We’re thrilled to announce the official release of Your Mental Health Repair Manual!
Check out the release announcement. (PDF)
Only one week to go until Your Mental Health Repair Manual is officially released!
We’ve finalized the text, uploaded it to our various distributors (Amazon, Draft2Digital, and Ingram), and have a bulk order in with a local printer. Working now on website updates, as well as various launch-date announcements.
Exciting (and very busy) times!
Incidentally, the ‘ad’ above is very tongue-in-cheek, initially inspired by the always-too-early Christmas marketing blitz you see everywhere before or at Hallowe’en and Remembrance Day. Several people got a kick out of it, so sharing it here. Please feel free to pass along or post on social media!
What do we do when we’re not working on finishing up our book? Yes of course, check out other books! Both of us had an opportunity to examine this new book from Dr. Diane McIntosh. Our review(s) follow.
An empathetic and optimistic hands-on tour through the world of depression.
Book titles can be obscure and misleading… not this one! Dr. McIntosh’s book fully delivers on its promise, giving patients and others most everything they need to know about depression. Definitely comprehensive, she covers a wide range of subjects: what depression is, what it looks like in all its diversity, how it’s diagnosed, what causes it, how to talk to people about it, where to find help, myths, and information on a broad range of treatments. The book covers talk therapy, supplements, electroconvulsive therapy, exercise and many others (kale enemas, incidentally, are not recommended). She extensively covers the confusing and misunderstood universe of medications. She tackles the real questions people have about how they work, what to expect, how to deal with side effects, and more.
The other keyword in the subtitle is “compassionate,” and this is the real strength of the book. It’s refreshingly positive, hopeful, and, most of all, human. Her explanations, intermixed with patient vignettes, treat the reader with respect and serve to empower. They normalize what can be a frightening and lonely illness for many people. Readers will also find actionable advice throughout the book. This includes specific recommendations and suggestions around where to go to find help, how to approach appointments, and talk to others, whether caregivers, family and friends, or someone that you’re concerned about. It’s clear that nurturing informed and fully engaged patients is her mission, unlike some doctors who are threatened or intolerant when patients step up.
While well-referenced, this is far from a dry and monolithic academic text. The writing is very accessible. It’s broken up into small sections and chapters, which makes it very easy to follow. Readers can skim through topics of less interest and take a deeper dive into others (budding genetics and neuroscience geeks will rejoice!). I especially like the extensive glossary. It helps not only when encountering an unfamiliar term in the text, but also helps when deciphering jargon from doctors or others. Items in the glossary are bold-faced throughout the book, which again makes it easier to skim through.
This is a very practical book, delving into medical evidence and standards when they’re useful, but not being constrained by their limits. She’s not shy about offering real-world advice based on her experiences with patients, which mostly works. At times though, it’s a challenge. There are great benefits in sharing what too rarely ends up written down, but some risks of over-generalizing with such diversity in patients and illnesses. For example, when briefly describing specific medications, she suggests “other SSRI options are better.” This may be a bit heavyweight and could shut down rather than open up a conversation with a prescriber. Limited space makes this difficult to pull off perfectly, though appropriate caveats are usually close by.
‘This is Depression’ covers a lot of ground in an approachable and relevant way. Anyone hoping to gain a better understanding of this illness and how to recover from it will benefit. Dr. McIntosh has done a superb job bundling everything together in one comprehensive, compassionate package.
A great resource for patients and families
So far, I’ve only had a chance to briefly flip through it, but I’m excited to have a book like this to recommend to my patients and their families. Like Diane, patients in my own psychiatry practice are always looking for more information about their illness. Too often, they end up finding a few things here, a few things there, not all of it reliable or easy to digest. She’s put together a great collection of solid and easy to read information on a very diverse range of topics. Most importantly, patients will be able to find answers to nearly all their questions in one place. I like that she doesn’t shy away from specific biological details for the many patients who are eager to learn more. I’m looking forward to going through this in more detail, and I’m sure will learn a few new things myself.
It’s now only one month until the launch of Your Mental Health Repair Manual, which will be available November 25th!
We’re busy working through some of the last details, and cannot wait to
finally get this done celebrate its release.
Both the paperback and ebook versions are already starting to percolate out to various bookseller websites for pre-order.
To read more or check out an excerpt, visit https://mhnav.com/book/
Mental health awareness week is normally focused on stigma, but we can’t forget that access to quality treatment matters too… and there’s lots more work to be done on that front!
With that in mind, we’re excited to announce the upcoming launch of:
Your Mental Health Repair Manual:
An Empowering, No-Nonsense Guide to Navigating Mental Health Care and Finding Treatments That Work for You.Pauline Lysak MD and Mark Roseman
This is the answer for all the patients, families, and healthcare providers who’ve been frustrated trying to access mental health services. Finally, the practical, real-world solutions to getting your care on track, in one easy-to-follow guide.
The book will be officially released in late November. To pre-order a copy, or to check out an excerpt, visit https://mhnav.com/book/.
As we get ready to launch our new book, it’s time to restart this blog. You’ll see a great deal of new information posted here over the coming weeks and months.
Put another way, note that everything prior to this posting was from 2014-2015, and likely somewhat out of date. We’ll keep them around, and some, like the article on ferritin and B12, are still quite popular. We don’t plan on updating them though.
Scientific evidence is treated as holy gospel by some people, and entirely discounted by others. When it comes to evidence for mental health, living at either end of this spectrum is a mistake. This article explains everything you need to know to understand mental health evidence, including its limitations.
This started out as a chapter in the book, but was eventually removed both because of length and complexity. It was replaced by a brief teaser in the “Paging Dr. Google” chapter, but we wanted to keep the original available for those who want the details.
Before proceeding, we’ll let you in on a secret about evidence. People tell you a treatment they want you to use has evidence. Doctors and other professionals may use an evidence-based approach. Science gives us objective confidence through evidence.
Evidence is important. However, hearing that there is evidence for a treatment often does not mean what you think it means.
Let’s say you’ve been diagnosed with major depressive disorder (MDD). You hear a statement like “There is strong evidence to support the use of HappyNow™ for treatment of MDD” or “HappyNow™ was shown to be significantly better than placebo (a sugar pill) at treating MDD.”
Most people would hear these phrases and think to themselves: “I have MDD. So if I take HappyNow™ it will help me! I’ll be better!” Unfortunately, most people would be wrong. This is not at all what they mean. We’ll explain, but here’s the bottom line:
If someone tells you that ‘X’ will treat your mental illness and that there is evidence or proof that it works, there is a high probability that will be of little help to you.
Most people need to try several different treatments before they find one or more that fully treats their illness. People are often surprised that science doesn’t provide the level of certainty they expect. Why?
* The understanding of what causes certain symptoms is still unclear compared with more established areas of medicine, e.g. cardiology. People used to think depression was all about serotonin, but now think many other factors contribute, e.g. inflammation. A faulty understanding of causation can make data that is collected less relevant.
Thorough testing that takes into account the variability found in the real world is practically impossible. Tools to examine and measure results are also limited. Evidence in mental health, therefore, has more caveats. Evidence cannot reliably predict what will or won’t work for someone. It’s not like evidence in chemistry class where all you’re checking is if adding A to B turns B purple.
Evidence in mental health is no guarantee. If you’re comfortable with that conclusion, please feel free to skip to the next chapter. If you want a deeper understanding of why evidence in mental health is less clear-cut, keep reading. This will also help if you need to argue with people about treatments. Compelled to justify why you’re not drinking 10 cups of tea each day made from a stinky plant that a persistent relative pulled from their garden? Read on. Or get them to read it. While they’re drinking their tea.
In medicine, people look for proof that a treatment will work. What they mean by proof is scientific evidence supporting the conclusion. The best treatments are evidence-based.
However, evidence-based is not a simple yes or no concept. The quality of evidence affects how much you should trust its conclusions. Determining the quality of evidence can be extremely challenging.
Evidence comes in different forms. You’ve likely heard of some, like randomized control trials (RCT’s). Medical evidence usually falls into one of the categories shown below.
|1a||Systematic review of randomized control trials|
|1b||Individual randomized control trial|
|1c||All or none|
|2a||Systematic review of cohort studies|
|2b||Individual cohort study|
|2c||“Outcomes” research; ecological studies|
|3a||Systematic review of case-control studies|
|3b||Individual case-control study|
Some levels of evidence.
Adapted from Oxford Centre for Evidence-based Medicine—Levels of Evidence (March 2009). Their website provides an excellent set of resources to learn more about how evidence can be used and misused in medicine.
Evidence has the potential to be stronger the higher up it is on the list. Be skeptical when someone tells you that a treatment will work because it’s “evidence-based.” This is not an unqualified endorsement.
We’ll describe a few of these levels below. Let’s say you are a researcher who is interested in whether a new medication helps treat a specific illness.
At the lowest (weakest) level of evidence, you might follow one or more people who took the medication and describe what happens. This is called a case report or case series.
A case-control study tries to identify the cause of an illness. It’s not about treatment so wouldn’t help you with the new medication. It takes one group of people who have the illness and another who doesn’t have the illness. Researchers look at the medical histories of both groups. They try to identify any differences that might explain why one group has the illness.
In cohort studies, you gather a pool of research subjects. Those who are already taking the medication go in one group, and those not already taking the medication go in another group. You follow both groups over time and identify the differences between them.
Randomized control trials are the most well-known evidence-based clinical studies. You gather a group of patients who all have the illness. Half of the people in the group, picked randomly, are given the medication, while the other half aren’t given the medication. You follow everyone over time and compare the outcomes of both groups. In a double-blind RCT, neither the patients nor the researchers that measure the results know which patients were given the medication.
Systematic reviews (SR’s) or meta-analyses start with a literature search identifying previous studies. These include RCT’s, case-control, or others. The similarities and differences between individual studies are analyzed and conclusions are drawn. These “studies of studies” can vary in quality depending on how the individual studies are selected, their quality, and their methodologies.
If you have ten studies using the same methodology, the same patient restrictions, etc., the meta-analysis can’t draw broader conclusions than the individual studies. But a meta-analysis could include many studies that varied greatly in overall study design. For example, it could include different medication doses, lengths of time, ages, genders, people with multiple physical and mental health conditions, and so on. A review of many large and varied studies that all show the same result is strong evidence.
Before trusting a study, you must review its methodology and quality. The size of the study, patient selection criterion, constraints, outcome measures, duration, dropouts, and many other factors of the study design have a significant impact on how results are interpreted. Have other researchers been able to take the same study design and replicate the results?
You may have a great study providing a low level of evidence. Or you may have a very flawed study which aims to provide a very high level of evidence. Neither are likely much help to you. How do you know if a study is comprehensive and methodologically sound or deeply flawed? Read articles that reference the published study and see if they support it or denounce it and why.
As you can see from even this very superficial overview, the reality of medical evidence is not straightforward. We’re not suggesting you need to be an expert in experimental design or statistics. Instead, recognize that evidence can mean many things and can evolve over time. You should look for strong evidence, ideally many large, long-term, independent, and well-designed RCT’s. Be cautious when relying on small observational studies or anecdotal reports, especially from only a single source.
When people claim that treatments are evidence-based, they aren’t lying to you. They’re not trying to deceive or mislead you. They’re just speaking a different language. The word significant is a perfect example. Significant has a technical meaning in statistics, which is something along the lines of “much more likely.” As in, we’re pretty sure the medication is better than nothing. How much better? That we don’t know. It could make you feel 0.1% better (i.e. who really cares) or 95% better (wow!). We’d refer to the latter as clinically significant, which is a completely different concept from statistical significance.
Here’s a silly example. Gather 5000 people. Give half of them, chosen at random, a placebo pill and the other half the medication you’re studying. Give them all a test of some kind. Let’s say that every single person who took the placebo scored 61/1000, while everyone who took your medication scored 62/1000. That is (statistically) significant because the likelihood the pill improved their score (vs. it being a random fluke) is very high.
Despite that, the result is likely not clinically significant. If someone offered you a 0.1% improvement in your mental illness, it’s not going to make a big difference in your life. Also, in real life, it would involve more than a single pill. To complicate matters even further, there are even different levels of statistical significance, e.g. “we’re confident it will be better 19 times out of 20” (ok, but not great) vs. “… better 999 times out of 1000” (very good).
Mental health studies follow one or more groups of people for a period of time. They then evaluate some aspect of their mental health, e.g. are people more or less depressed? It is these outcomes or results that provide the conclusions for the study. The question you have to ask yourself is if the outcomes matter to you. In other words, are the symptoms that improved the same symptoms you have? In many cases, the answer is either a clear “no” or the study doesn’t provide enough information for you to know.
Again, let’s assume you have MDD. If someone told you they had a cure for all mental illness (and an RCT to prove it!), you’d be thinking snake oil. If they said instead it was shown to be effective for mood problems, you might not completely ignore them. If they said (and you believe) there was statistically and clinically strong evidence their treatment helped with MDD? Now they’ve probably got your attention. Does it apply to you? Maybe.
Two people can have two completely different sets of symptoms, presenting in two completely different ways, and be diagnosed with the same mental illness. How different can they be?
Even a specific mental illness like MDD can be astronomically diverse. Studies that fully recognize this are inordinately expensive and complicated to run. Most studies can’t do that, so their reported outcomes are very general. At best, they can offer possibility and future promise.
Most studies use rating scales to measure symptoms before and after. A common one for depression (HAM-D) has 17 questions about different symptoms. Someone interviews you to determine a rating for each symptom. They give you a score between zero (you don’t have that symptom at all) and either two or four (you’re greatly suffering from that symptom). They add up all the questions and get a total score for how severe your depression is, as shown below.
|≥23||Very Severe Depression|
Interpreting scores on the Hamilton Rating Scale for Depression (HAM-D).
Imagine a study showed that a medication reduced MDD from severe to normal. This sounds spectacular! But if they measure it according to the total HAM-D score, that can happen by improving as few as three symptoms (out of 17).
By looking only at the total score, you have no idea which symptoms it improved or by how much. Errors in sampling may have led to more study participants with one set of symptoms. Even with a very large sample size, a medication that works really well on only a few symptoms would show a statistically significant effect. All this is great unless you have some of the symptoms that didn’t improve in the study. The medication has a much smaller chance of helping you than the overall result suggests. But you have no way of knowing because the study didn’t report individual symptoms, just the total HAM-D score.
Using a single number as a proxy for multiple individual measures is common. You ideally would like to see the effect on individual measures. That will help you determine if it’s (more) relevant to you. But if a study wants to look at many results, it needs to be much larger and more expensive. Achieving the same statistical significance as one with a single result increases the size and expense even further. There are other reasons why researchers like to report on a single measure. Saying “this medication is an effective treatment for depression” is a much better sound bite than “this medication effectively reduces feelings of guilt in patients with depression.” While the first has a better ring to it, it’s just not as useful when you’re making treatment decisions.
Encapsulating many symptoms behind a single score can hide a lot about what the study is actually measuring, as you just saw. But it’s not only the outcomes that you need to be concerned about. It’s also the inputs, otherwise known as the people who participated in the study. How varied was that “random sample” of subjects? Does it provide a true representation of the overall population? Most importantly, does it represent you?
It’s now generally recognized that for decades, medical studies had a very strong gender bias. Most studies used men as test subjects. There are statistical benefits of tightly controlling the pool of subjects. This helps strengthen the result, even though it applies to fewer people. It’s a stretch to broaden the conclusions without the data to back them up. Claiming that 70% of men who have a heart attack experience chest pain before based on evidence. Because nobody was studying women, everyone assumed they too had chest pain 70% of the time. When the studies were done, chest pain was much less common (around 58%). Other differences were even more pronounced.
A single study doesn’t need to cover every variation. But the more variations covered by multiple studies, the better. Other factors can include:
The list goes on. Do vegans react to a medication differently than carnivores? Is exposure to certain types of pollution a factor? Hair colouring? People can make educated guesses about what factors make a difference, but without the data, they don’t know for sure. They can only be 100% sure of the effect on everyone if they test everyone.
Even a large study with great variation can be tricky. Like with outcome measures, statistics can hide important variations in the subject population if not used well. If improvements were seen in the group as a whole, was it just one particular subset of test subjects that saw an improvement? Do they share something in common? Do you share that common factor? It could even be a different cause for their illness. This is something we neither understand well or can reliably measure. A treatment that affects MDD due to one cause may not touch MDD caused by something different.
Mental illness is diverse, complex, and rooted in multiple causes. All of these make reliable and informative statistical sampling more challenging.
We are not saying that evidence doesn’t matter—far from it. But it’s important to recognize there are limitations to the evidence available. More importantly, don’t be manipulated by deceptive language. You want to choose the treatments that have the best chance of helping you and treating your illness. Try to have realistic expectations. You don’t need more disappointment.
Some treatments are supported by strong evidence. This includes larger studies, broader sampling, and better outcome measures. Studies that can be independently replicated and high-quality meta-analyses are also important.
Evaluating the quality and applicability of research is something you should be doing with your doctor or other health professionals. Don’t just bring some paper and say you’re convinced the treatment it describes is credible and applicable to you, so you’re going to try it. Discuss with them which studies and treatments best apply to your illness. Remember that they have extensive expertise in interpreting medical literature. Use that to your (and their) advantage.
Accept that high-quality evidence isn’t available to answer every question. Sometimes doctors have to rely on gut instinct or clinical intuition. They’ve seen that “certain types” of people do well on one medication but not another, and that’s why they recommend it to you. They’re filling gaps in the evidence with (ad hoc, informal, and subconscious) observational studies of their own.
What we hope is to lower your expectations to match reality. Finding the right treatment for you may not be a quick or easy process. You will likely have to try several different things, some may partly work, some won’t work at all. It’s not a failure, it’s a necessary part of treating your illness.
In the health care system, many people fall through the cracks. A lot of people shrug and say “that’s just the way it is”. Sometimes the consequences aren’t too severe. Sometimes though, they are.
Mental health writer Natasha Tracy vividly shared the story of her own suicide attempt (trigger warning). If you’re able to, read it.
If you’re one of the people working in mental health who goes out of their way to help people in need, know that it can make a difference.
If you’re one of the people in mental health who sometimes lets people slip through the cracks because “it’s not my problem” this should hit you like a punch in the gut.
If you’re a politician, health ministry worker, etc. in any position to influence how the system functions, understand that this one incident encapsulates what it means to have a mental health system in crisis.
Now multiply that by the hundreds and thousands in comparably dire circumstances.
Now multiply that by the hundreds of thousands who are suffering because they can’t get mental health help.
Okay, intellectually that may be useful to think about the scope of the problem, but it makes it too abstract. It takes the feeling out of it. Focus back on that one person, that one story.
Now focus on you.
One person can’t fix the system, and nobody should get trapped into thinking that they need to personally make up for all the flaws in the system.
But one person can make a difference.
And a lot of people pushing in the same direction can change a system.
First off, my apologies for the lengthy delay since my last posting. We relocated from Alberta to Victoria, BC at the start of May, and the period before and after that has been chaotic to say the least.
As it happens, I’d like to talk about Alberta today. It’s certainly been politically interesting there the last few months, to say the least. If you didn’t see it, I want to draw your attention to a recently announced review of the province’s mental health system, which the premier accurately acknowledges “has failed too many Albertans.” (Kudos also for getting Dr. Swann, a Liberal, involved).
I’d like to chime in on exactly how Alberta’s mental health system has failed Alberta. I’ll focus mostly on the outpatient side, but first…
I’m sure this will be the item that gets the most coverage. There aren’t enough mental health beds, and too many are for crisis patients only. If people need acute inpatient treatment, but are passed the point where they are certifiable, there are not enough resources around. Which of course leads to the revolving door of crisis admission, streeted, relapse.
It’s hard to access the mental health system if you’re not in crisis. There are a number of entry points (help lines, community clinics, family doctors, etc.), and efforts at stigma reduction are helping. Yet, too often these entrances are “locked”.
What I mean by that is people get turned away, either because they don’t meet criteria for whatever program they’ve approached, or they’re told by someone, often their family doctor, that they’re fine and don’t need any help. As I’ve said before, too often after working up the nerve to talk to someone in the first place, they get shut down when they first try. Particularly when its a medical professional telling you you’re fine, what are you supposed to think? How often do you try again?
Even if you are getting help from someone, if you reach the limit (for whatever reason) of what they can provide, too often you’ll get a “sorry that’s all I can do for you” and not get directed towards further help. There’s not someone following behind to make sure you get the care you need. It’s very easy to end up in what I like to call mental health limbo.
There are lots of different providers, ranging from individual psychiatrists, counsellors, community mental health clinics, crisis teams, mental health workers associated with Primary Care Networks, etc. Again, beyond crisis work, there isn’t a lot of coordination even when it comes to the mandate of each group. Local decision making can be good, but if a PCN is deciding what services it offers, it doesn’t mean there still aren’t a lot of important services that aren’t being provided anywhere in the community. Most often actual evidence-based, effective treatment.
There are lots of different mental health providers, in many professions. They all can do different things. Many of them are excellent at what they do. Many others are not.
Sending someone with an illness that responds best to treatment A (whether meds, a certain type of therapy, etc.) to a provider who only offers treatment B is not helpful. And rarely is there oversight from anyone to intercept or abort a poor match, leaving the responsibility up to the patient and/or provider.
And poor providers (or charitably, poor fit between patient and provider) are legendary. We had one group of completely unrelated providers that offered such a horrible experience to so many patients (a psychiatrist, a community clinic, and a therapy program) that we referred to the patients who had unluckily found their way to see all three in the past as “winning the trifecta”.
(To say nothing of being sent to what you think is a psychiatrist, and finding out that they aren’t actually qualified in Alberta as a psychiatrist!)
This is all made worse because people generally have a poor understanding of mental health treatment and providers, and so will have a difficult time identifying a poor treatment or treatment provider. They’re counting on the system to ensure they’re getting the right care.
Their trust is misplaced.
What measurement occurs in the system usually revolves around capacity in one form or another. Number of beds, number of therapists, number of patients seen, number of contact hours, etc.
If someone gets seen ten times, that’s what the system tracks. Nobody is tracking whether that person is better afterwards.
We may feel good saying we’ve added X number of beds or therapists or whatever, but if they’re not actually helping people get better, are we any further ahead?
People get stuck going around in circles in the system for years on end. Every few years they might get sent to another psychiatrist for a consultation and another set of recommendations. But even if they’re not getting better, the cycle continues. It’s rare that someone stands up and says:
Wait a minute. Why do we keep doing the same thing again and again and expect different results?
Nobody is keeping track of how many years of someone’s life is wasted in mental health limbo. As long as they’re still seeing a treatment provider, the system is happy. Shouldn’t there be a mechanism that catches people in these situations and escalates them to a higher level of care, e.g. a psychiatrist who will spend more than half an hour with them? Or any kind of mechanism to look at what care this person should be receiving?
The root cause of all of this is that there really isn’t a coherent system underlying mental health, just a disparate network of providers.
And navigating that network of providers is not easy, particularly when very few people have the necessary knowledge to understand both their individual needs and the providers. Often there is nobody, not even their family doctor, who can effectively help them.
The concept of patient navigation comes up a lot in other areas of medicine, e.g. cancer care. It’s not perfect, but it helps people find their way through a system, and know where to turn when they get lost.
When it comes to mental health, we could use a little less thinking in terms of episodic care, and a little more thinking in terms of patient’s long term navigation within a coordinated system.
I wish for the best out of this review, and I hope it can escape the well-meaning platitudes and vague yearning to provide more resources. I don’t think fixing the system is easy. I do think identifying what is not working should be expressed in a way that is simple, straightforward and bluntly to the point.