My therapy approach to CFS/ME and Fibromyalgia
I am interested in therapeutic approaches that get people better, and enable them to gain control of their health and lead a life that is as full and active as possible. I am interested in therapies that I see produce results in practice, and therapies that genuinely change lives.
So what does work?
In my work with individual patients and patient groups, I’ve always been keen to find out what approaches seem to work and what approaches don’t. I’ve discovered people don’t like to be pushed too hard or too fast, and they don’t like rigid and immovable programmes. People also appreciate being heard and being in control of their own programme. They also want to stop or pause at any time. As a consequence, I ensure my work is always underpinned by a collaborative approach where the person I’m working with is respected as the centre of their programme.
Flexibility and Stability
It’s no news to you that this is a fluctuating condition. Sometimes it’s a seesaw, sometimes a pretty rough journey with no anchor. Sometimes there are moments of stability and clarity, but the smallest thing can knock someone off balance again. Therapy therefore needs to work in harmony with the ebb and flow of the condition whilst at the same time try to create the stability that is needed to build up from. I believe that therapy needs to respond to changes in sleep, personal circumstances, and symptoms whilst ensuring a structured and stable routine where possible. It is often about holding people back when they feel better, and encouraging them to keep to their plans whenever they can.
What does a programme look like?
A programme involves an initial assessment, during which I take out my metaphorical magnifying glass and try to work out what factors are influencing this particular person’s symptoms. I’d want to look at what physical activity they are doing, how they are coping with it, and how it makes them feel. I will also explore sleep, activity patterns, and diet. I am also interested in finding out what makes them feel better and worse. I will ask about how they and the people around to them are coping, and what strategies they have already tried. I might ask about other personal circumstances and sources of stress or worry, such as finances or relationships. Whilst I may not deal with all of these issues directly, getting to know a person and understanding the full context of their life is critical. I’d also be keen to explore what is particularly important to the person I am talking to, and what they would like to achieve from our work together. I would also do a brief and gentle physical assessment to understand what specific physical problems they are having.
A plan is then drawn up, to map out their programme according to what they specifically want to achieve. For one person, they may need to sleep better or more, whilst another would benefit from sleeping less overall. One person may need some specific emotional support, whilst another is doing fine emotionally and needs to build up their strength. Some people are doing too much for their physical capacity and need to be held back a little in some areas, whilst others may need support in becoming gently more active. There will be focus on physical activity, as we know that at the right ‘dose’ this will make a difference, particularly when the activity is frequent and then built up in duration and intensity at the right time. Sessions then involve discussing and planning activity, and talking about specific issues that are important. It is much more about what is done in between sessions than about the session itself. Sporting activity and aerobic exercise is only planned for people who are capable of exercising aerobically and who want to do so.
A programme is usually up to 15 sessions, spread out over a year or so. Because of the practicalities around traveling, I often support people over the phone or through the internet. I also visit people at home, or see them face-to-face in London. Sessions tend to last an hour or so, but can be split into half-hour sessions if an hour is too much.
A Supportive Structure
I respect hugely what it takes to stick to a planned programme of activity. Good health doesn’t just come naturally. It will involve really examining activities, sleep, diet and it is likely to be a bit of a challenge at times to do things differently. Therefore, I endeavor to listen to the ups and downs, whilst at the same time providing support to keep on track and celebrating achievements as the programme progresses.
There is no crystal ball that will predict how much better any one person will get. However, underpinning my work is a sense that things can look different for everyone. Evidence and experience tells me clearly that people can and do get better. I have seen many people recover fully after participating in rehabilitation programmes, and many more lead full and active lives despite their symptoms. Whilst everyone’s circumstances are different, and everyone will have different outcomes, I believe that everyone has the ability to make changes that make a real and lasting difference to their health.
I see real results opening up for people every day, and this is why I love my work. It’s really amazing to get a postcard from an ex-patient on their dance holiday, or to be asked to sponsor someone I am working with for their 5K run. It’s wonderful to hear the excitement when someone tells me they’ve been out to dinner for the first time in 9 years, or that someone is not only back at work but has had a promotion. It’s great knowing that I had something to do with that change, and knowing that my work brings vitality and wellbeing back into people’s lives.