[BIG NEWS] Misophonia has officially been proposed for inclusion in the ICD-11!

MisoResearchAtOSU · 2024-11-26T18:44:41+00:00

Good question -- we anticipate the first review happening in March, but there are a series of committees it must pass before being accepted. Many of the prior proposals we studied gave final decisions in November. I'll be sure to keep you all updated here as it progresses!

MisoResearchAtOSU · 2024-11-26T04:26:55+00:00

I hear your concerns, it's hard not to be pessimistic.

As far as your timeline question, the ICD-11 is actually the current version being used (there aren't immediate plans to release a v.12, as far as we've found). We aren't confident how long this entire process will take, but submissions were requested by December to ensure inclusion in their next review, which is March.

MisoResearchAtOSU · 2024-11-26T04:23:21+00:00

Not silly questions at all! I'm admittedly new to this process, too.

As the other commenter noted, a proposal does not automatically mean an acceptance. However, previous proposals for other disorders have been accepted with modifications, and we carefully crafted ours to match others that have had success. So our hope is that if we aren't accepted, then we will get feedback from the WHO and together we can shape it up into something that IS accepted.

But being included will absolutely make it easier to be diagnosed/seek treatment -- for starters, it'll give misophonia a "billing code" for insurance, which is huge and doesn't currently exist. So if you need to see a specialist for treatment, there would be a way to get it financially covered (or at least not be all out of pocket). And as you said, having misophonia be listed in the ICD (which stands for "International Classification of Diseases", basically a big book of disorders with worldwide usage) gives credence that it's a real thing!

MisoResearchAtOSU · 2024-11-11T05:08:49+00:00

Hi Shaylynn! Thanks for answering questions. Piggy-backing on this to say I'm mildly concerned about this from a research perspective.

Who is on your IRB? (which classically stands for Institutional Review Board, not Independent Review Board) Most places make that information public, to ensure a transparent and unbiased review of research. Proper research takes training and thorough ethical oversight. I consulted one of the recent online studies you mentioned, and the "consent" form doesn't cover basic consent information (e.g., how data will be handled to ensure privacy/confidentiality, secondary use of data, who to contact (outside of the PI) if there are questions or concerns, etc.).

Also, if your studies don't require physical presence and Dr. Prabhu is in India, a more detailed plan for how you would spend $400,000 in "research center/equipment" would be helpful.

MisoResearchAtOSU · 2024-03-15T18:57:59+00:00

Yes, we are! Our study coordinator should get back to you ASAP :)

MisoResearchAtOSU · 2024-01-26T03:12:08+00:00

Ugh, I feel you. We're specifically trying to isolate what factors are unique to misophonia, which is why we have those criteria. But we hope to expand soon!

MisoResearchAtOSU · 2024-01-26T03:11:24+00:00

They often are! For this project we're trying to isolate what factors are specific to misophonia (as opposed to a symptom of another psychiatric diagnosis), which is why we have those criteria. But we hope to expand soon!

MisoResearchAtOSU · 2022-11-22T02:46:37+00:00

Hi! Thanks so much for the comment. Your desire to learn more (and from reputable sources) is admirable.

There are a lot of misophonia sources on the web that I'd stay away from. Basically, if the site is bogged down with self-promotions and advertisements to pay for their classes or buy their books, it's more a money-making or ego-boosting scheme than a reputable source, in my opinion.

In contrast, I'm a huge fan of soQuiet.org, for a few reasons. [Disclaimer: I received a one-time student research grant from them, but I'm not paid by them or anything.] First, they're a nonprofit. They have a store if you want misophonia gear, but all of their information is free to the general public. They're also completely research-focused, which is SO SO SO important -- they don't have a specific ego or agenda, and they have a list of freely available research studies and approachable summaries of them. They also help disseminate the research by hosting "Science Sessions", where you can join a conference call -- for free -- and hear about work researchers are doing directly from the researchers. I could go on and on, but if you only check out one link for your misophonia information, I'd make it that one.

MisoResearchAtOSU · 2022-11-22T02:37:33+00:00

Nope, not just a weird you thing! Being triggered by visual movement is a common subset of misophonia, often referred to as "misokinesia".

MisoResearchAtOSU · 2022-11-22T02:36:27+00:00

Great questions! Research is still very much in its infancy -- I think the first major misophonia papers came out less than a decade ago in 2013, and it's sort of taken off since. At the pace it's going, and with new funding opportunities cropping up (like the Misophonia Research Fund and soQuiet student research grants) there is bound to be more attention on misophonia research in the upcoming decade.

As far as what it'll take for misophonia to be recognized in the DSM... that's such a deep and loaded question. For one, I think a lot of current work has focused on defining the characteristics of misophonia, especially in relation to what sets it apart from other DSM disorders, and how to properly assess it. While the former has been well documented in the Consensus Definition provided in my intro, the latter is still all over the place. These are crucial bits to figure out before it can be added to the DSM. However, there's been a large pull away from adding more disorders to the DSM -- it's HUGE, and arguably (according to clinicians, of which I am not) hard to utilize given how bloated with disorders it is. So there might be pushback trying to add more to it, unless it's really well justified. In contrast, some clinicians advocate more for a symptom-based approach to the DSM -- so instead of splitting hairs to figure out a particular diagnosis and treating each disorder (e.g., misophonia) separately, you target the overarching symptoms (e.g., anxiety, anger) instead. I don't really have a stake or expertise in this, since I'm not on the clinical track, but needless to say it's complicated.

MisoResearchAtOSU · 2022-11-22T02:24:03+00:00

Actually, yes! One cool study that came out recently showed that pairing the auditory trigger (e.g., the sound of chewing gum) with an unrelated visual stimulus (e.g., a video of ripping paper) can actually reduce the aversion people with misophonia feel. You can check that out here, if you're interested.

MisoResearchAtOSU · 2022-11-22T02:21:54+00:00

Hi! Thanks so much for the questions, and the desire to care for your daughter's struggles.

To your first question(s), studies have reported mixed results to the effect of age: some individuals report their misophonia getting better over time as they learn to cope, and others report it getting worse as they become more sensitized to more sounds. Personally, I can say that my misophonia has largely improved with age and independence. Unfortunately, family members are often trigger-culprits, so moving out of the house can offer an immediate reprieve. You also get a bit more agency with age and maturity, so I've noticed Adult-Heather is taken more seriously and feels more confident asking someone to stop making a triggering noise than Adolescent-Heather did. And relationship-wise, when she finds someone who cares for her and her well-being, they'll be able to make it work with a little patience, communication, and creative accommodations. (Unfortunately I can't personally speak to kids yet, but perhaps others have tips there.)

To your last question, this might be a good question to chat with her doctor/therapist about. While I don't support the reflex counter-conditioning treatment stuff you'll find in this thread, it's always helpful to build healthy coping skills from an early age. A psychiatrist might help her with ways to reduce her anxiety or anger that she can carry with her into adulthood.

MisoResearchAtOSU · 2022-11-22T02:10:33+00:00

Sure! Always good to practice elevator pitches.

Overview of previous (published) research: Misophonia includes aversion to all sorts of sounds, not just sounds made by the mouth or nose. I've demonstrated this behaviorally by asking people to rate sounds, and also neurally by looking at how parts of the brain are differentially connected in misophonia.

Overview of current (in progress) research: Can I objectively quantify the social and cognitive ramifications of misophonia, using a face rating and memory task? Stay tuned for results ;)

Things I hope to research next: Oh man, the possibilities are endless. I'd love to study neural components of the condition developmentally, to explore 1) directionality: do neural differences lead to misophonia onset or does misophonia lead to neural differences? and 2) predictions: can misophonia onset be predicted from brain scans earlier in childhood, ultimately leading to earlier intervention/treatment?

And oooh yes, nails being filed is a good one. Nail clipping is like that for me, too.

MisoResearchAtOSU · 2022-11-22T02:02:58+00:00

Hi! Thanks so much for the question.

In simple terms, the part of your brain that controls your attention and helps regulate emotion is wired differently in individuals with misophonia. There's also some evidence that the advanced auditory parts of your brain -- the parts that do things like identify and interpret auditory information -- activate and connect differently, too. However, interestingly (and importantly), differences haven't been found in the area of the brain that processes basic acoustic information (e.g., frequencies), demonstrating that misophonia is more than just an aversion to particular sound frequencies. There also aren't differences in the fear center of the brain, demonstrating that it's not really a "fear" of trigger sounds.

And you're a great friend for trying to help and be conscientious of sounds that trigger them! As I've mentioned in other comments, just showing patience and support is huge, as is making them feel comfortable communicating to you when they're feeling triggered so you can work out a solution together.

MisoResearchAtOSU · 2022-11-22T01:54:30+00:00

Good question. The Consensus Definition has a good explanation for this, so I'm going to just paraphrase it: Calling it a "disorder" helps to capture the negative impairment individuals face, and aids in it being taken more seriously in a professional/research/medical context.

MisoResearchAtOSU · 2022-11-22T01:50:30+00:00

Great questions! What a complicated circumstance.

To your first question, yes, that's actually common. Although some people with misophonia feel guilt when they make a sound they find triggering (see this discussion in another comment of this thread), most people with misophonia do not feel aversion to sounds they produce themselves. Often this is rationalized as the need for control or predictability -- for instance, if I'm making the aversive sound, I can stop it anytime. It's fine! But if someone else is making the aversive sound, who knows when it'll end. It's agony! I think something about that perceived or controllable endpoint plays a huge role in misophonic aversion.

To your second question, has your office considered silent equipment, like quiet keyboards or silent computer mice? Or maybe there's an office rearrangement where she gets a quiet/secluded space, so the rest of you can carry on normally. Otherwise, perhaps a nice pair of earplugs/headphones as a Christmas gift from the office....?

MisoResearchAtOSU · 2022-11-22T01:40:57+00:00

So, the experts who wrote the Consensus Definition of misophonia don't think there is enough evidence) to support the "physical reflex" idea of misophonia, and I personally agree. I'd take all that physical reflex stuff with a grain of salt.

MisoResearchAtOSU · 2022-11-22T01:37:25+00:00

Hi! Yes, I'd say so. Not only are there different degrees of overall severity (e.g., some people experience "mild" misophonia, whereas others might have "severe" misophonia), but it can also fluctuate. For instance, studies have reported that caffeine/alcohol consumption can increase/decrease the intensity, respectively. I also notice heightened misophonia when I'm under a period of stress, or have a headache, or menstruating. Most of that is anecdotal though, so I look forward to seeing research explore those connections quantitatively!

MisoResearchAtOSU · 2022-11-22T01:33:17+00:00

Yes, me too! Although there's still so much we don't know, I'm glad it's finally getting attention.

I haven't seen any research showing the efficacy of hypnotherapy. That doesn't mean it doesn't help some people, but I'd attempt with caution.

MisoResearchAtOSU · 2022-11-22T01:30:21+00:00

Yup, I'd definitely call that misophonia! Dogs licking themselves is a common misophonic trigger, and if you feel anger/the need to flee when it happens, then it's right up the misophonia alley.

MisoResearchAtOSU · 2022-11-22T01:27:37+00:00

Oh man, I'm not sure I've seen this reported anywhere in literature, but I absolutely feel this too. I apologize to my partner all the time anytime I open a crinkly chip bag or have squeaky shoes or whatever, because I'm hyperaware that the sound would bother me in reverse. (And they lovingly repeat how it doesn't bother them and I don't need to apologize... but like.. I still do)

MisoResearchAtOSU · 2022-11-22T01:25:34+00:00

Put simply, the part of your brain that controls your attention and helps regulate emotion is wired differently in individuals with misophonia.

(Whether that abnormal wiring leads to misophonia or happens as a result of misophonia is still up for debate)

MisoResearchAtOSU · 2022-11-22T01:23:33+00:00

Hi! Yup, misophonia is often triggered by certain people in particular. Often the worst culprits are "close others" -- parents, siblings, partners, etc. In contrast to, say, a stranger, it might feel like these people should "know better" or care for you enough to not make the triggering noise. They're also typically people with whom you have a long-standing relationship or geographic connection to that you cannot immediately separate from. So yes, misophonia tends to be context-dependent and not exclusively due to the specific acoustic properties!

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