ME - a neuropsychiatric illness?

[redo]

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.
(...)
There are plenty of data showing biological anomalies in patients with neuropsychiatric illness, even after removing confounding effects of harmful treatments. (...)

I think that is a very valid point anciendaze. With ME there's a wide array of symptoms. Judging from the patients I've been in touch with, perhaps the main term neurological - with a part of them having neurologically mediated psychological symptoms would fit better (as I don't believe in somatization and such being a real issue). As others have mentioned, and is well known, parts of the patients also have direct symptoms from immune system malfunction (such as inflamed and swollen joints) and endocrinological issues as well.

Seems like Lipkin/Hornig proposes to see it the other way around (or at least with neuropsychology in the center, and perhaps other terms as supplemental).

I really pity those who have syndromes such as OCD, although that the root cause isn't known, they often times get the blame for being sick, like it's something they have brought upon themselves.

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.

I agree. The term is even being used about cognitive abilities tests such as the common WAIS test...

Mast cell activation disorder, whatever the cause, leads to systemic inflammation, including of the brain.

Wouldn't you also say it would be possible for the inflammation to cause malfunctioning neurons, reuptake mechanisms in the synapses and such - resulting in neurological symptoms and neuropsychological symptoms? I'm not saying I know, I am saying I see the possibility, and I judging from the Mella/Fluge studies, I think it seems like autoimmunity/autoinflammation is causing the 'brain symptoms'.

Of course vision problems and numbness (etc) need have no psychiatric component, they may simply be 'neurological'

That's a valid point IVI. Most of the bucket load of ME symptoms fall into that category, so neurological seems like a better term, since the mainstay of the symptoms are of that character.

 

[justinreilly]

I agree that there are some symptoms of ME that are or could be considered psychiatric such as cognitive dysfunction and sometimes mood disorders. However, I think it is a HUGE mistake for us or anyone else to call ME a neuropsychiatric disorder, because it is much more accurately termed neuroimmune or just an internal medicine or multi-system disorder.

Moreover, using the word psychiatric does us HUGE harm because it gives cover to our persecutors like Wessely to keep lying that it is a psychological disorder.

What it comes down to is do you want to still be complaining in another 20 years that we are stigmatized and there is no science being done? If that is what you want, then please do use terms such as "neuropsychiatric" which will ensure we will continue to be lied about and abused.

 

[jimells]

I must be 'crazy' -- I keep having this thought that mental illness is real, but psychiatry is psuedo science.

Maybe I should sign myself into the psych ward???

 

[Little Bluestem]

No easy answers yet as pathologies pour in involving three systems - neurology, immunology and endocrinology dysfunction.

Don't forget mitochondrial dysfunction.

 

[Little Bluestem]

If the function of the brain is affected, it has a psychiatric component.

If brain function is affected by insufficient energy caused by mitochondrial dysfunction, what is the psychiatric component?

 

[alex3619]

I must be 'crazy' -- I keep having this thought that mental illness is real, but psychiatry is psuedo science.

Maybe I should sign myself into the psych ward???

No jimells, you are not crazy. Its the language that is crazy (but I suspect you were satirical here). Mental illness is real, but its not really mental (in theory of mind I am a monist ... there is only brain). The concept of mind is a fiction, a convenient description of brain function. Much of psychiatry is pseudo science in my view, but not all. However most of the psychiatry that is applied to ME and CFS is pseudoscience, based on what I have seen and analyzed so far. In fact I used something like six definitions of pseudoscience (which will appear in my book) and the psychosomatic hypotheses of ME and CFS qualify as pseudoscience under all six!

Justinreilly, I agree with your sentiment, but there is a difference between our political strategy and the definitional claims being made. We cannot blanket deny their claims. To fight it we have to be specific, or it sounds like we are speaking nonsense. In other words, we can't just deny, we have to explain. Politically, however, we shouldn't use the term neuropsychiatric in our own publications due to its propensity for misunderstanding. Its too imprecise and has the wrong implications.

Thats just my opinion. By definition they are right, but only because the term is so imprecise and they can get away with confusing multiple meanings, a favourite tactic of this group. Precision is their downfall ... they don't have it.

To get the flavour of their reasoning (actually their misuse of language and reasoning), you might like to read:
http://forums.phoenixrising.me/index.php?entries/wight-here-wight-now.1237/

Bye, Alex

 

[beaverfury]

Thankfully, researchers, real scientists, are going to look for physical substrates of disease states, and this is where
progress of defining and treating illness happens.
Doing the opposite, looking for psychic states underlying physical manifestations has the sort of credibility that blue safari suits, gold chains and hairy chests have in the fashion world.
In fact, I think Wesseley would look smokin' in just such an outfit.

I agree that tussling for political ownership over terms is important.

This report by Kate Benson predates the recent Lipkin XMRV announcement by almost 12 months.
The term, 'neuropsychiatric',was used by her in a passage that was not a direct quotation from Dr Lipkin or Dr Hornig.

Great thread. I'm glad people are discussing this.

 

[natasa778]

I agree that there are some symptoms of ME that are or could be considered psychiatric such as cognitive dysfunction and sometimes mood disorders.

But these are the exact symptoms (main ones) that appear in otherwise perfectly 'normal' people when undergoing interferon treatment. And go away when treatment is stopped.

So once again here 'psychiatric' can/should/must be explained away by immunological. Or do we say that those patients, while undergoing interferon treatment, should be considered mentally disturbed and be treated by psychiatrists?

 

[biophile]

Immuno-psychological?

 

[currer]

The brain and immune system work on a common chemistry. The chemical signalling used is similar for both systems - for reasons of biological economy.
This is why people feel depressed when they are sick.

Lipkin in recent Discover interview.
Have we reached the point where we can link specific infections to specific psychiatric disorders?
No, the connection is much more complex. When I worked with LCMV, it became clear that any sort of perturbation could damage the nervous system. Nerves find their way to specific locations through signposts that are part of the immune system. And if you increase immunological molecules of certain types, a nerve may jog this way as opposed to the way it’s supposed to go. It may not make a difference what the infectious agent is—bacterial, viral, or parasitic.
http://forums.phoenixrising.me/index.php?threads/lipkin-bad-news-folks.19407/page-21#post-303095

 

[alex3619]

Hi currer, nerves do indeed follow chemical paths to create connections. I first started studying that in about 1993, though I forget nearly all of it. This whole process is therefore modified by the chemical environment. Furthermore the functioning of nerves is specific to the chemical environment. The underlying dysfunction in mental ilness, in my view, is almost always physical. Its described as mental due to an historical and linguistic fiction. We speak of mind, but nobody has been able to find one. Its inferred, and I think inferred incorrectly. So technically I think that mental illness is always a miscategorization. Its not that the illness may not be real (though sometimes its clear they just make illnesses up) but that they are neurological, immunological, metabolic, inherited (genetic) or simply errors in reasoning (due to bad information or faulty reasoning, which is not exactly physical but about information). Psychiatry as a distinct discipline is an historical accident, not an inevitability.

However the issue is that psychiatry is a currently accepted medical discipline. We have to deal with that.

Bye, Alex

 

[Snow Leopard]

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.

Right. The psychiatric component hasn't been shown either, so what are we left with? "Medical unexplained"... It comes down to chicken vs egg, which is more probable given the evidence? Very few comprohensive neurological examinations have been done and those that have been done (autopsies etc) have shown neurological lesions.

Only a minority of CFS patients actually have psychiatric comorbidity - 36.4% according to the 2002/2003 community based health study in Canada, compared to 8.1% of the total population.
The authors also wrote "But although the prevalence of mental disorders was high among people with MUPS, some research suggests that the stress of having unexplained symptoms may lead to mental health problems—in many cases"
Indeed, the level of mental disorders in RA patients of the same age range from the same survey was in the same ballpark (around 30%).

In fact psychiatrists in the field of CFS could learn a lot from the studies of depression and other mental disorders associated with RA. I've read a few and they are generally much higher quality than the CFS literature - especially basic stuff, like the understanding that generic depression questionnaires are not appropriate or valid for the RA population. (and nor for the CFS population)

In the CDC population based study in Witchita, around 30.8% of patients had reported that they had received treatment for depression., but only 16.9% of patients actually met the criteria according to the diagnostic interview schedule.


In terms of reasoning, you have to start somewhere and for me that places it in the autoinflammatory category for a majority of patients. (CFS is probably heterogeneous)

 

[natasa778]

Right. The psychiatric component hasn't been shown either, so what are we left with? "Medical unexplained"... It comes down to chicken vs egg, which is more probable given the evidence? Very few comprohensive neurological examinations have been done and those that have been done (autopsies etc) have shown neurological lesions.

You don't even have to have neurological 'hard' evidence, or presence of lesions etc. As alex mentioned disturbed chemistry is in itself quite enough to cause 'psychiatric illness', even in complete absence of visible neurological disturbances (see my post on interferon treatment..).

 

[Marco]

I really wouldn't sweat this one.

Not all psychiatrists are created equal and few that I come across (in print) consider 'psychiatric' factors such as personality, 'maladaptive thoughts and behaviours' or even early life trauma as being anything more than possible moderating factors in most 'psychiatric' illnesses.

I now find myself spending the majority of my time referencing 'psychiatric' papers where the discussion centres on genetic predispositions, immune factors and neurotransmitter levels etc with a growing consensus that most if not all psychiatric and neurodegenerative disorders are of neuroinflammatory origin. No mention of Freudian psychodynamics, false illness beliefs or CBT as curative in these papers.

So lets not tar all of psychiatry with the same brush just because a few jump to lazy self justifying conclusions.

Re the false dichotomy between neurology and psychiatry it can be conceived that neurologists deal with structural brain abnormalities while psychiatrists deal with functional. But of course structural abnormalities in the CNS can cause functional ones and functional abnormalities can over time (via oxidative stress and apoptosis) result in structural changes.

No big real really. Psychiatric does not equate to psychosomatic which as far as I'm aware has never been objectively shown to exist beyond reasonable doubt in more than a miniscule handful of cases.

 

[Firestormm]

Morning Redo,

What was the date of that article? Can't recall reading it before. No date is obvious though it carries today's date at the very top of the page. Thanks.

 

[heapsreal]

I would like to leave psychiatry right out of it because it gives the general public and many docs the wrong idea. I would say we have neurological issues and reactive depression is common, who wouldnt feel depressed feeling like sh-t, its a normal response to the situation we face. If one of the theories of immune/infection/autoimmune is treated fully and symptom go then there is a psychiological reason for these symptoms not a behavioural or learned cause..

At this stage most psychiatric conditions cant be proven physiologically, most psych conditions are diagnosed through questioning and observing behaviours. One day i think they will be able to diagnose these condition with physiological abnormalities but not the way the psychobabblers think, probably alot of bipolar and schizophrenics are caused by some type of infection, know one knows. Dr John Martin has found infectious causes of these psych disorders, is research and integrity has been slammed because of this, maybe he was very close to working these things out??

I suppose the other arguement is many believe psych disorders arent believed to be real, i just thing many are very misunferstood just like cfs/me. Could u imagine the reaction from psychobabblers if they found the cause of bipolar and a certain antibiotic given for 3 months successfully treated it, those docs and researchers that found this cause would cop the same crap as proper cfs/me researchers.

cheers!!!

 

[heapsreal]

Stealth Viruses: A Bridge Between Molecular Virology
and Clinical Neuropsychiatry
W. John Martin, M.D., Ph.D.
Center for Complex Infectious Diseases
Rosemead, California 91770
Abstract
Stealth viral infections of the brain may explain the increasing prevalence of dysfunctional brain syndromes in modern society. This paper formulates this concept by providing coherent overviews of both molecular virology and clinical neuropsychiatry. Cytopathic viruses which have undergone a stealth-adaptation as a means of bypassing the cellular immune defense mechanisms, cause persistent systemic infections, which frequently involve the brain. The terms multisystem stealth viral infection with- and multisystem stealth viral infection without- encephalopathy (MSVIE and MSVIE, respectively), have been suggested to help emphasize the encephalopathic illness seen in a subset of stealth viral infected patients. Patients with MSVIE can manifest a wide range of symptoms, including those that meet criteria for a primary psychiatric diagnoses. Infected patients have been labeled as having schizophrenia, manic depression, dementia, autism, attention deficit and major personality disorders. The clinical and therapeutic significance of a stealth viral cause of psychiatric illness is briefly discussed.

The rest of the article can be found here http://ccid.org/stealth/svreview.htm

 

[alex3619]

I now find myself spending the majority of my time referencing 'psychiatric' papers where the discussion centres on genetic predispositions, immune factors and neurotransmitter levels etc with a growing consensus that most if not all psychiatric and neurodegenerative disorders are of neuroinflammatory origin. No mention of Freudian psychodynamics, false illness beliefs or CBT as curative in these papers.

Right Marco! A point I keep making, biopsychiatry is one of the chief opponents of psychosocial predominance in parts of psychiatry. Its one of the reasons psychosomatic hypotheses are becoming very unpopular. While I do not know this for sure, it would not surprise me if the biopsychiatric movement is largely responsible for the resistance to DSM-V. Biopsychiatry has the potential to put psychiatry on a scientific footing. Those who want to see psychiatry become scientific, instead of being based on vague unsustantiated ideas, are not our enemies. They may be misinformed, or under-informed about our issues, but they are potentially reachable.

Bye, Alex

 

[beaverfury]

Morning Redo,

What was the date of that article? Can't recall reading it before. No date is obvious though it carries today's date at the very top of the page. Thanks.

November 2011

 

[In Vitro Infidelium]

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.

So a key observation by respected observers has to be banned from further mention because it 'doesn't fit' ? Emotional lability does not of itself necessitate a 'psychological' explanation (explanation - in the sense of a somatised illness process), emotional lability could as well be a symptom that is mediated by misfunction/dysfunction/damage to the brain as it is in Alzheimer's and numerous other neurological conditons: see Causes of Emotional lability (is that what "from centres very much in the the brain infected" meant ? ) We can't brush clinical observations to one side, they have to be taken on board and accorded appropriate positions within any schema of the illness that is being argued for - whether they are convenient or not.

IVI