Graded Exercise Therapy and Cognitive Behaviour Therapy as treatments for CFS and ME

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[UPDATED JULY 2023]

Clarification - CFS versus ME

  • Chronic fatigue syndrome [‘CFS’] is characterised by poor energy delivery mechanisms.
  • Myalgic-encephalitis [‘ME’] is characterised by poor energy delivery mechanisms AND inflammation.

Poor energy delivery is caused by poor diet and gut function, poor breathing, poor sleep, mitochondrial failure, and poor adrenal and thyroid function.
Inflammation occurs when the immune system is activated. The immune system is activated in allergy, chronic infection and auto-immunity.
In both CFS and ME there may also be an emotional hole in the energy bucket.
Please see Overview of CFS/ME protocol for more detail on these various components.

Summary

The central cause and lesion in CFS and ME is mitochondrial failure - see CFS - The Central Cause: Mitochondrial Failure.

CFS and ME are physical disorders.

This is why psychological interventions do not effect a cure

The new NICE Guideline, after reviewing hundreds of medical papers, have finally endorsed this view, especially with regard to Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) 

The committee wanted to highlight that cognitive behavioural therapy (CBT) has sometimes been assumed to be a cure for ME/CFS. However, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness. [NICE, NG206,Box 5]

And also that: 

CBT for people with ME/CFS: (1)aims to improve their quality of life, including functioning, and reduce the distress associated with having a chronic illness (2) does not assume people have 'abnormal' illness beliefs and behaviours as an underlying cause of their ME/CFS, but recognises that thoughts, feelings, behaviours and physiology interact with each other. [NICE NG206, 1.12.32]

The Guideline went further on Graded Exercise Therapy (GET) and stated that: 

Do not offer people with ME/CFS:....any programme ...that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy [NICE NG206, 1.11.14]

Reference - NICE Guideline NG206 - "Recommendations"

GET can cause serious harm to CFS and ME sufferers

Evidence of harm caused by GET was submitted as part of the NICE [NG206] review of ME/CFS guidance – 

Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health

[So, in one of the 8 studies reviewed an astonishing 82% of patients reported a worsening of health following GET.] 

...graded exercise therapy brings about large negative responses in patients (54%–74%)

But well delivered psychological interventions can help...

If there are "Emotional Hole" issues, please do not ignore them as dealing with them can help to make life more bearable. Please see:

Also, consider counselling or other psychotherapy, where you feel this would be helpful. See:

Look for a practitioner who REALLY understands CFS and ME - you will find some great (especially Experienced Patient) practitioners here - Natural Health Worldwide

BUT eventually, as you recover, you will be increasing activity levels

I like to get my patients better! This is why I do this.

So, inevitably, at some point, levels of physical and cognitive activity must be increased - this is the definition of recovery.

Once more, remember that CBT and GET will NOT get you to this stage, BUT there will come a point, after putting in place my physiological interventions (Overview of CFS/ME protocol) when you need to know how to manage your recovery, and increase levels of activity, without causing harm, or inducing a relapse.

How does one manage recovery?

The short answer is VERY CAREFULLY!

The longer answer is -

  • If I have a patient, or even a physician, who tells me that they got better just with a graded exercise programme, then my reaction is that they could not have had CFS or ME in the first place. Graded exercise on its own invariably makes CFS and ME worse. Don't do it.
  • However, there comes a time in everyone's recovery when it is appropriate to increase one's daily activity.
  • The first step is to reduce the amount of physical and cognitive work each day until all days are about the same i.e. first get out of the 'boom and bust' (doing too much one day, then paying for it for 2-3 days, then doing too much, etc.) cycle.
  • Finally increase the level of activity very slowly each day on the proviso that you continue to feel well. The key here is to vary activity. Different parts of the brain and body have to be exercised. One of the most active areas of the cortex is that which is concerned with vision. Processing information from screen work, for example, requires much more activity than, say, listening to music. Screen work needs to be rationed. If the brain is working, it will consume 20% of body oxygen supplies (and it only weighs 2% of total body weight!). Similarly physical exercise should be done using as many different muscle groups and initially should be limited to simple stretching exercises without weights.
  • It may well take several months before significant changes are seen. There are inevitably 'wobbles' when you get a virus, or when life throws another crisis at you (life is all about going from one crisis to the next!). To adjust the level of activity to what is appropriate you have to judge things by the next day. If you are 'hungover' (ie wake up 'fatigued') the next day then you have overdone it. There is a very fine 'window' between too much and too little.
  • You will have to spend some time each day, planning the day. This is tedious when the energy could be better spent doing something else. But if activities are not carefully controlled by the clock you will overdo things and have to start again.

See also

Related articles

External Links

References

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