The month long 'news' story that a few very pissed off people with a diagnosis of ME/CFS are issuing death-threats to scientists continues.
I have tried to ignore it but have finally given in and responded.
With regard to ME/CFS there is a lot of ‘lying’ going on at the moment.
The story about a handful of the estimated 17 million people world wide with this as a diagnostic label has been doing the news rounds for about a month now and has become more and more flamboyant the longer it runs.
The argument is made that some people with ME/CFS don’t want to believe that the illness they have is ‘psychological’ because they find it stigmatising. This is a complete misnomer and has been spread by the very people that want to classify ME/CFS as a ‘purely’ psychological disorder that should be treated ‘purely’ using psycho-social treatments such CBT and graded exercise.
The truth is much more complex: there are a great many scientists around the world who, contrary to what you will read in the British Press, do, in fact, believe that ME/CFS is a ‘physiological’ disorder, that it on the whole doesn’t respond to ‘purely’ psycho-social treatment, and that much more bio-medical research is needed.
Of course the dichotomy between these positions makes no sense in the first place – I have yet to work out what is meant by an illness that does not have any ‘physiology/biology’ attached to it.
The group that are loosely called the ‘Wessely School’, after Prof. Simon Wessely, claim constantly that the split between physiology and psychology makes no sense and that there needs to be an ‘end to Cartesian Dualism’. I happen to agree to a great extent although I have not made the leap in to complete reductionism when it comes to the mind/brain problem which is a complex and ongoing debate involving arguments around exactly what mind might be, how it arises from ‘brain’, what ‘thoughts’ are and if there are such things as ‘epiphenomenon’..
The problem I have is that if the ‘Wessely School’ want psychiatry and neurology to be the same thing then they cannot also argue that ME is not a ‘physiological’ problem – it simply makes no sense. They can’t have it both ways.
Many people with a diagnosis of ME or CFS or ME/CFS did have a viral start to their illness that has simply not resolved – when this happens they fall into a nightmare situation where they are told that the problem is lack of activity and a belief that they are ill when they are not. They are then told that the only thing that might help is CBT and graded exercise – some refuse, but a great many do try this approach and a great many of those find it of no help at all and some find it positively harmful both to their physical and ‘mental’ health.
Being constantly told that you are not to believe your own perceptions of your own body is, I can personally attest, quite head-fucking.
There have been two large medical trails in the UK looking in to psycho-social help for patients with ME; The FINE trial, the results of which were so bad that they have been largely buried and the PACE trail which showed very modest improvements in a small section of patients that were selected using the broadest criteria possible for ME/CFS patient selection. The PACE results were then spun out of all proportion via the Science Media Centre and the resulting headlines said things like ‘Got ME? Just exercise!’ (The Independent).
These two studies were allocated ALL of the Medical research Funds for ME/CFS in the UK and NO public money has been given for any bio-medical research.
Meanwhile bio-medical research has continued to be done; quite a lot has been discovered about the illness and proposed International Consensus Criteria have recently been published in the Journal of Internal Medicine supported by 25 clinicians and researchers from around the world:
The general perception of those with ME is NOT a concern that being called ‘mentally ill’ is stigmatising – it is that the mental health treatments they have been offered simply do not help and yet in the UK nothing else is even being looked at and clinics offering CBT and Graded exercise have been rolled out across the NHS, at great cost, with very little evidence for their efficacy and are the ONLY ‘treatment’ available to people.
The clinic I attend for CBT and Graded exercise has for instance told me:
‘try and picture a blue bubble around myself so it is easier to deal with stressful people’
‘try reading the book of Job to help with sleep’
‘ME is classified as a mental health problem’ this is untrue it is not anywhere classified in this way.
‘Do as much on a bad day as you do on a good – try to level out your activities’ – to me this simply stresses the complete lack of understanding there is for what it is to live with this illness for years on end.
I won’t go on – it makes me depressed thinking about it…..
I will just point out that Wessely is British liason psychiatrist who works in conjunction with government bodies that deal with benefits claims (he is cited on the DWP guidance for claims assessors) and with defence departments in the UK and the USA and also denies a ‘physiological’ explanation for gulf war illness, and also is quite happy to work for disability insurance companies that have been prosecuted for denying disability claims.
If Simon Wessely really cared about patients, as he claims, then he would not be shamelessy and constantly self-promoting in a way that damages their interests by giving the impression that there are more than a handful of people who feel they have been so maligned that they have ‘lost it’. You would think as a psychiatrist he might, in fact, understand that constantly being told that you are not experiencing what you are experiencing might lead someone to such action.
