WHO ME/CFS coding - April to May 2018

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adambeyoncelowe said:
However, as it's her group, she presumably has the right to copy in anyone she wants to?
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You can't found an organization - any organization - even if it's yours alone, and then put logos of other organizations on your site. The owner of the logo (or the organization behind it) has to agree, as a minimum (often there needs to be some sort of contract).

Of course, there's no law against putting strangers into CC; this is a matter of trust. If I observed this was being done - and completely surprising - I'd like clarification at least.

But as Suzy says: It's politics. And that's always dirty.
 
The question which clearly now arises is: What action could Forward-ME take to persuade the informed patient population that it was receiving and acting on best advice in this controversial issue.

I always find the lack of full stops in ME disconcerting.
 
Inara said:
That is good. But it doesn't mean it will stay so, right?
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https://dxrevisionwatch.files.wordpress.com/2018/05/blue-bars-final-4-3.png

Extract:
blue-bars-final-4-3.png


Whatever is in the Beta draft at the point at which the draft is frozen at the end of May should go forward to the initial release in June, though not all chapters may include “Description” texts.

After release, ICD Revision might potentially post new proposals for PVFS, ME and CFS via the Proposal Mechanism, which will remain open for submission of new proposals.

(...)

3 ICD-11 precedence on relocation: General considerations for potential chapter relocations were discussed at a meeting of the Joint Task Force, in July 2016 [2]. According to the meeting Summary Report (5.2 Key discussion), a general principle was reiterated that: “...in the absence of compelling evidence mandating a change, legacy should trump with regard to the question of moving certain conditions to new chapters...JTF members confirmed that continuity over time is desirable. Where there is a rationale for change, the changes can be accommodated for, but there was a question about how to justify the effort required to make the changes in data reporting systems in the absence of compelling information indicating that the change makes things better or more accurate.”

2 Fourth Meeting of the JLMMS Task Force, Queensland, Australia, 11-14 July 2016
http://www.who.int/classifications/icd/revision/2016.07.11-14_iSummaryMeetingReportQueensland.pdf
 
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Dx Revision Watch said:
After release, ICD Revision might potentially post new proposals for PVFS, ME and CFS via the Proposal Mechanism, which will remain open for submission of new proposals.
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That's how I had it in mind - that at this point, it's frozen, but that there's a WHO review process going on, and the results might change the classification, but probably doesn't (due to a desired continuation in classification). Wrong?

What I want to say is "we're not safe" from having ME classified elsewhere at this point - unless, of course, this classification is trully backed up by scientific findings - and that we need people like you, Suzy, who have an eye on this.
 
Inara said:
That's how I had it in mind - that at this point, it's frozen, but that there's a WHO review process going on, and the results might change the classification, but probably doesn't (due to a desired continuation in classification). Wrong?

What I want to say is "we're not safe" from having ME classified elsewhere at this point - unless, of course, this classification is trully backed up by scientific findings - and that we need people like you, Suzy, who have an eye on this.
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No, it's not frozen at this point. The frozen version taken in April was for quality assurance purposes. It is expected to be frozen again at the end of May, in readiness for the initial release in June.

If any new proposals are recommended by the MSAC, later this year, they will be posted in the Proposal Mechanism and become part of the annual maintenance and update schedule (as ICD-10 has been subject to an annual and 3 yearly schedule).

If a decision were made to approve any new proposals, it's unclear when these would be incorporated. Depending on the year in which any new proposals were submitted, possibly late 2019, late 2020, late 2021 etc, if October is going to be the maintenance and update schedule month.

There is currently a backlog of over 1000 unprocessed proposals that the MSAC has inherited and these will also need to be cleared after the initial version has been released.
 
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Dx Revision Watch said:
No it's not frozen at this point. The frozen version taken in April was for quality assurance purposes. It is expected to be frozen again at the end of May in readiness for the initial release in June.

If any new proposals are recommended by the MSAC, later this year, they will be posted in the Proposal Mechanism and become part of the annual maintenance and update schedule (as ICD-10 has been subject to an annual and 3 yearly schedule).

If a decision were made to approve any new proposals, it's unclear when these would be incorporated. Depending on the year in which any new proposals were submitted, possibly late 2019, late 2020, late 2021 etc, if October is going to be the maintenance and update schedule month.

There is currently a backlog of over 1000 unprocessed proposals that the MSAC has inherited and these will also need to be cleared after the initial version has been released.
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Thanks for everything you're doing here. It really is important.
 
Dx Revision Watch said:
It's political. And it's dirty.

I haven't toed the line.
I am not presenting a "united front."
So I have had to be dispensed with.

More to the point: how many of the member orgs are presenting a "united front" and what might the implications be for a "united front"?
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Wow this is nuts. I can totally understand why you want to understand what exactly happened. I’ve only been getting my head round ME politics for a couple of years.
I’m shocked that you’ve been dealt with in this way. It does seem politically driven but it strikes me as very clumsy and ineffective way of dealing with someone who takes a different view or approach.

You have been actively and effectively dealing with WHO issues before Forward ME and the charities even had it on their radar. If you hadn’t been there picking up and challenging we would have been in a very different and worse position.

It seems to me arrogant that they feel they can dispense with your advice in such a disrespectful way. All I can say is I hope you won’t let this put you off continuing to work on these issues as the wider ME community respects your expertise and needs you to keep going.
 
I am now able to clarify:

This action was a personal decision by the Countess of Mar and had not been discussed with the organization reps that make up Forward-ME;

This decision was conveyed in what has been clarified as a personal email (CCd to organization reps that are members of Forward-ME, and to a number of other individuals who are not Forward-ME member organization reps).

Other than these clarifications, it is not my intention to comment further on this topic at this juncture.
 
Amw66 said:
@Action for M.E. can you clarify your stance on revised WHO, SNOMED categorisations and IAPT roll outs in UK?

These are issues that are currently causing significant concern for many who have enough to try and cope with and can benefit from the " direct line" of WHO lobbying. Communication may help allay fears, which given past histories, are not unfounded.
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@Amw66

Re: Classification of the ICD-10 G93.3 terms for the core version of ICD-11 (scheduled for release in June 2018):

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf

Tracking the progress of the ICD-10 G93.3 legacy terms through the initial iCAT, Alpha and Beta drafting platforms, from May 2010 to May 2018.



Re: Listing of Chronic fatigue syndrome and its Synonym terms in SNOMED CT:

Currently listed under

Parents

Clinical finding (finding)

Disease (disorder)

Chronic fatigue syndrome (disorder)
SCTID: 52702003​


From July 31, 2018, expected to be listed under

Parents

Disorder of body system (disorder)

Disorder of nervous system (disorder)

Chronic fatigue syndrome (disorder)
SCTID: 52702003

​

Comparison of Classification and Terminology Systems, May 2018:

https://dxrevisionwatch.files.wordp...fication-and-terminology-systems-may-2018.pdf

This document is provided by Mary Dimmock and Suzy Chapman (DxRevisionWatch.com) to assist stakeholders in navigating the complexities of the disease classification and terminology systems.
 
July 28, 2021:

For the status of coding of PVFS, ME, and CFS in the various editions of the WHO's ICD please see this existing thread:

Updates on status of ICD-11 and changes to other classification and terminology systems

https://www.s4me.info/threads/updat...fication-and-terminology-systems.3912/page-24


For the status of coding of PVFS, ME, and CFS in the forthcoming ICD-11 please see my PDF report:

Updates on status of ICD-11 and changes to other classification and terminology systems, November 2020:

https://www.s4me.info/threads/updat...-classification-and-terminology-systems.3912/
 
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