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

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Participants were to be given a handout sheet on which to record their “Fatigue Level” (again, no mention is
made of other symptoms). The blank record sheet is photocopied in a full page of the Manual, which seems
nothing more than a space‐filler.
Then comes a section entitled “Participant Handout: Bust and Boom Peaks and Troughs”, which states:
“People often describe a see‐saw effect to their symptoms.
“This can be on a daily, weekly and monthly basis” (The configuration of the page is noticeably extended and
seems designed to fill the space).
“The process is,
� When feeling better do more in an attempt to catch up
� When feeling worse, symptoms increase (surely this is the wrong order – symptoms increase
and the patient feels worse; moreover these are isomorphic)
� Do less, ‘rest’
� Feel better and so on.
“This can be described as an over activity/under activity cycle”.
“The diagram below shows this” (the diagram is missing, suggesting poor editorial control).
Page 13 of the participants’ Manual states: “Participant Handout: General Principles of Adapted (sic) Pacing”
“Summary:
• Listen to your body
• Alternating rest and activity
• Doing one thing at a time
• Choosing low energy activities
• Using energy saving devices
• The 70% rule (described earlier in the Manual as “never going beyond 70% of a sufferer’s perceived
energy limit”)
• Achieving balance
There is virtually no substantive content, and many pages are mostly empty.
Page 14 of the Manual contains only 21 words, all in large font:
“ACTIVITY BASELINE. A comfortable level of activity that can be managed on a regular basis, without experiencing
an increase in symptoms”.
Page 15 states: “Participant Handout. DATE: NAME: Baseline Sheet: A baseline of activity is a comfortable level of
activity that you can manage on a regular basis, without experiencing an increase in symptoms. What would be your
own baseline at present?” (most people with ME/CFS are unable to establish a baseline because of the
fluctuating nature of the symptoms, and this is a defining characteristic of the disease).
Page 16 states: “Participant Handout List of Activities. Date…………….Name……….” and consists of a blank
record in two columns, one side headed “Must do activities” and the other side headed “Would like to do
activities”.
How does this constitute a “therapy”?