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ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thank you so much for everything, Suzy! (My English is lacking this morning, please insert witty jokes about villains with frozen hearts and frozen releases and our princess Suzy fighting and shouting "let it go" and a happy ending here. And excuse me if this is too childish.)
You have my permission to be as childish as you like, Joh. I've just ripped off my shoes and socks and thrown a temper tantrum [Ausflippen?]
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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We have a Frozen Release:

(Registration required for access)

http://apps.who.int/classifications/icd11/browse/frozenreleases


http://apps.who.int/classifications/icd11/frozen-2017-04-02/l-m/en

points to a blue coloured version of Beta.

http://apps.who.int/classifications...-m/en#/http://id.who.int/icd/entity/569175314

 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Frozen Release: April 4, 2017:

Fatigue, displaying Exclusions for BME and CFS, as per my proposal submitted on December 30, 2014.

NB: Exclusion for concept title "Postviral fatigue syndrome" was not Approved and Implemented on March 26, when the other two were approved and when the terms were restored to the Beta draft. I have queried this.

 
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No exclusions yet under BDD....(which replaces the somatoform and neurasthenia chapters, it is the new "MUS")

this is how the wessely school is trying to implement MUS/BDD into health care practice. Based on unproven BPS/Cogn Behav. model, and promoting ineffective CBT/GET treatments.
http://www.kcl.ac.uk/ioppn/depts/pm...nar-Slides/Seminar-7/Trudie-Chalder-intro.pdf and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/

If you can please support the Dutch and their petition.
https://meisgeensolk.petities.nl/?locale=en
They really need your signature to stop the BPS/MUS proponents on the health council writing an advisory report on ME that will influence care for ME patients in the next decade (many BPS proponents/Dutch PACE colleagues, including those part of Fitnet UK on the committee).
ME is not MUS/BDD/or whatever term they try to invent and hijack a disease that has already stolen so many lives and futures. ME patients need real care! Care cannot be based on hypothesis or harmful treatments with no evidence base.

Also, I do hope that international biomedical ME experts will stand up and help, declare that ME is not BDD/MUS etc. We cannot do this alone, we need your help!
They can do it by reaction to Beta draft for ICD 11. We need a collecive statement from them
We need this with respect to the true nature of the disease (not BDD/MUS etc) as well as the diagnostic criteria to use in clinical practice and research (can't we at least agree that only those criteria should be used that require PEM as mandatory symptom). We need it soooooon.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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No exclusions yet under BDD....(which replaces the somatoform and neurasthenia chapters, it is the new "MUS")

Exclusions:


My proposal of December 30, 2014 for exclusions under BDD was Rejected on a technicality on November 15, 2016 because at that point, the terms were not in the draft to be linked to.

In order to be included in the Frozen Release of today, April 4, proposals had to be submitted by December 30, 2016.

There was no proposal waiting to be processed for exclusions under BDD at December 30, 2016 as the terms were not in the draft at that date to be linked to. Any proposal prior to the restoration of the terms to the draft would have failed again.

They have, however, included in the Frozen Release, the restoration of the terms (on March 26) and exclusions under Fatigue for BME and CFS (also effected on March 26).


Outstanding proposals for Exclusions:


I got the following proposals in before the March 30 deadline:

Proposal submitted by Chapman S and Dimmock M on March 27, 2017 includes a proposal for reciprocal exclusions for the three ICD-10 G93.3 legacy terms to be inserted for Bodily distress disorder as part of a Complex Hierarchical Changes Proposal [1].

An additional proposal was submitted on March 28, 2017 solely for exclusions for the three ICD-10 G93.3 legacy entities under Bodily distress disorder [2].

An additional proposal was submitted on March 29, 2017 solely for an exclusion under ICD concept title term, Postviral fatigue syndrome, for Bodily distress disorder [3].

All three proposals above met the March 30, 2017 deadline for consideration for inclusion in the finalized version of ICD-11 that is scheduled for release at some point in 2018.


So now that the terms have been restored to the draft, there is no technical reason why exclusions under BDD cannot be implemented. Except that a week or so ago, there were in the region of 800 outstanding proposals to be processed.

Dr Christopher Chute has said that proposals received from January are going to be slow to be processed.

In 2014, Dr Geoffrey Reed wrote me:

"(...) As I understand your concern in relation to Mental and Behavioural Disorders, it is primarily that ME and related conditions be clearly identified as NOT being part of this section of the classification.

"As you know, the placement of these conditions within the broader classification is still unresolved...There has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders...The easiest way to make this absolutely clear will be through the use of exclusion terms. However, I will be unable to ask that exclusion terms be added to relevant Mental and Behavioural Disorders categories (e.g., Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. At such time, I will do that happily.

"I understand your concerns about the Fink et al. construct as it has been articulated by them. You have been very clear about this, and I think your analysis is accurate..."​


1 http://apps.who.int/classifications...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

2 http://apps.who.int/classifications...lGroupId=eb30c64f-dd10-41a2-8edc-f254cf431d73

3 http://apps.who.int/classifications...lGroupId=cf69fa8b-d302-4604-9daa-23c31a7b2c8a
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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So, given that the:

"Deadline in order [for proposals] to be considered for the final version is 30 March 2017."

and given that no new proposals from Topic Advisory Group for Neurology were included in the Frozen Release, today...

..In theory, the location and structure of the terms as they were restored on March 26, should progress to the final version for 2018, unless preference is given, in full or in part, to the proposals submitted by me and Mary on March 27.

(The IACFS/ME submitted an alternative structure on March 31, the day after the deadline was reached.)

Otherwise, any new proposals submitted by TAG Neurology after March 30, would be carried forward for consideration in the context of the first update and maintenance review, at some point in 2019.

Except that:

"Comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017"

There are later deadlines (possibly May 31 and June 30) for the above.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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In November 2016, it was reported in this Dr Robert Jakob presentation that the ICD-11 Foundation has

42,615 entities. My understanding is that SNOMED CT contains in the region of 35K terms.


There are currently over 980 proposals from TAGs and stakeholders sitting in the Proposals Mechanism waiting to be processed that are still marked as:

Submitted
External Review
TAG View
Back To Author
RSG View
WHO
Partially Accepted
Partially Implemented

that is, not yet Implemented or Rejected.

It is the case that many of these will have been submitted by TAG managing editors and chairs and are simple proposals for addition of new terms that will be rapidly Approved and Implemented once reached.

But nevertheless, if ICD Revision intends to process most of this backlog before the end of the year (or any rate those proposals that were submitted prior to the March 30 deadline), the Joint Task Force has its work cut out.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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ICD Revision wanted to place stroke under Diseases of the Circulatory System rather than Diseases of the Nervous System. There has been a big row over this between TAG Neurology and ICD Revision that was reported in the Lancet:

http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(16)31850-5.pdf

in Medscape: http://www.medscape.com/viewarticle/870799

and other medical media:

http://www.healthcare-in-europe.com/en/article/17211-stroke-clearly-is-a-brain-disease.html


Raad Shakir is chair of Topic Advisory Group for Neurology.

The decision of ICD Revision has now been overturned:

http://eso-stroke.org/kategorie-1/b...es-classified-diseases-nervous-system-icd-11/

Breaking News: Cerebrovascular Diseases Classified as Diseases of the Nervous System ICD 11

by ESO | 3.4.2017 |

Raad Shakir and Bo Norrving, ESJ Editor, have received confirmation from the WHO Statistics and Informatics Department responsible for ICD11 of their final decision that cerebrovascular diseases should be placed under Diseases of the Nervous System in the upcoming ICD 11. The decision reverses the erroneous placement of cerebrovascular diseases in Diseases of the Circulatory System held for 62 years since 1955, long felt to be incorrect and of disadvantage for stroke.

The change is visible on the ICD 11 website

Your support and advice during this long process has been most helpful and we are most indebted to you all. We also acknowledge the strong support from the Ministries of Health in Russia, New Zealand, and Austria, as well as welcome input from a vast number of professional and lay societies.

We thank the WHO department of Statistics and Informatics,responsible for ICD11 and our Neurology section in the Mental Health department, for their collaboration on the work on the ICD 11.

Prof Bo Norrving
Member Neurosciences TAG
Chair Cerebrovascular Diseases Group ICD 11
Past President World Stroke Organization

Prof Raad Shakir FRCP
Chair Neurosciences TAG ICD11
President World Federation of Neurology
-----------------------------------

"...as well as welcome input from a vast number of professional and lay societies"

Mmmm.
 

SamanthaJ

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Frozen Release: April 4, 2017:

Fatigue, displaying Exclusions for BME and CFS, as per my proposal submitted on December 30, 2014.

NB: Exclusion for concept title "Postviral fatigue syndrome" was not Approved and Implemented on March 26, when the other two were approved and when the terms were restored to the Beta draft. I have queried this.

I'm not 100% sure I'm understanding this correctly, but this is mostly good news so far, isn't it? That 'BME' and 'CFS' are still a disease and not under 'Symptoms and signs'? Apologies if I've got the wrong end of the stick, I just about get the gist of this stuff, and am so in awe of you for being able to make sense of it and hold these guys to account!
Edit: Quoted the wrong post, meant to quote the previous post showing ME, CFS and PVFS under diseases of the nervous system.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Hi SamanthaJ

I'll do a numbered run down, below, of the key points on how things stand at the moment and will simplify as much as I can and use "traffic light" colours.

1 On March 26, the three terms were finally restored to the public version of the Beta draft, after a four year absence. This is good, as it means stakeholders can now comment on the listings and propose changes or additions to the listings, as they currently stand, which we have not been able to do for four years.

2 The three terms were restored to the draft with a caveat: that while the work group are still deliberating the optimal place in the classification, the terms have been put back to their original place in the draft. Not so good, as it means the work group still hasn't reached consensus; we still don't know what they might propose for these terms between now and the end of the year, when ICD-11 will need to be finalized.

3 The terms were put back under the Neurology chapter, under the parent class, "Other diseases of the nervous system." This is good and we also have separate confirmation that there is no intention to classify the terms under the Mental or behavioural disorders chapter. Dr Jakob also wrote to me, "...chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms.’ But that does not clarify whether the work group might possibly be considering classifying PVFS under Symptoms, signs, separately from CFS and BME.

4 The terms were put back with PVFS as the lead term, with BME and CFS both coded under the PVFS code. This puts the relationship between the terms back to how they stand in ICD-10 but also brings CFS (which was an index only term in ICD-10) into the ICD-11 equivalent of the Tabular List. Not so good for those of us who consider that PVFS is not an appropriate lead term for ME to sit under. Not so good for those of us who would like to see separate codes for ME and CFS.


5 Exclusions under Fatigue: On March 26, they approved my 2014 request for exclusions under Fatigue for BME and CFS. This is good, but they still haven't approved my request for an exclusion for PVFS under Fatigue and I am in the process of trying to establish why.


6 Exclusions under BDD: They have not yet inserted exclusions for the three terms under Bodily distress disorder. This is not good, but I submitted new proposals for reciprocal exclusions for BDD before the March 30 proposal deadline, in the proposal with Mary and also in separate proposals.

7 They are still using the term "benign." This is not good, but I submitted a proposal for "benign" to be dropped before the March 30 proposals deadline, in the proposal with Mary and also in a separate proposal.

8 I was told in an email from Dr Christopher Chute (who is a member of the ICD-11 Joint Task Force) on February 22, that "Evidently, there are plans to include these terms as index entries." Not good, if this is correct and Chute may have misunderstood and misreported, as he is not involved with these categories. ICD Revision has been asked to clarify what Chute meant by this but has provided no clarification.

9 The Frozen Release posted yesterday (the blue coloured Beta), for use by the centres that are testing the utility of the Beta draft, contained all three terms and the two exclusions under Fatigue and had no new proposals for us to challenge. So that is good.


10 The proposal and rationale that Mary and I collaborated on was submitted before March 30. Our proposals met the proposals deadline and should be considered for inclusion in the final version of ICD-11 that is scheduled for release at some point after May 2018.


PDF of slightly tidied up version of above: http://bit.ly/2oD51DA
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The proposal and rationale that Mary and I collaborated on was submitted on March 27. We began informing international patient and advocacy organizations on Thursday, March 30.

So far 53 "Agrees" are displaying. I am told that the counter appears unstable.

There have also been 53 comments left, the majority by patient, carer and advocate stakeholders. We are very grateful to all of you who are taking the time to review and comment our proposal.

108 at 06/04/17
147 at 07/04/17
174 at 08/04/17

192 at 10/04/17


These are the international organizations that have commented so far in support of the proposal: I will update this post as more are published.

UK

The Devon ME Support Group


USA


Open Medicine Foundation, Linda Tannenbaum
PANDORA Org


Canada


The National ME/FM Action Network (Canada), President
ME/FM Society of BC, Canada, Board member


EU


RME The Swedish Association for ME, Chair
Norges Myalgisk Encefalopati Forening - The Norwegian ME association, Secretary General
The Belgian ME Association, Chair
The European ME Alliance (EMEA), Chair on behalf of 13 members
The Danish ME Association, Vice Chairman
Groep ME Den Haag (Netherlands)
The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland


Australia

ME/CFS Australia (SA), President


New Zealand


NZMEAction, New Zealand, Boardmember


International

Race to Solve ME/CFS (FB group)
 
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Molly98

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Hi SamanthaJ

I'll do a numbered run down, below, of the key points on how things stand at the moment and will simplify as much as I can and use "traffic light" colours.

1 On March 26, the three terms were finally restored to the public version of the Beta draft, after a four year absence. This is good, as it means stakeholders can now comment on the listings and propose changes or additions to the listings, as they currently stand, which we have not been able to do for four years.

2 The three terms were restored to the draft with a caveat: that while the work group are still deliberating the optimal place in the classification, the terms have been put back to their original place in the draft. Not so good, as it means the work group still hasn't reached consensus; we still don't know what they might propose for these terms between now and the end of the year, when ICD-11 will need to be finalized.

3 The terms were put back under the Neurology chapter, under the parent class, "Other diseases of the nervous system." This is good and we also have separate confirmation that there is no intention to classify the terms under the Mental or behavioural disorders chapter. Dr Jakob also wrote to me, "...chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms.’ But that does not clarify whether the work group might possibly be considering classifying PVFS under Symptoms, signs, separately from CFS and BME.

4 The terms were put back with PVFS as the lead term, with BME and CFS both coded under the PVFS code. This puts the relationship between the terms back to how they stand in ICD-10 but also brings CFS (an index only term in ICD-10) into the the ICD-11 equivalent of the Tabular List. Not so good for those of us who consider that PVFS is not an appropriate lead term for ME to sit under. Not so good for those of us who would like to see separate codes for ME and CFS.


5 Exclusions under Fatigue: On March 26, they approved my 2014 request for exclusions under Fatigue for BME and CFS. This is good, but they still haven't approved my request for an exclusion for PVFS under Fatigue and I am in the process of trying to establish why.


6 Exclusions under BDD: They have not yet inserted exclusions for the three terms under Bodily distress disorder. This is not good, but I submitted new proposals for reciprocal exclusions for BDD before the March 30 proposal deadline, in the proposal with Mary and as separate proposals.

7 They are still using the term "benign." This is not good, but I submitted a proposal for "benign" to be dropped before the March 30 proposals deadline, in the proposal with Mary and as a separate proposal.

8 I was told in an email from Dr Christopher Chute (who is a member of the ICD-11 Joint Task Force) on February 22, that "Evidently, there are plans to include these terms as index entries." Not good, if this is correct and Chute may have misunderstood and misreported, as he is not involved with these categories. ICD Revision has been asked to clarify what Chute meant by this but has provided no clarification.

9 The Frozen Release posted yesterday (the blue coloured Beta,) for use by the centres that are testing the utility of the Beta draft, contained the terms and the two exclusions under Fatigue and had no new proposals for us to challenge. So that is good.


10 The proposal and rationale that Mary and I collaborated on was submitted before the March 30. Our proposals met the proposals deadline and should be considered for inclusion in the final version of ICD-11 that is scheduled for release at some point after May 2018.
Thank you for taking the time and trouble to do this Suzy, putting it in this format with colour coding and spelling out whether good or not good has helped me enormously where previously my ME brain would just draw a blank when trying to make sense of it all.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thank you for taking the time and trouble to do this Suzy, putting it in this format with colour coding and spelling out whether good or not good has helped me enormously where previously my ME brain would just draw a blank when trying to make sense of it all.
I'm pleased it's helped, Molly. I just wish there were more green bits.
 

SamanthaJ

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Thank you so much for taking the time to explain this so clearly, Suzy, and for all your incredible work on this. It's frightening that decisions with an impact on so many people can be made in such an opaque and complicated way. We can only guess what would happen without people like you and Mary.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thank you so much for taking the time to explain this so clearly, Suzy, and for all your incredible work on this. It's frightening that decisions with an impact on so many people can be made in such an opaque and complicated way. We can only guess what would happen without people like you and Mary.
Thank you for your very kinds words, Samantha. I'm glad it's helped.

And you are correct - the ICD revision process has been promoted as an open and transparent process designed for professional and lay stakeholder participation. But for these three terms, we have had to fight for transparency for over four years and we still don't have full transparency, and during that four year period, professional and lay stakeholders have been disenfranchised from scrutiny and input into the process - and that is not at all acceptable.

The revision process launched in 2007 - ten years later we are still being thrown crumbs of information and what we are told has often been meaningless and has required time and energy being expended in an effort to disentangle. None of this should have been necessary.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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On Twitlonger at: http://tl.gd/n_1spot9g

Key links for Suzy Chapman and Mary Dimmock's Proposal for the ICD-10 G93.3 legacy terms for ICD-11


For a PDF copy of our Proposal and Rationale go here: http://bit.ly/2mQxWTS

To view or comment on our proposal in the ICD-11 Beta draft Proposal Mechanism go here (registration required to view/comment): http://bit.ly/2n8I9qc

You will find the Beta registration page here: http://bit.ly/2n7Kdj4


Two Summary posts on Dx Revision Watch site:


A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two: http://wp.me/pKrrB-4eH

and for background to the G93.3 and ICD-11 proposal issue:

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One: http://wp.me/pKrrB-4dV


PDF of Key Points on how the Beta stands since March 26: http://bit.ly/2oD51DA
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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The PDF at the end of this post contains a partial transcript of Prof Peter White's presentation at the Royal Society of Medicine CFS Conference, London, April 28, 2008.

This partial transcript is an unofficial transcript prepared by me, in 2009, for use in a legal case. It transcribes the first 6:55 minutes and the closing minutes of Prof White's presentation. It also includes a URL to a video of the full presentation on YouTube.

It is of topical interest, as Prof White is discussing his views on the utility of what he calls the ICD-10 "criteria" for ME and CFS. Note that in ICD-10, there are no criteria for ME and CFS - the classification only lists terms.

After running through a list of possible terms that he claims one might pick from in ICD-10, he concludes:

"So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing."


Note that Prof White lists the following terms in the context of ICD-10:

"Chronic fatigue syndrome (postviral)"​

This term is not included in the WHO's ICD-10.

It was a term that had been included in the 2003 consultation release of the draft for the U.S. specific, ICD-10-CM. (The final ICD-10-CM was not implemented until October 2015.)

That term had appeared in the 2003 release of the draft ICD-10-CM as:

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome, postviral
Excludes1:chronic fatigue syndrome NOS (R53.82)

and under the R codes, as:

R53.82 Chronic fatigue, unspecified
Chronic fatigue syndrome NOS
Excludes1: postviral chronic fatigue (G93.3)
postviral fatigue syndrome (G93.3)​

A copy of this 2003 release of the draft of the U.S. specific, ICD-10-CM Tabular List, can be downloaded from my site, here. (It's a large file and may take a while to download):

https://dxrevisionwatch.files.wordpress.com/2015/03/icd-10-cm-draft-2003.pdf

No further draft was released until 2007. In 2007, the inclusion term "Chronic fatigue syndrome, postviral" had been removed by NCHS/CDC, from under the G93.3 code.

The "Excludes1: postviral chronic fatigue (G93.3)" had also been removed from under the R53.82 listing, leaving only the one inclusion term under the G93.3 code:

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Excludes1: chronic fatigue syndrome NOS (R53.82)

and only the one Excludes1 under the R53.82 code:

R53.82 Chronic fatigue, unspecified
Chronic fatigue syndrome NOS
Excludes1: postviral fatigue syndrome (G93.3)​


So, although Peter White asserted in 2008 that one might consider (among a number of other terms) using the ICD-10 term,"Chronic fatigue syndrome (postviral)", that term does not exist in WHO's ICD-10, nor did it exist in the U.S. specific draft of ICD-10-CM by the time the 2007 release was published.

So that was a red herring.

A copy of the 2007 release of the draft ICD-10-CM Tabular List can be downloaded from my site, here:

https://dxrevisionwatch.files.wordpress.com/2015/03/2007-tabular-list-release.pdf


Prof White also states in his RSM presentation that the following two ICD-10 terms might be considered for use for ME and CFS:

"Chronic fatigue, unspecified"

"Chronic fatigue syndrome NOS"​

Neither of these terms appear in the ICD-10 Tabular List, in 2008 (and they do not come up as Index terms using the browser for ICD-10 Version: 2008). Again, the two terms are exclusive to the U.S. specific, ICD-10-CM, which was still in draft, in 2008.

(There is no "chronic fatigue" anyway in ICD-10; only a "Fatigue syndrome", listed as an inclusion under F48.0 Neurasthenia.)


He then lists the following ICD-10 historical terms:

"Effort syndrome"

I can find no "Effort syndrome" as an tabular list entity in WHO's ICD-10 Tabular List for 2008 nor identified as an entity in the Index, but a search for "Effort syndrome" pulls up Neurasthenia.

"Effort syndrome" is a term I was amused to see Prof Sir David Goldberg's PCCG work group still using, in 2013, on Page 12 of the Master Protocol for the field trials for the Primary Care version of ICD-11 for field testing Goldberg's proposed "Bodily Stress Syndrome (BSS)" diagnosis - which was an adaptation of Fink et al (2010) Bodily distress syndrome:

Depression, Anxiety and Somatic Symptoms in Global Primary Care Settings: A Field Study for the ICD-11-PHC RPC 565 Version 2, 8/4/2013

in which it states: "Patients with conditions such as fibromyalgia, irritable bowel syndrome and effort syndrome ARE eligible for this part of the study, as are patients without any such label for their symptoms."


"Da Costa syndrome"

and

"Neurocirculatory asthenia"

In the 2008 release for ICD-10 Tabular List, "Da Costa's syndrome" and "Neurocirculatory asthenia" are listed as inclusion terms under

F45.3 Somatoform autonomic dysfunction

So I'll allow him those two terms - though I very much doubt that any of these three terms were being used to any great extent in clinical settings, in 2008, and hardly worth mentioning.

So, rather a lot of scraping of the bottom of barrels in order to pad out his list of "multiple terms" for CFS and ME in ICD-10.


Here is my partial transcript:

https://dxrevisionwatch.files.wordpress.com/2017/04/peter-white-rsm-20082.pdf

http://bit.ly/2oc24s0

and here is the YouTube of the full presentation:


 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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A few years ago, Prof White published an editorial calling for the ICD chapters for Diseases of the nervous system and [what will be known in ICD-11 as] Mental, behavioural or neurodevelopmental disorders to be combined for ICD-11.

He didn't get very far with that.

Note also, in the transcript, at 25:45, Prof White refers to a Royal Society of Medicine conference of thirty years ago. This is the 1978 Royal Society of Medicine symposium that Mary and I referenced in our proposal for the G93.3 terms at:

Note 2: Deprecation of "benign (on Page 5 of the Proposal and Rationale PDF)

"...In 1978, an international symposium was held at the Royal Society of Medicine to discuss the disease and future research directions. A British Medical Journal editorial reported there had been clear agreement that myalgic encephalomyelitis was a distinct, organic, nosological entity and that dismissal of the disease as psychological was no longer tenable. Attendees discussed the variety of physical findings, in both epidemic and sporadic cases, and described the characteristic feature of post effort exhaustion and fatigability. There was agreement that future outbreaks should be studied by a collaborative team of neurologists, epidemiologists, virologists, and immunologists and that findings would also be important for other neurological disorders, including multiple sclerosis. Attendees considered other terms used to describe the disease but rejected these as unsatisfactory. They agreed on "myalgic encephalomyelitis," omitting the prefix "benign" in response to the high burden of morbidity associated with the disease and because the term "benign" was misleading from the patient's perspective, "since the illness may be devastating" [3][4]."