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

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353<br />

Phase 3 (page 54 of the Manual) is titled “End<strong>in</strong>g of treatment, prepar<strong>in</strong>g and plann<strong>in</strong>g for future self‐<br />

management”. Therapists are told that the purpose of Phase 3 is three‐fold: “1. To aim towards self‐management<br />

and <strong>in</strong>dependence with exercise programme; 2. To re‐exam<strong>in</strong>e the Borg‐ HR (heart rate) relationship; 3. To exam<strong>in</strong>e<br />

how to ma<strong>in</strong>ta<strong>in</strong> exercise after discharge”.<br />

The therapist is <strong>in</strong>formed that “Exercise target heart rates are calculated for each <strong>in</strong>dividual” and two methods<br />

are described; therapists are told that “The ma<strong>in</strong> difference between method 1 and method 2 lies <strong>in</strong> the rest<strong>in</strong>g heart<br />

rate (RHR)” and that method 1 uses “a calculation known to therapists / gymnasiums, and aim<strong>in</strong>g for a normal<br />

heart rate target”, whilst method 2 is “as used <strong>in</strong> previous CFS/<strong>ME</strong> research”. Therapists are <strong>in</strong>formed that<br />

method 1 does not take the RHR <strong>in</strong>to account and is simpler to use and that “It is therefore advisable to use<br />

method 1 to start with”.<br />

Therapists are told that: “as a lower <strong>in</strong>tensity workout for a longer duration is both more comfortable and is<br />

recommended for improv<strong>in</strong>g overall fitness, 60 – 75% of Max HR can be used as a guide. As this figure is used for<br />

normal, healthy people and is not adjusted for CFS/<strong>ME</strong>, the objective is to work up to this figure gradually as the<br />

participant recovers” (this assumes that the participant will recover with the <strong>in</strong>tervention, but until the<br />

outcome of the trial is known, this is speculation promoted as fact).<br />

It is potentially dangerous to assume that a target that is appropriate for healthy people is also appropriate<br />

for people with <strong>ME</strong>/CFS (see the section on cardiovascular abnormalities <strong>in</strong> Section 2 above). People with<br />

<strong>ME</strong>/CFS often have a much faster heart rate, even at rest: it has been demonstrated that they have an<br />

<strong>in</strong>creased rest<strong>in</strong>g energy expenditure (REE).<br />

For example:<br />

(1) “Chronic Fatigue Syndrome is a cl<strong>in</strong>ical disorder that is <strong>in</strong>creas<strong>in</strong>gly recognized <strong>in</strong> most countries as a major health<br />

hazard. Its classical cl<strong>in</strong>ical feature is fatigue associated with sleep abnormalities, difficulties concentrat<strong>in</strong>g, memory<br />

impairment and myalgia”<br />

“To this may be added a constellation of other symptoms, <strong>in</strong>clud<strong>in</strong>g atypical chest pa<strong>in</strong>, gastro<strong>in</strong>test<strong>in</strong>al<br />

motility disorders, unexpla<strong>in</strong>ed attacks of sweat<strong>in</strong>g and light headedness. The fatigue is cl<strong>in</strong>ically identical<br />

to that found <strong>in</strong> multiple sclerosis, Park<strong>in</strong>son’s disease, Alzheimer’s disease, post‐polio syndrome and the<br />

fatigue that may follow posterior head <strong>in</strong>jury”<br />

“Abnormalities <strong>in</strong> muscle, neuromuscular transmission, heart and rest<strong>in</strong>g energy expenditure have been<br />

found <strong>in</strong> patients with (<strong>ME</strong>)CFS”<br />

“These abnormalities may well be secondary to a primary abnormality of central chol<strong>in</strong>ergic transmission”<br />

“We tested this hypothesis us<strong>in</strong>g a neuroendocr<strong>in</strong>e challenge paradigm (and) have shown that the pathogenesis<br />

<strong>in</strong>volves up‐regulation of post‐synaptic chol<strong>in</strong>ergic receptors”. (A Chaudhuri T D<strong>in</strong>an et al. Chronic Fatigue<br />

Syndrome: A Disorder of Central Chol<strong>in</strong>ergic Transmission. JCFS 1997:3(1):3‐16).<br />

(2) “When <strong>in</strong>dividual rest<strong>in</strong>g energy expenditure (REE) was predicted on the basis of total body potassium values,<br />

45.5% of the (<strong>ME</strong>)CFS patients tested had rest<strong>in</strong>g energy expenditure above the upper limit of normal, suggest<strong>in</strong>g that<br />

there is upregulation of the sodium‐potassium pump <strong>in</strong> (<strong>ME</strong>)CFS.<br />

“There was no evidence that the results were due to lack of activity (which would have affected total body water<br />

estimates)” (Watson WS, Chaudhuri A, Behan PO et al. Increased rest<strong>in</strong>g energy expenditure <strong>in</strong> the chronic<br />

fatigue syndrome. JCFS 1998:4:4:3‐14).

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