Chronic Fatigue Syndrome/ME Frequently Asked Questions

How is CFS/ME diagnosed?

There are no specific tests to diagnose CFS/ME but there are clear guidelines to help with making a diagnosis. These guidelines include:

  • Blood tests – these will be done by your GP and are used to screen out other health conditions that can cause fatigue and related symptoms, for example, anaemia, or an underactive thyroid. A diagnosis of CFS/ME can be considered if the blood test results don’t suggest other causes for the fatigue.
  • Medical history – this will involve asking you about when your symptoms started and whether there were any specific triggers leading up to the onset of your illness such as an infection, stress, surgery, a trauma or perhaps a gradual decline in your health.
  • Symptoms – these are descriptions of how you are feeling, and the clinician will also ask how the symptoms impact on your daily activities, work and social life, and sleep. CFS/ME is characterised by a wide range of symptoms, not just fatigue, and in order to make a diagnosis of CFS/ME a certain number of these symptoms also need to be present.

It is important to note that CFS/ME is not a condition that is diagnosed just by a ‘process of elimination’ when another medical reason for the fatigue/illness cannot be identified or explained. CFS/ME is a very specific syndrome with a clearly defined range of symptoms and associated problems. There are many instances where people may be unwell with an unexplained cause but where CFS/ME can be ruled out by a CFS/ME specialist.

Who might I see in the Bristol CFS/ME Service?

Having CFS/ME can affect many areas of everyday life such as work, activities, sleep and relationships. Managing CFS/ME effectively needs a wide range of skills. This is why we have different types of therapists in our team, including physiotherapists, occupational therapists and psychologists. Each clinician can work in partnership with people living with CFS/ME to improve their self-management skills, reduce the suffering caused by CFS/ME, increase wellbeing and improve quality of life.  Although the clinicians are specialists in each of their chosen areas, they have a high level of knowledge of the other specialties and there is significant overlap in the areas covered by each clinician.

Having CFS/ME means that people aren’t able to do as much as before. We offer support to people in managing activities to get the best quality of life possible despite having CFS/ME. This might involve looking at ways to level out activities, before gradually increasing them. We can also offer specialist advice regarding issues relating to work (both paid and voluntary work) and study. CFS/ME affects fitness, stamina and mobility, and may affect balance and co-ordination. We consider the person as a whole, and we can offer individually tailored exercise and physical activity programs to maintain general health and mobility, and these programs can lead to improved mobility for some people living with CFS/ME. We can also support people in making changes to their sleep patterns, which can take some time to improve. 

Living with CFS/ME can understandably lead to increased stress levels, feelings of helplessness or a sense of loss of control, as well as lower mood. Often people notice strong emotions such as fear, anger, frustration, and guilt. It is also common for people who have been feeling unwell for a long time to develop set ways of coping that are unhelpful, such as self-criticism. We know that CFS/ME isn’t ‘all in the mind’, however unhelpful patterns of thinking can hinder making progress in managing CFS/ME. The routines and habits that we develop throughout our lives can be difficult for anyone to change but we can help with this. We offer support in developing self-management strategies for CFS/ME, and use a range of methods and techniques including a specialist form of Cognitive Behavioural Therapy (CBT), relaxation training and an approach known as Mindfulness which we have adapted for people living with CFS/ME.

Do special diets for people with CFS/ME help?

The British Dietetic Association produce a useful guide to dietary issues and CFS/ME that you can download from here:
www.bda.uk.com/foodfacts/cfs-meanddiet.pdf This guide is based on the best available evidence relating to CFS/ME and diet.

A significant number of people with CFS/ME also have Irritable Bowel Syndrome (IBS), which can be helped by specific diets. You can find out more information about diet and IBS from the British Dietetic Association website:
www.bda.uk.com/foodfacts/IBSfoodfacts.pdf