Natalie Hilliard Physiotherapist (Part 1)

Tell us a little about your professional background… how did you become interested in this area of work as a Physiotherapist?

I am chartered Physiotherapist, qualified in 2005, and have worked across many disciplines. These include neurological physiotherapy and musculoskeletal physiotherapy.

I became interested in ME/CFS nearly 10 years ago when I met a good friend who had severe ME. Knowing her and supporting her opened my eyes to the condition. I was taken aback at the staggeringly poor treatment and support that was available. It was shocking to learn how Physiotherapists were causing adverse reactions in this patient group. I wanted to help to change this.

When I met the other members of Physios For ME it all seemed to happen at the ‘right’ time. I met Karen at an ME/CFS conference. She was already in touch with Michelle. Then Nikki came along shortly afterwards.

We all had the same mission – educate Physios about ME/CFS and share information about how Physios can help.

How does working with patients who have Long Covid or M.E. differ from working with other patients?

Fundamentally, the usual ‘reconditioning’ model of Physiotherapy does not work for this patient group. 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. For example, we know there is an energy production dysfunction in this patient group: any treatment needs to take this into account.

> Reconditioning is not the right approach

Usually within Physiotherapy practice, we work using a ‘reconditioning’ model. For example, after a stroke or after a knee replacement, we work with our patient to help them get stronger and fitter. We do this by challenging their muscles or challenging their cardiovascular system. We ‘push’ our patients.

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

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. 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.

> 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.

> 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.

> Nervous system regulation

ANS (autonomic nervous system) regulation practices, such as breathing practices, meditation, nervous system calming strategies and tVNS (vagus nerve stimulation) are also things we can support our patients with. Karen, one of my fellow co-founders, is currently doing her PhD on tVNS in ME/CFS.

> 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

We can then take action by making appropriate referrals. It’s important that patients are getting the right medical intervention as well. This is challenging in the NHS landscape.

We can also support patients with pain management, posture management and equipment needs. Each patient has their own challenges and needs. There isn’t a one-size-fits-all approach.

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.

What was it about your experience with ME/Long Covid that made you join with others to create Physios for ME?

We all had experience of knowing or caring for someone with ME/CFS personally or professionally. Until you know someone with ME/CFS or have personal experience of the symptoms, it’s very difficult to understand the condition. We all had a reason for wanting to make a change in our profession’s understanding of ME/CFS.

The covid-19 pandemic gave us a good opportunity to share our knowledge with other Physios. We knew how important this was as we knew many people who contracted covid-19 would go on to develop ME/CFS or ‘long covid’. I then contracted covid-19 in December 2023, going on to develop ‘long covid’. I still have very mild symptoms but I am fortunate that I have experienced recovery. This experience has given me a deeper understanding of what my patients are going through.

Can you tell us a little about the aims of the organisation and how the project is going?

Our aim is to “research, educate and advocate to improve physiotherapy management for people with ME”.

Our website and social media accounts have shared useful information since we founded Physios For ME in 2019. The project never finishes, there are always new challenges.

We have ongoing research projects in place:

• investigating the use of tVNS (trans-Vagal Nerve Stimulation) in ME/CFS
• and a research article published about ‘pacing with a heart rate monitor’ in the Journal of Fatigue: Biomedicine, Health & Behaviour
• New survey: The experiences of health professionals with ME/CFS and/or Long Covid (with PEM)

Other work we cover includes:

• working alongside other ME charities
• working on the Department of Health Delivery Plan for ME/CFS
• contributing to the updated NICE Guidelines in 2021

In 2023, we also published a book called A Physiotherapist’s Guide to Understanding and Managing ME/CFS.

We have done a huge amount given that we all do this work voluntarily.

Next steps for our organisation

The next big drive is around education for physiotherapists and also about changing the way most NHS ME/CFS services operate. Sadly, there is still a profound lack of medical support. Many services do not offer support for those with severe/very severe ME/CFS. These patients absolutely need support but are often left to fend for themselves.

Post Exertional Malaise (PEM)

Understanding Post Exertional Malaise is of vital importance for anyone with ME or Long Covid, as well as those treating and supporting them.

Could you give us an overview of what is known of the physiology and how this symptom/problem manifests itself?

Post Exertional Malaise (PEM) is considered the hallmark characteristic of ME. Other terminology suggested includes “post exertional neuroimmune exhaustion” (PENE) or “post exertional symptom exacerbation” (PESE). PEM is essential for diagnosis of ME in the IOM (Institute of Medicine), ICC (International Consensus Criteria) and Canadian Criteria.

PEM is the additional symptoms and/or exacerbation of current symptoms in response to exertion. It is not ‘just’ fatigue, research has shown there are over 30 reported symptoms of PEM, including:

• flu-like symptoms
• pain
• muscle weakness
• and cognitive exhaustion.

PEM can be triggered by physical, cognitive, sensory (touch, sound, smell) and/or emotional ‘exertion’.

For some, this could be as little as eating a meal or having a short conversation. PEM tends to be delayed, on average 1-2 days after exertion and can last several days. Sometimes it can last months or even longer.

Repeated triggering of PEM can lead to further deterioration in symptoms, therefore the aim is to avoid/minimise PEM.

We still don’t fully understand the pathophysiology of PEM but there are several theories including:

• mitochondrial dysfunction
• cardiac neural regulation abnormalities
• metabolic abnormalities.​

How can PEM be identified? Are there specific things to look out for when trying to work out if you (or a client) might have it?

PEM is identified by listening carefully to the patient. The following scenarios are very suggestive of PEM – listen out for reports such as these:

• they need to rest after a 5 minute walk or after taking a shower because they feel depleted or unwell
• “I went to the shop and I know I over did it, I was in bed for 2 days afterwards”
• “I felt okay whilst I was on my exercise bike but the next day I was hit by a wave of exhaustion and was non-functional for the whole day”.

Because PEM is often ‘delayed’, it makes it extremely difficult to manage. If someone has severe or very severe ME/CFS or Long Covid it can be triggered by seemingly minor things. Even something like a noise or being moved in bed can cause PEM.

It’s hard to understand this if you haven’t experienced it yourself or in a loved one. It is extremely debilitating.

There is also the DePaul Symptom Questionnaire – Post-Exertional Malaise (DSQ-PEM). This can help to identify PEM in a more ‘formal’ way.

What do patients need to know as they manage their symptoms as best they can?

In terms of PEM, knowing that an exacerbation of symptoms can be delayed is key to understanding and managing PEM.

Keeping a log of activity and symptoms can help to look for patterns in PEM or triggers. This is particularly important for recently diagnosed people who are still figuring out their own triggers and limitations.

Pacing and other coping strategies can be quite gruelling and depressing, even when they give patients a modicum of control over their symptoms. How do you, as a physiotherapist, support patients to learn pacing?

This is very true and it’s extremely challenging, especially for those with severe and very severe ME. I highly recommend anyone struggling to seek support from a psychological therapist as well. It’s so important: the emotional aspect of ME/CFS is gruelling and depressing. A patient often needs mental/coping strategies in order to cope.

Pacing physically can be done through a number of ways. Techniques include:

• using a heart rate monitor (as mentioned before)
• using a step counter
• or by working out the best activity:rest ratio through the day
• Some people find the ‘spoon theory’ a useful way of pacing and also of explaining it to others

Pace, Plan, Prioritise

It’s also important to consider the 3 P’s – pacing, planning and prioritising – to help establish a baseline of activity.

Pacing is not just one set in stone ‘thing’. It is moveable/changeable and needs constant adjustment, just like the human body.

Of course, in very severe cases, pacing is extremely strict. There is little, if any, room for adjustment or flexibility. This is extremely difficult. The person needs a good care support structure in place in order to be as ‘stable’ as possible.

Macro/Micro pacing

When I first meet someone with ME/CFS or Long Covid in my practice, I try to look at ‘macro’ and ‘micro’ pacing.

Macro pacing is about how a person structures their day/week/month. This could include:

• looking at work or study hours/routine
• trying to make sure energy is used to create stability
• avoiding going through peaks and troughs.

Micro-pacing is more about daily/hourly pacing strategies – for example:

• how many rest breaks are needed during the day?
• Is there a way to pace an activity that might be quite energy consuming?

Often showering and food preparation/cooking are high energy demanding activities that can be broken down into smaller chunks of activity.

For someone recently diagnosed, using an activity diary can really help them understand their own situation in more detail.

Heart Rate Monitoring to support pacing

As mentioned previously, some patients find using a wearable to track heart rate and HRV (heart rate variability) a useful pacing tool. HRV is a measure of the autonomic nervous system and correlates with overall heath. It can help a person to understand when bodily energy/resources are being depleted and subsequently, can help to encourage a more restful day for example. These wearables also track sleep and body stress. The visible app is a ME/CFS/Long covid specific wearable device that helps pacing using HRV.

External devices can be very helpful for some people. For others they can cause others anxiety. It’s important to support someone who wants to try using a device for pacing.

What would you like to share with therapists who want to understand how emotional exertion and PEM could impact therapy experiences?

Through experience, I have seen that PEM can cause emotions to be felt more intensely. There can be bigger mood changes such as depression or tearfulness, or heightened anxiety and fear. It’s like the nervous system goes into fight or flight because of PEM. Or it can swing the other way too, into a more dorsal-vagal response/freeze response.

I have also seen that experiencing an emotional trigger, such as having an argument or a bereavement can cause PEM. It seems like it is a 2-way reaction. I have no evidence to support this, and I don’t fully understand it, but have seen it time and time again.

People with ME/CFS or Long Covid often say that their stress tolerance is reduced, that their body can more easily react to emotions. This is the same for certain sensitivities, like food or smells or noise. When I was going through Long Covid myself, I completely recognised this in myself. I was particularly aware of emotional triggers causing a symptom flare-up.

I think hormones can play a key role in this too. Many patients with menstrual cycles will often experience PEM around the time of their period and this can amplify emotions. Much more needs to be understood about hormones and ME/CFS: we hope to explore this further in our research.

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We look forward to publishing Part 2 of Natalie’s article in due course – sign up for our monthly newsletter to get an update when it’s published!

Some useful resources related to issues that are touched on in this article

> Websites

• Natalie Hilliard’s private physiotherapy practice
• Physios for ME website
• Workwell Foundation (USA)
• Dialogues for a Neglected Illness video series

> Book

Who is the book aimed at?

The primary audience is all physiotherapists, not just those who work in M.E. services. It contains information relevant to any physiotherapy practice that must be adapted to work safely with people with ME. It would be of interest to all allied health professionals, not just physiotherapists.

I have ME, would the book be suitable for me?

Though the book is structured with health professionals in mind, the contents may be of interest to people with M.E. We are getting feedback that it is relatively easy to understand.

The book is not designed as a “self-help guide”. We would encourage anyone thinking of changing their current approach to seek appropriate medical guidance (although we appreciate this is sometimes difficult to find).

Videos recommended by the WorkWell Foundation

The Workwell Foundation (USA) endorses these videos which cover Pacing, Severe/Very Severe ME, Activity Management and related issues. Highly recommended resources.