That's not strictly true ISO. YES- people should submit objections if they can (I'm going to). BUT- the APA aren't necessarily going to listen to reason. IF they don't, it doesn't mean we are screwed. There are other strategies that can be adopted should the APA push through with these ludicrous changes. We might have to be in it for the long haul in terms of exposing the fallacies contained in these new disorders - but we have to stop blaming people for events that may not be within our control (i.e. the fallacies of psychogenic explanations for somatic (bodily) illness and the willingness of the APA to comply with those in making the next DSM).
Whilst I agree that the psychs are probably not going to listening to reason, they may respond to political pressure.
The most effective political pressure would come from professional based submissions i.e: from other areas of medicine, allied health care professionals, scientific researchers, lawyers and politicians.
Of course patient submissions, will add to the overall picture of disquiet on what is being proposed and will apply pressure on the administrative process and could push final deadlines back, which would enable the CFS community (especially in the USA) to start to seriously lobby these other professional groups .
Other strategies I have seen employed by XMRV activitists could have been(and may still be) useful here too, if USA based PWCFS can channel some of their effort into this extremely important issue and step away from other projects for a while.
This forum has over 4,000 members - and I dont know how many are active and or are USA based - however, given the activity on threads here - and on other projects - there should be enough people, with enough skills and energy to do something significant here.
As for XMRV saving the day, it might only do so for a sub set of CFS patients. For the remainder with an existing CFS diagnosis who make a repeated request to their doctor for an XMRV test - in a climate where the new CSSD criteria takes root - these patients may fast find themselves with a CSSD bolt on psychiatric diagnosis, and once there - they might find it very difficult indeed to get any sort of aetiological tests or treatments.
Unfortunately Angela, at this stage - due to what seems to me as a paltry almost non existent lobbying campaign on the part of the international CFS community - you may well be right.
We might be lumped with these changes and have to resort to other strategies. But then again, that is a rather defeatist attitude I think.
There will be another final review process, although it will probably only address minor or window dressing issues.
However, before that occurs - a concerted effort by the international CFS community and many currently active XMRV advocates, might add to mounting pressure to have this extrodinarily wide criteria ditched.
It would not be hard to do - it would just mean refocusing and channelling some effort there.
It would be pretty easy to high light and get general public support on... how destructive this criteria is going to be for medicine and society generally. It is so extrodinarily wide, that it will catch many people with unexplained medical symptoms.
A quick online search at this site here:
http://www.medindia.net/patients/patientinfo/syndrome/home.aspindicated the following 115 syndromes in various classifications:
Environmental (4)
Cardiac (13)
Congenital (21)
Pulmonary (5)
Renal (7)
Gastrointestinal (7)
Neoplastic (9)
Infectious (9)
Neurological (15)
Reticulo-endothelial Hematologic (8)
Others (17)
For those interested in a brief explanation of some of them - see:
http://www.doctorslounge.com/studlounge/downdirty/syndromes.htm
Some of these syndromes will be more well recognised and therefore easier to diagnose than others. However, the point remains - that a doctor or physician who fails to to recognise the collection of symptoms and assign them to an appropriate syndrome classification, may easily discontinue the investigative process and assign the patient to a CSSD classification instead where they exhibit what the doctor might consider ''excessive'' thoughts, feelings or behaviour over their symptom(s) and this has been evident to the doctor in the patient for more than 6 months. Perhaps 2 consecutive attendances to a doctor expressing anxiety over symptoms and requesting further investigative tests, might be enough to have a doctor consider CSSD.
Based on the sheer number of syndromes that exist - there appear to be a lot of scope for thousands of patients to be parked in a CSSD classification and this would not account for how many thousands or hundreds of thousands who have an existing syndrome diagnosis, that might also find themselves with a new bolt on diagnosis when they want further investigations of symptoms that they feel, might be new or in addition those they generally experience.
This will be a boon for psychiatry but will, I fear - result in the death of many more patients, from illness and suicide.
If we have to resort to other tactics if this fails, so be it. I don't generally believe in the idea of chasing a horse that has bolted. Better to do all you can, to avoid this taking place.
Sadly, Angela my personal view is this. If DSM 5 goes through as proposed, then the efforts you have pumped into the ME CFS area re the antics of psychiatry for the last 8 years, will now require a quadruppled effort, especially if these changes succeed and have a flow on effect in the UK.
