Hi Marco,
 
Quote Originally Posted by Marco View Post
Welcome to the forum Martin.

You couldn't find a better place to inform yourself properly about the illness known as ME/CFS.

First suggestion. Check out the library section. There you will find an awful lot of GOOD SCIENCE and there would be much more of this if only public perceptions and funding hadn't been hijacked by vested interests. Read a few of the posted articles and note the qualifications of the authors, their speciality, their methods, the balanced reporting of their findings and the fact that they are objectively measuring physiological abnormalities. Now contrast that to the literature that proposes pyschological theories, such as somatoform disorder, without being able to objectively demonstrate their existence or describe their MO; that identifies a patient cohort based on 'fatigue' only and excludes anyone with evidence of any organic pathology; that measures 'improvement' based on snapshot measures of perceived fatigue rather than longtitudinal measures of actual physical activity, that ignores patients' other symptoms regardless of whether they improved or deteriorated; that excludes patient drop out and negative comments in reporting results; that quote confidence intervals that render any results meaningless and that publish using an incestuous group of 'peers'. I could go on.

Secondly I highly recommend the summary version of the Canadian Consensus Document if you want to know what ME/CFS really is :

http://www.mefmaction.net/documents/me_overview.pdf

Most of us would agree that the CCD captures our experience of ME/CFS better than any previous document. Now contrast the description of the illness with populist views of ME/CFS as 'tired', 'yuppie flu', 'malingering', 'work shy' or the seemingly scientific but equally shallow theories put forward by psychologists like 'predisposing personality, 'exercise phobic', 'deconditioned', 'catastrophising', 'somatoform disorder'. The reason we rail against psychological explanations is not that we have a vested interest in having an organic illness, or that we have any disrespect for those with conditions that would respond to psychological/psychiatric treatments, its because psychological explanations of this illness are just plain WRONG. Wouldn't any rational individual, suffering from a multi system neurological disease, feel deeply betrayed to see scarce research resources syphoned off into wrong headed and ultimately worthless 'treatments' while being denied ANY real treatment from our public health services?

Thirdly, as to why we appear to single out the Wessley school for particular criticism, you really owe it to your employer (The Guardian) to thoroughly read Professor Hooper's Magical Medicine, available here :

http://magical-medicine.blogspot.com/

Even a cursory glance at Professor Hooper's letter to the health Minister, Lord Drayson, should convince you that this is a major public interest story and that UK taxpayers would be horrified at the misuse and waste of public monies. If you, or your Bad Science colleagues, really want to be heroic and stand up against quackery, this is the place to start.

Stick around here and you will find that many here were intelligent, successful, energetic and even athletic individuals looking forward to a full and rewarding life before being struck down by illness. We did not become lazy or disillusioned overnight, did not become physically deconditioned overnight, did not become exercise phobic or suddenly develop strange irrational illness beliefs. We just got ill and were left to fend for ourselves.

If we sometimes come across as a little 'strident', is it any wonder?

Excellent post! The only problem I see with it is that Mr. Robbins can't enter the Library here, formally, without having passed the 100 posts mark. However... with some ftp-cleverness, he ought to be able to work around that one problem easily.

And indeed: If The Guardian is a decent newspaper (I lived a while in England and bought The Times, while my then girl friend bought The Guardian but that's just me and her, and I haven't seen much of TT or TG since then), its staff ought to consider doing a decent in depth interview with professor Malcolm Hooper.

Best regards,

Maarten.