After a long and distinguished career as an ME/CFS specialist clinician, Dr Sue Pemberton has now retired. She created and ran the Yorkshire Fatigue Clinic which was regarded as one of the best specialist services in the country. Recently, she very kindly agreed to an interview and revealed some of her opinions about the NHS and the care and support people with ME/CFS should receive.
You can read the full interview in ME Medical and ME Essential magazines which will be published at the end of June and made available to healthcare professionals and to members of the charity.
“It has been a real pleasure to work with Sue on so many different projects over the years – especially in relation to the importance of good activity management and how this needs to be considered not only by clinicians but also employers and people who are assessing DWP benefit claims. Sue has always brought real in-depth knowledge and practical experience to discussions about Pacing and to the publications that we have worked on together. She is going to be badly missed by her patients and her colleagues. I wish her a very happy and long retirement in God's Own County!”
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
“I was first introduced to Sue in 2021 during the early stages of the new service development on the Isle of Man and was struck by her generosity in sharing knowledge and experience. Pearls of wisdom were delivered clearly and eloquently. Sue’s approach to tailored therapy – built around individual need – is spoken of very highly by patients and her peers in the NHS. Sue has achieved a gold standard reputation. I did attempt to meet her sooner – when I developed severe ME – as my mum’s research indicated the Yorkshire Fatigue Clinic had a brilliant reputation. If only I had been living in Yorkshire at the time. Retirement has been well earned and making such a big impact on so many people’s lives should bring great pride!”
Juan Corlett, Engagement Lead for Community Support and Integrated Care, ME Association.
Introduction
Dr Sue Pemberton (PhD, DipCOT, BHSc, MSc) was Founder and Therapy Director of the Yorkshire Fatigue Clinic and an author of Fighting Fatigue: A Practical Guide to Managing the Symptoms of CFS/ME (1999). She helped develop one of the first NHS specialist services for ME/CFS in Leeds and became the first Consultant Occupational Therapist for ME/CFS in 2004.
She became Clinical Lead for the Leeds and West Yorkshire ME/CFS specialist service and – as regional Clinical Champion – she got involved in training and service development at a national level. In 2012, Sue and her colleague, Dr Philip Wood, established the Yorkshire Fatigue Clinic which was an independent provider of medical and therapy assessment and rehabilitation for people with fatigue disorders, specialising in ME/CFS, and taking referrals from the NHS.
Sue has achieved a distinguished career helping people with ME/CFS and other medical conditions that can cause chronic fatigue. More recently she lent her expertise to the creation of a new ME/CFS and Long Covid specialist service on the Isle of Man. We wish her all the very best in a well-deserved retirement and thank her for the help and support she has given to the ME Association and to people affected by ME/CFS over the last 33 years.
Please note: The Yorkshire Fatigue Clinic has closed following Sue’s retirement. New patient referrals in York and North Yorkshire are being directed to the City Health Care Partnership: Chronic Fatigue Service.
1. When and how did you become involved in helpling people with chronic fatigue and with ME/CFS?
Although I have spent nearly all my career working with people with ME/CFS, my starting point on this journey was completely by chance. Shortly after qualifying as an occupational therapist, I wanted to move to Leeds and was offered a post on a specialist inpatient unit for people with combined physical and psychological needs, such as people trying to cope with deteriorating neurological conditions. After I started in 1990, I was approached by one of the Consultants who was setting up a randomised controlled research study, alongside a local Infectious Diseases Consultant, trialling a medication for ME/CFS and they wanted to add a therapy component. I admit that at the time I knew nothing about the illness, which was still being referred to as ‘Yuppie Flu’, but I was enthusiastic and agreed to join the research team. Sadly, after 2 years of work on the study it was never published due to the main researcher emigrating, but it left a lasting legacy. I could see the vast lack of understanding and support for people with ME/CFS and had enjoyed working with people who were so motivated to improve or get help, that I stayed involved for the next 33 years.
“It is important to recognise that ‘chronic fatigue’ is a symptom, defining profound exhaustion that has lasted for over 3 months, whereas ME/CFS is a specific illness with a range of symptoms and a pattern that is well recognised…”
2. Are there many people with ‘chronic fatigue' who don't have ME/CFS?
Yes, it is important to recognise that ‘chronic fatigue’ is a symptom, defining profound exhaustion that has lasted for over 3 months, whereas ME/CFS is a specific illness with a range of symptoms and a pattern that is well recognised as post exertional malaise. However, fatigue as a symptom is often dismissed and maligned. It is the most debilitating symptom, significantly reducing quality of life, and occurs across most physical and mental health conditions. Over the years I have run training for professionals working in areas, such as cancer, stroke, head injuries, EDS/Rheumatology, end of life care and, more recently, Long COVID because fatigue is such a disabling symptom for their patients. I understand why people with ME/CFS feel they are being dismissed when the symptom of fatigue is referred to, as they think it negates all their other symptoms and underlying causation. However, having worked with so many sufferers over the years it is also important to recognise the extreme impact of fatigue in ME/CFS. This is a symptom that can be managed more effectively for many people, such as through Pacing, and can be an important key, through understanding the biology of fatigue, to improvement in those people who can achieve it.
“I could have moved into another area of practice to continue working in the NHS, but I still wanted to work with people with ME/CFS. So, the only option was to set up on my own but there was no long-term plan, other than to keep trying to help the people that I could…”
3. What made you decide to open the Yorkshire Fatigue Clinic and how long did it take to establish?
I had never considered or even been interested in setting up an independent service outside of the NHS, until I was made redundant in 2012. I had been working as a Consultant Occupational Therapist and Clinical Lead for a large and successful NHS team when the service was redesigned and my post, and that of the Consultant Immunologist, were removed. I could have moved into another area of practice to continue working in the NHS, but I still wanted to work with people with ME/CFS. So, the only option was to set up on my own but there was no long-term plan, other than to keep trying to help the people that I could. However, I strongly believed that people with the condition shouldn’t have to pay for their care, particularly as people are often unable to work, have limited income and rehabilitation support is not a quick process. So, I approached the local NHS Commissioners I had worked with in my previous role, and they agreed to allow GPs to refer to the new clinic under the NHS, providing they agreed to each individual case. Within a year, I was able to demonstrate the clinical outcomes and cost savings of the service, and the demand was increasing. I had to take on 2 additional occupational therapists who I had worked with previously and had the right experience. Within 2 years we were made the preferred NHS provider for the area and within 3 years of starting we had our first NHS contract, which enabled us to expand the service to include a GP with Special Interest who could provide medical diagnosis and support.
“I think that 1 person summed this up saying ‘you have been the only consistent person in my life over the past 20 years, you have been there for me when I had relapses and supported me to make changes when I was ready and able to, because you always believed me’. To me that is the valuable difference professionals can make...”
4. Do you feel your clinic made a difference to people's lives?
I know the clinic made a difference to people’s lives in many ways, because they would tell us. From the very beginning it was important to me that the clinic was listening to the people in the community and what they needed. We did this by constantly seeking feedback through online surveys, social media, and importantly through links to local support groups. Over consecutive years, we also received Health Watch Awards for making a difference, which are based on the feedback of people who use health services.
In 2019 we compiled all the survey feedback we had since starting the clinic to submit to NICE as part of its data collection. The key themes found were the importance of staff support, specialist knowledge and ability to individualise sessions for each person. People felt that having validation, a model to understand their condition and developing tools through therapy sessions to stabilise and work towards improving their illness, helped them to cope. We also collected standardised outcomes which showed that 58% of responders reported feeling a significant improvement (rating themselves as very much/much better) with a positive change overall for 85% of responders. However, although these numbers are important for research, as a therapist where I saw the difference to lives was in the individual experiences.
One of the differences in our clinic was that we spread therapy over a longer time, which meant most people were with us for over a year, some for many years. So, we got to know them. The difference then is shown in each ‘thank you’ that you get, such as a young person who has got their exams, someone who has had a successful return to work, or been able to drive again, to someone being able to take their child to the park for the first time. I have also worked with severely affected patients over many years, and some would question what difference has this made? As although I have worked with some who have achieved a dramatic difference, for many their condition is still severely debilitating. I think that 1 person summed this up saying ‘you have been the only consistent person in my life over the past 20 years, you have been there for me when I had relapses and supported me to make changes when I was ready and able to, because you always believed me’. To me that is the valuable difference professionals can make.
“I think that the 2021 NICE Guideline was an important landmark, although I recognise that many people would have liked it to go further. In the context of health care delivery, it was seismic… I value the recognition it gives to ME/CFS, particularly including social care, and the need for professionals to have an awareness and training around the condition…”
5. What do you like about the 2021 NICE Guideline on ME/CFS
I think that the 2021 NICE Guideline was an important landmark, although I recognise that many people would have liked it to go further. In the context of health care delivery, it was seismic. People forget that prior to the 2007 Guideline, some health professionals were able to say that the condition did not even exist, as there was no authorised guidance to say that it did. However, the 2021 document was the first official NHS guidance that took on board the experience of people with the condition and not just that of researchers, who may have their own interests or theories.
I value the recognition it gives to ME/CFS, particularly including social care, and the need for professionals to have an awareness and training around the condition. I think the change in the language is also helpful as is addressing very specific treatments, such as CBT and GET, which have historically been based on the deconditioning model. Although most clinicians working in current services support it, there are still some within professional organisations or who no longer work in services, who still resist it and so there is ongoing work needed to get everyone onboard as a starting point to moving forwards.
“From the very early days it was clear to me that people with ME/CFS are not avoidant or depressed, and they don’t choose not to do an activity out of fear or unhelpful beliefs (which underpins the deconditioning model). The problem is when they feel any improvement they will try and be more active, usually pushing beyond their capabilities, and then experience increased symptoms as a result…. “
6. What have you learned about people with ME/CFS?
What I have learnt about people with ME/CFS is how much they don’t want to have it and will do anything to try to get better – often leaving themselves vulnerable to be taken advantage of by people who promise instant cures. Most of the people I have worked with over the last 30 years are motivated, hard-working, determined and often prioritise the needs of others over themselves.
From the very early days it was clear to me that people with ME/CFS are not avoidant or depressed, and they don’t choose not to do an activity out of fear or unhelpful beliefs (which underpins the deconditioning model). The problem is when they feel any improvement they will try and be more active, usually pushing beyond their capabilities, and then experience increased symptoms as a result.
These observations of how people are impacted by the illness, different findings from research studies on biological changes, and our experience of what helped people to stabilise/improve, is why as a clinic we developed a different clinical model as a foundation for our therapy. This was based on the disruption caused by the illness to the body’s normal regulatory systems, such as the autonomic nervous system, hormonal control, and immune reactions. The dysregulation model reflects the impact of exertion on the body as well as the problems caused to everyday functions, such as sleep, eating, ability to rest and being able to be physically and cognitively active.
I would also make a final point. We use the label ME/CFS to cover a group of symptoms, when actually there are different subgroups underneath it. Not everyone who meets the criteria has the same type of problem. There are many people with a typical post-viral reaction with fluctuating symptoms in response to daily demands. However, there are other groups where there is a very clear association with other conditions, particularly Joint Hypermobility and Postural Orthostatic Tachycardia Syndrome (PoTS). Research also indicates that there may be an additional crossover in this group with neurodiversity and clinics are seeing increasing referrals for people with Autistic Spectrum Disorder or ADHD who meet the ME/CFS criteria. Then there are people who crossover with other disorders such as Fibromyalgia, Chronic Migraine, hormonal issues, and chronic depression. So, I think it is important to bear in mind that ME/CFS is complex and confounded by these different groups, which can be problematic for research and for finding effective treatments that suit everyone.
“I feel there are subgroups under the Long Covid label and that one of these groups will include people who will also meet criteria for ME/CFS, POTS, orthostatic intolerance and conditions such as Mast Cell Activation Syndrome (MCAS). Although Long COVID was an opportunity for funded research and learning (that could also help people with ME/CFS), it was also likely that those people who didn’t recover would be left behind, and as Long COVID Clinics close, they would be left in the same position that people with ME/CFS have been over so many years.”
7. What can clinicians working with Long Covid learn from ME/CFS?
I have now done a lot of training for staff working with Long Covid, or Post-Covid Syndrome, as this has been a completely different type of condition for many professionals to work with. As ME/CFS is an illness that can commonly be triggered by a viral infection, and is not specific to any one virus, then many of us felt it was inevitable that there would be some people who would develop ME/CFS following a Covid infection.
Again, we know the importance of recognising that for some people post-viral recovery will not be a straightforward process of reconditioning. For many people they will experience post-exertional symptoms and that this means the body’s ability to regulate its response to increased exertion is different and needs to be a key aspect of any rehabilitation intervention.
As with ME/CFS, I feel there are subgroups under the Long Covid label and that one of these groups will include people who will also meet criteria for ME/CFS, POTS, orthostatic intolerance and conditions such as Mast Cell Activation Syndrome (MCAS). Although Long COVID was an opportunity for funded research and learning (that could also help people with ME/CFS), it was also likely that those people who didn’t recover would be left behind, and as Long COVID Clinics close, they would be left in the same position that people with ME/CFS have been over so many years.
History shows us that it is easy to reattribute conditions we don’t understand to psychiatric causes, rather than recognising we don’t have the knowledge yet to understand them.
“I have twice been in situations where the ME/CFS service I was involved in was threatened with closure, due to funding restrictions. Interestingly on both occasions it was the patients who saved the service, through campaigning and advocating for their needs…”
8. Do you feel everyone with ME/CFS should have access to a specialist service in the UK?
I believe that all people experiencing debilitating health conditions, particularly where we have no drugs or treatments to resolve their condition, benefit from access to on-going health support that can improve their quality of life.
For people with ME/CFS, I think an important aspect of this is that the service has specific expertise and knowledge in this illness and is not part of a generalist approach. However, the reality of health care funding is that there is always conflict over where to allocate NHS resources. I have twice been in situations where the ME/CFS service I was involved in was threatened with closure, due to funding restrictions. Interestingly on both occasions it was the patients who saved the service, through campaigning and advocating for their needs.
The reality is that health care is often focused on acute problems that can be fixed, whereas in an ideal world anyone with ME/CFS, however severely affected, would have access to individualised interventions and support that meets their needs, for as long as they wanted to access it.
“From my experience liaising with other ME/CFS services around the dysregulation model, I can see how motivated local professionals are to improve the experience for patients and move away from historic ideas and misconceptions, but more training and support is needed.”
9. How can specialist services do more to help people with ME/CFS?
I think that in any area of health, with any illness, you always feel that more could be done, but the question is what can we do with the resources we have?
Over the years I have been involved in many service development initiatives across different areas of health. It often includes sitting down with the people who would use the service and asking what they would need or like. This can generate some really useful ideas of what a service might provide that people would find helpful, and some unusual suggestions, including, I recall, the idea of having a hairdresser and the need for a fish tank.
I know that people often want services to be able to deliver research and find the biological cause of the illness, or to use a treatment that they have read about in a research paper. It can be difficult to understand the differences between a research organisation and an NHS funded team that is there to deliver what consensus has decided is best practice.
We need to be realistic about what services can provide and that if they had more resources, such as more specialist doctors and funding to see people at home, then they can provide a broader range of support. But limited funding means limited options. From my experience liaising with other ME/CFS services around the dysregulation model, I can see how motivated local professionals are to improve the experience for patients and move away from historic ideas and misconceptions, but more training and support is needed.
“…the work being done to increase understanding of the condition – through national initiatives – and the hope that individuals and groups representing ME/CFS can work more collaboratively with professional agencies, could improve the situation.”
10. Is recruitment and retention of specialist staff a problem and how might it be rectified in the NHS?
I was very lucky that staff stayed in our service for a long time, and we had people who wanted to work with us. However, across the NHS times are challenging as we can see in the news every day, with difficult working conditions and low pay. So, it can be even harder to get staff to choose to specialise in one condition, that might limit their future job opportunities in other areas.
The general lack of awareness and insight into ME/CFS across the health service also doesn’t help this, as historically the condition has been poorly regarded. Professionals generally want to work in an area where they feel their contributions will be valued and appreciated, so I personally feel that the historical lack of regard for ME/CFS Services from both other professionals and public perspectives hasn’t attracted staff into services. However, the work being done to increase understanding of the condition – through national initiatives – and the hope that individuals and groups representing ME/CFS can work more collaboratively with professional agencies, could improve the situation.
11. What will happen to the Yorkshire Fatigue Clinic now that you have retired?
I am pleased that the Yorkshire Fatigue Clinic is continuing under the management of City Health Care Partnership CIC. Although there will be some changes, as the service will now only be able to see NHS patients, some key members of the existing team are continuing and CHCP are keen to maintain the ethos and service delivery model that Yorkshire Fatigue Clinic has represented over the past 10 years and was highlighted as an example of good practice in the All-Party Parliamentary Group on ME Report – Rethinking ME.
12. What are your retirement plans?
Having worked with people who face constant limitations, I appreciate and value my health every day. So, I intend to walk on the beach daily with my dog and enjoy life while I can. I may write an updated version of ‘Fighting Fatigue’ to include the dysregulation model and broader physiological aspects of the illness. I am sure I will find things to fill the rest of my time….