to their doctor, family, employer, school, carer, could be very helpful. Coming from a physio, whose training and expertise are usually seen as being about getting people to increase activity may help in getting the message across that ME/CFS can't be helped with pushing to do more.

 

[Jonathan Edwards]

Yes, I can see a role for enlightened physiotherapists in this.

The real obstacle to get over is the ingrained 'reconditioning model' that physios so often seem to take as the evidence-based norm. I agree with Utsikt that we probably have little or no evidence for such a 'reconditioning model' in any disease.

As I have said before, there is a confusion between the fact that exercise helps to keep well people well and the idea that exercise makes ill people better. It doesn't (except maybe where there are neuro-behavioural reasons for not moving). There is also confusion between good health and cardiovascular fitness. Good health does not require fitness beyond doing normal daily activities.

 

[V.R.T.]

I agree that permission to do less can be very helpful. In a way, having a physio saying that to a pwME and to their doctor, family, employer, school, carer, could be very helpful. Coming from a physio, whose training and expertise are usually seen as being about getting people to increase activity may help in getting the message across that ME/CFS can't be helped with pushing to do more.

Agreed, this would have saved my functioning and kept me from deterioration.

 

[MrMagoo]

Sometimes pwME have a problem which requires physio though.
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”.

“we won’t follow the reconditioning model”
yes the reconditioning model, about that, it’s a load of nonsense I don’t know why people use it, since when has it been any use…

It just dilutes any salient points of discussion relevant to the specific document and the actions or assumptions relating to ME/CFS.

Also bearing in mind that physios for ME actually have a presence here and are very engaged with S4ME and are probably more open to constructive feedback it seems a real waste to pick everything apart “just because” when actually there could be some genuine positive outcomes, instead of just deciding the whole discipline of Physio is wrong, and therefore anything flowing from there is downhill.

 

[Utsikt]

however for people with ME and LC the message that exercise is good is hard to resist!

Seems like it wasn’t possible to resist for Hilliard either.

Yes, I can see a role for enlightened physiotherapists in this.

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

It seems to me that in order for a physio to contribute to the care of pwME/CFS, they have to unlearn all of the physio-stuff and you’re just left with generic healthcare principles that any nurse could take care of equally well.

My experience so far is that none of the physios are able to disregard their field’s ground truths, so you end up with some kind of pacing up version no matter what.