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

Discussion in 'Health News and Research unrelated to ME/CFS' started by Sly Saint, Dec 30, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Moderator note
    This thread has been split off from this thread about fatigue in MS and ME.


    ‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis


    Chalder

    Objective: A qualitative study of PwMS who had clinically significant levels of anxiety was conducted to gain a richer perspective on their experience.

    Results: Although participants thought different factors had initially triggered their anxiety, being given the diagnosis of MS appeared to be the most significant factor for many participants.

    Conclusion: This review confirms that anxiety can have many negative implications for PwMS

    https://www.tandfonline.com/doi/abs/10.1080/08870446.2018.1541989?af=R&journalCode=gpsh20

    no kidding.
     
    Last edited by a moderator: Dec 31, 2018
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    In other groundbreaking news at the cutting edge of science: water is still tremendously wet when you account for all other factors. More research is needed to identify why a belief in the wetness of water leads to a more thorough wetness of individuals put in contact with water.

    I sense a Nobel in the making. This is, like, shattering all concepts of self and order in the universe.
     
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  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    The full paper is behind a paywall so I can't access it. But it seems to me that it's unlikely that they bother to define their terms. To me this is a quite usual oversight. Perhaps among medical/psychological professionals there is an agreed meaning of terms but even so I think there is room for that to be in error.

    I do not consider myself an anxious person. Yet I have experienced anxiety over the decades. After some time of experiencing multiple episodes I have formed a conclusion that my anxiety can have different causes.
    To the point that they might benefit from different names or at least have a description attached that identifies what kind of anxiety is being talked about.

    As an example I have had episodes where I've been experiencing perfectly normal days (for me) preceding an episode of massive anxiety that wakes me up at night. The first time it happened I thought that I was having symptoms of a heart attack. After confirming I wasn't I then learned to 'ride it out' when it happened again.

    I have also experienced anxiety when faced with something I wanted to do but felt resistance to doing. At first I didn't understand this either. I came to realise that I was experiencing a quite understandable resistance based on knowing (without it being completely conscious) that the activity would be too much for me. When I was more mildly affected this would have been a little more subtle than it would be now.
    And it wasn't just only physical energy as we would first think of it but I had for example this problem when going to shopping malls. I learned to pre-medicate myself with pain reliever because the experience of all the lights, noise, activity around me, and the need to look at so much in order to choose my purchase was more than I could cope with. I'd end up with a headache later. My anxiety lessened when I found the pain reliever helped for a time and I could do what I needed to do.

    This might not have any relevance to this particular research perhaps. But if you're going to do such research you'd think it important to be clear about what it is you're discussing. And while they may have done so in the full paper, I have my doubts.

    I expect they thought only of anxiety as something you experience because you are upset about what a diagnosis means to your ability to get on with life. This is also an issue though I doubt they appreciate it's full meaning either thinking they would function so much better than the rest of us and without taking into account various circumstances. But that may be ungenerous.

    Anyway, longish post about one specific that might or might not be meaningful FWIW.
     
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Some nutritional deficiencies will manifest as anxiety.

    In many chronic diseases there may be such deficiencies, due to gut dysbiosis/ genetic/ epigenetic expression.....

    Sadly, this is rarely considered.
    @Hip had a thread at the other place re anxiety and supplementation that made a lot of sense.

    Rich von K' s theory was based on folate deficiency, and his protocol did seem to help some.

    Two care homes i work with routinely screen new admissions for vitB12 deficiencies and regularly find behaviour that has been attributed to early dementia by GPs is due to vitamin B12 deficiencies. This is changing, but slowly .
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    The weirdest part is they are supposedly experts on the subject and seemingly can't bother to tell reasonable anxiety from irrational anxiety. Anxiety is about being apprehensive that bad things are about to happen. It's perfectly healthy when bad things are about to happen. That's actually the normal response anyone would expect. Bit similar to how people who are sick accept and adapt to the fact that they are sick instead of denying their own reality. That's the normal reaction and being in denial that there actually is a genuine disease does not change that and is actually often harmful.

    As the joke goes: it's not paranoia if they really are out to get you. With chronic illness usually comes hardship and poverty, two very rational sources of problems in one's life, for which someone would be rational to be anxious about because it constantly creates new hardship, on top of previous hardship that doesn't magically go away. It's just a fact that bad things happen in this context and puzzling over why people react normally in a situation that should generate anxiety seems completely absurd and a complete waste of resources.

    It's like they have no concept or understanding of the reality of being ill. They look at people behaving normally given the circumstances and can't believe people would behave this way when they themselves seem certain that it is an overreaction or that if it happened to them I guess they believe they would behave differently? I don't know, it's just weird. Seems that in studying abnormal behavior they can't tell the difference between normal and abnormal behavior anymore. Everything is a either a nail or a nail-shaped thing.

    It's like they're looking at a group of people who have difficulty swallowing anything and are puzzled as to why they are always thirsty, trying to figure out ways to make them feel less thirsty instead of, I don't know, giving them a drip-feed? The thirst is the direct and logical consequence, no need to waste any time being puzzled over this.

    Anyway, water will wet things it touches, get over it.
     
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  6. chrisb

    chrisb Senior Member (Voting Rights)

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    There are interesting analogies to be drawn. It seems that the paper acknowledges that anxiety was for many a response to the diagnosis of MS. Is it, therefore, to be regarded as a, or, indeed, the, perpetuating factor for MS? Would CBT for the anxiety, to overcome dysfunctional cognitions about the illness and the illness attributions, be expected to lead to recovery from MS? If not, why should it in ME?

    It remains a puzzle to me where this idea of anxiety being a cause of ME, or at least the cause of the perpetuation of symptoms in ME, came from. So far as I can see the first time that this was mooted was in the Wessely and Powell paper in 1989. I can only imagine that the idea came from Goldberg who seems to have assessed mental illnesses on axes of depression and anxiety, but as yet I have found no citation for that. It does not appear to have played any significant part in Pilowsky's analysis, and he was supposedly the driving influence, though never to be mentioned again. It is beyond odd.
     
  7. Hip

    Hip Senior Member (Voting Rights)

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    The above is a view often expressed on ME/CFS forums.

    It's rather ironic that ME/CFS patients are the first to vehemently argue against psychogenic causes for ME/CFS, and rightly so. Patients assert that the physical and mental symptoms of ME/CFS are not caused by psychological factors, but by the underlying biological dysfunction of this disease.

    But then when it comes to conditions such as anxiety or depression that often appear in ME/CFS and other neurological diseases, ME/CFS patients suddenly do an about turn, and are the first to try to explain away these conditions using a psychogenic argument, in a way Wessely would be very pleased with!

    Go figure!
     
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  8. chrisb

    chrisb Senior Member (Voting Rights)

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    Could you please explain how you reach that conclusion from the paragraph which you quote. I must be being dim even by my standards.
     
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  9. Hip

    Hip Senior Member (Voting Rights)

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    I didn't reach that conclusion from that particular quote; I mentioned that the views in the paragraph quoted I've often seen expressed on ME/CFS forums.

    When it comes to all the core ME/CFS symptoms, patients are vehement that these are biologically caused, by the underlying physical pathophysiology of body and brain.

    But as soon as it comes to the mental health comorbidities that ME/CFS patients often experience, such as anxiety and depression, instead of arguing these also likely come from the same underlying pathophysiology that affects the brain, ME/CFS patients will often provide a psychogenic explanation for these mental symptoms, suggesting they arise from the life circumstances that ME/CFS throws you into, rather than the brain pathophysiology.

    I think that anxiety and depression in neurological diseases such as MS, Parkinson's and ME/CFS are likely mostly due to the physical pathophysiology of the brain, rather than the life circumstances.
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    :D

    @rvallee sometimes, you express what i am sort of thinking but cannot articulate, in such an eloquent, razor sharp & amusing way... it makes me very happy :) thank you
     
  11. Sean

    Sean Senior Member (Voting Rights)

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    I don't see that they are mutually exclusive. It is possible to have both factors in play.
     
  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Personally - and with clients - I define 'anxiety' and 'stress' differently.

    Stress is caused by external factors: illness, poverty, discrimination, confrontations...and they cause physiological reactions (tenseness, quick to anger, high blood pressure...)

    Anxiety is caused by an internal physiological process / organ that is dysfunctional for some reason (like ME).

    Ditto with depression, it can have external or internal causes. (And more likely both if you have ME in our society.)

    Stress and anxiety manifest bodily in very similar, but not identical ways - but the source is different. I can clearly tell the difference in my own body as I can easily point to the external factor causing my stress, but anxiety is a purely physiological event (perhaps part of the whole messed up HPA).

    Psychobabblers argue ME is caused / sustained by stress/anxiety - and often conflating the 2 terms / concepts.

    Yet ME patients say ME causes both stress and anxiety.

    (And I would argue that ME folks would have significantly less stress if we weren't discriminated against and traumatized by the medical / social system.)

    So I'd say stress is socially caused, and anxiety is physiologically caused.
     
  13. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I can vouch for 2 kinds of anxiety from personal experience. The kind that 'just happened' and took over my body was very strange to experience and I have had 2 episodes of it. There was no environmental, experiential or physiological reason for it that I could fathom; I was ill, but nothing had changed in that or my other circumstances. It just started out of the blue like someone taking the handbrake off a car on a hillside letting it roll away. It passed both times on it's own after a few months.

    I've also experienced the anxiety that bad things are going to happen when bad things are going to happen. It's distinct from my experience of a physiological process that is triggered physiologically and has nothing to do with my mental state. Neither perpetuate my ME symptoms.

    Those people may be speaking the truth from their own individual experience.
     
  14. Hip

    Hip Senior Member (Voting Rights)

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    So you believe that a biopsychosocial model, involving physical and psychological factors, likely underlies mental health conditions such as anxiety and depression that appear in neurological diseases such as MS? Judging by the Likes your post received, so do others here.

    But I expect at the same time, the same people would fiercely deny that the core mental symptoms of ME/CFS are biopsychosocial. ME/CFS mental symptoms listed in the CCC include these emotional symptoms:

    • Emotional lability (pseudobulbar affect) = unstable or exaggerated emotion
    • Emotional unpredictability, emotional disability, emotional disturbances
    • Hypersensitivity to emotional overload
    • Emotional flattening

    Cognitive dysfunction (brain fog) is also classified as a mental symptom in the DSM, but again most ME/CFS patients I expect would strongly deny that their brain fog is psychologically-caused, or involves a BPS model.


    So I find it paradoxical that on the one hand, ME/CFS patients often support the biopsychosocial for some mental symptoms like anxiety, but on the other, the same patients will vehemently deny the BPS model for the core ME/CFS mental symptoms such as the emotional and cognitive symptoms.

    Perhaps you could explain the reasoning on this paradox. Why ME/CFS patients are fiercely against BPS for the core ME/CFS symptoms, but support BPS for some of the comorbid mental health symptoms like anxiety and depression that can appear alongside ME/CFS and other neurological diseases.

    This is important, because the whole ME/CFS community has fought a long hard battle against BPS views of ME/CFS. We need to make sure we are conceptually clear on this.



    My view is that psychologists and psychiatrists have been far too quick to propose psychogenic causes (life event factors) for mental health conditions, and far to slow to consider organic biological causes of mental symptoms.

    Sure, there are some mental health conditions such as depression that can be caused by both psychogenic factors and/or organic biological factors. But where organic neurological disease is present which affects the brain, in my view depression is far more likely to be caused by organic brain disease.

    And even in general, even in the absence of overt neurological disease, my view is that major depression is far more likely to be caused by organic brain disease. I know several people who developed major depression after catching my ME/CFS-triggering virus, coxsackievirus B4. Depression has been linked to brain inflammation, which chronic viral infection may cause.

    I don't believe that psychogenic factors (life event factors) are much involved in mental health conditions such the various anxiety disorders (like GAD, panic disorder, OCD, social anxiety), bipolar disorder, SAD, schizophrenia, psychosis, autism (which is believed in France to be psychogenic), anorexia nervosa, dissociative disorders (like depersonalization), etc.

    Adverse life event factors can certainly be harder to bear or cope with once you have a mental health condition. For example, once you have generalized anxiety disorder (GAD), your ability to cope with life's stressors is greatly reduced. But that is not the same as saying that GAD is caused by life's stressors.



    I think the study of mental illnesses in general is in the same dire state as ME/CFS, with far too many researchers believing that mental illness primarily arises from psychogenic factors, rather than arising from a physical pathophysiology of the brain.
     
    Last edited: Jan 1, 2019
  15. strategist

    strategist Senior Member (Voting Rights)

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    Maybe that's the model that makes sense for many ME/CFS patients? I can have significant impairment in every day life but still surprisingly good mood, which suggests that poor mood is caused by different things than the impairment. I did have a period of depression but it seemed to get better once I and my family became more accepting of the illness. I don't believe poor mood is an integral part of the illness. It also seems way easier to treat.

    I'm generally interested in biological explanations for mental health symptoms, especially when the problem is severe.
     
  16. Hip

    Hip Senior Member (Voting Rights)

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    Yes it is important to distinguish external life event stressors from the feeling and state of anxiety that those stressors can produce.

    The feeling and state of anxiety is a normal response to stressors, a normal response that is present in healthy people. When stressors such as a dangerous or scary situation appear, our brain's anxiety circuits (such as the amygdala) switch on, no doubt as a survival response.

    However, when these anxiety circuits get permanently switched on by some brain malfunction, without there being any external stressors, that's generalized anxiety disorder.

    Of course once you have GAD, life's stressors become hard to cope with, because you already have high anxiety levels even before the stressors appear. But that does not mean the stressors caused the anxiety disorder.
     
    Last edited: Jan 1, 2019
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  17. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Maybe they reached this conclusion because it matched their life experience, which is to say they don't suffer from these symptoms all the time!?!
     
  18. Trish

    Trish Moderator Staff Member

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    @Hip, I'm having trouble understanding what you are getting at.
    As I see it, symptoms of anxiety or depression can occur for two reasons:

    1. Some factor in the person's life, such as financial worries, loss of career due to illness, lack of medical care, feeling trapped in a situation etc. can cause symptoms of anxiety and/or depression. I have experienced both of these myself - anxiety when there's a benefit claim hanging over me that will materially affect my finances, and depression when I had to give up work because of my illness. These were alleviated by getting the benefit awarded, and by coming to terms, slowly, with the loss of career.
    Currently I would say I don't suffer from more than the expected level of either depression or anxiety that's part of coping with life with a disabling chronic illness.

    2. It is likely also that some people with ME also suffer from the other sort of anxiety and depression that originate, not in circumstances, but in biology. The only taste of this I have experienced in my life was the regular monthly several days living in a premenstrual 'black cloud' of weepy depression that would magically lift at the start of my period. It had no connection with my life circumstances, it was purely biological. I can see that it is possible that there may be part of the biology of ME itself that may for some sufferers lead to a biologically caused anxiety or depression too.

    I don't see any problem with recognising that pwME can suffer mental health problems from external or internal factors. That doesn't mean I think the BPS model or CBT are in any way relevant to ME.
     
  19. Hip

    Hip Senior Member (Voting Rights)

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    Well let's give some background context, to put it into perspective:

    In psychiatry, the default assumption for the most part is that mental health illnesses, even severe ones like schizophrenia, are primarily caused by psychogenic factors (ie, by life events and circumstances, like the way your mother treated you when you were a child). The view that mental health is due to biological disease or disfunction of the brain is a minority view in psychiatric research.

    I think psychiatry has made a huge mistake here, and thus over the decades has wasted untold amounts of research funding pursuing this untenable idea mental health is primarily caused by psychogenic factors. This money would have been better spent on biomedical research into mental illnesses.

    Thus the grave setbacks psychiatry has caused in the world of ME/CFS by framing ME/CFS as a psychogenic illness are, in my view, merely the tip of the iceberg of the overall terrible damage psychiatric research has done: psychiatry's psychogenic bias has done much more damage to the world of mental health research than it has to ME/CFS.

    Even Peter White (of all people) said in a paper a few years ago that the latest evidence is indicating mental illness involves biological factors in the brain. So this field is slowly recognizing that they may have got it dreadfully wrong.

    I should add that I am not against psychological therapies, which, in the absence of effective means to cure the biological factors in the brain creating mental illness, may be all that we have at present. I am just saying that I think psychiatric research has done a huge disservice to humanity by their focus on psychogenic causes.




    It's not impossible that mental health issues such as depression could in some cases arise from life circumstances, but given we know brain abnormalities are found in ME/CFS, and given that data shows around 1 in 3 ME/CFS patients are depressed, which is high percentage, it seems far more likely to be biologically caused rather than by life events and circumstances.

    A lot of ME/CFS patients have very restricted lives due to their illness, but do not suffer from depression. Which suggests that the restrictions are not an automatic cause of depression.


    As for generalized anxiety disorder (GAD), no I do not think this can be caused by life events. Normal healthy people can experience anxiety caused by life events, but normal anxiety tends to be transient, because there are very few life circumstances that create constant stressors leading to constant anxiety (living in a war zone is one of the few examples of where there may be near constant stressors).

    Whereas with GAD, the anxiety is fairly constant, present every day, and from morning to night, even though there may no stressors present.

    I think the psychogenic view of generalized anxiety disorder is untenable. (But of course once you have GAD due to biological brain dysfunction, then the stressors in life will seem even more stressful and anxiety-provoking).
     
    Last edited: Jan 2, 2019
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  20. Trish

    Trish Moderator Staff Member

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    Thanks,@Hip. Can you give the references to research showing 1 in 3 pwME are depressed?
     

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