Our position at the MEA on activity/energy management is very clear:
In our current state of knowledge we recommend pacing - whereby people live within their limiatations when it comes to physical and mental activities - because this is the form of activity/energy management that the majority of people in our 'patient evidence' surveys report as being safe and helpful
In practice, pacing means finding an acceptable baseline of activity, carrying out physical and mental tasks according to stage, severity and variability of the illness, and factoring in periods of rest and relaxation in between
And according to progress, making gradual and flexible increases (or decreases) in both physical and mental activity
During the research section of the meeting Dr Bansal refered to two beneficial effects of exercise - endorphin release and pain and a substance involved in neuronal repair called brain derived neurotrophic factor/BDNF - and did nothing more than say that these are two important aspects of muscle function that need to be considered when we look at research into activity/energy management
BDNF:
http://www.alomone.com/p/human_bdnf/b-250/258?gclid=CLDSzZbL5swCFcE_GwodxpEDrA
There was no suggestion that the way forward is to simply encourage people with ME/CFS to increase the amount of exercise they do
MEA report on CBT, GET and Pacing:
http://www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/
MEA recommendations re GET and Pacing:
Graded Exercise Therapy (GET)
We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.
A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms becoming worse or much worse and leading to relapse. And it is worth noting that despite current NICE recommendations, a significant number of severe to very severe patients were recommended GET by practitioners and/or had taken part in GET courses.
The other major factor contributing to worsening symptoms was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’.
We recognise that it is impossible for all treatments for a disease to be free from side-effects, but if GET was a licensed medication, we believe the number of people reporting significant adverse effects would lead to a review of its use by regulatory authorities.
As a physical exercise-based therapy, GET may be of benefit to a sub-group who come under the ME/CFS umbrella and are able to tolerate regular and progressive increases in some form of aerobic activity, irrespective of their symptoms. However, identifying a patient who could come within that sub-group is problematic and not possible at present.
Some patients indicated that they had been on a course which had a gentle approach of graded activity rather than a more robust and structured approach of graded physical exercise. There were some reports that patients were told they should not exercise when they felt too unwell to do so. These led, for some, to an improvement in symptoms or to symptoms remaining unaffected.
However, we conclude that GET cannot be regarded as a safe and effective form of treatment for the majority of people with ME/CFS. The fact that many people, including those who consider themselves severely affected, are being referred to specialist services for an intervention that makes them either worse or much worse is clearly unacceptable and in many cases dangerous.
GET should therefore be withdrawn by NICE and from NHS specialist services as a recommended treatment with immediate effect for everyone who has a diagnosis of ME/CFS. This advice should remain until there are reliable methods for determining which people who come under the ME/CFS umbrella are likely to find that GET is a safe and effective form of management.
Pacing
Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.
For some, improvement may be a slow process so, whilst they may be somewhat better by the end of a course, the improvement is not enough to take them into a better category of severity for some time, perhaps not until they have self-managed their illness for a few years.
The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status. Learning coping strategies can help make courses more appropriate to needs even if they do not lead to immediate or even longer term improvement in symptoms. Importantly, it can prevent symptoms from becoming worse.
Pacing can be just as applicable to someone who is severely affected, as to someone who is mildly or moderately affected, although additional measures need to be taken to ensure that a person who is severely affected has equal access to services.
As with CBT, there must be better training for practitioners who are to deliver such management courses. Proposed increases in activity, both mental and physical, must be gradual, flexible and individually tailored to a patient’s ability and circumstance and not progressively increased regardless of how the patient is responding and therapists must be taught to recognise that.
All patients should have access to suitable courses, follow-up courses and/or consultations as and when required.
