That's... a really awful description. I had no idea people were trying to say everyone with FM had to be depressed, anxious, or angry. It certainly seems to me that these are natural reactions to a) being in constant pain and b) being constantly dismissed/belittled for it.
Back again to this idea that well people have no idea what emotionally healthy reactions are to being chronically ill.
@JaimeS and @
DigitalDrifter
Although I've monitored and reported on the change of parent and chapter location for
Fibromyalgia since the change was entered into the Beta draft in 2015 as part of my general monitoring of proposed changes for ICD-11,
Fibromyalgia isn't within my scope of advocacy interest.
I have read some of Frederick Wolfe et al's papers on FM criteria and also his paper on DSM-5 and the percentage of FM patients the authors consider may be captured by SSD [1].
But I don't know whether the 2010 FM criteria have been internationally accepted.
Where criteria exist, Description texts for ICD-11 do sometimes include criteria in addition to a general disorder/disease description text, if there is international consensus for a criteria set or a revised criteria set. (Though the
IASP Chronic Pain Task Force has also been drafting criteria of its own for some of these new
Chronic primary pain categories.)
The Beta draft category listing for FM had been deleted from the
Diseases of the musculoskeletal system and connective tissue chapter and relocated under
Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified on May 5, 2015. (There used to be
History and
Change Note pages available for the ICD-11 Beta draft, so changes could be more easily tracked.)
Some of the categories listed under the new
Chronic pain section were originally proposed to be secondary parented to other chapters. But when
Fibromyalgia was relocated to the
Symptoms, signs chapter, there was
no proposed secondary parenting to its original chapter location:
Diseases of the musculoskeletal system and connective tissue chapter.
The Description text for
Fibromyalgia does not appear to have been revised from how the text had stood prior to its chapter relocation in May 2015.
When ICD-11 was in the initial "Start-up phase", followed by the Alpha drafting phase, the text fields for tentative draft Description texts (then known as "Definitions") and other content parameters had been populated by WHO/ICD-11 development and working groups from a variety of sources - from content in other classification systems and from the websites of leading health agencies etc.
I traced the source for the text for FM
as it stood in 2015 and the most likely source was text that had stood on an
Orphanet page, which had apparently last been updated in May 2007, but which appended links to more recent criteria and practice guidelines (these FM description texts appear to have been removed from the Orphanet site since I noted these, in 2015).
Orphanet were charged by ICD Revision to provide content for rare diseases for the ICD-11 "Start-up", Alpha and Beta drafting phases, but also provided initial content for some disorders/diseases that aren't considered rare.
For many of the 55,000 categories in ICD-11, their Description content text will have gone through several iterations, during the 11 year long development process, with ICD Revision working groups, professional bodies and clinician and lay stakeholders submitting suggestions for edits, which if approved will have been incorporated into the draft.
But this screenshot of the Beta draft that I took in mid 2015, shows that the text hasn't been revised (though the name of the proposed parent class has undergone revision):
https://dxrevisionwatch.files.wordpress.com/2015/08/fibro2208152.png
It's unclear whether the ICD-11
Musculoskeletal Topic Advisory Group retained any oversight for the classification of FM once the decision to relocate FM to the new
Chronic pain section had been approved by ICD Revision, or whether responsibility for FM now lay solely with the
IASP Task Force. So the opinions of the
Musculoskeletal Topic Advisory Group on FM's relocation aren't known.
But FM's revised classification for ICD-11 does appear to have been neglected by stakeholders.
As I say, I had brought the following to the attention of several FM advocacy groups:
the 2015 relocation of FM from the Diseases of the musculoskeletal system and connective tissue chapter to the Symptoms, signs chapter:
the proposed parenting of FM under the new Chronic primary pain category section, under Chronic widespread pain;
that FM had lost its unique ICD code and was now proposed to be rolled up as an inclusion term under Chronic widespread pain;
that the term "Fibromyalgia" was now listed only in the ICD-11 Foundation Component and not in the MMS Linearization;
that the Description text had not been revised since it was initially drafted;
how to find the proposed Descriptions texts and criteria for these new categories.
But no new proposals or suggestions for revised content or comments on the existing Description text and content have been submitted in the name of any FM advocacy org, or professional body.
And whilst I have assisted several other non ME patient groups and clinician stakeholders to navigate the Proposal Mechanism and advised on formatting proposals and the requirement for including rationales and citing an evidence base in support of proposals, FM is not my area of interest and I have no mandate to submit proposals or suggestions for changes to the existing content.
Additionally, just as there is political division amongst ME patients and advocates over whether
Chronic fatigue syndrome should remain under the R codes for ICD-10-CM or be restored under the G93.3 parent, in line with the WHO's ICD-10, there is political division amongst FM stakeholders and advocacy groups over how FM should be defined and whether the name for FM should be deprecated and replaced with "Chronic widespread pain." Some patients who have welcomed the change may not have not familiarised themselves with the conceptualisation of ICD-11's new
Chronic pain and
Chronic primary pain categories.
References:
1 Symptoms, the Nature of Fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) Defined Mental Illness in Patients with Rheumatoid Arthritis and Fibromyalgia Frederick Wolfe, Brian T. Walitt, Robert S. Katz, Winfried Häuse
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0088740
