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ETA: Dr Yes has written a very lucid summary of this topic, and why we should care - it's so good, I decided to put it at the top of the thread:
(My original first post is in blue, below.)
Hi folks. Disclaimer fist: this thread is aimed primarily at Americans, though of course everyone is welcome, and please forgive my radical simplification of this complex topic.
The American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they may want to have ME/CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders, and/or make it easier to add a functional somatic diagnosis along with any physical disease (OK, OK, you're physically ill - but you're also mentally ill.). Uh-oh.
To my mind, this seems like a step in the direction we've been fearing, that the psych lobby is trying to reinforce their position in the face of the XMRV finding (and other findings that point to biological disease).
There are activists keeping an eye on this for the UK, but there are important differences between the UK and US situations. Does anybody know if there is already US advocacy being done focused on this topic? Has the CAA, for example, issued any statements on this? I'd appreciate anybody pointing me toward any work already being done on this. Time is short.
(My original first post is in blue, below.)
It has a lot to do with insurance coverage, but also with medical treatment in general, with legal issues and with others revolving around how ME or CFS is seen by various parties. That's where the issue of standard, official classification is all-important. Our doctors and hospitals and insurance companies all use a standardized coding system called the ICD to classify physical diagnoses, procedures, etc.. It's supposed to be created by the WHO but a couple countries (including the US) have been approved to have their own 'modified' versions.
Anyway, when billing your insurance company / Medicare, your doctor gives them a diagnosis that is ICD-coded and they reimburse (or not) accordingly. So far CFS is not officially included as a disease in any version of the ICD (though the upcoming Canadian version, as ME Agenda reported, will). It depends on the version, but in the current US version it's only listed as a group of symptoms and abnormal but unclear clinical findings; so far the plan is that it will remain there in the next version but will ALSO be specifically excluded from the ME/ post-viral fatigue syndrome category. A specific exclusion like that would be a problem; the only way you could then be diagnosed with something officially recognized as a disease would be if you 'qualify' for their definitions of ME or PVFS (a very unclearly defined term; how will they determine whether something is "post-viral"? Can it be based on the patient's account of symptoms or do we have to have blood tests to prove it? Will IgG titers be considered diagnostic? etcetera...)
That doesn't mean you won't get health coverage for a CFS diagnosis, but it may become more difficult over time (it's hard enough now!). So it would be much better if you could get diagnosed with ME or PVFS, if those are put in the next version as has so far been planned...OR we could push to have CFS included with ME and PVFS (coded G93.3 in the "neurological diseases" category), as in the new Canadian version.
The APA issue is potentially more troubling the way things stand now. The DSM is their coding manual/ system for psychological diseases, and in the US is usually used instead of the ICD coding. In other countries it is often used as an adjunct to the ICD coding. The APA and the WHO have been working together now to try to meld their psychological classifications so that every country is using the same codes (they call this "harmonization").
Trouble is, the APA's current board in charge of developing the DSM is not a good bunch, and among them are those who want to blur the distinction between physical and psychiatric disease such that just about any medical condition can be said to have a psychiatric component if a doctor wants to.
Sounds crazy, and as ME agenda says we don't know if they'll put that in the DSM or not, but they have proposed it. If they succeed (which would create problems in 'harmonizing' with the WHO, I would think), then it would open the door to tons more CBT and antidepressants being prescribed for people with totally physical diseases. It would also make it even HARDER for all of us to fight the "psychosomatic" label, especially if CFS is not firmly recognized as a physical disease in the American ICD version, yet is still used nationwide by doctors as the name for our diagnosis (instead of ME or PVFS).
So, perhaps sometime in January we will see their first draft of the DSM. Two things we don't want in it: (1) the melding of potentially psychosomatic disease with physical ones, as mentioned above, and (2) the inclusion of CFS in the DSM in any way shape or form. (So far not proposed, but this bunch of psychiatrists, and quite a few others, clearly would like that...which of course would be a disaster if it happened outright, but it could also be cleverly insinuated, so we have to watch their definitions of "medically unexplained illnesses" and "functional somatic syndromes").
Hi folks. Disclaimer fist: this thread is aimed primarily at Americans, though of course everyone is welcome, and please forgive my radical simplification of this complex topic.
The American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they may want to have ME/CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders, and/or make it easier to add a functional somatic diagnosis along with any physical disease (OK, OK, you're physically ill - but you're also mentally ill.). Uh-oh.
To my mind, this seems like a step in the direction we've been fearing, that the psych lobby is trying to reinforce their position in the face of the XMRV finding (and other findings that point to biological disease).
There are activists keeping an eye on this for the UK, but there are important differences between the UK and US situations. Does anybody know if there is already US advocacy being done focused on this topic? Has the CAA, for example, issued any statements on this? I'd appreciate anybody pointing me toward any work already being done on this. Time is short.