MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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Moreover, recent research has compellingly demonstrated that “activity‐related symptom worsening is not
caused by worsened sleep” (Togo F, Natelson BH, Cook DB et al. Med Sci Sports Exerc 2010:42(1):16‐22).
In the PACE Trial, the biomedical evidence is denied and disregarded; there is emphasis on “Motivating
yourself” and participants are given a list of “ideas that may help you to keep to your programme” (more “positive
reinforcement”); these ideas include:
• “Keep a written plan at all times
• “Write down details of your exercise or physical activity achievements
• “Keep lists of plans and tick them off once you have done them
• “Keep a diary outlining all the things you learn from your GET
• “Tell friends and family about your plans and progress
• “Reward yourself when you have stuck to your plans, e.g. putting some money aside every time you
undertake your plan (many people with ME/CFS are in receipt of State benefits and are barely able to
survive financially, so this “idea” illustrates how out of touch with reality the authors are)
• “Frequently go over your old plans and exercise sheets and see the progress you have made (more “positive
reinforcement”)
• “Become familiar with the GET theory
• “Draw a graph of the progress you are making so that you can see your exercise time going up (yet more
“positive reinforcement”)
• “Do your activity or exercise with other people
• “Become involved in a club or gym…so that you can become committed to your plans”.
The whole flavour of this section appears infantile yet coercive.
Next comes a section on “Dealing with setbacks” in which GET participants are told: “Setbacks are a normal part
of getting better”. This is an irresponsible assertion by the authors because not only does it imply that
recovery is expected by reinforcing the message that participants will get better (more “positive
reinforcement”) when there is no evidence of recovery from ME/CFS, it also untrue because “setbacks” (more
accurately called a relapse) are not a “normal part of getting better”.
The authors even augment the misinformation by claiming: “Therapy usually follows an ‘up and down’ pattern,
but with an overall upwards trend” (“positive reinforcement” again, which ignores the evidence that at least 25%
of people with ME/CFS do not improve with any “therapy”).
GET participants are told (in bold text in the Manual): “The good news: it is normal for setbacks to become
less severe, more manageable and last for less time as you get better…the overall trend is usually upwards”.
This seems to be intended to encourage compliance and is another unqualified assumption stated as fact;
moreover it might instil despair into those participants who may not be improving (if, that is, any
participants selected for the PACE Trial fall into such a category, since the Investigators anticipated having
people on the trial who were walking for 30 minutes each day anyway).
The message about “setbacks” is clear: during a relapse, GET participants must “maintain as much physical
activity as you can”. The authors do, however, concede: “if you are not feeling well due to a CFS/ME setback,
then the advice is different” but they then negate what they themselves have just advised:
“During a CFS/ME setback, it is understandable that you might wish to rest and reduce the amount of activity you do,
because you don’t feel well and activity feels much harder than usual. This may even be a time in which you become
concerned that the increase in symptoms may be causing you damage. The evidence we have is in fact the opposite:
there is no evidence to suggest that an increase in symptoms is causing you harm. It is certainly
uncomfortable and unpleasant, but not harmful” (this is in bold text in the Manual).