Question

Although I have a firm diagnosis of ME, I am thinking about asking my GP to refer me to the local ME/CFS clinic for some further help with management because my GP is very honest and says she “doesn’t know very much about how to manage people with ME”.

Having looked at the website for the local ME/CFS service, I’m a bit concerned because it seems to place quite a lot of emphasis on social and psychological support and also refers to a graded activity programme.

So what is graded activity? And is it the same as graded exercise therapy?

Answer

You are right to raise your concerns because graded activity is not a term that is used to describe the recommendations relating to activity and energy management in the new NICE guideline on ME/CFS.

As you will be aware, the NICE guideline committee (I was a member) reviewed all the clinical trial evidence relating to graded exercise therapy (GET) and concluded that the evidence of benefit was very low. There was also consistent and robust patient evidence of people being harmed by graded exercise therapy. So we recommended that GET should no longer be used as a treatment for ME/CFS.

While most doctors and physiotherapists working in the specialist referral services have agreed to follow the new recommendation regarding GET, I think there are some who are not yet fully on board and have therefore replaced GET with graded activity therapy.

It therefore appears that in some cases graded activity is very much in line with NICE recommendations on activity management. However, in other cases graded activity may be much nearer to GET – where people are encouraged to progressively increase their mental and physical activity levels on the basis that ME/CFS is being maintained by deconditioning rather than any disease process.

So graded activity is not a term that I approve of and, where it is being used, I suggest that people ask for a detailed explanation of what a graded activity programme will involve before taking part.

More Information:

• Please let us know if you have taken part in a graded activity programme at an ME/CFS referral service.
• The MEA has a new information booklet covering pacing and all aspects of activity and energy management: Pacing: Activity and Energy Management
• See the NICE Guidelines on ME/CFS