Discussion in 'Fibromyalgia and Connective Tissue Disorders' started by Melanie, Jul 21, 2018.
ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain
More BPS nonsense.
This is not good. This is a step backwards. Darn.
Maybe it's time to get FM organizations into the boat? It's not an exception that people with ME have FM also, which makes the step to MUS or BDD or whatever even smaller with this codifier. Also I fear this could be a herald for ME in some revised future version of ICD-11.
This is a lot of work as we know from @Dx Revision Watch.
Several FM organizations have been advised, in the past, (most recently last year) that FM has been relocated for ICD-11.
They were given information about how to submit comments and given links for the IASP Work Group's 2015 position paper.
No action was taken by them.
The relocation of FM under the new Chronic primary pain category block in the Symptoms, signs chapter took place in 2015 - there has been time for FM orgs to challenge this.
You can lead a horse to water...
Huh. Do you know why FM organizations didn't take action? How weird.
Maybe they don't care? Or maybe we need to look at where they get funded? It's possible there are some vested interests there.
I don't know why.
Two or three FM org reps were very interested, last year, to receive information. But there was no follow up (at least not via the Proposal Mechanism).
The IASP Task Force is an NGO that works closely with WHO/ICD Revision.
Rolf-Detlef Treede and Winfried Rief (Germany) are key players and Dr Michael First (U.S.) is also involved with the working group. Dr. First is an editorial and coding consultant for the DSM-5, and has served as a technical and editorial consultant for ICD-11's Mental and behavioural disorders chapter. This new Chronic pain category block has the blessing of WHO/ICD Revision.
The relocation of FM to the Symptoms, signs chapter, under the new Chronic primary pain parent block took place on May 5, 2015.
I reported on it here, in August 2015:
Proposals for the classification of Chronic pain in ICD-11: Part 1
and in Part 2, here
in which I later noted:
"Since these proposed changes for Fibromyalgia were published on the ICD-11 Beta draft, in 2015, not a single comment has been posted via the ICD-11 Comment or Proposals mechanisms from stakeholder patient organizations, the clinicians who advise them, allied health professionals or disability lawyers."
The IASP working group's position paper  had proposed to locate irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain; fibromyalgia, and potentially some other conditions where chronic pain is a feature, under this new Chronic primary pain block.
Their proposal to relocate IBS under the new Chronic pain block was rejected by ICD Revision. More recently the IASP submitted for secondary parenting of IBS to the Chronic pain block. This proposal has not yet been processed.
Note that the Chronic pain categories have undergone numerous revisions since the IASP published their position paper, in 2015. Therefore the proposed terms and block structure in my two posts above from August 2015 have been superseded and reference should be made to the orange Maintenance Platform and to the blue ICD-11 MMS Release for 2018 for current status.
1 A classification of chronic pain for ICD-11. (Open Access)
Treede, Rolf-Detlefa; Rief, Winfriedb; Barke, Antoniab,*; Aziz, Qasimc; Bennett, Michael I.d; Benoliel, Rafaele; Cohen, Miltonf; Evers, Stefang; Finnerup, Nanna B.h; First, Michael B.i; Giamberardino, Maria Adelej; Kaasa, Steink; Kosek, Eval; Lavand'homme, Patriciam; Nicholas, Michaeln; Perrot, Sergeo; Scholz, Joachimp; Schug, Stephanq; Smith, Blair H.r; Svensson, Peters,t; Vlaeyen, Johan W.S.u,v; Wang, Shuu-Jiunw
PAIN: June 2015 - Volume 156 - Issue 6 - p 1003–1007
It was Winfried Rief who had published this presentation in 2012:
IASP and the Classification of Pain in ICD-11
(Note Slides 13-17.)
The IASP's Antonia Barke, who uploads proposals to the ICD-11 Proposal Mechanism on behalf of the IASP Task Force, suggested last year (though did not submit a formal proposal) that BDD should be secondary parented to Chronic primary pain.
This has not been agreed by ICD Revision. But BDD and Chronic primary pain are very similarly characterized:
Chronic primary pain
Chronic primary pain is chronic pain in one or more anatomical regions that is characterized by significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles). Chronic primary pain is multifactorial: biological, psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate independently of identified biological or psychological contributors unless another diagnosis would better account for the presenting symptoms. Other chronic pain diagnoses to be considered are chronic cancer-related pain, chronic postsurgical or posttraumatic pain, chronic neuropathic pain, chronic secondary headache or orofacial pain, chronic secondary visceral pain and chronic secondary musculoskeletal pain.
Chronic primary pain is chronic pain in one or more anatomical regions that is characterized by significant emotional distress (anxiety, anger/frustration or depressed mood) or functional disability (interference in daily life activities and reduced participation in social roles). Chronic primary pain is multifactorial: biological psychological and social factors contribute to the pain syndrome. The diagnosis is appropriate independently of identified biological or psychological contributors unless another diagnosis would better account for the presenting symptoms. Other chronic pain diagnoses to be considered are chronic cancer-related pain, chronic postsurgical or posttraumatic pain, chronic neuropathic pain, chronic secondary headache or orofacial pain, chronic secondary visceral pain and chronic secondary musculoskeletal pain. Patients with chronic primary pain often report increased depressed  and anxious  mood, as well as anger  and frustration . In addition, the pain significantly interferes with daily life activities and participation in social roles . Chronic primary pain is a frequent condition, and treatment should be geared towards the reduction of pain-related distress and disability [e.g. 6].
Conditions A to C are fulfilled:
A. Chronic pain (persistent or recurrent for longer than 3 months) is present
B. The pain is associated with at least one of the following:
B.1 Emotional distress due to pain is present.
B.2 The pain interferes with daily life activities and social participation.
C. The pain is not better accounted for by another chronic pain condition.
The presence of pain and emotional distress or interference in daily activities due to pain should be established based on a thorough assessment procedure using standardized measures.
Acute pain ⇒
Oh no THAT one...
I am definitely not informed enough.
What can we do to get someone who is as well informed and engaged as you Suzy about ICD stuff? This is so important. It will take decades to get FM removed from the symptoms&signs chapter. It makes me angry that some d***heads propagate their psychiatric-BPS-psycho crap, which obviously leads to suffering. And no orgs to counter that.
In the unmodified ICD-10, there is a category:
F45.4 Persistent somatoform pain disorder
In Rief's 2012 presentation he mentions:
"How to revise the pain diagnoses in the ICD-11 proposal?
"Local improvements of criteria for pain diagnoses
"Chronic pain with psychological and somatic factors; F45.41 ICD10 GM)"
I believe it was Rief who had been instrumental a few years ago in getting a new code:
F45.41 Chronische Schmerzstörung mit somatischen und psychischen Faktoren
added to the German modification ICD-10-CM (adapted and managed by DIMDI) which is not included in the WHO's unmodified version of ICD-10, which jumps from F45.4 to F45.8.
I would be interested to know what fibromyalgia support groups think 'fibromyalgia' is. I am still not convinced it is a useful term. It is presumably a supposed syndrome - a pattern of symptoms that is sufficiently distinct to suggest a similar mechanism across cases, even if that mechanism is not known. But as far as I can see that is very little reason to think even that applies.
From all the accounts that I come across it seems that fibromyalgia is a syndrome of unexplained pain in several places, perhaps with tenderness as well, although that seems debatable. All the term 'fibromyalgia' seems to add is that doctors assume it is psychological - which is hardly a bonus. For ME at least some doctors think it is likely to be based on a disturbance of physiology. 'Fibromyalgia' is almost a denial of that - it assumes there is nothing really there except unhelpful beliefs.
Scratch the surface and you will find political issues between FM patients, patient orgs, researchers and clinicians. Some orgs welcome the term "chronic widespread pain (CWP)" as a new name for Fibromyalgia (this CWP name predates the ICD-11 proposals*).
*Originally for ICD-11, the category term under which FM is rolled up an inclusion was proposed to be "Chronic primary widespread pain". Now they have it as "Chronic widespread pain." For ICD-11, FM is an inclusion term which is no longer discretely coded for in the MMS Linearization, but takes its code from "Chronic widespread pain."
Some researchers view FM as one end of the spectrum on a continuum of pain rather than view FM as a discrete disease.
Dr Fred Wolfe, for example:
"Fibromyalgia has been described as a spectrum disorder rather than a categorical illness. Please can you explain what this means and whether you agree with this statement?
"What the results of our study showed is that we provided reasonably good evidence that fibromyalgia exists as a continuum rather than a dichotomous diagnosis...
"...In fact we call the measures that we use to diagnose fibromyalgia measures of polysymptomatic distress.
"This is termed by the UK psychiatrist Simon Wesley who first described illnesses such as chronic fatigue syndrome and fibromyalgia being at the end of a continuum of polysymptomatic distress..."
The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity
FREDERICK WOLFE,1 DANIEL J. CLAUW,2 MARY-ANN FITZCHARLES,3 DON L. GOLDENBERG,4 ROBERT S. KATZ,5 PHILIP MEASE,6 ANTHONY S. RUSSELL,7 I. JON RUSSELL,8 JOHN B. WINFIELD,9 AND MUHAMMAD B. YUNUS10
I really think we need someone who'll follow your steps, Suzy. Do you know if there is someone? I really would do it, but at the moment I have so much other things that keep me "busy". And I'm definitely not informed enough. I always wonder how much time and effort it took you to learn everything about ICD.
@Jonathan Edwards, I don't know enough about fibromyalgia. I got a diagnosis due to "tender points", but actually no matter which muscle or transition from muscle to bone you press it hurts. I often think that's just ME.
But, my impression is, too, it's psychologized. If ME taught me one thing it's to be cautious before coming to rush conclusions. I am certain those people have some physical illness, but I don't understand it.
I, too, don't know more about FM patient organizations. But maybe we should learn about it. It's not a rarity that with ME comes a FM diagnosis; in Berlin it's checked via a standard questionnaire (not psycho stuff). If FM is psychologized this could make it more difficult for the ME case, just a thought. It could also be a door opener to have ME under "symptoms&signs" in some future, if we don't keep up.
No, not specifically for FM.
A great deal of time and I've been doing it since 2009.
Well, that's not so unknown, is it? But indeed, my impression is in the ME community is some unity about psychological vs. biological.
So there seems to be a majority for viewing FM as psychological? If Wessely is cited, do the main players in the FM community follow him? So could it be a bit like AfME, just more widespread?
I mean for ME - but there is someone for ME?
The door was kicked open on November 6 by Dr Tarun Dua.
I slightly remembered we're not on the safe side yet, hence my feeling there's a dire need for someone who'll follow you.
I don't know, Inara. My interest in FM does not extend beyond monitoring and reporting on how FM is being classified for ICD-11. I don't know enough about the leading international FM orgs and alliances to comment on prevailing views within the orgs, themselves.
Separate names with a comma.