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As with any long-term illness, it can be very difficult to maintain a positive outlook all of the time.

Feelings associated with ME/CFS such as frustration, anger, irritability, disappointment, anxiety and demoralisation use energy, prevent relaxation and do not always help people manage their health condition in the best way possible.

Having a condition such as ME/CFS changes what you can do but not necessarily the expectations you have of yourself.  Therefore it is important to also re-assess expectations of yourself in order to cope with your condition as best as you can.

Cognitive Behavioural Therapy Model


This model is based on the understanding that it is helpful to look at problems as interactions between thoughts, emotions, behaviour and physiology, and the environment in which a person operates.  Therefore, what we do influences our thoughts and feelings and vice versa.

What are negative thoughts?

 
Negative thoughts are often called ‘automatic’.  This is because they may appear suddenly, without conscious effort.  These types of thoughts are common in prolonged illness.
They are:  easy to believe, often untrue, make things seem worse, predict the future negatively, stop you doing things and are not helpful or useful.  They can cause/maintain depression and be detrimental to recovery.
In order to challenge negative thinking we can examine the evidence for and against our thoughts.  We can then substitute negative thinking with more realistic thinking.

 

Negative Thoughts
More realistic thoughts
I am useless
Although I cannot do as much as I could physically, I am not useless because I listened to a friend / cooked for my family etc.
I will never get better
I am unwell at the moment but I know people do improve.  It takes time.
No-one believes I am ill
I cannot read others’ minds.  It is up to me to let people know if I am feeling particularly bad.  Maybe not everyone realises that I am ill but the people who count know the truth.
I am letting people down
I have supported my family when they were ill and now I deserve some help/support if I am unwell. 
I have had to cancel things but this is in order to look after myself.  Most people are understanding and do not feel that I let them down. 
I have a good reason for not being able to do as much as I’d like too.  If I could help then I would, but I cannot at the moment.

 

What is cognitive behavioural therapy (CBT)?

CBT aims to teach people how to keep things in perspective, identify any negative thought patterns, not to ‘catastrophise’ manageable problems, and put solutions into place to help people adjust to their new circumstances and better manage their illness.
It may also have a positive effect on someone’s physical symptoms by reducing stress and helping people cope better.
CBT is not a ‘cure’, but practitioners argue that it can reduce symptoms and can assist people to return to their normal activities, thereby improving well-being and quality of life.

How can cognitive behavioural therapy apply to ME/CFS?

It may involve exploring the following:

  • Dealing with associated anxiety and depression
  • Adjusting to diagnosis and acceptance of current limitations
  • Addressing any over vigilance to symptoms
  • Building on existing assertion/communication skills to set appropriate limits on activity
  • Problem solving and goal setting
  • Recognising achievements
  • Looking at permission to rest/be kind to self
  • Challenging thoughts and expectations that may affect symptom improvement
  • Adjusting response to frustration/certain situations
  • Identifying aspects of personality not conducive to managing condition (i.e. can’t relax, have to do everything for everyone)

Common thinking distortions

We are all prone at times to ‘distorted thinking’, but when we are either under excess stress or are depressed, these distortions can become more exaggerated.  Thinking in such ways may maintain or perpetuate a certain outlook and can stop people moving forward.

  • All Or Nothing Thinking
You think in absolutes, as either black or white, good or bad, with no middle ground.  You tend to judge people or events using general labels, for example “He almost walked into me, he is an idiot”, “I will never get a handle on things as I just had a bad day”, “If can’t go out for long there is no point in going out at all.”  You may condemn yourself on the basis of a single event.

  • Catastrophising
You tend to magnify and exaggerate the importance of events and how awful or unpleasant they will be, overestimating the chances of disaster - whatever can go wrong will go wrong.  “My muscles ache and I feel more tired today, I must be doing some permanent damage to myself”  “My whole day will be ruined now”.

  • Personalising
You take responsibility and blame for anything unpleasant, even if it has little or nothing to do with you.  “It is my fault.”  “My doctor was irritable because I went to see him for two weeks running.”

  • Negative Focus
You focus on the negative, ignoring or misinterpreting positive aspects of a situation.  You focus on your weaknesses and forget your strengths, looking on the dark side.  “I have had a terrible week and I have achieved nothing.” “There has been absolutely no improvement in my illness.”

  • Jumping To Conclusions / Mind-reading
You make negative interpretations even though there are no definite facts.  You start predicting the future and take on the mantle of ‘mind reader’ e.g. “They think that just because I don’t look ill, that I am not ill.” “They think I am lazy because I am not at work.”  “There’s no point in doing that as I won’t be able to cope.”  “I will fail if I try.”

  • Living By Fixed Rules
You tend to have fixed rules and unrealistic expectations, regularly using the words ‘should’, ‘ought’, ‘must’ and ‘can’t’.  This leads to unnecessary guilt and disappointment.  E.g. “If I can’t do the housework I am a useless wife.”  “I must do it this way because I always have done it this way.”, “I should be able to cope better by now.”  “I must not stop until I am finished.”

How to use some CBT techniques yourself:

1) Be aware of unhelpful thinking
This may include thoughts related to ‘must’, ‘just’, ‘should’ and ‘ought’.  E.g. ‘I must not stop until I have finished this task’,  ‘I should feel better than this,’  ‘I must do this or people will think I am lazy.’  ‘I ought to be doing something instead of resting’.
Try to be aware of these words and use them less in your thoughts.

2) Challenge negative thoughts
  • The first step is being able to identify your unhelpful/negative thoughts. This can be difficult because they are automatic but becomes easier with practice.
  • Challenge your negative thoughts using the thought diary below.
  • Look at what evidence there is to support your thoughts?

What evidence is there against them?
  • What alternative/realistic views are there?
  • How would someone else view this situation?
  • How would I have viewed this situation in the past?
  • What would be a more helpful/realistic thought?
  • What is the worst that can happen?
  • Have I been in this type of position before? How did I deal with it then?
  • Am I jumping to conclusions that are not completely justified by the evidence?

3) Rehearsing a situation in your head
If you are able to identify a situation that is causing you worry or increasing your negative thoughts (e.g. having a friend visit, going to the doctors) then this may be useful:
  • Think of the situation in your mind and play the whole scene through. It often helps to rehearse a situation in your mind. This may reduce your anxiety about it and enable you to tackle any negative thoughts you have about this situation.

Thought Diary


It can be useful to keep a diary of your thoughts to monitor your thinking patterns and to challenge your unhelpful thoughts. 

This is a worked example of a Thought Diary. A blank version is on the next page for you to use