Who was it that said being in support groups leads to poor outcome?

I haven't been able to find an archived English language edition of WHO's unmodified ICD-8, yet.

But the German DIMDI site has archived facsimile German language versions of ICD-8 Tabular list and Index that can be downloaded as PDFs from very large Zip files:

https://www.dimdi.de/dynamic/de/klassifikationen/downloads/?dir=icd-vorrevisionen

Here is a screenshot from Chapter VI






Again, no inclusion under the code

323 Enzephalitis, Myelitis und Enzephalomyelitis

for Myalgische Enzephalomyelitis or [German translation of Benign] Myalgische Enzephalomyelitis.

Nor can I see any "Myalgische Enzephalomyelitis" in the Index that is indexed to code 323.


OK, this a German language version of ICD-8 but I remain to be convinced that the term "Benign myalgic encephalomyelitis" or "Myalgic encephalomyelitis" was included in ICD-8 at code 323.

Although 323 Encephalitis, myelitis and encephalomyelitis was.

 

http://www.wolfbane.com/icd/icd8.htm - english version - I would agree on what it says, what I have no idea on is how to interpret what "323 Encephalitis, myelitis and encephalomyelitis" actually means - in terms of M.E. - when all of the sources I have access to say this does mean M.E. was included in ICD-8 - maybe that's WHO doctor speak for it, no idea.

It occurs to me that there should be a way of getting a definitive answer, but as that would probably involve speaking to someone, in the WHO, who was involved in 1969, and as far as I am aware the WHO doesn't dain to talk to mortals.......

 

Understood; I'm just keen to have this clarified, since Wikipedia gives no public domain source and MEpedia has relied on Wikipedia, and also provides no public domain source.

On one of the Wikipedia pages for CFS or history of CFS in ICD, I noted that the Hooper document I have quoted from in Post #158 has been used as a reference for another statement. Possibly Wikipedia has relied on that Hooper document for the content of pp. 158, (vol 2, pp. 173) of the ICD-8, since it is so difficult to find a public domain version.

Although I've seen multiple statements across the Internet that "Benign myalgic encephalomyelitis (ME) has been classified in the International Classification of Diseases (ICD) as a neurological disorder since 1969..."

I've yet to see concrete evidence that the term, per se, was included in ICD-8, as opposed to

323 Encephalitis, myelitis and encephalomyelitis

or that it was included as an inclusion term under 323, prior to its ICD-9 listing in the Index (where it was coded to 323.9 Encephalitis of unspecified cause).

I'd be happy to be shown otherwise if anyone happens to have a copy of the unmodified ICD-8 Tabular or Index on file.

 

Oh, WHO does talk to mortals, and I've been talking to them since 2009, but it's like trying to get blood out of a stone, nail jelly to the ceiling, interpret the obfuscation etc.


See:

http://www.centralx.com/diseases/icd295.htm

This is ICD-9 Tabular List and it lists various inclusions under code 323

323 Encephalitis, myelitis, and encephalomyelitis

Includes: acute disseminated encephalomyelitis
meningoencephalitis, except bacterial
meningomyelitis, except bacterial
myelitis (acute):
ascending
transverse
Excludes: bacterial:
meningoencephalitis
meningomyelitis

323.5 Encephalitis following immunization procedures

Encephalitis postimmunization or postvaccinal
Encephalomyelitis postimmunization or postvaccinal
Use additional E code, if desired, to identify vaccine

323.8 Other
323.9 Unspecified cause (this is where BME was indexed to for ICD-9)


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

Here is ICD-10 - the current version for 2015 in which "Encephalitis, myelitis and encephalomyelitis" continues to be listed:

http://apps.who.int/classifications/icd10/browse/2016/en#/G04

G04 Encephalitis, myelitis and encephalomyelitis

Incl.:
acute ascending myelitis
meningoencephalitis
meningomyelitis


Excl.:
benign myalgic encephalomyelitis (G93.3)
encephalopathy:

. NOS (G93.4)
. alcoholic (G31.2)
. toxic (G92)

multiple sclerosis (G35)
myelitis:

. acute transverse (G37.3)
. subacute necrotizing (G37.4)


So BME is specifically excluded from G04 Encephalitis, myelitis and encephalomyelitis in ICD-10 - and has been since at least the 2008 Version, which is here:

http://apps.who.int/classifications/icd10/browse/2008/en#/G04

 

Fascinating. Perhaps you should tweet that, to get the word out in the community.

 

What I still require for confirmation is the English language version of Volume I of the unmodified ICD-8 (a publication that is now 50 years old) and also a copy of the ICD-8 Index. Although terms listed in the Tabular List would be expected to be found in the Index, not all terms in the Index are found in the Tabular List.

The Hooper document (and Wikipedia, who may or may not have relied on the Hooper document) states:

"Benign myalgic encephalomyelitis (ME) has been classified in the International Classification of Diseases (ICD) as a neurological disorder since 1969, when it was included in ICD-8 at Volume I: code 323: page 158 and in Volume II (the Code Index) on page 173. (ICD-8 was approved in 1965 and published in 1969)."​

So according to the above (and according to the Wikipedia reference) the term would be expected to be included in Volume 1 either at code 323 (which is evidently isn't) or listed as an inclusion under 323, and also listed in Volume II The Alphabetical Index, indexed to code 323.


The image in Post #161 from the 1998 German language version appears to be what is now called a "Top level" category list (i.e. it lists the three digit Title terms but not their Inclusions, Exclusions or any four digit sub-category codes).


I've now found the PDFs for the chapter by chapter facsimile of the Tabular List and this is the listing for ICD-8 code 323 (pp 252-3 in this German language version).

Caveat: It's not clear to me to what extent the code sets in this German language version may have been modified before publication or whether it largely mirrored the WHO's ICD-8 English language version.

https://www.dimdi.de/dynamic/de/klassifikationen/downloads/?dir=icd-vorrevisionen


Continued on Page 253



Ausschlüsse (abbreviated to ausschl. for the Tabular List) = Excludes or Exclusions


Enzephalitis:

(...)

postinfektiöse, Erreger unbekannt = Encephalitis: (...) Postinfectious, pathogen (or causative agent) unknown


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

According to the CDC document:

https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf

for the WHO's ICD-9:

"The term "benign myalgic encephalomyelitis" appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome."


It would seem a little odd, to me, if the term "Benign myalgic encephalomyelitis" per se, had already been included in the ICD-8 Tabular List as an inclusion term under code 323 Encephalitis, myelitis and encephalomyelitis, but then for ICD-9, listed only in the Index (where it was indexed to a sub-category of the 323 code, 323.9 Encephalitis of unspecified cause).

 

Apologies for taking the thread somewhat off topic.

I'll update with a clarification when I've obtained copies or scans of the entry for Code 323 in the WHO's English version of ICD-8 Volume I and Volume 2 The Alphabetical Index. I may put a request out on Twitter as I have a number of clinicians and coders who "Follow" me.

 

I note that Leela Play has had a similar problem substantiating the claim made in the Prof Hooper document:



(No longer available at this URL)

Cached page:

http://webcache.googleusercontent.c...on.pdf+&cd=1&hl=en&ct=clnk&gl=uk&client=opera

There is a copy of this Hooper document here (on an Invest in ME page):

http://resime.org/Article 010-Encephalopathy Hooper.htm


So this claim that BME was included in ICD-8 Tabular and Index in 1969 is being frequently reiterated by ME advocates and others, yet there is no documentary evidence that I can find, other than obtaining a copy of the 50 year old print edition of the WHO unmodified ICD-8, that would provide evidence.

Edited to add: See Post #172 for update

 

re: 'Who was it that said being in support groups leads to poor outcome?' - there are some examples that may be of interest in this new chapter from Sharpe:

https://www.s4me.info/threads/chapt...son-psychiatry-third-edition.5347/#post-96079

 

Given the lack of evidence for "50 Years in ICD" I hope that those involved in the Facebook initiative will obtain clarification.

Also, given the current uncertainty over proposals for ICD-11, I wouldn't start celebrating just yet...

I'll clarify if and when I obtain sight of a copy of ICD-8.

Once again, sorry for taking thread OT.

 

In this post, specifically referring to the text written by Authors: Michael C. Sharpe & Patrick G. O'Malley :

https://www.s4me.info/threads/chapt...son-psychiatry-third-edition.5347/#post-96079

The paragraph on "Social factors" answers the question originally put in this thread :



If you actually go and look at the book concerned, you might be able to get the exact references, but I'm having problems viewing it.

I did look for the Bentall reference (but not the others) and found this :

https://www.cambridge.org/core/jour...ue-syndrome/51EA5BB4B2A135D47AB5855C80F209BE#

Predictors of response to treatment for chronic fatigue syndrome

 

The WHO IRIS platform has archived versions of many WHO publications.

From this page:

http://apps.who.int/iris/handle/10665/70934

you can download a PDF of the ICD-8 Tabular List (1967) and a PDF of the ICD-8 Alphabetical Index (1969). There are also files for ICD-9 Tabular (1975) and Index (1978).


ICD-8 Tabular List:

Page 158:





ICD-8 Index (1969)

Page 173:





So "Benign myalgic encephalomyelitis" does appear listed in the ICD-8 Index (1969), indexed to code 323.

But the nearest entries in the ICD-8 Tabular List appear to be

Encephalomyelitis NOS or
Encephalitis NOS

with no "Benign myalgic encephalomyelitis", per se.

(NOS = "Not otherwise specified")

I will let Leela know that the PDFs are obtainable.

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

The PDF files for ICD-9 Tabular and Index are here:

http://apps.who.int/iris/handle/10665/40492

http://apps.who.int/iris/handle/10665/39473


For ICD-9, the CDC document [1] says:

"...The term “benign myalgic encephalomyelitis” appears in the alphabetic index and references code 323.9, Encephalitis of unspecified cause. The code 323.9 did not include reference to postviral syndrome. The term “postviral syndrome” was classified to code 780.7, Malaise and fatigue, in Chapter 16, Symptoms, signs and ill-defined conditions."
​

1 A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards March 2001
https://dxrevisionwatch.files.wordpress.com/2009/12/icd_code-cdc-march-2001.pdf



Edited to add, for completeness:

ICD-9 Tabular List (1975) Page 217:

Again, no specific entry for "Benign myalgic encephalomyelitis" in the ICD-9 Tabular List. But BME is included in the ICD-9 Index, indexed to 323.9 Unspecified cause, which tallies with the information in the CDC document on the indexing of BME in the ICD-9 Index.




ICD-9 Index Page 182:

 

Steadily working my way through. I've now reached the chapter by Susan E. Abbey entitled "Somatization, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome".

I wondered what others would make of this:

This is used as a justification for use of CBT to correct these misattributions. However, it seems at odds with what they say on the previous page with regard to somatization:

She then goes on to say that the downside of this is "learned helplessness", which is what hampers rehabilitation. That, somehow, attribution to a viral cause leads to loss of all control and self-efficacy, and perpetuates avoidance and disability.

But what struck me is that in psychiatry they are often trying to do the opposite. To provide relief from psychiatric symptoms, they try to externalise the condition - to blame it all on something in the past (childhood trauma or whatever). To them, both are essentially memories of past trauma (childhood trauma/viral trauma) - so why is one seen as useful and the other not? It seems that, in CFS, they seem to want patients to internalise, and blame themselves. If externalising is so useful, why are they so keen to abandon it?

There seems to be a strong element of cakeism about much of this material!

 

What I find interesting is that they suggest that the sufferer is to blame for his disease. Since the sufferer doesn't want this blame and guilt (which are right) he "invents" the story of an infectious agent (which is wrong).

Edit: Sorry @Lucibee, I now understand that's what you said.

 

That's one interpretation, but I don't think even they go quite that far. I think they are willing to accept that the viral infection happened (and was not invented as such), and Wessely is certainly prepared to accept that it may even be the trigger, but they attribute all subsequent illness to "maladaptive behaviours" and not to anything pathological persisting from the initial infection (and it may not be from the initial infection - it may be from something before that - but that doesn't really matter).

From talking to all of you (correct me if I'm wrong), I get the strong impression that the reason for your frustration with SW, PW & MS is that you've already been on their theoretical journey and tried and tested it endless times. The most natural assumption to make is that you just need to take things slow and gradually work your way out of it - but that does. not. work. - and they only way to know that, is to live it every single day. Once you get into the clinic with one of these guys, you do what you can to get out of there as quickly as possible, and if that requires "showing some progress", then that's what you do.

I wondered about those poor patients that Wessely saw in the in-patient ward. But I guess it's the same - they probably put on a Herculean effort to "show progress" (faking improvement) so that they could get out of that toxic environment as quickly as they could. But we'll never know.

 

@JaimeS and @chrisb - I think I've tracked it back a bit further.

Wessely et al. (1989) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1711569/] has this:

The conventional view
You are ill with a poorly understood disease. Physical and mental
activity should be limited in an effort to prevent further
deterioration in your condition. Work, housework, childcare and
physical exercise need to be avoided or approached with caution.
An upsurge in symptoms should lead to further rest. This
approach may help limit your symptoms until they resolve or
a treatment becomes available. This is the 'conventional' view
(ME Action Campaign factsheet, 1988).

and

"Many sufferers have been told that 'physical and mental exertion is to be avoided'
(ME Action Campaign factsheet, 1988). This may be correct in some cases, but
there is as yet no way that these cases can be identified."

Now I just need to find that factsheet... I suspect it is referring to the early days of the illness, which would be correct advice.

 

Yes @Lucibee I think that's the one. I found this in the book:

"…….The beneficial effect of rest and deleterious effect of activity is so much a part of the concept of ME that the person who did the most to advance the case for ME in the country wrote that "if some doctors get beneficial effects after exercise then the patients are not suffering from ME. (Ramsey).

What might happen if such advice is not heeded? A self-help book tells sufferers that they must only do "seventy five per cent of what you are capable of...unless you want to plummet down with another relapse soon, you really must follow the rule of doing less than you think you can". (Dawes and Downing)…..The original fact sheets produced by one of the self help groups for ME sufferers stated in bold type "For the majority of ME sufferers physical and mental exertion is to be avoided and adequate rest essential. Important if you have muscle fatigue do not exercise, this could cause a severe relapse" (ME Action Campaign1989) although it is a pleasure to record that the patients organisations them selves now regard such advice as simplistic."

It seems unreasonable to criticise patients groups for following what had effectively been standard advice since Acheson's 1959 paper, but I am not entirely sure that certain parties have read that.

ETA @p286 Coping behaviour

 

Which book?

 

Chronic Fatigue and its Syndromes. Simon Wessely, Matthew Hotopf and Michael Sharpe. OUP 1998.