This is the second part of my comments on the training materials used in the FINE project on treating Chronic Fatigue Syndrome (for the first part, and details of the project, click here).
It occurs to me that in those earlier comments I may have been too dismissive of psychosomatic illnesses; this is not my intention, and I apologise if I upset anyone. (I’ll probably make the same mistake when I discuss depression later.) I accept that psychosmatic or somatoform illnesses do exist, and they can be severe; the question is to what extent “CFS” should be considered in this category, and on what evidence.
Anyway, on with the slides. I left these in the middle of page 5, at the end of the first session. As a brief recap, so far these have discussed CFS, with no mention of ME, and have left strong impressions that CFS is simply a more extreme case of fatigue, with any other symptoms having been largely ignored, and that psychological and behavioural treatements are the only effective ones.
Slide 4 starts the second session, and has the title “Patient, public and professional perceptions of CFS/ME”. This is the first time that ME has been mentioned, and it is once again significant that the title refers to “perceptions” – not scientific evidence!
Slide 5 notes that “there are widely differing views on the relationship between CFS and ME”, and then mentions the “London Criteria” (see discussion on these on ME Association website).
Slide 6 then lists these criteria, which include “exercise-induced fatigue precipitated by trivially small exertion (physical or mental) relative to the patient’s previous exercise intolerance”. It is interesting that the discussion in the previous session on cognitive factors which may perpetuate CFS includes “fear of activity doing damage – (catastrophic beliefs)” (page 4, slide 5), yet here is an explicit definition of the rationality of such fear! So, according to the definitions used in these slides:
- ME = “exercise makes you worse”
- CFS = “lack of exercise makes you worse” and “believing that ‘exercise makes you worse’ makes you worse”
Slide 1 continues the discuission of the relationship between CFS and ME, and includes the next bizarre statement: “belief in the diagnosis of ME as opposed to CFS is often associated with a firm belief in an underlying disease process”. If ME can be defined as on the previous slide, then surely there is no question of “belief” in one diagnosis or another! The impression given, despite the previous bullet points, is that ME is something a patient can choose to describe their condition, rather than accept a diagnosis of CFS.
Slides 2 and 3 add to the confusion between CFS and ME in these slides (or perhaps deliberately conflate them), by noting that “many people don’t believe in [CFS]” followed by a comment demonstrating a lack of belief in ME.
Slide 4 is really interesting: it notes that there are problems with “medically unexplained” diseases, which is quite right – but doesn’t say who has these problems!
Slide 5 introduces thye composite term “CFS/ME”, and while noting that people “Experience many severe, chronic, unpleasant, disabling symptoms” [i.e. not just fatigue!!], also mentions patients’ feelings about the condition and its acceptance or otherwise by the medical profession. It also states (without evidence) that “A large proportion of patients with CFS/ME are also depressed or anxious or both”. The relationship between ME and Depression is covered in Session 3, so I will leave detailed comments until later – another post.
Slide 6 is now explicitly about patients’ beliefs in relation to CFS/ME, once again sliding back to the psychosomatic model, which is emphasised in …
… slide 1, stating that it is such beliefs which cause patients to “do less well”. Once again we are in the realms of the bizarre: if ME truly is a physical disease, then it makes sense to believe it is so. No-one would say this about cancer – although I understand that this used to be said about Multiple Sclerosis [I will try and find references for this].
Slide 2 continues this process, suggesting that a diagnosis of a medically unexplained disease “may turn into a ‘self-fulfilling prophecy'” and may be used by patients to “[legitimise] their suffering”. This bizarre statement (I’ve now lost count) suggests that patients want to suffer, again with no evidence to support this.
Slide 3 suggests that “there is some evidence that being a member of an ME support group is associated with poorer engagement in treatment and/or worse outcome”. Once again, this is stated without references; and whereas there may be a statistical correlation this doesn’t necessarily mean that one thing causes another. The impression is building that beliefs about ME are what prevent successful treatment and recovery.
Slide 4 is very frustrating; it gives headings without any indication of what is being said about them. However, I think it is fair to assume (from the overwhelming emphasis in the rest of this presentation) that the “ME activists” are seen as being unhelpful. One indication of this is the use of “CFS/ME” as a general heading, with “ME” alone used in negative contexts.
This concludes the second session in these training materials. The term “ME” has been introduced, but despite a definition which shows its difference from CFS, it has been lumped in a general “CFS/ME” term with the strong suggestion that those who concentrate on the “ME” part are not just wrong but an actual hindrance to recovery.
I think it’s worth reminding ourselves that the Oxford Criteria for CFS says “Patients with established medical conditions known to produce chronic fatigue … should be excluded [from this definition] “. I think this gives an added urgency to getting ME defined as an “established medical condition” so that it can be considered, reseaerched, diagnosed, and treated on its own terms without the confusion with CFS.
The next session in the FINE training materials goes back to refering to CFS alone, and comments will have to wait for another post.