‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis (2018) Chalder et al

There's been quite a few studies over the years showing mental health comorbidities in ME/CFS; here are some:

On psychiatric interview, 35% met a diagnosis of major depressive disorder, and 29% had an anxiety disorder. 1

Depression 47% and anxiety 39%. 1

Major depression 11%, generalized anxiety disorder 13%, and panic disorder 7%. 1

MEA survey of 4,217 patients: 46% reported depression and 38% anxiety or panic attacks as major problem (page 8). 1



There was also a poll on Phoenix Rising asking patients if they were depressed, and 38% said they were.

 

I have three things to say about this.

1) This is another case where it's absurd to name diseases for vague, common symptoms. Too easy to get a symptom confused with a disease.

2) The OP was talking about symptoms people might have (or likely, symptoms a survey that might or might not be relevant, would correctly or incorrectly indicate they might have) while having a biomedical disease. Whether the explanation stated on a forum discussion is medical, psychological, or social, or some combination, you cannot extrapolate this to mental health conditions. While someone certainly could have MS and BPD or MS and GAD, they might not make it into a study. And while I didn't read the text, it seems to be talking about secondary depression and anxiety, not primary.

3) While I would argue that clinical mental health conditions are biomedical like any other, people actually diagnosed with these do argue that they have these conditions, but the causes are social (poverty, etc.). Maybe the diagnosis is given too easily? Or maybe the social things are making their biological condition worse? I haven't worked that out. Of course, some people say they have CFS and the cause is social or stress, too. Sometimes people are a bit too good at finding patterns (and mistake correlation with causation).

Oh, and
4) Psychogenic is a specific thing and very different from citing social causes like poverty, and life events like major diagnoses, divorce, and so on, from having an effect on one's psychological health that is perceived.

In my best understanding of a psychosomatic model, the social or emotional causes are typically unperceived or avoided. And the mysterious physical symptoms arise instead of having a normal psychological reaction.

So no, there's no aid and comfort for BPS here.

 

@WillowJ: keeping it simple: psychiatrists/psychologists have always tried to convince people that mental diseases, as well as various physical diseases, are psychogenic rather than biological. That's their game: they deal in the psychogenic.

Historically, when there was no known cause for a physical disease, the psyches would often jump in and claim the disease is psychogenic. This applied to diabetes, hypothyroidism, multiple sclerosis, Parkinson's, and still (erroneously) applies ME/CFS, fibromyalgia, IBS, interstitial cystitis and others.

I believe that the psychiatrists/psychologists have got it totally wrong: for both physical and mental diseases, I think we will see in future that the causes are nearly always biological, not psychogenic.

 

Sure. I have no disagreement with that.

I don't see that this answers my post, as you seem to be mixing up different terms and models.

 

maybe I can make this clearer, @Hip .

Do you believe that people in general (and patients with other diseases) can have symptoms which might be termed fatigue, anxiety, or depression, without actually having the diseases of ME/CFS, GAD, MDD, or BPD?

If so, could those symptoms-that-are-not-the-disease-with-the-similar-name, come from overwork, lack of sleep, life events, etc.?

That's what I see being discussed by forum members on Page 1 of this thread. Symptoms-that-are-not-a-disease, being a natural reaction to life events.

 

In the 90s I think it was work was done to show that it all depended on which questionnaire you used to diagnose depression. One found that everyone with ME had it because fatigue was taken as showing you were depressed. if all the physical symptoms were removed (aches, unable to do what you used to do, problems with sleep etc) then no one was depressed.

There may be people with comorbid depression but I suspect that depression is used ambivalently the way they use fatigue; as a symptom as well as a discrete disease (since they now often call fatigue alone CFS)

People with ME and other chronic diseases experience grief and frustration as well as anxiety about money, relationships, loss of status and so on. This is normal life, and is a natural response to circumstances. If circumstances change the feeling goes.

However, when my children were young and I experienced extreme exhaustion, I would sometimes get a profound depression which I discovered would go with as little as ten minutes of sleep. We know much more about sleep nowadays; it is a dynamic process vital to well being which might be part of the disease process in ME.

My grandson is autistic with severe anxiety. His mind and will want to do things but his body seizes up. I have no doubt that something physical is going wrong in his brain.

Mental illness is complicated and not well defined. With more information on the brain and its workings, sleep and what it does in the brain the causes will be discovered. But social issues also cause distress which can be relieved by social means and those things can't be ignored. Semantics may be much of the confusion.

 

Difference is "regular" anxiety or depression vs pathological. It's not psychogenic when it's an actual threat out there, independent of your own mind. Someone worrying about losing their job because of planned layoffs is not creating their own anxiety, they're rationally apprehensive about a potential problem and the cascade of consequences that naturally follow. That's pretty healthy, IMO. Unless they freak out about it, but that's what turns the situation from normal to excessive worrying.

When there's a situation that will take 10x the normal effort to fix, I feel a little apprehensive. Like every time I use the car, will I get a flat tire, which would be ridiculously harder to deal with than in normal circumstances? Does it make me avoid taking the car? Never. Am I cringing the whole time I'm driving in fear and dread that it will happen? Of course not.

The mental health comorbidities have nothing to do with the disease mechanism itself, they are relatively common to all hardship. Anyone losing 95% of their income will naturally face some hardship, whatever the reason, as would the prospect of losing most liberty, a real consequence of any lifelong degenerative disease.

Those researchers are obsessed with excessive irrational worrying about what they consider to be perfectly normal circumstances. That's completely different. What they're describing is basically someone seeing a mole on their back who starts sending out grief letters on their planned and inevitable death from skin cancer by the end of the year. This is nothing like the rational response to stress, which is a healthy mechanism to make you pay attention to the things that can cause hardship in the future.

 

The study at the start of this thread is about comorbid clinically significant anxiety disorder with multiple sclerosis.

Normal healthy people can experience transient anxiety and also depression as a result of life events. If you see a dubious character walking towards you on the same side of the street at night you may feel transient anxiety. That's not the same as clinical generalized anxiety disorder or panic disorder.

 

Yes, it's a good idea.

That's a very useful distinction to consider. Though there can be some blurred boundaries between BIO 1 and BIO 2.

For example, if we posit that ME/CFS is due to a viral brain infection, and that infection in one part of the brain (eg brainstem) leads to ME/CFS symptoms, and in another part of the brain (eg amygdala) leads to generalized anxiety disorder (GAD), then both illnesses would be caused by the same virus, but by two infections in different parts of the brain.

So in that case, would GAD be considered to have a different biological cause to the ME/CFS, or the same biological cause?

Unfortunately it's not proven, and I expect most psyches don't believe it. That's why I have tried to argue the case for anxiety and depression being mostly likely caused by the biological processes happening in ME/CFS.

And in the case of anxiety, I could go into further biochemical and immunological detail to provide an account of how I think these biological processes may give rise to clinical anxiety disorder.

But these are theories and arguments, not proven facts. I wish they were proven.

I am not sure if that argument works that well, because for example the majority of ME/CFS patients do not have POTS, and don't have numerous other ME/CFS symptoms that are listed in the CCC. Each patient has their own subset of symptoms (although there are some core symptoms like fatigue that every patient must have if they are to satisfy the CCC).

I used the same argument in reverse earlier, when I said that the fact the majority of ME/CFS patients do not suffer from depression suggests the lifestyle restrictions of ME/CFS do not automatically lead to psychogenic depression. But my argument there was also weak for the same reason.

 

As someone who suffered for around 7 years constant clinical generalized anxiety disorder (GAD) at the moderate to severe level (which appeared after a viral brain infection I had in 2005), I can tell you that there is a huge difference between anxiety disorder as a clinical illness, and the regular anxieties that even healthy people can experience as a result of stressors or adverse life events.

There is no comparison. Moderate to severe GAD is a crippling disease which usually makes people lose their jobs, and often results in a total breakdown of their lives. It's not a trivial condition.

Though not all GAD is that severe. You can also have mild GAD, where you can continue to function in your job.

 

Thanks for your sympathies, Trish; though the reason I mentioned my experience (which I should have been clearer about) was really to point out that unless you have personally had clinical anxiety or major depression in their full power, you may merely assume that these illnesses are nothing much more than the regular anxieties or glumness healthy people have in ordinary life.

When a study talks about clinical anxiety in MS, I would think that these are levels of anxiety beyond extrapolation from the regular anxieties of ordinary life.



Lots of ME/CFS patients have heard disbelieving friends and family say: "Fatigue? We all get fatigue, but we get on with it. It's all in mind, you just have to have the right attitude". That's because they have no conception of the depth of fatigue of ME/CFS, and all its concomitant symptoms. They have no personal experience of feeling ME/CFS symptoms. Us ME/CFS patients all get very annoyed when we hear such comments.

Well I take the same view when people suggest serious mental health illnesses are psychologically-caused conditions (caused by life circumstances). I think it is just as damaging (to mental health research) to promote the view that mental health illnesses are psychologically-caused, as it is to promote the idea that ME/CFS is psychologically-caused.

I don't rule out psychological life circumstance factors in mental health; and I appreciate the psychological therapies can be helpful. But in my view the primary research focus on mental illness should be biomedical. They should be primarily researching dysfunction of the brain.


Given ME/CFS patients' appalling experience being told that their illness is psychogenic, I find it surprising that ME/CFS patients should then support the psychogenic view of serious mental illness.

 

Support for the psychogenic view was the crux of a comment made earlier in this thread. But as mentioned, it's not just in this thread where I have seen ME/CFS patients state their beliefs that mental illnesses such as anxiety and depression in ME/CFS arise from psychogenic factors.


Perhaps we have a different understanding of the term psychogenic. Psychogenic means having a psychological (mental) origin or cause rather than a physical one.

So the stress and emotional impact of adverse life events and circumstances fall within the psychological level of influence.

 

If I may comment as a casual onlooker (...can't speak for anyone, obviously, but wanted to comment anyway because I think this is a really important discussion to have - and what I have to say is really more aimed to refocus the metadiscussion than to add actual value since I'm kinda preaching to the choir anyway, sorry if it is a bit babbly and hard to process, I'm wading through thicker mists than I would like to right now):

I don't think Hip is attributing this propensity to be accepting of psychogenic views to anyone in an overly specific manner and rather tries to draw attention to the fact that we - collectively! - are pretty quick to say things like 'oh yes depression and anxiety are psychological in some way or other and that is totally different from what we are experiencing' which, I would assume, is a defensive stance that one takes in conversation to preemptively avoid the onslaught of 'so you deny my psychological theory of something here or there in general, therefore you are against my world-view and insulted my religion and thus I will brand you a science denier because I want to victim blame / make money off this / not bother that much and go against what I perceive mainstream thinking to be' that every single one of us must have been exposed to at some point by now.

This stance is intellectually dishonest since there is no good reason I know of to expect e.g. clinical depression or GAD to behave differently from other illnesses. Even if some of those things my be triggered by what would colloquially be accepted as 'psychological' - extraordinarily stressful time at your job, severe relationship trouble, death of a loved one etc. - according to everything I personally know of how brains work this trigger should need to physiologically break something in order to trigger one of the states we call a 'mental illness'. It is not pathological to be sad for an extended amount of time if your husband unexpectedly dies in a car crash. Such an event may well trigger a state that will then be actual clinical depression, or it may just leave you sad for years - as a normal emotional response to an extreme situation that isn't easily dealt with - without triggering said state, and possibly a bit of both since most of these things seem to exist on a spectrum. But I sincerely doubt that you can trigger clinical depression without physiological brain changes.
That leaves us with the problem that both states, overlapping as they may be, should entitle a person to some kind of appropriate help to deal with their situation (despite everything I say, talking through issues, emotionally processing events when you are ready and all the things along those lines are very real and useful - they just won't magically heal your clinical problem).

Psychiatry as a field is incredibly annoying because they garble their terms all the time and do not draw clear distinctions between pathological abnormalities and reasonable responses, but oftentimes simply declare any affect as something that needs to be treated while pathologizing the sheer thought of doubting their way of doing things by the 'power vested in them'. Even the 'psychogenic' concept means different things to different people with subtle differences - some include 'having wrong thoughts', others seem more to think of 'getting beaten up and being more hung up on the violation of trust in people than the bruises' etc etc, so the concept in itself is not really that useful for communication between people in practice.

A very similar thing others have already touched on shows up in the paper this thread is about in the sense that I always get the impression at least half the people in this field seem to think like 'My hypothesis is that anxiety might be a bad experience. I have conducted a study which concludes diagnosing people with MS gives them anxiety. Therefore, not diagnosing people with MS or telling them not to have anxiety absolves them from having a bad experience' because they have no reasonable framework to work off. One might argue that I wrongly attribute this to how psychostudies are worded because I am an outsider to said field, but about 80% of the conversations I've ever had with someone inside any psycho-oriented field taught me otherwise.


The tangent to all of this is of course that a great deal of what is sold as 'therapy' in psychological circles is very thinly-veiled (and obviously entirely unhelpful) victim blaming which is supposed to somehow cure mental illnesses and emotional states alike, increasing the blame if said process fails and bringing down the fury of a religious fanatic if one dares to question the validity of this approach.
This entire thing is mostly relevant because of the larger context how our society works currently - if the western world didn't happily kill off cripples by denying them adequate care, blaming them for the audacity to be sick and denying them the very necessities to stay alive for the continued audacity to not do the impossible and be healed by the disgusting circle of abuse they are subjected to, the way we lead the strawmandebate around the entire psycho/physio-dichotomy wouldn't have the same impact. But it is what is is.

In my opinion, it is our job to call out this kind of violence instead of reinforcing it whenever possible and also shed ourselves from the need to enable and emotionally shelter the very people who victimize us and other patients. It may be true that there are times where this discussion will not be appropriate to be had when because of time- and similar constraints, but it is probably not helpful to open with 'well of course I do support psychologizing other serious illnesses, but...' whenever we talk about non-ME entities in the grand scheme of things.

 

Yes, it's more the more the views of the ME/CFS community in general that I am referring to, rather than focusing on anyone in particular.



Of course, it may also be the stigma of mental health that plays into this. There is a stigma surrounding mental illnesses that you don't get with physical diseases.

So if you ask an ME/CFS patient (or anyone for that matter) whether they are suffering from anxiety or depression, because of the stigma of mental illness, they may not want to admit it (not even to themselves), and thus may prefer to pin the blame on their circumstances.

So that could be the reason some ME/CFS patients say things like "who wouldn't be depressed if you had the limitations imposed by ME/CFS". By saying that, you don't have to admit even to yourself that the depression is part of the core "you", as you project the cause of the depression onto your external circumstances.

You think to yourself: "I am mentally normal, it's just the external circumstances that cause the depression". That way, you can avoid the stigma. And this is perfectly understandable, because nobody wants to believe that their core self is mentally abnormal.


I actually do a similar thing: I say to myself: "I am mentally normal, it's just the virus or inflammation in my brain that causes the depression, anxiety, etc".

I find that also helps dealing the stigma, because I am able to separate myself from these exogenous factors that led to my mental health symptoms.

 

Firstly, I too am sorry if Hip or anyone else felt offended. I was trying to smooth things over and, as usual, failed.

Yesterday I saw nothing in the abstract which indicated this. Perhaps I missed it because they didn't mention any diagnoses.

Today I double-checked and I saw "clinically significant anxiety". It's possible they meant to indicate people being diagnosed with specific diseases, although it's hard to tell for sure from the abstract.

Coming from Chalder & co, though, I would wonder if another possibility might be they are acting kinda similar to my ex-cardiologist: "You have tachycardia. Sometimes this is from anxiety." Me: "There could be other causes as well." Doctor :shrugs: Doesn't refer for psychology/psychiatry. Diagnoses "inappropriate sinus tachycardia." Doesn't have a follow-up plan of any kind.

Current cardiologist. "You don't have inappropriate sinus tachycardia. You have appropriate sinus tachycardia, because your blood pressure is low and your heart rate is going fast to try to increase blood flow to compensate." Gives me a medication to increase blood volume and asks me to return in 1 month.

I do think that's a fair criticism as a criticism in general that some people with ME do tend to say depression, anxiety, and sometimes even ICF/CF/"CFS" can be psychological (though on this thread in particular I guess other people made the same mistakes I did and weren't knowingly doing that--thinking to discuss symptoms-not-diagnostic-of-mental-diseases), but that's still different from saying psychosomatic/psychogenic.

The idea of mental disorders focuses on what kinds of symptoms are noticed, not on the presumed cause:

http s://psychcentral. com/disorders/

Of course, untreated diabetes could cause symptoms like that to be noticed most prominently, too (anecdote from Dr. Hyde). As noted on this thread, acute encephalitis could have features like that also.

Psychogenic/psychosomatic comes with a presumed cause built in. That's very, very different and I think we as a community could do better at drawing the distinction between psychological and psychogenic.

 

Yes it is hard to tell from the abstract alone, but "clinically significant" does suggest that they are talking about clinical anxiety conditions such as generalized anxiety disorder or panic disorder, rather than just the ordinary anxieties that even healthy people have.

I do appreciate what you said about psychosomatic conditions versus mental health conditions. Perhaps we can expand on the difference:

We normally divide the human being into its physical and mental parts:

The physical level is their body and brain, and all the physical factors that can physically affect the body and brain, which include your genes, environmental toxins, infectious pathogens, or a blow to the head by an axe-wielding manic.

The mental level is the mind, and all the psychological factors that can, through input to the mind via the senses, psychologically affect the mind, such as emotionally stressful events or circumstances, the type of job you do, the set of friends you have, the way you were brought up, and even the books you read or the TV programs you watch. All those impact the mind.

So when we consider physical and mental diseases, the initial assumption is that in either case, these diseases may involve physical or psychological factors as possible causes.

Thus we have the initial possibility that:

(1) Physical diseases may be caused by physical factors and/or psychological factors (for the latter we call them psychosomatic diseases).

(2) Mental diseases may be caused by physical factors and/or psychological factors.

I am sure I don't have to spend any time convincing people here that the idea of psychological factors causing physical diseases (psychosomatic causality) has a weak evidence base, and has been somewhat of a red herring in disease causality research. We've found that physical diseases are pretty much always caused by physical factors.


But what I am focusing on in this thread is the weak evidence for mental diseases being caused by psychological factors. In fact psychiatry and psychology have spent the entire 20th century trying to show that psychological factors are the cause of serious mental illness, but have failed miserably.

In some ways, one can understand why they thought that mental illness might be caused by psychological factors, if you think in terms of a like-causes-like scenario. If physical factors cause physical diseases, then perhaps psychological factors might be the cause of mental disease. That makes sense simplistically; but the fact is that for most mental health conditions, psychological factors have not in generally proven causal, and psychological theories like the "refrigerator mother" theory of autism are now consigned to the scrapheap of scientific history.

So perhaps somewhat counterintuitively, the evidence suggests that like-causes-like does not work for mental illnesses, and that mental ill health is thus likely due to physical factors.

I think that in a 100 years from now, we will see that in the case of both physical and mental diseases, the causes are nearly always physical factors that affect the body and brain, not psychological factors that affect the mind.

 

I don't think anyone has the answer to that yet.

Edit:

But ME might not turn out to be one discreet illness. So perhaps some versions of ME come along with physiologically caused mental health problems while some do not.

This thread has been most enlightening 9/10.