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

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It is notable that advising exercise during a relapse is contrary to what Peter White said in his presentation
on 15 th April 1992 at the Pfizer/Invicta symposium held at Belfast Castle (Eradicating “Myalgic
Encephalomyelitis), where in his guidelines for a gradual exercise programme he said: “Do not exercise if
clinically active infection is present”.
(He also said at that same meeting, however, that (i) “there has never been any evidence that the condition is
associated with inflammation of the central nervous system” (ii) “the only findings of note have been that fatigue is
associated with…an exaggerated perception by patients of the effort they are exerting”; that a graded exercise and
activity programme “might meet with some resistance in view of the widely believed myth that avoidance of exertion
is vital” and that “exercise should be aerobic”).
The PACE Trial has no serial checks on the participants’ immune parameters even though, as mentioned,
Professor White has published a paper on this aspect (ie: Immunological changes after both exercise and
activity in chronic fatigue syndrome: a pilot study. White PD, KE Nye, AJ Pinching et al. JCFS 2004:12
(2):51‐66). In that article, White et al stated:
“We designed this pilot study to explore whether the illness was associated with alterations in
immunological markers following exercise. Immunological abnormalities are commonly observed in
CFS…Concentrations of plasma transforming growth factor‐beta (TGF‐β) (anti‐inflammatory) and tumour necrosis
factor‐alpha (TNF‐α) (pro‐inflammatory) have both been shown to be raised….Abnormal regulation of cytokines may
both reflect and cause altered function across a broad range of cell types…..Altered cytokine levels, whatever their
origin, could modify muscle and or neuronal function.
“Concentrations of TGF‐β1 were significantly elevated in CFS patients at all times before and after exercise
testing.
“We found that exercise induced a sustained elevation in the concentration of TNF‐α which was still
present three days later, and this only occurred in the CFS patients.
“TGF‐β was grossly elevated when compared to controls before exercise (and) showed an increase in response
to the exercise entailed in getting to the study centre.
“These data replicate three out of four previous studies finding elevated TGF‐β in subjects with CFS.
“The pro‐inflammatory cytokine TNF‐α is known to be a cause of acute sickness behaviour, characterised
by reduced activity related to ‘weakness, malaise, listlessness and inability to concentrate’, symptoms also
notable in CFS.
“These preliminary data suggest that ‘ordinary’ activity (ie. that involved in getting up and travelling some
distance) may induce anti‐inflammatory cytokine release (TGFβ), whereas more intense exercise may induce
pro‐inflammatory cytokine release (TNF‐α) in patients with CFS”.
This important information seems to have been withheld from participants and therapists alike (the
Therapists’ Manual on GET is dismissive of studies showing immune dysfunction in ME/CFS).
In the light of this knowledge, it is notable that there seems to be a disregard of safety for GET
participants, even though the Chief Investigator (Peter White) is aware that three days after exercise,
TNFα remains elevated and that this probably accounts for the “sickness behaviour” and “weakness,
malaise, listlessness and inability to concentrate”.