ICD-11 Fibromyalgia - MG30.01 Chronic widespread pain

[Jonathan Edwards]

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 am certain that people with pain have a physical illness, but the word 'fibromyalgia' is specifically used when a doctor thinks the pain is psychological.

So: 'you have pain in many places and I do not know why' is an honest medical statement.
'You have fibromyalgia' means 'you have pain in many places but I think it is all in you mind'.

It is the same person with pain for physical reasons.

 

[Dx Revision Watch]

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.

Although I shall be retiring in a few weeks' time I will continue to keep an eye on the orange ICD-11 Maintenance Platform (but I shall be checking every few days, rather than several times a day, as I currently do).

Edited to add: I may have to taper off gradually, rather than go cold turkey.

If there are any developments with several of my own proposals which have not yet been processed; or with the joint proposal that Mary Dimmock and I submitted in March 2017; or if WHO posts any new proposals; or if there is any development with the proposal submitted by WHO's Dr Dua of November 6, 2017, then I have said to Mary that I will be available to collaborate on any responses we feel we need to submit.

(Apart from the above) I won't be doing ICD-11, ME, CFS, BDD, SSD, BDS, BSS, MUS, PPS, IAPT stuff on @dxrevisionwatch on Twitter, or reporting on general ICD-11 stuff, or contributing to forums, unless to post that Mary and I have had to submit a response to a development with a new or existing proposal.


What I think this forum might usefully consider is identifying two or three individuals who are well enough to keep an eye on developments and who could commit to several years of monitoring, because even if the code sets are ratified in May 2019 with PVFS, CFS, BME in their current location, the WHO MSAC or CSAC could submit a new proposal at any point which would enter the annual maintenance and update schedule. (Although any approved major change, for example, a change of chapter, would likely have to wait 3 to 5 years for incorporation, rather than be incorporated into an annual update.)

They would need to register with the Maintenance Platform to have access to the Proposal Mechanism and to poke around and get a feel for the system and the proposal process and also for ICD conventions, and familiarize themselves with the ICD-11 Reference Guide.

Then, if there are any developments, the forum could consider compiling a response, as a stakeholder group, as has been done for NICE.

 

[Melanie]

No action was taken by them.

I was wondering if there had been any input from Fibro orgs. as I know patients, patient orgs., and others had all given input for the ICD on ME/CFS. I think they must be intimidated trying to go up against Fred Wolfe. I know he wrote a paper along with
walitt working on CFS at the NIH. I forget his name.

 

[duncan]

I too am certain that people with pain have a physical illness, but the word 'fibromyalgia' is specifically used when a doctor thinks the pain is psychological.

So: 'you have pain in many places and I do not know why' is an honest medical statement.
'You have fibromyalgia' means 'you have pain in many places but I think it is all in you mind'.

So, teachable moments with peers, yes?

 

[Medfeb]

What I think this forum might usefully consider is identifying two or three individuals who are well enough to keep an eye on developments and who could commit to several years of monitoring, because even if the code sets are ratified in May 2019 with PVFS, CFS, BME in their current location, the WHO MSAC or CSAC could submit a new proposal at any point which would enter the annual maintenance and update schedule.....

They would need to register with the Maintenance Platform to have access to the Proposal Mechanism and to poke around and get a feel for the system and the proposal process and also for ICD conventions, and familiarize themselves with the ICD-11 Reference Guide. Then, if there are any developments, the forum could consider compiling a response, as a stakeholder group, as has been done for NICE.

I'd like to reiterate Suzy's suggestion that this forum might consider identifying 2 or 3 people to keep an eye on this and also come up to speed on these systems. As Suzy noted, it takes a while to come up to speed. I started working on ICD-10-CM and DSM in 2011 and ICD-11 in 2015 and am still learning the intricacies and the players. Important to keep an eye on it as politics appears to have as much influence on classification as science.

Mary

 

[Inara]

I too am certain that people with pain have a physical illness, but the word 'fibromyalgia' is specifically used when a doctor thinks the pain is psychological.

So: 'you have pain in many places and I do not know why' is an honest medical statement.
'You have fibromyalgia' means 'you have pain in many places but I think it is all in you mind'.

It is the same person with pain for physical reasons.

I think you're right. I know the doctor who gave me the diagnosis doesn't view FM as psychological, but I learnt almost all the others do. I have decided not to mention it too loudly, especially as I think it's ME after all.

What I think this forum might usefully consider is identifying two or three individuals who are well enough to keep an eye on developments and who could commit to several years of monitoring

Can we do this?

I am registered on the ICD-11 platform and started some time ago to read a bit, but I have too many own "projects" at the moment.

I think they must be intimidated trying to go up against Fred Wolfe.

There is no need to be intimidated. That's what they want. Just keep on. And why should a patient org be intimidated by these individuals? Is there really a reason?

 

[Inara]

I'd like to reiterate Suzy's suggestion that this forum might consider identifying 2 or 3 people to keep an eye on this and also come up to speed on these systems. As Suzy noted, it takes a while to come up to speed. I started working on ICD-10-CM and DSM in 2011 and ICD-11 in 2015 and am still learning the intricacies and the players. Important to keep an eye on it as politics appears to have as much influence on classification as science.

Mary

Could you and/or Suzy be teachers where needed?

 

[adambeyoncelowe]

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.

I think this is right. The questionnaires used to assess fibro are all about depression, anxiety, somatoform illness, catastrophising, etc. I had to complete some of these recently, and realised very quickly that even though I have pain, none of that stuff applied to me.

What also struck me was how things like breathlessness and digit pain was seen as evidence of hysteria. Yet a patient might actually have asthma and peripheral neuropathy, as I do, and there's no way to distinguish between the two. That seems very dangerous to me.

ETA: I don't really have tender points either, so I believe it's all part of my ME.

 

[Inara]

Yet a patient might actually have asthma and peripheral neuropathy, as I do, and there's no way to distinguish between the two. That seems very dangerous to me.

My experience was that most psychologists don't care about uniqueness of symptoms or reproducibility. Breathlessness can also be a symptom of orthostatic dysregulation, COPD, heart issues etc. Another example: A very common question in depression questionnaires is libido. There are so many other reasons why a person can have reduced libido (or related probems), like low testosterone or diabetes. I pointed this out to a young psychologist, but obviously he was appalled because he didn't reply.

The big problem I see is that all these possibilities aren't checked, they are exclusively seen as psychological.

I never got this FM questionnaire you talk about. I think it would have made me sceptical and cautious, too.

 

[adambeyoncelowe]

My experience was that most psychologists don't care about uniqueness of symptoms or reproducibility. Breathlessness can also be a symptom of orthostatic dysregulation, COPD, heart issues etc. Another example: A very common question in depression questionnaires is libido. There are so many other reasons why a person can have reduced libido (or related probems), like low testosterone or diabetes. I pointed this out to a young psychologist, but obviously he was appalled because he didn't reply.

The big problem I see is that all these possibilities aren't checked, they are exclusively seen as psychological.

I never got this FM questionnaire you talk about. I think it would have made me sceptical and cautious, too.

It was a somatic symptoms questionnaire or somesuch from a journal on hysteria. There were others too, including the dreaded HADS.

 

[Dx Revision Watch]

Could you and/or Suzy be teachers where needed?

My plan is to wait for the July 31 update of SNOMED CT International to be released on the public browser (mid to end of next week) then I can confirm the addition of the new parent Concept for CFS. I also have a number of update posts to prepare for Dx Revision Watch site which I hope to have posted by the end of August.

Then I shall step back.

I'm not comfortable about committing to provide support and advice beyond that point.

As you know, in May, I started a dedicated thread for updates on ICD-11 and other classification and terminology systems here:

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

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


What I can do is collate the links for a number of key documents and posts in a new post on the thread above as "legacy" documents for those who might be interested in forming a long-term monitoring group.

I'd suggest that discussions about forming a potential monitoring group are carried out on a members only thread. I'd also suggest that any group formed specifically to monitor and report on developments with classification systems for S4ME consults the S4ME membership over policy/position if preparing responses and maintains independence from patient orgs, alliances of patient orgs, advocacy/action groups and other forums.

In the interests of transparency: due to events in April, I shall not be advising any patients orgs or alliances in the future around classification and terminology systems.


PS Inara, I'm sorry I didn't spot your PM until last night, but have now replied.

Suzy

 

[Lindberg]

Perhaps this is of interest regarding fibromyalgia? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344444/

 

[Dx Revision Watch]

More from F Wolfe and B Walitt (2016)

http://headache.imedpub.com/fibromyalgia-a-short-commentary.pdf

Wolfe F, Walitt B. Fibromyalgia: A Short Commentary. J Headache Pain Manag. 2016, 1:3.

 

[Inara]

I'm not comfortable about committing to provide support and advice beyond that point.

I understand. Thank you for everything.

I'd suggest that discussions about forming a potential monitoring group are carried out on a members only thread. I'd also suggest that any group formed specifically to monitor and report on developments with classification systems for S4ME consults the S4ME membership over policy/position if preparing responses and maintains independence from patient orgs, alliances of patient orgs, advocacy/action groups and other forums.

This sounds reasonable. @Trish, @Hutan and the others, what is the opinion regarding this?

 

[Trish]

An unofficial response - if you want to form such a group and invite members to join it, do feel free to start a thread in the members only area to invite participants to put themselves forward. If such a group is formed, it could request a private subforum here as a space to work together. @Adrian is the person to ask to set up such a private subforum.

Any group that wants to provide material under the S4ME 'label' would have to ask the committee, as the group who did the PACE briefing paper did.

 

[Melanie]

Drug Approved. Is Disease Real? 2008

Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.

“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

Because you always want the person that came up with the criteria to diagnose a disease to then say it isn't a disease afterall. That always helps.

And this: "So fibromyalgia is a social illness, it’s a societal illness, it’s a personal illness it has social consequences for patients and doctors and financial consequences that are worth a lot of money for pharmaceutical consequences, it is worth a lot publications to physicians. There is a lot invested in what I would call a psycho-cultural illness."

 

[Jonathan Edwards]

Because you always want the person that came up with the criteria to diagnose a disease to then say it isn't a disease afterall. That always helps.

Maybe in this case it does. I suspect that both the New York Times journalist and Dr Wolfe are muddying issues here but what Dr Wolfe is basically trying to say sounds right to me:
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”

As most rheumatologists (other than fibromyalgia fans) have always thought, people have pains for 101 different reasons but none of them are usefully called 'fibromyalgia'. 'Fibromyalgia' is only useful to a doctor if he or she believes in the BPS nonsense. I cannot see what use it is to patients.

Which makes me think that threshold just be a blank in the ICD here - no MG30.0, no fibromyalgia or chronic widespread pain or chronic primary pain or whatever. These are unsubstantiated concepts.

 

[Trish]

I'm having trouble understanding what you are saying, @Jonathan Edwards. Are you saying some patients do have the symptom chronic widespread pain, but that giving it a label 'fibromyalgia' is unhelpful?

If someone has their life blighted and their ability to function reduced significantly by being in constant pain that doesn't go away with any attempt at rest, relaxation, exercise, sleep or anything else, and is always there, surely it can be helpful to patient and doctor to have a 'shorthand' single word label that enables them to talk about it and gives them access to any pain relief and work place adjustments etc. that make their life more bearable.

Even if it's just a shorthand way of saying, your symptom is real and disabling, though we don't know the cause. Perhaps if fibromyalgia were described as a symptom rather than a syndrome, that might make it more acceptable. Other types of pain symptoms have names - migraine, dysmenorrhoea (period pain), for example, where the cause is unknown. Is dysmenorrhoea a symptom or a syndrome? And migraine?

Perhaps the problem with things like fibromyalgia, 'chronic fatigue syndrome', headache, etc is that painful muscles, fatigue, headaches etc. are common among healthy people too.

So when someone has a disabling, life changing symptom or set of symptoms where the dominant one seems simply like a worse or more exaggerated version of something lots of healthy people experience, it is difficult for doctors and other non-sufferers to see that the person's suffering is bad enough to be as disabling and hard to bear as the sufferer says it is. It's all too easy for healthy people to say, 'I get fatigued too' or 'My muscles ache after exercise too' - then it's just a short step to the assumption that the sufferer is putting it on, or psychologically weak...

 

[Jonathan Edwards]

I'm having trouble understanding what you are saying, @Jonathan Edwards. Are you saying some patients do have the symptom chronic widespread pain, but that giving it a label 'fibromyalgia' is unhelpful?

If someone has their life blighted and their ability to function reduced significantly by being in constant pain that doesn't go away with any attempt at rest, relaxation, exercise, sleep or anything else, and is always there, surely it can be helpful to patient and doctor to have a 'shorthand' single word label that enables them to talk about it and gives them access to any pain relief and work place adjustments etc. that make their life more bearable.

I am saying that people have all sorts of chronic pains, yes, and some people have pains in many places, yes, but in all my career as a rheumatologist i have always tried to find the most plausible physical explanation for each pain. Having done that I am not sure that I ever came across anyone for whom I needed some extra term like fibromyalgia.

The problem for me with the shorthand term is that it is illogical to look for one. It also encourages doctors to skip the business of trying to find a plausible physical explanation and to jump to an 'explanatory' term that in fact explains nothing. It seems that the word fibromyalgia is used by doctors in two ways. The great majority of doctors assume that fibromyalgia means there is nothing really wrong but it is better to give the patient a name to keep them quiet. A smaller group, that may have included Wolfe, thought that there was a physical 'disease' called fibromyalgia that caused the pain, at least in 1990. But people who get labelled as having fibromyalgia are so heterogeneous this seems pretty unlikely. Moreover, as I say, in my experience the great majority of chronic pains are explainable in ordinary musculoskeletal terms. I have chronic widespread pain that significantly reduces my function and does not go away with rest or exercise or sleep (it is worst in the morning). And I know that it is due to a combination of a large disc prolapse leading to bone encroachment on my lumbar nerve roots, a permanently dislocated left acromioclavicular joint, a rotator cuff tear in the right shoulder, cervical disc degeneration and worn cartilage in both knees. I think it very likely there are lots of people much worse off than me for similar sorts of reasons.

I have mentioned in the past that I did not recognise ME as a useful diagnostic term when I was practicing. I have learnt that I was wrong. But ME only affects about one person in 500. Moreover, it does not tend to be seen by rheumatologists so much as neurologists or endocrinologists I suspect. In retrospect I probably saw half a dozen people with ME over the years and looked after them as best I could on the basis that I could not explain their disabling symptoms but was happy to try to provide some continuity of care.

In contrast, chronic widespread pain would be expected to go almost exclusively to rheumatologists. If it is supposed to affect a few percent of the population then I ought to have seen dozens of cases. I saw lots of people with pains in many places but I had no reason to think there was any value in lumping them together. ON the contrary, my job was to sort out what each of the pains was most likely due to.

Maybe there is a real syndrome of widespread pain that I never came across because it is in fact quite uncommon - maybe less than one person in a thousand. But the diagnostic criteria for fibromyalgia do not suggest that even the fibromyalgia enthusiasts had identified any very specific syndrome - it just seems to be a rag-bag of lots of unexplained pains. And when I came across patients who had been diagnosed by my colleagues as 'fibromyalgia' they seemed to have nothing much in common and in fact most of them seemed to have a plausible identifiable cause. The one time I allowed myself to decide a chest wall pain had no real physical cause it turned out three months later to be lung cancer.

What I do accept is that a proportion of PWME seem to get a lot of pain that is not obviously due to local limb problems etc. That to me suggests that the pain may have a cause a bit like the pains we get with flu - in that case presumably mediated by the hyperalgesic effect of cytokines.

In other words I fully accept that there are people with chronic pains in several places but the 'shorthand' term of fibromyalgia seems to me to do entirely the wrong job. A useful medical description of my pains takes 39 words. In the case of most of my colleagues my impression has been that shortening that sort of description to fibromyalgia was just laziness.

 

[Trish]

Thank you for that explanation, that's really helpful. It sounds like you are right that a lot of doctors don't bother to diagnose carefully, finding it easier to just stick a fibromyalgia label on the patient.

As someone with ME that includes chronic widespread pain that can't, as far as I can tell be explained by the sort of injuries you describe in your case, I have been 'diagnosed' with fibromyalgia by an OT who did the tender point test. What that test is supposed to prove, apart from the fact that some points in my sore muscles are particularly tender, I have no idea.

I guess it's possible that some people currently diagonosed with fibromyalgia actually have mild ME and happen to present to their doctor with pain as their dominant symptom, since it's easier to explain and ask for treatment for than explaining the weirdness of PEM if you've never heard of it.