1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Naturopathy: Happy Anniversary to Me and Dr. Upcott
It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS...
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Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

Discussion in 'Latest ME/CFS Research' started by snowathlete, May 31, 2013.

  1. Bob

    Bob

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    Hi Richie, a very big welcome to the forum :)

    Just to clarify, "2e" means "secondary". (But I've not seen the use of '2e' before now.)

    I absolutely agree with much of your post, but I disagree with the bit about depression not being secondary.

    In medical terms, a secondary condition is considered to be caused by the primary condition.
    So, in the scenario, where depression is 'secondary' to the ME, it would be considered that if the ME was successfully treated, then depression would no longer be a problem.

    That's not to say that the depression can't be debilitating for ME patients, or perhaps even sometimes a patient's biggest complaint.
    In the case of ME, what it means is that if the ME is fixed, then the depression would resolve itself.


    If depression is considered 'primary', then it's classed as an independent condition, and the main problem to be fixed, so that the main focus should be on resolving the depression. If ME was considered to be 'secondary' to the depression, then it would be considered that if the depression is treated successfully, then the ME would resolve itself. (Clearly the evidence does not support this.)

    It's also possible to have co-morbid conditions, which both arise independently. So if a condition is considered to be 'co-morbid' to the ME, then it would be considered to be independent of the ME. (Depression would be demonstrated to be 'co-morbid' if it still existed if the ME was successfully treated/cured.)
    Last edited: Nov 8, 2013
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  2. MeSci

    MeSci Activity level: 6

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    So they actually listened to you, did they? If so, count yourself lucky. I do the explaining, spelling-out, etc., complete with scientific evidence, but they ignore it and treat me like an idiot.
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  3. MeSci

    MeSci Activity level: 6

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    Thanks for the clarification re 2e, Bob.

    As well as conditions that arise independently, there are conditions which have the same underlying cause. In my example, both ME physical symptoms and anxiety are relieved by a change of diet, so it looks as though leaky gut is involved in causing both.

    Indeed, the typical high-grain, high-sugar diet of people in industrialised countries is implicated in a wide range of conditions. This may include both physical and mental illnesses.
  4. Firestormm

    Firestormm Content Team Lead

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    I never do the science-sell. It's not me. I wanted the sleep study and that's what I got. 3 nights observation or something. Those in the Service also wanted my cognition checking out - but we never got to talk about that this time. I found it difficult trying to make myself understood - English was not his first language - but then realised afterwards he may well have been testing me. Sod it. I have to stop second-guessing. Drives me nuts :)
  5. user9876

    user9876 Senior Member

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    It is even possible to have a co-morbid conditions where the treatment for one condition also has an effect on the other. I think this is what initially happend with Rituximab where it was given for lymphoma to a person who also had ME and it was found to have an effect on both. There is also a story about a patient who was having psychotic episodes and also got pneumonia and was given an antibiotic for the pneumonia but that also helped reduce the psychotic episodes.

    Hence a condition may be assumed to be secondary however the links may be due to the treatments rather than a causal chain between a primary and secondary condition.
  6. Richie

    Richie

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    Sorry 2e - short for secondary.
    Very important for clinicians (esp ME sceptical ones) to know about gut-brain, immune activation causing depression etc.
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  7. Richie

    Richie

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    Hi Bob
    I think you have misunderstood/misread me. I do indeed believe much co-morbid depression experienced by pwME/CFS/FM is secondary but that this is to be differentiated from co-morbid depression arising from the same organic processes as the fatigue etc. I feel Dr E and other advocates of biophysical ME are prone to forget that much mental illness is biophysical , on which i think we agree. It is well intentioned but makes us vulnerable to attacks from the psychologisers who accuse us of dualism and contempt/misunderstnding of mental illness - while ironically and contemptuously reducing our physical illness to a simplistic psycho-behavioural concept, which they would never dare apply to conditions which are considered indisputably to be mental
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  8. Valentijn

    Valentijn Activity Level: 3

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    It's certainly within the realm of possibility.

    But I have yet to see any proper research showing it. Thus far it's all just questionnaires where symptoms, actions, and inactions are presumed to be caused by mental illness, even though physiological ME issues account for those same symptoms, actions, or inactions.

    And it seems unlikely there will ever be any useful research in the area. Most of the researchers who can handle "science" are focused on biological dysfunctions, and most of the researchers focused on psychological research seem to deliberately use inappropriate questionnaires to support their hypotheses (and jobs).
  9. MeSci

    MeSci Activity level: 6

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    If only they did...before I had ME 'proper' I had IBS on and off for much of my life. I noticed at one point that when I had IBS symptoms my legs also became very weak. When I raised this with my GP he dismissed it, saying that the two could not possibly be connected!
  10. biophile

    biophile Places I'd rather be.

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    Perhaps in some cases of depression, ME/CFS is the "biological" component in bio-psycho-social? After reading about the severe problems with diagnosing depression in ME/CFS and the scandalously poor research in relation to that, one can become skeptical enough to start forgetting that psycho-social factors do have an impact on mental health.
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  11. Bob

    Bob

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    Hi Richie.
    I think I see what you mean.
    I think in the scenario that you are describing, then the fatigue and the depression would be symptoms of the same underlying disease process (which I would describe as 'ME'), in which case I think depression would be described as 'secondary', as it was caused by another primary disease process. It would only be described as 'comorbid', if the depression was not related to the ME, but has arisen as a result of an entirely unrelated disease process.
    I was coming at it from the angle of the term 'ME' describing the underlying physiological processes that causes the associated fatigue and any associated neurological problems.
    But, yes, I acknowledge that it is extremely complex, and not at all straightforward, as all the recent posts have pointed out.
  12. Richie

    Richie

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    Nice to exchange opinions.
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  13. alex3619

    alex3619 Senior Member

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    Mostly I agree. However I do not consider ANY "mental" illness to be indisputably mental - it is probably all biophysical. No purely mental illness has ever been strongly validated, and many are nonscientific as they cannot be tested; they are just accepted definitions, typically accepted by consensus. I do not even agree that the mind exists, its simply a convenient simplified description of brain activity. Its dualists who emphasize mental disease, or people who have hung onto the terminology which is still engrained in the language. As soon as they speak of how bad dualism is, then they have lost the debate though they will fiercely resist admitting that - and I can elaborate on this point if people want me to. Thoughts exists, brain exists, mind is physical. In time I suspect that psychiatry may disappear and all that will be left is neurology and psychological counselling, which will be separate.

    Psychiatry is an historical kludge wedged firmly between these two other disciplines. Very few "mental" disorders have any degree of objective validity, and these typically have neurological or biochemical tests, scans, blood tests etc., that can support something is physically wrong with the brain. In the case of epilepsy there are electrical abnormalities, its neurological. Schizophrenia often has physical abnormalities in brain structure. Depression has both electrical abnormalites and often immunological ones. Psychological methods can be used to help manage some of these but they are not cures. Similarly drugs can alter brain function - but they are not cures as we are tinkering with the peripheral mechanisms generally, not the core problems which are not understood.

    I have never bought the argument that we fear/deride/dismiss "mental" illness as illness. What we dispute is bad medicine, bad science, and dodgy treatments, and the doctors who support those. I have talked with no patients I can recall who have the view of avoiding "mental" diagnoses due to stigma ... indeed I see a CFS diagnosis as at least as sigmatised by society, and even family and friends, as most "mental" illness. If there are patients like that (and I presume there are, particularly new patients) then they are likely rare, which means that they are likely rare in clinical practice (though it might depend on the practice) so its likely such generalized claims are fictitious. Yet they wonder why we want evidence and good science? When psychiatric arguments come down to making unsubstantiated guesses, its no better than the Hammer of Witches: bring out the witch and force a confession. That was a consensus view of disease back then: witches cause disease through curses and deals with the Devil. Certainly few were game to dispute it. Have we learnt nothing since the Inquisition? Have we learnt nothing from critical rationalism? Are we still stuck with nineteenth century standards of science in medicine, though primarily this is in psychiatry?
  14. Richie

    Richie

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    Hi Alex
    Personally I find the term "mind" useful to deal with the fact that the brain alters itself and consciousness actively by thought aswell as being the (more) passive recipient of environmental inputs. The brain is not just like a thermometer dependent on its physical make up and outside conditions. As far as medicine is concerned "mind" for me is sth like "the brain thinking about/processing and changing itself "

    That seems a fair working principle to me without getting into big philosophical arguments.That said, I have heard of cases of coma/near death recoveries who have memories which should not exist as the part of the brain considered responsible for such consciousness was shut down. Some interpret this as false memory, some as evidence for the (potential) non physical nature of the mind, some put it down to such activity being more diffuse in the brain than we thought, possibly due to stress conditions.

    I like to use the term "mental illness/mental symptoms" pragmatically. If the abnormal or problematic phenomena are affecting thought, behaviour but not bodily health, they are "mental". That does not exclude biophysical aetiologies/correlates, some of which may be due to ultimately biophysical causes But I do believe that because the brain's structure and function can change due to psycho environmental stressors, thought patterns etc. some mental (and imo bodily) illness will be mediated by organic brain factors but, imo, is ultimately due to psychological and psycho-environmenatal factors. The fact that psycho-behavioural therapies help some people with a variety of conditions supports this imo.

    I have never bought the argument that we fear/deride/dismiss "mental" illness as illness. What we dispute is bad medicine, bad science, and dodgy treatments, and the doctors who support those. I have talked with no patients I can recall who have the view of avoiding "mental" diagnoses due to stigma ... indeed I see a CFS diagnosis as at least as sigmatised by society, and even family and friends, as most "mental" illness.

    Pretty much spot on imo. Personally I accept biophysical inputs, psychological inputs, ongoing organic and psychological attrition, chaos in neural networks etc as all playing a role, but putting it all down to false illness belief and deconditioning, unresolved emotional conflict, subconscious conditoned reflexes or whatever psycho dognatism happens to be the favoured hobby horse is not even good paychology/psychiatry. It is just bad medicine.
  15. alex3619

    alex3619 Senior Member

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    Richie

    Yes, we use the term "mind" for convenience. The brain is a complicated organ, orders of magnitude more complicated than most things we study in science, and so the term has pragmatic value. Its just that the term is used in very out of date ways in psychiatry.

    The sometimes usefulness of psycho-therapeutic actions shows people can adapt, not that they reverse the underlying pathology. Nobody has been able to distinguish between the two, they just presume the answer.

    I consider it highly likely that no psychological factors can cause these disorders, its the wrong paradigm. I do think they can modify responses, and also exacerbate symptoms. So there are therapies, but will never be cures using psychological strategies. The pathetic cure rates in psychiatry support this. The generalizability of these strategies just means that brains are adaptive in my view, we can learn to cope.

    There is less chaos in the brain than you might think if you are arguing from a perspective of artificial neural neworks. Robustness is a huge feature of brain neurology. However it is highly plastic. Here is the catch though: not all the brain has equal plasticity. We can easily learn new behaviours and have different thoughts, but they do not alter deep brain architecture. Only paths that are activated during an activity can alter that architecture, to an extent defined by the brain, and there are experimental methods used to try to do this for things like PTSD by using both drugs and confrontation strategies, but I have no idea how that research is going, its not something I follow.

    During development brain architecture is highly random within broad constaints, with large input from early childhood environment, both external and internal environment. This is followed by massive brain connection pruning, again based on environment, this time mostly external. There is considerable adaptive function left though, and the brain can rewire itself. Indeed I recently broke my leg. My physio was adamant exercise, and graded exercise, were key to good recovery. I am not sure about that even in healthy people. With prolonged inactivity the brain rewires to not use that muscle, to not sense that muscle so much, so its the brain that does most of the changing, due to activity. If inactivity goes on too long though the brain can seriously rewire that part of the body resulting in much longer term problems. At that point only intensive intervention can create faster results.

    My PhD candidature was based on a systems theoretic approach to composite artificial neural networks, and I was interested in adaptive categorization - how they change, and can reverse suddenly. This was the mid 90s. So I understand the concept that the brain has many inputs, external and internal, and the current function is the outcome fo the process of integrating and processing all of that. So we agree on the fundamentals of this. When you consider most psychiatric verbal therapies in this light its easy to see they can have some effect, if they are the right strategy, but its also easy to see they cannot do much more than teach psychological coping or in extreme cases brainwash someone.
  16. Richie

    Richie

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    Alex
    I don't know whether you are right that underlying pathology is not reversed by psychotherapeutic approaches. If you are talking about ME/CFS/FM, things can get very heated.I just accept that some symptomatic people spontaneously remit or apparenty recover after numerous interventions. Quite why may not even be clear - even in the case of physical modalities.
    If you are talking about mental conditions I see no reason in principle why things such as serotonergic function cannot be returned to normal by psychotherapeutic approaches if they have been disordered by exogenous inputs in the first place. Why not? Also in cases where people have adapted, that adaptation must have a bio correlate in any system which regards mind as brain.

    When I refer to neural network chaos, I may be using language somewhat loosely. I was thinking of the slough of mad neurological symptoms many of us have/do put up with.

    Of course this is a massive field. I know at least one psychiatrist who firmly believes ME/CFS/FM are mainly biophysical but is an advocate of talking for many mental illnesses, as he finds that the drugs don't work. He would see much mental illness as a settings problem with the setting having been altered by experience and more amenable to resetting by psychotherapy. I suppose that takes us back to neuroplasticity, which you talk about. Any drugs out there which target that? One view of SSRI's is that they are brain retrainers.
  17. WillowJ

    WillowJ Senior Member

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    most psychiatric-classified diseases have additional pathology which current medications do not address. There is a little bit of research on this (mitochondrial dysfunction, for example), but the field is largely entrenched in theories (such as neurotransmitters) which are not sufficiently treating these important diseases. There is more work to be done.
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  18. alex3619

    alex3619 Senior Member

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    @ Richie

    It was disproved in the 1980s that serotonin corrects depression. I mean categorically disproved, which any serotonin pharmacologist could tell you. Yet nobody has a better idea as to why these drugs appear to work. Lots of perfect (as in better than the current drugs) serotonin drugs exist on the drug researchers books that simply do not deal with depression. The term "selective" in SSRI is a marketing ploy. To a biochemist these drugs have low specificity, they are not selective, they act on who knows what in the brain. Indeed, what put the nail in the coffin of the serotonin hypothesis was the fact that every highly selective drug, which was proven to raise serotonin, failed to impact on depression. It was the less selective drugs that worked.

    One thing that was not disproved however is the possibility that these drugs work by correcting serotonin and something else. We are still guessing about that something else so far as I know. Indeed a trend in the last decade is for antidepressants with multiple targets, not just serotonin. However the underlying science is not much different to what patients get up to: lets guess and then try it. Without understanding the disease mechanisms there is too much guesswork.

    The PTSD teatment I mentioned before was aimed at increasing brain plasticity in, I think, the amygdala. I do not recall the name of the drug, and the research is old now. Plasticity is about chemistry, but its mostly about neuronal signalling - its brain activity that causes rewiring. Yet if the brain is not causing the illness, all rewiring can do is modify our adaptation to the illness, for better or worse.

    The argument that these drugs might reverse the conditions is valid as an hypothesis ... but as yet there is no proof of that. Without good evidence I see no reason to believe it. Medicine is full of failed hypotheses, as is much of science. We just don't know enough about the brain to be really sure of much of it.

    Instead what we are facing is growing evidence some of these drugs can cause long term brain damage, though its very early days and by no means certain, and so could be wrong.

    Furthermore lots of psychiatric drugs are "validated" on studies in which we do not know the condition they are validated for even exist. These are hypothetical conditions, for which they found a treatment that produced a result that is hard to interpret: if the disease doesn't exist how do you interpret the result? Presuming the disease exists and relying on it is the fallacy of begging the question.
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  19. Dr. Elander with the haymaker.

    I LOVE seeing our doctors do this. We can tell people we aren't crazy/depressed all we want, but at certain point if you have to tell people that, you are already in a place with them you'd rather not be. When a credentialed doctor steps up and says it people tend to listen.
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  20. Richie

    Richie

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    Good point Willow
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