the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

[Dr. Yes]

Hi ME agenda aka Suzy,

Thanks once again for the great help! Some points to go before I sleep...

2] The Canadian Clinical Modifcation is ICD-10-CM.

You mean the ICD-10-CA, right?

G93.3 Postviral fatigue syndrome

Includes: Benign myalgic encephalomyelitis

Chronic fatigue syndrome

Excludes: fatigue syndrome NOS (F48.0)

This is almost exactly what we want to see in the next American ICD version! Good for the Canadians! I hope the ICD-11 turns out to be at least this good too. One complaint we would have, I guess, is the use of the word "benign" for ME, and I'd like to know how they define that. (How does the WHO "define" anything? What case definitions does it use?)

Also, I would have expected ME to be the first disease listed and PVFS (whatever that is) and CFS listed under "includes". Makes more sense that way, and prevents some confusion about the necessity of viral pathogenesis.

If anyone has a good primary source for the most recent proposals for the classification/codings for PVFS, ME and CFS in the forthcoming US ICD-10-CM (October 2013) Clinical Modification and the date by which these will be "frozen" please alert me with URLs and I will add this to my new DSM-5 Watch site

Yes, that's something we definitely need to look for. Do we have any good websearchers out there?

Even when proponents of 'psychogenic' explanations (it's in your mind, you're imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term 'somatic illness' they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word 'somatic' does not mean "illness caused by psychological dysfunction". It merely means illness of a body, or a bodily illness.

Kennedy is right of course, but I blame those psychiatrists for this misconception. They keep using the term somatoform disorder, which confuses people, and worse still they encourage using it interchangeably with functional somatic syndromes (or symptoms).

The worst propaganda device in this regard is Wikipedia, which has been hijacked by the Wessely school in their areas of interest. That's why the Wikipedia entry on CFS sucks so bad. But in the area of psychosomatic medicine they have completely re-written science and gotten away with it (because it's Wikipedia, and it can be infiltrated). Just look up "functional somatic" and you will get referred first to somatization disorder (NOT the same thing), then to things like "functional symptom". Here's where it gets even worse - the definition Wikipedia uses for functional symptom is:

A functional symptom is a medical symptom in an individual which has no identified cause (etiology) despite extensive diagnostic assessments. By default, a functional symptom often is judged to have causes that are neither physical nor physiological, but rather psychological or psychiatric.[1] Historically, functional symptoms tend to be reclassified as organic as investigative techniques improve.


That is the the WORST attempt at a definition of ANYTHING I have ever read!! It is so laughably illogical...why would a functional symptom be seen as psychological "by default" if they "tend to be reclassified as organic as investigative techniques improve"?? If that's the how 'psychological science' actually looks at things, it isn't science at all, but a 'faith'! Yet I don't think that's (completely) the case, as this entry's ONLY reference, a British Medical Journal article by Richard Mayou and Andrew Farmer, states that:

"Many of the somatic symptoms that they present with—such as pain, weakness, and fatigue—remain unexplained by identifiable disease even after extensive medical assessment. Several general terms have been used to describe this problem—somatisation, somatoform, abnormal illness behaviour, medically unexplained symptoms, and functional symptoms. We will use the term functional symptoms, which does not assume psychogenesis but only a disturbance in bodily functioning."


So where did Wikipedia get it's definition? Not from its sole reference, apparently. And notice that even these authors point out that many psychologists use terms that DO imply psychogenesis for these "unexplained" symptoms.

THAT, folks, is the source of our problems with the psychological profession: the scandalously unscientific, blatantly illogical ideology that anything that cannot be explained by current (even just standard) medical tests is all in the patient's head. How such practitioners do not get stripped of their licenses or at least laughed out of their profession is beyond me. And those are the people who dictate policy in the UK and have made inroads here in the US -- and yes PETER WHITE is one of the most influential ones.

(And btw, one of the referenced authors in some of these twisted Wikipedia comments is his buddy and ours, Simon Wessely.)
------

Fresh eyes - I'll get back to you on the ME ICD thing when my brain stops hurting!
-------

ETA - The article that Brenda linked to in the previous post is chock-full of the kind of psychiatric doublespeak that we have to be wary about. It's similar to the YouTube video link I gave in the CAA brochure/ Peter White thread, which is utterly shocking. Just watch Part 4, if you watch only one of the four parts (though you'll want to see 'em all). Anyone who defends using the terms CBT or GET on this site should be REQUIRED to watch it!

http://www.youtube.com/watch?v=bvArXvqAMiA!!!!!!!!!!!!!!!!!!!!!

They have so corrupted the meanings of traditional psychological terms and of the terms CBT and GET that none of them are useable anymore.

 

[Dx Revision Watch]

Hi ME agenda aka Suzy,

You mean the ICD-10-CA, right?

Sorry, Dr Yes, a typo - that should of course have read ICD-10-CA. I've corrected it on my posting. Thanks for spotting.

This is almost exactly what we want to see in the next American ICD version! Good for the Canadians! I hope the ICD-11 turns out to be at least this good too.

I prefer not to speculate, but I would think this will most likely be the ICD-11 scenerio: that PVFS will stay at G93.3, with (Benign) ME underneath it and that Chronic fatigue syndrome will be coded to G93.3 in the Tabular List, as well as indexed in Volume 3: The Alphabetical Index (or however that volume is to be styled for ICD-11) - as we see in the 2009 Canadian Clinical Modification.

Don't forget, there will be some in the US, in Australia (Basset) and in the UK (Ben, for example) who don't want Chronic fatigue syndrome to be placed with ME and Postviral fatigue syndrome at G93.3, and who may further call for PVFS to be split from ME, and coded elsewhere.

One complaint we would have, I guess, is the use of the word "benign" for ME, and I'd like to know how they define that.

Doesn't Ben give a (hopefully referenced) explanation for the historical taxonomic principles for the application of "benign" in ICD, in the "Short" version of her document? If not in the "Short" version, then possibly in the 29 page version?

The use of the term "benign" is something which can be discussed once the iCAT is launched and when proposal forms for Chapters V and VI are issued (assuming Dr Geoff Reed still intends to issue these).

How does the WHO "define" anything? What case definitions does it use?)

There are no "definitions" in ICD-10 Volumes 1, 2 or 3 for PVFS, ME or "Chronic fatigue syndrome". And definitions have not to my knowledge ever been set out for enquirers.

BTW, In Volume 9 Somatoform Disorders. 5.3 Disease, Sickness, or Illness. Which One Is Chronic Fatigue Syndrome and/or Neurasthenia? Bedirhan Ustun

Ustun writes:

...Whatever name it is given - Chronic Fatigue Syndrome (CFS), Neurasthenia, Neuro-endocrine-immune dysfunction syndrome, or any other label such as Fibromyalgia, myalgic encephalopathy (ME), Gulf War syndrome, or yuppie flu - the nosological status of this group of conditions has remained controversial over the last century...Unfortunately, the assessment, diagnosis, classification and treatment of these conditions have suffered from lack of precision and objective measures, and from arbitrary definitions...The "ill-defined" nature of these disorders tests the sharpness of our diagnostic system too. CFS and neurasthenia form a group of complex conditions that may best be categorised as a syndrome...The World Health Organisation (WHO) receives more than 5000 applications each year calling for nosological clarification of these conditions...

Note, however, that Fibromyalgia has its own codings within ICD-10:

M79.0 Rheumatism, unspecified Tabular List
M79.7 Fibromyalgia Tabular list and Index

(There have been recommendations for "Neurasthenia" (Chapter V) to be dropped from ICD-11.)

You might also reasonably ask how, if Fibromyalgia has its own discrete ICD code, could it also be classified within the DSM-V "Somatoform Disorders" section (or whatever they rename it) since this would correspond with ICD Chapter V? Well, according to Creed, Fibromyalgia is now known as "Widespread pain disorder".

If you see, on the internet, UK folks writing "the official WHO definition of ME" what they are mistakenly quoting from is a paragraph from the short version of the Canadian Consensus Document. They are not quoting the WHO.

In placing (Benign) ME at G93.3, we do not know:

1] How the WHO views the relationship between (Benign) ME and PVFS.

(A synonym, sub-entity or "best coding guess" etc)

or in indexing Chronic fatigue syndrome at G93.3

2] How the WHO views the relationship between Chronic fatigue syndrome and PVFS, and Chronic fatigue syndrome and ME.

When approached for clarifications, WHO classification experts don't like talking about "Chronic fatigue syndrome" at all. They talk round it, in terms of where it is not classified or indexed, vis:

Quote from WHO Dr Saraceno:

“…I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years. Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category. Neurasthenia remains under mental and behavioural disorders as F48.0 and fatigue syndrome is included within this category. However, post-viral fatigue syndrome is explicitly excluded from F48.0. The WHO ICD-10 Diagnostic and Management Guidelines for Mental Disorders in Primary Care, 1996, includes fatigue syndrome under neurasthenia (F48.0) but does not state or imply that conditions belonging to G93.3 should be included here. I would also like to state that the WHO’s position concerning this is reflected in its publications and electronic material, including websites…”.

The WHO's Dr Jakob quotes the above then adds "...Again, there is no evidence for any change of the above to be made for ICD-11"

Jakob has also reiterated, this year, that according to the taxonomic principles governing the ICD-10, it is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive..."The same principles will apply to ICD-11."


This is why I want people to be aware of the potential for increased content in ICD-11 and to look at the relevant documents on the ICD-11 Revision Google site. It is not known at this stage whether there will be just a line each for the three entries or additional information added, and if so how much.

But some diseases, disorders and syndromes will have considerable content populated according to the "Content Model".

See: https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

So we need to be aware of this - some content may be included in this version of ICD and we will need to monitor this.

Also, I would have expected ME to be the first disease listed and PVFS (whatever that is) and CFS listed under "includes". Makes more sense that way, and prevents some confusion about the necessity of viral pathogenesis.

Your "whatever that is" is very apt - because we don't know what the WHO understood PVFS to be at the point at which it was added to ICD-10 and we don't know what WHO understands by "PVFS" now, as we approach the revision of ICD-10.

Yes, that's something we definitely need to look for. Do we have any good websearchers out there?

Could someone from the US please post the most recent proposals for ICD-10-CM? It needs to be here. But I think a US person should be locating it and ensuring that it is the most recent proposals - not me. Try one of the US patient org sites for links.

Kennedy is right of course, but I blame those psychiatrists for this misconception. They keep using the term somatoform disorder, which confuses people, and worse still they encourage using it interchangeably with functional somatic syndromes (or symptoms).

This is so, but Kennedy's comments had been prompted by recent concerns that some UK people were jumping on the word "somatic" in journal letters assuming that the word, itself, was synonymous with "somatoform disorder" or "somatic distress disorder".


You wrote:

The worst propaganda device in this regard is Wikipedia, which has been hijacked by the Wessely school in their areas of interest. That's why the Wikipedia entry on CFS sucks so bad.

The Wessely Article page and the CFS pages have been heavily controlled by a UK NHS hospital registrar - "JFW" - Dr Jacob de Wolff. (I have written about Wiki elsewhere on this forum.) (http://www.forums.aboutmecfs.org/showthread.php?t=1021&page=3 Posts #26, 28, 29+

You have written:

...Yet I don't think that's (completely) the case, as this entry's ONLY reference, a British Medical Journal article by Richard Mayou and Andrew Farmer, states that...

Yes, I'm familiar with those Mayou and Farmer BMJ articles (

If you can bear to, it's worth skimming this EACLPP draft white paper:

A white paper of the EACLPP Medically Unexplained Symptoms study group
Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems
Draft – prepared by: Peter Henningsen and Francis Creed January 2009

http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

Creed is both a member of the DSM-V SDD Work Group and a co-editor of the Journal of Psychosomatic Res. He is using his journal as a platform for SDD Work Group deliberations, and dialogue around them. DSM Work Groups are publishing proposals for discussion within the field in journals edited by their mates, instead of also publishing detailed updates and reports on the APA's DSM-V website.

Additionally, in April 2006, Creed published seven or eight papers by various members of the CISSD Project, including Sharpe, Mayou, Sykes, Kroenke, Levenson, Bradfield, Hiller, de Gucht, giving them a platform for areas where the CISSD Project had failed to achieve consensus and where opinions diverged considerably.

Creed recently published this in his journal:

The Editorial: Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (Journal of Psychosomatic Research: Volume 68, Issue 1, Pages 5-8 January 2010) discusses the deliberations of the EACLPP study group*. The Editorial also includes references to the DSM and ICD revision processes.

* http://meagenda.wordpress.com/2009/05/18/the-elephant-in-the-room-series-two-more-on-mups/
* http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

References to DSM and ICD revision in:


[Extract]

Introduction

The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have “medically unexplained symptoms” or “somatisation” [1]. Part of this document identifies barriers to improved care and it has become apparent that the term “medically unexplained symptoms” is itself a barrier to improved care…

…The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term….The deliberations of the group form the basis of this paper…

[...]

Our priority was to identify a term or terms that would facilitate management – that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists.

Criteria to judge the value of alternative terms for “medically unexplained symptoms”

Ten criteria were developed in order to judge the value of potential terms which might be used to describe the group of symptoms currently referred to as medically unexplained symptoms. Obviously, this list of criteria does not claim to be exhaustive, but we believe that it captures the most important aspects. The criteria are that the term:

1. is acceptable to patients
2. is acceptable and usable by doctors and other health care professionals, making it likely that they will use it in daily practice.
3. does not reinforce unhelpful dualistic thinking.
4. can be used readily in patients who also have pathologically established disease
5. can be adequate as a stand alone diagnosis
6. has a clear core theoretical concept
7. will facilitate the possibility of multi-disciplinary (medical and psychological) treatment
8. has similar meaning in different cultures
9. is neutral with regard to aetiology and pathology
10. has a satisfactory acronym.

(Ed: like C.R.A.P?)

Terms suggested as alternatives for “medically unexplained symptoms”

The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:

1. Medically unexplained symptoms or medically unexplained physical symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder

[...]

Implications for DSM-V and ICD-11

There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV “somatoform” and related disorders. In this working group, similar concerns about the use of the term and concept of “medically unexplained symptoms” have been raised [12]. The current suggestion by the DSM-V work group to use the term “Complex somatic symptom disorder” must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above.

[...]

One major problem for reforming the classification relates to the fact that the DSM system includes only “mental” disorders whereas what we have described above is the necessity of not trying to force these disorders into either a “mental” or “physical” classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.

The solution of “interface disorders”, suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the “physical” classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13].

[End Extract]

It does yer 'ead in, Dr Yes...

 

[Dx Revision Watch]

Icd-10-cm

Until a primary source has been located, this is what Ben had at July 09 in the "Short" version of her ICD document:

[Extract]

ICD-10 CM (USA) (to be used in the US in future, planned implementation 2013)

G00-G99 Diseases of the nervous system (Chapter 6)

G89-G99 Other disorders of the nervous system

G93 Other disorders of brain

G93.3 Postviral fatigue syndrome [note: same as ICD-10]

Benign myalgic encephalomyelitis

Excludes1: chronic fatigue syndrome NOS (R53.82) [note: not in ICD-10]

...

R00-R99 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (Chapter 18)

R50-R69 General symptoms and signs

R53 Malaise and fatigue

R53.8 Other malaise and fatigue

R53.82 Chronic fatigue, unspecified [note: not in ICD-10]

Chronic fatigue syndrome NOS [note: NOS is new; the listing for CFS in ICD-9 does not say NOS ]

Excludes1: postviral fatigue syndrome (G93.3)

There used to be a listing for Chronic fatigue syndrome, post-viral under G93.3 along with PVFS and Benign ME in a previous version of ICD-10 CM (USA). It was removed in 2007, when the new code R53.82 was created for CFS.

[...]


Unfortunately there is currently no classification for M.E. in the Tabular list of ICD-9 used in the US. The closest to a classification of M.E. in ICD-9 is Unspecified cause of encephalitis, myelitis, and encephalomyelitis, which is in practice seldom used. The lack of a listing for M.E. will be rectified in ICD-10 CM (USA) to be used in the US from 2013, which has a classification for M.E. as a neurological disease.

CFS

Unlike ICD-10, the US versions of the ICD are quite clear about the relationship between CFS and M.E.: there is none. Amy Blum, Medical Classification Specialist at the National Center for Health Statistics has stated:

ME is not considered a synonymous term for chronic fatigue syndrome in the United States.

Ms. Blum has also made the following illuminating statement:

...it is not clinically valid to classify all cases of CFS to code G93.3. The default will be R53.82 except in those cases where the cause is determined to be of viral origin.

(email to me, 9 July 2009)

CFS is coded in a completely different category from M.E. in the US. ICD-9, currently used, does not classify M.E. as such, and the nearest equivalent is at 323.9 under Diseases of the nervous system and sense organs while CFS is at 780.71 under Symptoms, signs, and ill-defined conditions.

ICD-10 CM (USA), for use in future, classifies M.E. at G93.3 under Diseases of the nervous system, while CFS is at R53.82 under Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified.

[...]

(On "Benign", Ben writes:)

"The term benign (meaning not fatal) was originally introduced in the context of the WHOs efforts to categorise epidemic diseases, and indicated that a disease did not kill more than a certain percentage of its victims. However, this usage is not consistent throughout the ICD."

[Extracts end]

But please someone do check what the current situation is.

 

[starryeyes]

ME agenda wrote: I'm a carer of a YPWME.

My hat goes off to you ME agenda!! Thank you so much for your tireless work to make things right for all ME/CFS patients in your country and in the U.S.

I'm reading this thread but most of it is flying over my head. I know I don't like the word "benign" in relation to CFS.

tee

 

[Dx Revision Watch]

We have a date for a draft...maybe...

According to this piece published on 11 December:

http://www.medpagetoday.com/Psychiatry/GeneralPsychiatry/17482

DSM-V Publication Pushed Back to 2013
By John Gever, Senior Editor, MedPage Today

Gever was told in a telephone interview by APA President Alan Schatzberg that:

The APA currently plans to post a draft version on the DSM-V Web site - www.dsm5.org - on January 20, 2010. The group will accept comments from the medical community and the general public for two to three months.

Not long then...if the Work Groups have got it together.

 

[RestingInHim]

how big a threat?

i admit i know next to nothing about this. how much sway does the APA and WHO have over the physicians who actually treat us...who have already acknowledged the fact of cfs? isn't that what it comes down to? maybe i'm naive. is it an insurance/coverage issue?

please help me understand...i am brand new to the political issues re: cfs.

thanks!

 

[RestingInHim]

one more thing....

i didn't read the entire thread...don't have the energy right now...so please bear with me.

 

[Dr. Yes]

What It Is (I think)

Hi Suzy - thanks for the info, as usual

Unfortunately I've been completely knackered, as you Brits say; hopefully I'll be better by the time they finally do put a draft out. But if I can't do much, I can easily be replaced eek: that didn't sound good..)

I did (briefly) check the APA link you posted...they don't seem to mention anything helpful about timetables for any of this.

(Incidentally, and FWIW, one thing I noticed was the "Diversity Representation among DSM-V Task Force and Workgroup Nominees", which in terms of gender is 70% male.)

From RestingInHim:

i admit i know next to nothing about this. how much sway does the APA and WHO have over the physicians who actually treat us...who have already acknowledged the fact of cfs? isn't that what it comes down to? ...is it an insurance/coverage issue?

I don't think most of us here stateside know much about this, RIH, and wouldn't even be aware of it if it wasn't for ME Agenda. I've noticed recently on some UK ME organization websites that these issues are prominently featured, but just try and find them on the CAA website or ... well, we don't have too many others to look at!

I can try to answer you here, but I don't know much either so I hope Suzy corrects me wherever I'm wrong...

Yes, 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").

Hope that helps, and that I didn't miss anything major. My brain just went out. I hate this stuff. We shouldn't be the ones to have to figure it out! It would really help if the CAA and/or another organization (?) established a "DSM Watch" and a "WHO watch" on all these issues.

----

btw Suzy:

Criteria to judge the value of alternative terms for “medically unexplained symptoms”...
..3. does not reinforce unhelpful dualistic thinking.
...7. will facilitate the possibility of multi-disciplinary (medical and psychological) treatment...
...10. has a satisfactory acronym.

(Ed: like C.R.A.P?)

That one still gets me, Suzy! You're funny when you're being yer 'elf!

 

[fresh_eyes]

Suzy/MEAgenda alerted me to this fascinating article from the New Scientist about the DSM V revision and the schism it's creating in the psychiatric world. Seems a certain (powerful) contingent is intent on psychologizing almost everything - very interesting to put our situation in context:

http://www.newscientist.com/article/mg20427381.300-psychiatrys-civil-war.html?page=1

ps Dr Yes, fantastic summary above. (In fact, if fact-checker Suzy gives it her OK , I think it should be put somewhere more prominent so that people can get a basic understanding of these issues.) The only thing I'd add is that the situation for ME/CFS in the UK is a case study in how much impact all this could have on our lives - scary.

 

[_Kim_]

ps Dr Yes, fantastic summary above. (In fact, if fact-checker Suzy gives it her OK , I think it should be put somewhere more prominent so that people can get a basic understanding of these issues.) The only thing I'd add is that the situation for ME/CFS in the UK is a case study in how much impact all this could have on our lives - scary.

fresh_eyes - I second your idea about putting Dr. Yes's summary in a more prominent place. Easiest way to do this would be for you to quote him and copy/edit it into your first post here (you are the thread starter). Of course, that's after Suzy-Q gives her approval.

I have tried to understand the implications of this thread on my own, but until Dr. Yes explained it, it wasn't clear how all of these pieces fit together. Thanks to RestingInHim for asking and thanks to Dr. Yes for answering in such easy to understand language.

 

[Dr. Yes]

...The only thing I'd add is that the situation for ME/CFS in the UK is a case study in how much impact all this could have on our lives - scary.

Thanks for pointing that out, freshie. I forgot to mention the extent of the impact this could have on many of us.

If either of the two concerns I raised about the next DSM come to pass, and if CFS remains out of official "disease" categorization (e.g. in G93.3) in the next American ICD, then things could easily get worse for us in the US. Anyone who doesn't have a knowledgeable or sympathetic doctor and is experiencing seriously disabling symptoms (and esp. if they have any psychiatric symptoms like even mild anxiety or depression) could much more easily be labelled as malingerers or hypochondriacs by their insurance plans... At worst, they could be labelled a "danger to themselves" because of unchecked, untreated "somatization"... This could lead to being, as they call it in the UK, "sectioned", or forcibly put into a psych ward for a period of time.. or pediatric cases could be in greater risk of being separated from their families. It has already happened here, and we know it happens much more often in the UK.

That's one major reason why you really need a doctor you can trust, and who trusts you. And why the recent findings on not only XMRV but also Kerr's genetic studies and various others on HHV6 and enteroviruses are SO vitally important right now, and ALL need way, way more funding.

Oh, and that's why we need to prevent the DSM stuff from happening at all costs and get CFS included in G93.3 of the next ICD (or get the CDC and everyone else to rename our disease(s?) ME or PVFS...but the G93.3 thing sounds a bit easier to me!)

----

Now, freshie, I will put the gibbon to bed for a while.

 

[oerganix]

forced incarceration in psych ward...

..."At worst, they could be labelled a "danger to themselves" because of unchecked, untreated "somatization"... This could lead to being, as they call it in the UK, "sectioned", or forcibly put into a psych ward for a period of time..."

This is not beyond imagining. Something similar happened to one of my relatives.

My great uncle was disabled by injuries in WWI, came home to my great aunt, and was cared for with great tenderness and compassion. But she committed the "mental illness" of "promiscuity" by having a sexual affair with another returned soldier who "could". He was regarded as a cad, but not mentally ill, of course. She was forcibly committed to the State mental hospital where, with out anyone giving them permission, she was experimented on with drugs that turned her mind to mush. She spent the rest of her life there, without apparent human consciousness. Her two daughters were placed with my grandparents. Her husband died of his injuries; her placement in the "loony bin" was a family "shame" for two generations.

And we know of at least one young woman suffering from ME basically killed in UK by being forceably "sectioned" there for refusing to to "ME clinic" for graded excercise, etc. The psych lobby is dangerous to the lives and health of anyone suffering from ME/CFS.

 

[Dx Revision Watch]

...hopefully I'll be better by the time they finally do put a draft out.

I hope so.

There is no confirmation on the APA website of the "20 January" date that John Gever, MedPage Today, quotes the APA's President as having disclosed.

http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/Timeline.aspx

Nor is there any confirmation of whether the consultation period is going to be for two months or three months (as the APA President had suggested) and there is no information at all about about the consultation process. Also, unless you have the URL for the PDF of the press release, it is not evident from the DSM-V pages or from the main APA site where the press release has been posted. I usually check the DSM-V pages every few days to see if any updates have been posted but the only reason I knew about the press release was because I "follow" the APA on Twitter. (I imagine the US author of the New Scientist article was already aware of the decision to shift the publication date. Although NS has covered DSM issues in the past, it's a bit of a coincidence that the editor chooses to publish a lengthy article just one day before the APA press release was issued.)

The WHO ICD Revision Steering Group has not responded with any comment on the APA's decision to delay publication. I posted the URL for the APA's press release on the ICD-11 Revision Facebook Wall shortly after the press release was issued. Nothing has been said, there. Since the Geneva iCAMP meeting, the ICD-11 Revision on Twitter, Facebook and the blog have been pretty much silent. Folk aren't going to keep an eye on the site if WHO don't post new stuff on it from time to time.

Dr. Todd Finnerty has the 18th January on his Twitter site.

I can try to answer you here, but I don't know much either so I hope Suzy corrects me wherever I'm wrong...

I will P I will highlight any "iffy" bits in that nasty brownish/puce colour.

Because of the difference in our medical systems; because DSM does not have the same significance in the UK that it has in the US; because in the UK we are using ICD-10 which is being revised to ICD-11, whereas the US is using a version of ICD-9 and anticipating moving on to a "Clinical Modification" of ICD-10 (ICD-10-CM), and because there are currently disparities between the classifications and codings in ICD-10 and the proposed codings for ICD-10-CM for PVFS, ME and Chronic fatigue syndrome, I think this question is much better fielded by a US resident - which is why I've left it for someone else to field.

Yes, 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 would be correct to say that Chronic fatigue syndrome is not included in ICD-10 Volume 1: The Tabular List. But it is included in ICD-10 Volume 3: The Alphabetical Index where it is indexed at G93.3 - same code as PVFS and (Benign) ME.

(Volume 3: The Alphabetical Index is not published by the WHO online. But all three Volumes will be available online for ICD-11 and will integrate with each other. So I think it unlikely that Chronic fatigue syndrome would remain indexed but not be mapped to Volume 1 in ICD-11.)

The Canadian Clinical Modification - ICD-10-CA - is already available online and is dated "2009 version". If it is the case that it is still awaiting implementation, please let me know, because I will be mentioning this Canadian version on my new site, which is being developed at:

http://dxrevisionwatch.wordpress.com

Yes, the Canadian Clinical Modification does have Chronic fatigue syndrome classified under G93.3.

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 diagnostic criteria defined within DSM - the so-called "Psychiatrists' Bible" - determines what is considered a mental health disorder and what is not. As well as being used by clinicians in the mental health field for diagnosing mental disorders, DSM is also used by health insurance companies, health professionals, policy makers, drug regulation agencies, pharmaceutical companies and by researchers.

The next edition of DSM will help shape international research and literature in the fields of psychiatry and psychosomatics for many years to come. The revision process for "Somatoform Disorders" alone has spawned dozens of research and review papers.

In the UK and Europe it is understood that ICD-10 Chapter V (Mental and Behavioural Disorders) is used more frequently than DSM.

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").

There is already a degree of correspondence between DSM-IV and ICD-10 but yes, the APA and the WHO have given a commitment to strive for "harmonization" and congruency - where possible - between DSM-V and Chapter V of ICD-11 (or Chapter 5 as it will be known). This joint commitment is set out in the summaries of all the meetings of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders.

(BTW I am still waiting for a heads up on the publication of a summary of the September meeting of International Advisory Group.)

It is acknowledged by WHO HQ that there will be some categories where it will not be possible to achieve this.

If the DSM-V SDD Work Group proposes a radical overhaul of the section currently known as "Somatoform Disorders" it may be the case that ICD-11 Revision Steering Group would not be able to, or would not want to "harmonize" with this section.

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.

This had been a proposal at June 09.

The conceptual framework the Work Group were proposing, at that point:

…will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.

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).

Yep. But if you skim the back editions of say, Journal of Psychosomatic Research, just about every disease/disorder/condition/syndrome has its liaison psychiatry and psychosomatic professionals' sticky mitts all over it.

My understanding of that June proposal was that "general medical conditions" and the so-called "functional somatic syndromes" would be placed together on one axis (thus blurring distinctions), that the term "medically unexplained symptoms" would be dispensed with, and that everyone would have the potential for an additional diagnosis of "somatic symptom disorder" (or whatever they rename it).

Whether they are still interested in this and whether this could be accommodated by the WHO within the proposed structure for ICD-11 remains to be seen.

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").

Yes. I don't think that the APA would be looking to code for CFS, per se, within the section currently known as "Somatoform Disorders" - and as we have agreed, that would present "harmonization" problems because if CFS remained at G93.3 (or even if it were coded in another chapter of ICD-11) it could not, under present WHO/ICD taxonomy rules also be coded in Chapter V.

So what we need to watch out for, as you rightly identify, is what sneaky backdoor stuff they might be proposing to do with the so-called "medically unexplained illnesses" and "functional somatic syndromes".

...We shouldn't be the ones to have to figure it out! It would really help if the CAA and/or another organization (?) established a "DSM Watch" and a "WHO watch" on all these issues.

If it's any consolation, none of our UK patient orgs are publishing anything around the DSM and ICD revisions, apart from an apologia piece from Action for M.E. around the CISSD Project. (Action for M.E. had been the administrators of the CISSD Project, several of whose influential members now have seats on the DSM SDD Work Group).

Suzy

 

[Dx Revision Watch]

New Years Eve, only four more days and I can take the tinsel off the router.

Wishing everyone better health and better times in the coming year.

Suzy

 

[MEKoan]

New Years Eve, only four more days and I can take the tinsel off the router.

Thanks for the laugh!

And a very Merry/Happy right back atcha!

 

[fresh_eyes]

Thanks, Suzy. Happiness in the New Year to you too. Your work is an inspiration.

My understanding of that June proposal was that "general medical conditions" and the so-called "functional somatic syndromes" would be placed together on one axis (thus blurring distinctions), that the term "medically unexplained symptoms" would be dispensed with, and that everyone would have the potential for an additional diagnosis of "somatic symptom disorder" (or whatever they rename it).

Yes, that's what I took away from the article I linked to, above. For me it sheds new light on *why on earth* people would want to psychologize CFS, when it's so obviously a physical illness. I realize now that a substantial faction wants to psychologize literally every illness, eg Yes, you have cancer, but you also have anxiety disorder. Now take your psych meds. In our case, they can simply say, We believe that you're probably physically ill, but we don't know why, so for now there's nothing to be done on that end. But we do know you're ALSO depressed. Now take your psych meds.

It's positively Orwellian, and I hope nobody thinks I'm becoming a conspiracy theorist, but it dawns on my that that's where the world is headed, if these people have their way. Not just for us with CFS - for everybody.

 

[RestingInHim]

Thanks so much Dr. Yes...not that i pretend to totally get it...but it does make sense. i've never had difficulty with insurance, for which i'm grateful. i don't know what diagnosis my internists puts on my claim. most docs know how to play the insurance game. i've never asked her. but she has confirmed my diagnosis and she has been treating me at least 5 years. i am blessed!

am i naive to think a definitive xmrv test would put an end to this psycho-babble issue?

 

[Dx Revision Watch]

Clinical Modification (ICD-10-CM)

Please visit site for links as I don't have time to strip in the embeded links which will drop out when pasting this.

There are a number of CMs, including US, Canada and Germany and material from these will have fed into the "Start-up" Lists for the various chapters in ICD.

Suzy

--------------------------

http://www.cdc.gov/nchs/icd/icd10cm.htm

Classification of Diseases, Functioning, and Disability

International Classification of Diseases,
Tenth Revision, Clinical Modification (ICD-10-CM)
Note: The 2009 update of ICD-10-CM is now available. It replaces the July 2007 version.

The National Center for Health Statistics (NCHS), the Federal agency responsible for use of the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) in the United States, has developed a clinical modification of the classification for morbidity purposes. The ICD-10 is used to code and classify mortality data from death certificates, having replaced ICD-9 for this purpose as of January 1, 1999. ICD-10-CM is planned as the replacement for ICD-9-CM, volumes 1 and 2.

The ICD-10 is copyrighted by the World Health Organization (WHO), which owns and publishes the classification. WHO has authorized the development of an adaptation of ICD-10 for use in the United States for U.S. government purposes. As agreed, all modifications to the ICD-10 must conform to WHO conventions for the ICD. ICD-10-CM was developed following a thorough evaluation by a Technical Advisory Panel and extensive additional consultation with physician groups, clinical coders, and others to assure clinical accuracy and utility.

The entire draft of the Tabular List of ICD-10-CM, and the preliminary crosswalk between ICD-9-CM and ICD-10-CM were made available on the NCHS website for public comment. The public comment period ran from December 1997 through February 1998. The American Hospital Association and the American Health Information Management Association conducted a field test for ICD-10-CM in the summer of 2003, with a subsequent report [PDF - 1.8 MB]. All comments and suggestions from the open comment period and the field test were reviewed, and additional modifications to ICD-10-CM were made based on these comments and suggestions. Additionally, new concepts have been added to ICD-10-CM based on the established update process for ICD-9-CM (the ICD-9-CM Coordination and Maintenance Committee) and the World Health Organization's ICD-10(the Update and Revision Committee). This represents ICD-9-CM modifications from 2003-2007 and ICD-10 modifications from 2002-2006.

The clinical modification represents a significant improvement over ICD-9-CM and ICD-10. Specific improvements include: the addition of information relevant to ambulatory and managed care encounters; expanded injury codes; the creation of combination diagnosis/symptom codes to reduce the number of codes needed to fully describe a condition; the addition of sixth and seventh characters; incorporation of common 4th and 5th digit subclassifications; laterality; and greater specificity in code assignment. The new structure will allow further expansion than was possible with ICD-9-CM.

An updated 2009 version of ICD-10-CM is now available for public viewing. However, the codes in ICD-10-CM are not currently valid for any purpose or use. There is now an anticipated implementation date for the ICD-10-CM of October 1, 2013. Implementation will be based on the process for adoption of standard under the Health Insurance Portability and Accountability Act of 1996.

On August 22, 2008 HHS published a proposed rule to adopt ICD-10-CM (and ICD-10-PCS) to replace ICD-9-CM in HIPAA transactions. The proposed rule is available at the Federal Register. The comment period for this proposed rule closed October 21, 2008. On January 16, 2009, the final rule on adoption of ICD-10-CM and ICD-10-PCS was published. It specified an anticipated implementation date of October 1, 2013.

Please feel free to contact the individuals listed below with any questions you may have:

Donna Pickett
Phone: (301) 458-4434
E-mail: dfp4@cdc.gov

Amy Blum
Phone: (301) 458-4106
E-mail: alb8@cdc.gov

Those interested in the proposed new procedure coding system, ICD-10-PCS, being developed as a replacement for ICD-9-CM, Volume 3, should see the Centers for Medicare and Medicaid Services' Web site.

We very much appreciate your interest in ICD-10-CM.



2009 update of ICD-10-CM


Note: This update replaces the July 2007 release.

These files linked below are the 2009 update of the ICD-10-CM. Content changes to the Tabular and to the General Equivalence Mapping Files are described in separate files that are included along with the main files compressed in zip format. The index has not had content changes.

These files have been created by the National Center for Health Statistics (NCHS), under authorization by the World Health Organization.

Although this release of ICD-10-CM is now available for public viewing, the codes in ICD-10-CM are not currently valid for any purpose or use. There is now an anticipated implementation date for the ICD-10-CM of October 1, 2013. Updates to this draft are anticipated prior to implementation of ICD-10-CM.

No comments are being sought on the content of ICD-10-CM. Any typographical or other errors noted on this release may be reported to Amy Blum, e-mail alb8@cdc.gov.



New Files
Preface [PDF - 15 KB]
Guidelines
Index
Tabular
General Equivalence Mapping Files

 

[Dx Revision Watch]

Date confirmation

http://pn.psychiatryonline.org/content/45/1/2.1.full

Psychiatric News January 1, 2010
Volume 45 Number 1 Page 2
American Psychiatric Association
Association News

DSM-5 Postponed Until 2013; Field Trials Scheduled for Summer

Jun Yan

"Psychiatrists and the public will be able to view and submit comments on proposed DSM-5 criteria this month and after extensive field trials.

[...]

"Proposed changes to the current diagnostic criteria will be posted on APA's DSM-5 Web site at <www.dsm5.org> for public comments starting on January 20. After an open period of two to three months, feedback will be reviewed and incorporated by the appropriate work groups under the direction of the DSM-5 Task Force. The resulting draft criteria will then be tested in the first phase of field trials, which are set to begin this summer."

[...]

"Data collected in field trials will be analyzed to inform further revisions to the proposed criteria. The public will then have another window of opportunity to comment on the updated draft of DSM-5 criteria."

Full write-up here: http://pn.psychiatryonline.org/content/45/1/2.1.ful l

Copyright 2010 American Psychiatric Association. All rights reserved.

 

[Min]

Is it true please that the UK charity Action for ME gave a sum of money to support this reclassification?