The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

ME - a neuropsychiatric illness?

Discussion in 'General ME/CFS News' started by redo, Oct 9, 2012.

  1. redo

    redo Senior Member

    Messages:
    837
    Likes:
    102
    A couple of times it has been stated that the illness is perhaps neuropsychiatric. The last time I saw it was here (hat tip to Omar88 for the link).
    My view is that it's probably right. I think it's either autoimmunity running alongside neuropsychiatric symptoms, or neuropsychiatric symptoms being caused by some autoimmune reaction. And needless to say, having nothing to do with psychosomatism. The big question is 'what' the various triggers (EBV, giardia and such) get going, and that 'what' causes the symptoms via autoimmunity or neuropsyciatric mechanisms. I think that 'what' is some form of a RNA virus.

    To me, it being neuropsychatric, really implies that the symptoms of e.g. vision problems and numbness are caused by changes in the way the nervous system reacts, rather than changes in the eyes and skin. It's probably easier to revert the symptoms if they are not primarily related to organs throughout the body, so it's not necessarily a bad thing...

    Mella/Fluge also proposed (on the London conference if I remember correctly) that the fatigue symptoms of ME/CFS may be mediated first and foremost via signalling in the brain.

    What's your opinion on this?
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    12,099
    Likes:
    32,545
    Logan, Queensland, Australia
    Its hard to dispute redo. It may very well be right. Whether the neuropsych issues are primary or secondary is important though. I suspect, on current evidence, they are secondary to autoinflammatory or autoimmune issues. Bye, Alex
     
    justy likes this.
  3. Esther12

    Esther12 Senior Member

    Messages:
    8,106
    Likes:
    25,246
    As long as the researchers and medics who have made false and misleading claims about the efficacy of cognitive and behavioural treatments have to face disciplinary action, I couldn't care less.

    If it turns out that many people diagnosed with ME have suffered from some sort of brain injury/inflammation/etc, and the 'neuropsychiatric' label is used to legitimise the quackery and management which has been inflicted upon patients, I'd be really pissed.

    Personally, I'd be surprised if there was any one cause, even a broad one like 'neuropsychiatric' would seem to be.
     
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,689
    Florida
    Gluten can do this kind of damage too. It's well documented in theglutenfile. I started my me/cfs journey with a virus
    but that doesn't mean there weren't other complications.

    I'm leaning towards thinking this is what's behind my lingering cognitive problems. I had gluten ataxia
    so I know firsthand how brain damage affects our eyes, brain and legs. My vision would get
    fuzzy when I walked (occular ataxia ?). I'd lose my balance (brain / cerebellum damage). And my legs felt
    like they weighed 100 lbs each. My right foot also dragged.

    This thread caught my attention because I'm looking at ways to reverse my cognitve problems (speech,
    memory, sluggisness, etc) either via drugs or supplements.

    I have such a positive reaction to Klonopin that I'm not so concerned with healing my brain anymore. Klonopin
    puts me into a deeper sleep than the supplements alone. I still take the sleep supplements (melatonin and
    5htp) because obviously my body can't produce these anymore. I'm 57 and have been totally disabled for
    23 years now. Only Gluten free for 7.

    Most of my me/cfs symptoms are under control via diet and now mast cell treatments but not the cognitive part.
    If I'm tired, my brain is the first to take a break.

    Thanks for starting this thread. Tc ... X
     
  5. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Red rag to a bull here redo - psychiatric is defined in my dictionary as pertaining to the "soul, spirit, mind ....beyond the physical ..... etc". Cognitive problems met in ME (my brain MRI did reveal some hyperintense patches at worst) looks pretty physical to me. And of course many other "physical" abnormalities found. The brain is a PHYSICAL entity.....collection of neurons trying to buzz away there and subject to infection or whatever like any other part of the body.It's been said before of ME - brain not mind to idiot psyches.
     
    jace, justinreilly and Jarod like this.
  6. redo

    redo Senior Member

    Messages:
    837
    Likes:
    102
    First of all, I think the use of that 150-year old label ought to be updated (although it fits for some conditions). Secondly, I am not saying I don't think it's physical. Absolutely every change in cognition can be traced back to physical changes, whether it's reason A or B for the changes. I think the reason behind this is a pathogen. And, as you see in my original post, I wrote that I think immune system issues, indirectly or directly is part of it. And, at last, I'm not here with an agenda, so the the «red rag» doesn't upset me ;). I'm opening a discussion I think we should take, as it's been repeated by several sources that it may be this way.
     
  7. nanonug

    nanonug Senior Member

    Messages:
    1,250
    Likes:
    414
    Virginia, USA
  8. redo

    redo Senior Member

    Messages:
    837
    Likes:
    102
    nanonug. The link is appreciated, I intend to read through it when my health is better. My hypothesis is that ME is caused by a RNA-virus gone from latent to active (as written in many threads here), causing disruptions in the immune system. But that doesn't exclude that in the last link of the chain, the symptoms may be mediated through neuropsychiatric mechanisms in the brain (as in biological mechanisms, and not somatization or such).

    If it indeed is a mast cell disorder, would you exclude that the symptoms come from issues with the mast cells, resulting in (reversible) issues with either brain receptors, reuptake mechanisms or related things, making the nervous system malfunction?
     
  9. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    @ redo - I appreciate all you say and good to open up - there is nothing "psychiatric" (mind - whatever they mean by that). No easy answers yet as pathologies pour in involving three systems - neurology, immunology and endocrinology dysfunction. I simply want to re-assure anyone looking in that "cognative" (vision, hearing, memory losses etc) problems have nothing whatsoever to do with psychiatry. It's the soft option for ignorants - not Lipkin too one hopes. If so (my brother Prof Neurology in the US) he must get out of bed and join forces with these specialists.
     
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,520
    Likes:
    16,572
    Before applying it to ME, first there needs to be an adequate justification for the identification with primary mental disorder, irrespective of the "neuro" prefix. Psychiatry translates to "medical treatment of the soul/psyche". Look at the clinical characteristics described in ME criteria, why should these be identified as a primary disturbance of the mind rather than a neurological disorder or equivalent, even if it was attributable to a disease of the nervous system?

    Some comorbidities, such as depression and anxiety, may be somewhat neuropsychiatric. Temporary emotional symptoms seemed to be common in the ME epidemics, and were attributed to organic causes at the time.

    I think the term "neurosomatic" has more promise.
     
    leela, justy and justinreilly like this.
  11. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    I think the term "clinical" (bodily dysfunction) applies. Yeah, yeah yeah - I've heard it all - unable to keep upright and staggering to the dustbins with extreme slowed down cognitive (like my eyes could not accomodate) issues I found my intelligence rather brighter than those around me who couldn't spot a leak when they saw it.
     
  12. alex3619

    alex3619 Senior Member

    Messages:
    12,099
    Likes:
    32,545
    Logan, Queensland, Australia
    I don't think many of us would disagree that the cognitive issues discussed are primarily physical. The issue is that psychiatry currently says cognitive issues, even physically caused ones, are part of psychiatry. If the function of the brain is affected, it has a psychiatric component. Don't forget that psychiatry likes to spread its wings - if they can claim something is psychiatric, and get away with it, it tends to happen - just look at DSM-V. However this means that psychiatry does include cognitive symptoms - but that says nothing about the cause. Whether or not it should claim cognitive symptoms is another issue. I would prefer this became a branch of neurology, and for us neuroimmunology etc. However, to most people claiming that brain fog for example has no psychological component sounds like nonsense to most, I suspect. It risks getting the message confused.

    The problem is that neuropsychiatry is a vague, blurred catch-all term. Its not very precise, and its meaning changes over time. I think the word shouldn't be used, but to claim its wrong, when under various definitions its right according to facts most of us would agree with, sounds odd at the very least.

    AIDS dementia is considered by at least some to be neuropsychiatric I think, and so our brain fog would be under similar reasoning. However there are few psychiatric techniques, and little research, to tackle such problems. Full biopsychiatry and (bio)neurology are so similar that its hard to separate them. In time I think biopsychiatry will be considered a redundant term and simply not used, but until then biopsychiatry, biopsychology, neuropsychiatry etc. apply by definition. If we want to say otherwise we need to be very precise about what we mean, and why, otherwise it just sounds like nonsense to someone who does not know the issues. It also gives us a chance to educate them.

    Bye, Alex
     
  13. anciendaze

    anciendaze Senior Member

    Messages:
    1,761
    Likes:
    4,424
    I want to point out that between 1/3 and 2/3 (depending on the source) of patients with lupus (systemic lupus erythematosus) have neuropsychiatric symptoms. These may be severe enough to require hospitalization. The disease is still classified as physiological. The critical difference is a visible rash.

    A pertinent question about treatment of neuropsychiatric illness is the success, or lack of same, in reducing incidence. You can accomplish this by either prevention or cures. By this measure the current approach to say, schizophrenia has been a dismal failure. Claims of cures turn out to be based on data on treatments given which ignore longitudinal studies showing what every worker in that field knows: the same patients are treated over and over again. This allows the number of "cures" to exceed the number of patients.

    There are plenty of data showing biological anomalies in patients with neuropsychiatric illness, even after removing confounding effects of harmful treatments. These are generally ignored because of an overriding need to control disruptive behavior. ME/CFS presents a problem not addressed by psychiatric paradigms, these patients do not exhibit the vast majority of behavioral problems found in psychiatric patients. A patient like author Laura Hillenbrand seems saner, based on her writings, than most candidates for public office. (Want proof? She has never considered running for public office.)
     
    justy, SOC, redo and 2 others like this.
  14. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Well I guess we know the real problem alex (in psychos dreams) - unless they become real medics/scientists their day is done. Thank heavens. What the BH is a psychiatric illness - do they know fishing around hoping someone may reveal more.

    Disagree alex - these people couldn't agree about Anders Brevik sanity in Norway - frankly not my thing so reasonably sane. That is one's greatest fear and any support you feed into. And have you actually looked after someone with dementia eg (not ME). and know the difference??
     
  15. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Adding a new label doesn't necessarily advance understanding. Accepting 'neuropsychatric' as comprehensively descriptive of the illness experience by the global population currently captured by agreed disease criteria of M.E/CFS is certainly problematic because no one has yet shown that hypothesised psychiatric symproms are produced by hypothesised neurological symptoms. However as an hypothesis that is proposed for a hypothetical sub group of the global 'captured' popuation, it seems reasonable. Of course vision problems and numbness (etc) need have no psychiatric component, they may simply be 'neurological'; nevertheless emotional lability has been recognised as an M.E symptm from Ramsey onward - and is difficult to classify as non psychiatric, however I think many patients would question how signficant emotional lability is across the symptom range. Cognitive impacts are more difficult to separate from potential psychiatric relevance but the question then rather comes down to causation or treatment - it is likely only in the latter would psychiatric intervention have some useful ameliorative role where cure or at least higher level neurological intervention remains unavailable.

    IVI
     
  16. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Hey - emotional lability - from centres very much in the the brain infected - whoopee I recall though tears apparently fell. Come on IVI we can all do better than that as we uncover central brain (probably the autonomic system amongst others) infected. Ra, ra, ra - put your mind together IVI and cease psychological explanations - they never were there.

    It simply astounds me (after 10 years ) this thread in the light of medical (real) findings carries any credence whatsoever. But I'm sure gonna sleep well without it.

    How can you do this redo.
     
  17. alex3619

    alex3619 Senior Member

    Messages:
    12,099
    Likes:
    32,545
    Logan, Queensland, Australia
    I substantially agree IVI. I am not saying that they have any accuracy or claim to good understanding. They clearly don't. One psych's sane person is another's insane. We don't understand the problems, so diagnosis is more an art not a science, but its over-privileged as though it were scientific.

    The area where psychiatry most fails in ME is in attributing our thoughts. The things they say we are thinking do not even remotely resemble my thoughts, nor almost every ME patient I have ever chatted or talked with. It sounds, from my experience, like they make this stuff up. Either that or their patient cohorts are totally different from any ME group I have ever met - which is also likely.

    My argument is about the way things are defined. By the definitions, not real understanding, we have neuropsych symptoms. Its a definitional thing, and hard to dispute. However this doesn't mean the definition will survive - I think science will steamroller over most of it in time, provided of course that science can advance independently of public control and special interest group control.

    Similarly if DSM-V passes uncontested and is accepted, both of which are not guaranteed, every CFS patient will have complex somatic symptom disorder (CSSD) or whatever they choose to call it. This is not a proven thing, its a definitional thing. They want to change the rules so they win by default, not by science. However, this is patently obvious in many cases, and is being fought. My guess though is DSM-V will be released substantially unchanged, and the real fight will be to discredit it after its released. We need to be in that fight.

    Bye, Alex
     
    beaverfury likes this.
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Well I do not agree alex - I think we are fairly sure in agreement of what is insane or isn't - not much likely to do in my neighbour ( you may have other ideas I do not). We are talking different things here., specifically ME and simple cognitive disabilities whilst they last.
     
  19. nanonug

    nanonug Senior Member

    Messages:
    1,250
    Likes:
    414
    Virginia, USA
    Mast cell activation disorder, whatever the cause, leads to systemic inflammation, including of the brain. It is possible for mast cells to be activated by viruses and a ton of other things. There is also the possibility of mastocytosis in which case the body just pumps unnecessary numbers of mastocytes. There is specialized testing for this stuff as I document on this post: The four ME/CFS tests almost no one has ever done.
     
  20. alex3619

    alex3619 Senior Member

    Messages:
    12,099
    Likes:
    32,545
    Logan, Queensland, Australia
    Insanity is complex, and one of the problems that occurs is that legal definitions, practical definitions and psychiatric definitions often do not match. Legal definitions in particularly have very strict interpretation, and many insane people via psychiatric definitions are legally sane. However I doubt that everyone who is psychiatrically insane really is. In fact I don't think we know what insanity is. In general if you are seen to be causing problems, and have no acceptable reason, you are seen as crazy. They used to lock up diabetics as crazy. They still lock us up sometimes, despite all the evidence.
     
    GracieJ and snowathlete like this.

See more popular forum discussions.

Share This Page