Simplifying Cognitive Behavioural Therapy (CBT) for CFS/ME

I have had a lot of involvement in CFS/ME Facebook groups and forums, and there is a lot of differing views of what CBT is for CFS. This I think is due to a one size fits all approach of CBT being used by a lot of medical professions, so for instance using the same methods of CBT to help depression and CFS just isn’t the best way forward.  It really seems like what your told differs vastly on your postcode, and how much experience your doctor/ OT has with CFS or if their experience is in mental health.

In my opinion CBT for depression is all about pushing through your symptoms, getting out there, but to me it is tweaked for CFS and my hospital OT was explaining to me that CBT is often over complicated, and that to put it in a nutshell is about being self aware, and breaking activities into smaller steps.

So for instance you wake up feeling absolutely pants- for me this is feeling really heavy like my bones are made of lead, headachy, and a complete brain fog and if I have really overdone it a sore throat, so hardly a walk in the park. But sometime symptoms are a lot worse than other days, so you wake up feel horrific, and today you have  coffee schedules in with a friend or some other activity.

So when you wake up feeling awful, often your first reaction can be one of the following 2 reactions:

  1. Think ARGHHHH I can’t do anything every things useless, the old me used to be able to do this and that, I am going to have to cancel with my friend AGAIN, my friends are going to get fed up, so you cancel, pull the covers up and stay in bed all day, having a pity party.
  2. I will not let this stupid illness stop me, old me would never struggle to get up and go to coffee, stop being ridiculous, roll out of bed (sometimes I have literally rolled out of bed onto the floor and used my desk to pull myself up or having to get my boyfriend to help me out.  Go for coffee then out shopping after blowing my whole credit system out of the water, to prove this stupid illness wrong.

I have done both of the above time and time again – and I know it is different for those suffering from sever CFS, who are continually bed bound. But actually both of the above response can be so damaging.

With option 1, sleeping all day can disturb sleep patterns, make you seize up , as well as making you feel more isolated and depressed.

However with option 2, you have the obvious consequences post-exertional malaise aka ‘payback’,with the risk of a relapse. As well as hitting a wall on the day and probably not being particularly good company.

But the CBT approach, or at least what I view the CBT approach for CFS to be is to go with an option 3, yes there is a third option.

So you wake up feel awful, so instead of going straight into giving up or going all out, just take heed a bit. Instead what I do and my OT told me was a very CBT approach, is to accept that right now you feel awful just accept that.

Then depending on your ability try to get up go to the loo make a cuppa tea and sit on sofa and chill. If that is not possible and do you know what some times it is just not, give yourself an hour to stay in bed and reevaluate the situation.

After you are ok on the sofa, maybe try and have a shower, and do things in baby steps, step by step, and you might be able to build your way up to coffee with a friend but equally you might not- depending on your symptoms that day.

And whilst you might have had to cancelled, but instead of pulling the covers over your head all day because you felt rubbish first thing,which will set in stone that you feel like that all day; you have managed to move to the sofa or have a shower- which will have made you feel mentally better. Because instead of thinking you can’t do anything- appreciate the little things you can do – however small it is. Equally you haven’t gone all out just to spite yourself for having CFS.

I think that it is important not to think that by practicing CBT will solve all your problems, CFS needs to be managed using a holistic approach, equally you are not going to benefit from CBT at all unless you make it your own and practice it every day.

Some other useful posts:

  • Activity Management – Credit System (Link)
  • NHS Experience – CBT/ Act Management/GET (Link)
  • NHS Experience – Rest and relaxation (Link)
  • NHS Experience – Sleep and Stress Management (Link)

4 thoughts on “Simplifying Cognitive Behavioural Therapy (CBT) for CFS/ME

  1. I’ve recently completed a ME/CFS rehabilitation program which included CBT. I was taught pretty much exactly what you’ve said here. Sometimes I find that people are wanting a cure and dismiss therapies that aren’t a cure. Given our illnesses (I have ME/CFS, EDS and Narcolepsy), we can’t be expecting a cure. I’m not saying we give up looking for one, but we do need to acknowledge that it may not be cured any time soon and so we should be working to better manage our symptoms and appreciate the little steps that we take.

  2. This is a really helpful post. The controversy with CBT is that some practitioners, believing ME to be a psychosomatic illness, tout it as a cure rather than a management strategy and try to overturn what they see as false illness beliefs, pushing patients to ignore their symptoms and act healthy no matter how ill they are feeling. Obviously this approach can be very harmful to patients whose symptoms aren’t psychosomatic or caused by false illness beliefs. However, the approach to CBT that you describe can be a very helpful tool in learning to live with any chronic illness. Sadly, the horror stories patients hear about a small group of CBT practitioners that take a wrong approach to treating patients with ME dissuade many patients from taking advantage of a therapy that when properly delivered might really help them.

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