Tuesday, 17 December 2013

The Dilemmas of Exercise and M.E.

"Exercise" is almost a dirty word for ME patients.  We hear it and immediately become defensive.  There is good reason for this reaction.  Frequently our ME health problems are ascribed to "de-conditioning" and we are offered exercise to help us to recover.

The basic logic behind exercising for better health, is appealing of course.

Many folk in today's modern world, do not take enough exercise and this adversely affects their health. These individuals can end up in doctor's surgeries looking for magic pills to give them more energy.

Indeed I can understand why a doctor's first reaction to a "tired all the time" patient, might be to promote better lifestyle choices, including exercise.

However the treatment for myalgic encephalomyelitis (ME) also appears to be based on this same notion of a deconditioned lifestyle.

The National Institute of Clinical Excellence guidelines suggest that UK National Health Service doctors offer; Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as basic treatments.  Patients are also often offered anti-depressants as a matter of course.

Yet for patients that have the classic ME symptom of Post Exertional Malaise (PEM), exercise is a dangerous thing.  So a doctor who casually recommends all their fatigued patients to "exercise more", risks inadvertently harming ME patients.

The problem for doctors, we are told, is that there is no clearly defined test for ME.  This being so, I cannot understand why doctors aren't advised to take a precautionary approach with ALL their chronically fatigued patients!  Surely there should be some checks and measures in place prior to advising a patient to exercise?

In my own case, the first doctor to take my illness seriously was under the impression that I should take  three short walks a day in order to help my recovery.  I don't blame her for this advice, because it was given with the best of intentions.  The trouble, is with the guidelines our doctors are given!

There is now increasing evidence that exercise can be harmful.  The link below is a recent article highlighting that the advice given by doctors in USA to ME patients is potentially harmful.


(Note: Doctors don't diagnose ME any more.  We are now given the name Chronic Fatigue Syndrome (CFS) instead, as if somehow we are just a little tired!)

The article linked above, is backed up by the results of the study linked below.  This study shows a means of separating ME patients from deconditioned controls, using a two day cardio-pulmonary exercise test (CPET).

Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome

This is an exciting development, because now there is a clear means to demonstrate that ME patients are not faking illness.  (Yes, it seems some medical professionals considered this a real worry!)

The CPET test, performed over two days, shows that ME patients cannot repeat their scores on the second day, whereas deconditioned controls can.  A single day's test shows no difference between the two groups.

Sadly the two day test is not being taken as seriously as it could be, and guidelines for the treatment of ME have not yet been altered to remove the promotion of exercise as a treatment.  Nor has the 2 day CPET test been adopted as a marker for ME.

I admit to being cautious about an exercise test becoming a marker for ME, because there might be potential for even this level of medically controlled exercise to cause long term harm to a sufferer of ME.  However, considering that many ME  patients do not have their illness validated by their doctors, I think that the 2 day CPET test is a useful starting place for a "Take ME Seriously" case.

In the mean time, I think doctors, world over, should be made aware of the potential harms of exercise to ME patients.

In truth, I think GET should not be suggested for fatigue until ME has been ruled out.  And further, "exercise" or at very least "exertion" should remain a dirty word for ME patients!!

PS  Edited to add a link to Tom Kindlon's excellent report: 
Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Thank  you Tom for the link in the comment below. Adding it here makes it an active link. ;)


  1. Thanks for this, Sally.

    For any of your readers who are interested, I wrote a paper on this issue:
    Tom Kindlon, Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111. Free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

    1. Thank you Tom - I have added it as a PS so the link is now active. :)

  2. Good article. I will take VERY slow steps to seeing if I can exercise.

    1. I am glad you found this useful. Learning to adapt to a decreased lifestyle is difficult, but in my experience trying to push on ahead and "not let it beat me" just makes things worse.