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Good article on how draft for next WHO icd classification does not have ME under nervous system dis.

anniekim

Senior Member
Messages
779
Location
U.K
Worrying times. I had heard through the excellent work of Suzy Chapman about the news that in the current draft for the next W.H.O ICD edition ME and CFS are not listed under illnesses of the nervous system as they have always been. However, an entity called bodily distress disorder is under mental health in the new draft and both CFS and ME are listed as illnesses that come under BDS, This is extremely worrying. A good article about it all here http://guardianlv.com/2014/02/fibromyalgia-and-mecfs-labeled-mental-and-behavioral-disorders-by-who/
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Worrying times. I had heard through the excellent work of Suzy Chapman about the news that in the current draft for the next W.H.O ICD edition ME and CFS are not listed under illnesses of the nervous system as they have always been. However, an entity called bodily distress disorder is under mental health in the new draft and both CFS and ME are listed as illnesses that come under BDS, This is extremely worrying. A good article about it all here http://guardianlv.com/2014/02/fibromyalgia-and-mecfs-labeled-mental-and-behavioral-disorders-by-who/
This is OUTRAGEOUS!
Now the HHS/IOM charade makes sense, with this as the context.

What can we do about this?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Towards the end of January, ICD Revision confirmed a decision to postpone presentation of ICD-11 for World Health Assembly approval by a further two years, from May 2015 to May 2017, to allow more time for development and field studies: http://wp.me/pKrrB-3H9

If anyone ever wants to stay up to date with these developments then there is frankly no one better informed in my view than @Dx Revision Watch and Suzy Chapman.

You can read the update from her (8 February 2014) here: http://dxrevisionwatch.com/2014/02/...93-3-categories-within-the-icd-11-beta-draft/

One of our often unsung heroes in my book :)
 

Antares in NYC

Senior Member
Messages
582
Location
USA
Holy crap the campaign to ignore the emerging science is really upping the ante!
I'm no fan of conspiracy theories, but all the recent events lead me to believe there are people with a committed interest in sweeping ME/CFS under the rug, deny it research, and dismiss the millions of patients as insane. I mean, we even witnessed extremes as petty as having news reports about ME/CFS banned from Facebook!

Something's up.
 

leela

Senior Member
Messages
3,290
@Antares in NYC Yes indeedy. No tin foil hats needed, this is happening in a big way.
Let's hope it's just the last desperate grab of the old guard as it loses its grip.

Because let us not forget all the amazing people and information "coming out" in an even bigger way now.
Never before have we had such a whirlwind of high-profile scientists collaborating with each other, collectively petitioning the government, publicly calling BS on the funding, gathering private investors to move research ahead; plus multiple documentary films, several journalists with integrity and heartfelt commitment to solid reporting, a gathering solidarity among patients, ever-increasing evidence for the biomedical basis of the disease, etc.

There is reason to stand tall in the face of the Shenanigans and see how desperate and pathetic it is.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
it looks like one can register with the beta draft site and make comments. *EDIT: apparently they want only researchers and healthcare providers*

I would recommend taking a reasonable, businesslike tone and, when talking about BDD, not focusing solely on ME and fibro and MCS, etc., as this will hurt everyone

(seriously, anyone with any "extra" or "unexplained" symptoms can get this as an add-on diagnosis and be shuttled to an alternate, do not take seriously, limit testing, limit appointments, track... including MS, Lupus, cancer, rare diseases, etc.; anything that is difficult or may take a little while to diagnose is at particular risk, including most autoimmune and neurological diseases! ).
 
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biophile

Places I'd rather be.
Messages
8,977
I'm no fan of conspiracy theories, but all the recent events lead me to believe there are people with a committed interest in sweeping ME/CFS under the rug, deny it research, and dismiss the millions of patients as insane. I mean, we even witnessed extremes as petty as having news reports about ME/CFS banned from Facebook! Something's up.

Although such vested interests probably do exist, I think ideology and tradition is playing a major role. The history of psychiatry has always been swayed by fads and ideologies. Wider medicine has always had "medically unexplained" physical symptoms, and if you go back far enough there were basically no good explanations for almost any symptom.

Psychobabbling also has a long history in medicine, at least since Freud's era. Before then, mental illness was commonly seen as a physical thing or a weak constitution, or sometimes spiritual afflictions involving demons etc.

The growing number of overlapping and vague syndromes, combined with all the other medically unexplained symptoms which are not specific to any syndrome, presents a problem and burden to health care. A generalized psychosomatic functional syndrome such as BDS is very convenient for sweeping up anything which cannot be explained well yet, or is too difficult to explain well, or does not yet have its own well-defined definition. Those judged as mental patients and social deviants alike used to be routinely locked up in institutions without real help because it was very convenient too.

As alex3619 has mentioned numerous times at this forum, much of the current thinking is simply regurgitated from Freud's era of hysteria. Psychiatry is sort of like the odd cousin or the "Uncle Fester" of the medical family. Yes, it has moved on from Freud's era, but some of the underlying assumptions have remained without adequate scrutiny.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
But without Uncle Fester's redeeming features.

I think Dx Revision watch is in a holding pattern? I read that reporting will not continue, but I do not know the details.

These are what we do know: http://dxrevisionwatch.com/2014/02/11/final-post-on-dx-revision-watch/

BDD (Bodily Distress Disorder) is part of what we are fighting, and were always fighting. Its an example why I am so focused on psychobabble.

BDD is so broad it catches everything. If you don't know what someone has, it must be BDD! Every misdiagnosis, every too hard case, every rare genetic disorder they do no test for, every atypical presentation of existing disorders ... this is pseudoscience at its most dangerous. Its a reprise as hysteria, now that hysteria has fallen out of favour. Its.like a century long timewarp.
 

anciendaze

Senior Member
Messages
1,841
Anyone check on what the draft says about hypokalemic periodic paralysis? There is a doozy of a condition for misdiagnosis. Coupled with the fact that doctors are actively discouraged from running expensive tests on patients with a psych. label this practically guarantees that some people who go to doctors for help with a very real organic condition are going to die in locked psych. wards.
 

Purple

Bundle of purpliness
Messages
489
BDD is so broad it catches everything. If you don't know what someone has, it must be BDD! Every misdiagnosis, every too hard case, every rare genetic disorder they do no test for, every atypical presentation of existing disorders ...

...every doctor who couldn't be bothered to use or increase their knowledge or act professionally to give a correct diagnosis or who is not allowed by the 'system' to run appropriate tests...
 

anniekim

Senior Member
Messages
779
Location
U.K
@Dx Revision Watch Sorry for not making It clear that ME isn't actually listed under bodily distress disorder in the current ICD 11 beta draft, my mistake. Thank you for though highlighting it is not currently under nervous system illnesses either and is currently not anywhere - and for all the great work you have done on this
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
A paper came out just the other day, on BDD, I will see if I can find it. CFS, FM, IBS are all included in the paper.

PS Doh, paper was from last year. The most recent paper, often cited, that discusses in depth what BDD is meant to be, is about four year old:

Journal of Psychosomatic Research 68 (2010) 415–426

One single diagnosis, bodily distress syndrome, succeeded to capture
10 diagnostic categories of functional somatic syndromes and
somatoform disorders


Per Fink, Andreas Schröder

It is often the case that BDS and BDD are discussed in terms of CFS, FM etc.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Alex, when you say a paper on "BDD" are you sure you mean "BDD" as in "Bodily distress disorder" which is the term proposed by the 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) that is one of the groups advising on the revision of ICD-10′s Somatoform Disorders.

Or do you mean "BDS" which is the already operational definition and criteria as published by Fink et al in 2010?

With three terms in play: BDD, BSS (Bodily stress disorder) and BDS it is important that the correct term is used.

If you find the paper please let me have the citation ref.

Suzy