The discussion over 'normal' is of particular relevance to CFS patients following the way in which results from the PaCE trials have been spun.
There's a clear and simple explanation of some of this with regards to the SF36-F scale here:
As part of this scale, one rates whether one's ability to perform certain activities is normally i) limited a lot, ii) limited a little or iii) not limited at all.
i = 0 points. ii = 5. iii = 10.
The 10 activities assessed as part of the sf-36 are:
1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports.
2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf.
3.Lifting or carrying groceries.
4.Climbing several flights of stairs.
5.Climbing one flight of stairs.
6.Bending, kneeling or stooping.
7.Walking more than a mile.
8.Walking several blocks.
9.Walking one block.
10.Bathing or dressing yourself.
In the PACE trial's protocol, a patient needed to be have a score of 85 or over before they could be classed as recovered. A score of 65 or under was used as part of the inclusion criteria to indicate abnormal disability. At the end of the trial, it was the researchers involved were claiming that patients with a score of just 60 had recovered.
When results are being manipulated in this way, and being used to make misleading claims about the efficacy of treatments and the likelihood of recovery, it is important for patients to insist upon more demanding criteria for "back to normal". There will always be quacks trying to make money from curing patients, while really leaving them sick and disabled.
The justification of a score of 60 being 'normal' was that it was the mean - 1 sd of the population scores. The researchers initially claimed this was for a working age population, although they have now (obtusely) recognised that this was not the case, and in fact 28% of the population was aged over 65. It would be possible for George Osborne to claim that he had got the economy back to normal... so long as he was using the mean- 1 sd of a set of economies which included those who were much less wealthy than Britain had been - I can't imagine many journalists letting him get away with it though.
There is a serious problem with a substantial portion of medical staff believing that patients given a label of CFS deserve to be treated with disdain, and that it is acceptable to pragmatically manage the psychosocial aspects of their illness through the promotion of 'positive' narratives and encouraging a sense of control over symptoms, and of the likelihood of recovery, in a way which is not supported by the evidence. One worry I have about
Mette (PhD student UK) 's work here is that, if she is just studying the narratives around the use of 23 and ME genetic testing, and this testing is itself quackery, then this could be used to justify further manipulation and disdain being heaped upon patients without their consent (although I am certainly not saying that this is her intent). If it's decided that patients like using 23 and ME to give themselves a sense of control and understanding that is founded on myth, then some doctors could see that as justifying their own myth building, in order to guide the cognitions of patients in a more 'functional' manner.
I really don't know much about genetic testing, or about Mette's work, but as I've read a couple of threads, that has been one concern.
