Dx Revision Watch
Senior Member (Voting Rights)
This post has been copied and some subsequent posts moved from
IAFME: International Association for ME
For more up to date information, go to this thread:
Updates on status of ICD-11 and changes to other classification and terminology systems
__________________
Not so simple answer:
First, some declarations:
I have no involvement with Action for M.E.'s advocacy work towards raising the profile of ME, in general, via Geneva or via Member States.
I am not involved in the "International Alliance."
I advise selected international ME organizations, on an ad hoc basis, on developments with the revision of coding, classification and terminology systems and on technical matters associated with these systems.
Since last September, I have worked closely with the Countess of Mar (as a Parliamentarian and as chair of Forward-ME) providing briefing materials, drafting documents and advising, generally, in relation to dialogues that have been established with SNOMED CT International, the UK SNOMED CT National Release Centre, and also with WHO's Director of Information, Evidence and Research and with other WHO leads for the ICD Revision process.
Edited to insert: NB: This arrangement ceased on 7 May, 2018, following a letter from the Countess of Mar terminating this arrangement.
I have had no involvement with the presentation that was given by Dr O'Leary at the 28 March Forward-ME meeting, or with the content of either of the two documents issued by Dr O'Leary in connection with that presentation, or with the statement released by the Countess of Mar in response to the first of those two documents. I cannot support a number of opinions and statements expressed in those documents.
I am currently engaged with another advocate in the production of materials to assist stakeholders in navigating the complexities of the various disease classification and terminology systems and to provide clarity in response to the three documents mentioned above.
Having got these declarations out of the way:
I'm afraid it's not that simple.
In early 2013, ICD Revision (or TAG Neurology) inexplicably removed the three G93.3 legacy terms from the public version of the ICD-11 Beta platform.
Following lobbying by myself in collaboration with selected international advocacy groups, the three terms were restored to the Beta draft, on March 26, 2017 with this caveat:
“While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”
On March 27, 2017, Mary Dimmock and I submitted our own detailed proposals and rationale, which can be found here:
http://bit.ly/ICD11proposal
This proposal remains unprocessed.
The WHO had clarified several times, in 2015, that there was "no proposal and no intention to locate CFS, ME under the Mental and behavioural disorders chapter." In February, this year, WHO's Dr Robert Jakob also stated that they will not "dump CFS in the Signs and Symptoms chapter."
No further proposals were submitted by ICD Revision or on behalf of TAG Neuology, until November 6, 2017.
The TAG for Neurology had ceased operations in October 2016, so responsibility for the G93.3 legacy terms now lies with WHO classification experts, the WHO department for Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and the new Medical Scientific Advisory Committee (MSAC), that will be processing over 1000 outstanding proposals.
On November 6, 2017, WHO's Dr Tarun Dua submitted a new proposal via the Beta draft Proposal Mechanism.
Dr Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and specializes in dementia, epilepsy and some other neurological disorders. She is the former Managing editor and WHO secretariat to TAG Neurology (which as I say, had ceased operations in October 2016).
Her proposal is for Deletion of Postviral fatigue syndrome from the Disorders of the nervous system chapter and relocation of "Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)" [sic] to the Symptom, signs chapter under parent: Symptoms, signs or clinical findings of the musculoskeletal system.
Dr Dua has clarified that the proposal has been submitted on behalf of Topic Advisory Group on Diseases of the Nervous System [TAG Neurology] and that it "reiterates the TAG’s earlier conclusions." Dr Dua would not provide answers to any of the other questions that have been raised with her.
Following an exchange between the Countess of Mar and Dr Dua's line manager, Dr Saxena, on January 29, 2018, "Team WHO" (likely Dr Robert Jakob's Beta admin account) posted a message on the proposal mechanism:
"...Any decisions regarding this entity are on hold until the results of a review become available."
(Part of the remit of TAG groups had been to conduct scientific reviews for specific categories or category blocks, where it was felt these might be required. In February 2017, Dr Jakob had referred to an ongoing "scientific review". A couple of months later, the Written Response to an Australian Senate Question had also stated, "WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.")
WHO's Dr Grove has also reiterated that a systematic review will determine if the [G93.3 legacy] categories need to be moved to any other specific chapter of ICD-11.
And he later clarified:
There has been no confirmation as to whether the "scientific review" was completed in April, and if so, whether any outcomes from that review are now with the MSAC, for their consideration, or how long the MSAC might take to evaluate any potential new recommendations.
So it remains unclear whether, or at what point, ICD Revision might post new proposals on the Proposal Mechanism.
It has not been clarified, either, but we assume that the joint proposal submitted by me and Mary Dimmock, in March 2017, is also "on hold" and that the Dr Dua proposal is similarly "on hold", pending the outcome of the review, and any new proposals potentially arising out of it.
Add to the above uncertainties...
Mary and I are still pressuring for Exclusions for CFS and ME under Bodily distress disorder.
Uncertainty also continues over whether the BSS disorder construct will be approved for the ICD-11 "Primary Care version" (the 27 mental disorder publication that is in preparation)* and if so, which criteria options might be proposed to be taken forward - one of which is for a BDS-like symptom cluster option, another is for a "simpler" criteria set.
*Note: The ICD-11 Primary Care version (27 mental disorders, only, is not a WHO mandatory classification). There is no available date for this publication's projected completion and release.
There is still the issue of the use for ICD-11 of the BDD term which is already in use for the differently conceptualized, BDS disorder construct, developed by Fink et al (2007, 2010).
See:
Why ICD-11 core version's BDD proposal IS VERY problematic for ME and CFS patients, and why exclusions are essential:
https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf
By rights, whatever is in the Beta draft at the point at which the draft is frozen at the end of May 2018, should go forward to the initial release, in June 2018.
But at any point after the initial release, we might potentially find new proposals posted by ICD Revision on the Proposal Mechanism for stakeholder review and comment.
We have asked how long stakeholders would be given to scrutinize and comment on any new proposals posted - but no clear answer has been provided.
The Proposals platform will be remaining open for new proposals from ICD Revision and from public stakeholders, after the initial version of ICD-11 has been released, in June.
So rather than thinking "WHO are already on side" and "the WHOs' position is already favourable to us" my experience with WHO and ICD Revision, since 2010, has been notable for ICD Revision's lack of transparency, for their obfuscation, for their failure to consult with stakeholder groups, for pissing us about for over ten years and still not making decisions, despite the significant body of literature and reports placed at their disposal (since mid 2015) and despite the fact that the initial version of ICD-11 is scheduled for release this June.
Notable also, for their ability to redirect stakeholders' questions to the Proposal Mechanism - then ignoring those questions.
For introducing the SSD-like, BDD into the core edition, when WHO has conducted no field trials specifically testing the safety, validity, reliability, utility, prevalence and acceptability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.
For progressing with a disorder name (Bodily distress disorder) that is already used synonymously with the Fink disorder term "Bodily distress syndrome (BDS)", when researchers and clinicians, including Fink et al, themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs, with very different criteria, which capture different patents sets.
So you must forgive me if I sound somewhat jaundiced and that I cannot agree with you that we are currently in a good place with ICD-11.
By the way, I am given to understand that meetings that took place in Geneva earlier this month were not specifically to discuss matters of coding and classification.
As a result of the documents issued in relation to BSS earlier this month, a significant number of enquiries have had to be fielded with requests for clarifications and I have been extremely burdened with extra work this last three weeks.
So I shall not be around much to add any further comment to this post.
But I should have some concise guides to current classification and coding issues to post here next week.
Suzy Chapman
Dx Revision Watch
IAFME: International Association for ME
For more up to date information, go to this thread:
Updates on status of ICD-11 and changes to other classification and terminology systems
__________________
Not so simple answer:
First, some declarations:
I have no involvement with Action for M.E.'s advocacy work towards raising the profile of ME, in general, via Geneva or via Member States.
I am not involved in the "International Alliance."
I advise selected international ME organizations, on an ad hoc basis, on developments with the revision of coding, classification and terminology systems and on technical matters associated with these systems.
Since last September, I have worked closely with the Countess of Mar (as a Parliamentarian and as chair of Forward-ME) providing briefing materials, drafting documents and advising, generally, in relation to dialogues that have been established with SNOMED CT International, the UK SNOMED CT National Release Centre, and also with WHO's Director of Information, Evidence and Research and with other WHO leads for the ICD Revision process.
Edited to insert: NB: This arrangement ceased on 7 May, 2018, following a letter from the Countess of Mar terminating this arrangement.
I have had no involvement with the presentation that was given by Dr O'Leary at the 28 March Forward-ME meeting, or with the content of either of the two documents issued by Dr O'Leary in connection with that presentation, or with the statement released by the Countess of Mar in response to the first of those two documents. I cannot support a number of opinions and statements expressed in those documents.
I am currently engaged with another advocate in the production of materials to assist stakeholders in navigating the complexities of the various disease classification and terminology systems and to provide clarity in response to the three documents mentioned above.
Having got these declarations out of the way:
I'm afraid it's not that simple.
In early 2013, ICD Revision (or TAG Neurology) inexplicably removed the three G93.3 legacy terms from the public version of the ICD-11 Beta platform.
Following lobbying by myself in collaboration with selected international advocacy groups, the three terms were restored to the Beta draft, on March 26, 2017 with this caveat:
“While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”
On March 27, 2017, Mary Dimmock and I submitted our own detailed proposals and rationale, which can be found here:
http://bit.ly/ICD11proposal
This proposal remains unprocessed.
The WHO had clarified several times, in 2015, that there was "no proposal and no intention to locate CFS, ME under the Mental and behavioural disorders chapter." In February, this year, WHO's Dr Robert Jakob also stated that they will not "dump CFS in the Signs and Symptoms chapter."
No further proposals were submitted by ICD Revision or on behalf of TAG Neuology, until November 6, 2017.
The TAG for Neurology had ceased operations in October 2016, so responsibility for the G93.3 legacy terms now lies with WHO classification experts, the WHO department for Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and the new Medical Scientific Advisory Committee (MSAC), that will be processing over 1000 outstanding proposals.
On November 6, 2017, WHO's Dr Tarun Dua submitted a new proposal via the Beta draft Proposal Mechanism.
Dr Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse and specializes in dementia, epilepsy and some other neurological disorders. She is the former Managing editor and WHO secretariat to TAG Neurology (which as I say, had ceased operations in October 2016).
Her proposal is for Deletion of Postviral fatigue syndrome from the Disorders of the nervous system chapter and relocation of "Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)" [sic] to the Symptom, signs chapter under parent: Symptoms, signs or clinical findings of the musculoskeletal system.
Dr Dua has clarified that the proposal has been submitted on behalf of Topic Advisory Group on Diseases of the Nervous System [TAG Neurology] and that it "reiterates the TAG’s earlier conclusions." Dr Dua would not provide answers to any of the other questions that have been raised with her.
Following an exchange between the Countess of Mar and Dr Dua's line manager, Dr Saxena, on January 29, 2018, "Team WHO" (likely Dr Robert Jakob's Beta admin account) posted a message on the proposal mechanism:
"...Any decisions regarding this entity are on hold until the results of a review become available."
(Part of the remit of TAG groups had been to conduct scientific reviews for specific categories or category blocks, where it was felt these might be required. In February 2017, Dr Jakob had referred to an ongoing "scientific review". A couple of months later, the Written Response to an Australian Senate Question had also stated, "WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.")
WHO's Dr Grove has also reiterated that a systematic review will determine if the [G93.3 legacy] categories need to be moved to any other specific chapter of ICD-11.
And he later clarified:
That the draft ICD-11 will be frozen for finalization at the end of May in preparation for the release of an initial version of ICD-11, in June 2018.
That the scientific review is expected to be completed by mid-April.
That the outcomes of the review will be provided for review by the Medical Scientific Advisory Committee (MSAC).
That the scientific review is expected to be completed by mid-April.
That the outcomes of the review will be provided for review by the Medical Scientific Advisory Committee (MSAC).
That new proposals posted on the platform will become part of the workflows of the maintenance mechanism of ICD-11 and be processed in an annual cycle. Results will be communicated, as soon as the involved committees have agreed on the recommendation on how to go about a specific proposal.
That the current updating cycle foresees a 3 yearly updates to the classification structure, for the first update of ICD-11. Later updates to the classification structure may occur only at 5 yearly rates. Improvements in relation to user guidance, addition of terms or providing clarifications will be supported on an annual base.
That the current updating cycle foresees a 3 yearly updates to the classification structure, for the first update of ICD-11. Later updates to the classification structure may occur only at 5 yearly rates. Improvements in relation to user guidance, addition of terms or providing clarifications will be supported on an annual base.
There has been no confirmation as to whether the "scientific review" was completed in April, and if so, whether any outcomes from that review are now with the MSAC, for their consideration, or how long the MSAC might take to evaluate any potential new recommendations.
So it remains unclear whether, or at what point, ICD Revision might post new proposals on the Proposal Mechanism.
It has not been clarified, either, but we assume that the joint proposal submitted by me and Mary Dimmock, in March 2017, is also "on hold" and that the Dr Dua proposal is similarly "on hold", pending the outcome of the review, and any new proposals potentially arising out of it.
Add to the above uncertainties...
Mary and I are still pressuring for Exclusions for CFS and ME under Bodily distress disorder.
Uncertainty also continues over whether the BSS disorder construct will be approved for the ICD-11 "Primary Care version" (the 27 mental disorder publication that is in preparation)* and if so, which criteria options might be proposed to be taken forward - one of which is for a BDS-like symptom cluster option, another is for a "simpler" criteria set.
*Note: The ICD-11 Primary Care version (27 mental disorders, only, is not a WHO mandatory classification). There is no available date for this publication's projected completion and release.
There is still the issue of the use for ICD-11 of the BDD term which is already in use for the differently conceptualized, BDS disorder construct, developed by Fink et al (2007, 2010).
See:
Why ICD-11 core version's BDD proposal IS VERY problematic for ME and CFS patients, and why exclusions are essential:
https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf
By rights, whatever is in the Beta draft at the point at which the draft is frozen at the end of May 2018, should go forward to the initial release, in June 2018.
But at any point after the initial release, we might potentially find new proposals posted by ICD Revision on the Proposal Mechanism for stakeholder review and comment.
We have asked how long stakeholders would be given to scrutinize and comment on any new proposals posted - but no clear answer has been provided.
The Proposals platform will be remaining open for new proposals from ICD Revision and from public stakeholders, after the initial version of ICD-11 has been released, in June.
So rather than thinking "WHO are already on side" and "the WHOs' position is already favourable to us" my experience with WHO and ICD Revision, since 2010, has been notable for ICD Revision's lack of transparency, for their obfuscation, for their failure to consult with stakeholder groups, for pissing us about for over ten years and still not making decisions, despite the significant body of literature and reports placed at their disposal (since mid 2015) and despite the fact that the initial version of ICD-11 is scheduled for release this June.
Notable also, for their ability to redirect stakeholders' questions to the Proposal Mechanism - then ignoring those questions.
For introducing the SSD-like, BDD into the core edition, when WHO has conducted no field trials specifically testing the safety, validity, reliability, utility, prevalence and acceptability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.
For progressing with a disorder name (Bodily distress disorder) that is already used synonymously with the Fink disorder term "Bodily distress syndrome (BDS)", when researchers and clinicians, including Fink et al, themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs, with very different criteria, which capture different patents sets.
So you must forgive me if I sound somewhat jaundiced and that I cannot agree with you that we are currently in a good place with ICD-11.
By the way, I am given to understand that meetings that took place in Geneva earlier this month were not specifically to discuss matters of coding and classification.
As a result of the documents issued in relation to BSS earlier this month, a significant number of enquiries have had to be fielded with requests for clarifications and I have been extremely burdened with extra work this last three weeks.
So I shall not be around much to add any further comment to this post.
But I should have some concise guides to current classification and coding issues to post here next week.
Suzy Chapman
Dx Revision Watch
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