(Warning – this is another rant. Although a rant about a different subject this time.)
The ME/CFS Community owes a great debt to Tom Kindlon, for his campaigning activity, and his work in making information about ME/CFS known. Recently, he posted on Twitter a link to the slides used for training therapists in the FINE trial – Fatigue
Intervention by Nurses Evaluation (the outcome of this trial can be found here). My initial reaction was shocked spluttering, followed by a few initial comments; but I feel the urge to look at this in more detail, as it is an exampe of the misunderstandings about ME even within the medical profession.
The slides are in the form of a PDF file, 49 pages, 6 slides to a page. My comments reference the page numbers, with slide ‘numbers’ within each page; although not identified, these are in the order:
It is worth pointing out at the start that (a) my comments are based purely on the content of the slides, without knowing what other information was given or comment made when they were presented; (b) the slides are not a formal paper, so sadly references are not given (except in a few cases) and some points therefore cannot be followed up.
Slide 1 is entitled “A brief introduction to the chronic fatigue syndrome.” I’m normally fairly relaxed about the name of this condition, and will usually use the compromise “ME/CFS”, but in some cases the choice of name is significant. Later on the slides do consider issues around “CFS and ME”, but it is notable that right at the start the emphasis is on fatigue – a recurring theme. And yet the report of the trial uses the composite term CFS/ME, and states that the training sessions included “Understanding CFS/ME”.
Slide 2 notes that “other symptoms are usually present” but without identifying at this point what they are. It also says that FINE uses the Oxford Criteria to select patients: this is perhaps the widest possible “definition” of CFS, for example noting that:
- “Other symptoms may be present, particularly myalgia, mood and sleep disturbance.” (emphasis added, so presumably patients could meet the criteria without having any other symptoms);
- “Other psychiatric disorders (including depressive illness, anxiety disorders, and hyperventilation syndrome) are not necessarily reasons for exclusion.” (other definitions, whose existence is mentioned on slide 2 but not named, such as the Canadian Consensus Criteria – which was available at the start of the FINE trial – do exclude such conditions)
Slides 3 to 6 then describe fatigue generally (why?). In particular, although Slide 5 notes that fatigue is associated with several medical conditions, Slide 6 lists the “reasons” for fatigue in woment (why only women?) where “physical health” is only listed in 8.9% of cases.
Already, even at this stage, if I’m in the audience knowing nothing about ME/CFS, I’m getting the impression that most causes of fatigue are to do with lifestyle, beliefs, pressures, etc.
Slide 1 does start to make the distinction between fatigue and CFS, and includes (some of) the “other symptoms” of CFS. But it starts with the bizarre statement that “It has no medical or other explanation”! This is despite the wealth of research done into the physiological nature of ME/CFS, and once again reinforces a particular belief about CFS that is being given here as part of “understanding” this condition.
Slide 2 then discusses the differences between “disease” and “illness”, and has another bizarre statement that “There may be measurable changes which are thought to arise as a consequence of the illness” (emphasis original). It’s not clear exactly who thinks such a thing (an example of no references given), and this is pretty much saying that CFS is a psychosomatic illness. It is true that this slide does refer to “no obvious underlying disease cause” and “Medically unexplained symptoms” (emphasis added both times), which are better than the previous “no medical or other explanation”, but this may not be enough to counter the underlying message.
Slide 3 is one of the few to give a reference – so why not in all cases?
Slides 4-6 describe the prevalence of CFS, but with some disturbing messages: “feeling tired all the time” (not clear whether this is just fatigue or specifically Oxford- or other-defined CFS) and the (unsubstantiated?) statement that “Middle class people may be more likely to … attribute [their fatigue] to an illness cause rather than another cause (e.g. social)”. Again, with the latter there is an underlying message of “no illness cause”.
Slide 1 continues the discussion of prevalence, with another reference. It is interesting that 74% of people diagnosed with CFS by a GP had “previous psychiatric” (?) compared with only 21% at hospitals (and remember that FINE recruited people from GPs). And does “psychological attribution” (58% for GPs) refer to the patient’s own attribution or that of the GP?
Slide 2 is another which blurs the distinction between fatigue and CFS, introducing the term “chronic fatigue” (definition?). It includes bizarre statement 3: “CFS at the extreme end of the continuum from fatigue to chronic fatigue to CFS”, and although it does have the courtesy to put a question mark at the end of this, again the impression is that CFS is just fatigue, only more so.
Slide 3 goes back to prevalence (so why slide 2 there?), notes that it is dependent on the definition used – but has no figures for the Oxford criteria used in FINE!
Slide 4 cites a paper (available here) which describes prognosis, although this too covers several definitions, including “chronic fatigue”. (Interestingly the paper’s summary notes that “As the definition becomes more stringent the prognosis appears to worsen.”, but also that “Consistently reported risk factors for poor prognosis [include] holding a belief that the illness is due to physical causes.”)
Slide 5 notes a relationship between CFS and other “medically unexplained conditions”, and Slide 6 discusses (very briefly) possible causes.
Slide 1 contains bizarre statement 4: “Although underlying disease processes have
been ruled out, there are physiological changes which come about as the result of
disturbed rest-activity cycles, disturbed sleep, somatic symptoms of anxiety.” So we move back from “unexplained” disease causes to having them categorically “ruled out” (by whom?); and a clear statement that the “physiological changes” are the result of what is happening in CFS patients’ lifestyles. Again, no reference is given to support such a claim.
Slides 2 and 3 describe precipitating and maintining factors for CFS. This is actually a useful area of study (see for example, the “purple booklet” produced by the ME Association). However, in these slides the emphasis is on non-physiological factors, whereas the MEA guide describes physiological ones.
Slides 4-6 describe these maintaining factors in more detail. However, the only physiological factors mentioned in slide are “the harmful effects of excessive rest on healthy people”. While this is probably true (so not a bizarre statement in itself), the bizarreness comes from its inclusion here. Why should effects on healthy people automatically be applied to CFS sufferers? Oh, silly me, I forgot that only a few slides earlier “underlying disease processes have been ruled out”; so people with CFS are really just healthy people who happen to feel fatigue!
Slides 5 and 6 cite factors with no reference to the extent to which they have been observed in CFS patients.
Slide 1 continues detailing the “maintaining factors” for CFS. Once again, the overwhelming emphasis is on non-physiological factors in describing (and hence treating) this condition.
Slides 2 and 3 list very briefly some “treatments” for CFS. Given the emphasis of the presentation so far, it is not surprising to see the promotion of GET and CBT, with no reference (at this stage) to patients’ concerns about these.
And so ends the first induction session. 27 slides, at least 4 bizarre statements, at least 1 bizarre inclusion of research findings. Outcome: healthcare professionals with the idea that CFS (or ME/CFS) is just fatigue but more so, and that any physiological factors can be dismissed as resulting from poor behaviour and incorrect beliefs.
The second induction session does introduce the term “ME”, but comments on that will have to wait for another post.