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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Neurological Evidence of So-called 'Somatoform' Disorders? (ie FM, IBS, CFS)

Discussion in 'Latest ME/CFS Research' started by Cort, Jan 17, 2011.

  1. kurt

    kurt Senior Member

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    Limbic dysfunction can be associated with infection

    One other angle here is infection.

    The limbic system can be injured and its function altered by infections. Lyme Disease is one condition where limbic brain area damage has been reported. Probably various encephalitis agents can over-sensitize limbic functions. Also, chemical injury (toxins getting through a leaky BBB) and physical trauma can alter limbic function.

    Here is a study of chronic Lyme patients after an antibiotic therapy. Their brain function is altered, including altered gray matter and limbic area dysfunction. In this case there is hypoactivity, but the point is simply that infection can explain some limbic dysfunctions.

     
  2. Enid

    Enid Senior Member

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    And we must keep on top of it. It's quite obvious to any sufferer - would they but listen - multi-system . (Gee how confusing should know/think more). .............medics and their ill informed psychos - one wonders who is the prize idiot.
     
  3. Angela Kennedy

    Angela Kennedy *****

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    I'm sorry Enid but this just isn't accurate. 'Psychogenic explanations for ME/CFS have NOT been dispensed with. They may be fundamentally fallacious in various ways (I'd argue that), but they are still being taken on trust as plausible (wrongly, I would argue) by various agencies.

    Just to be clear - are you aware that people here are arguing AGAINST psychogenic explanations of ME/CFS?
     
  4. Cort

    Cort Phoenix Rising Founder

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    Nobody's saying he's had a road to Damascus type conversion; on the other hand dismissing a paper pointing out the possibility of an 'organic' brain dysfunction because he's a co-author doesn't necessarily work either. I'm pretty happy to see CFS nudged into a more pathophysiological arena no matter who does it. Once you have some abnormalities established then you can look deeper...is it an infection, for instance, that does it?

    That's fascinating about Lyme disease, Kurt. I had no idea that was going on.

    The limbic system is obviously a very complex system; that overview in the beginning pointed out that it involves emotion, autonomic nervous system functioning, the HPA axis and I can't remember what else -so any damage to it could impact mood, the ability to exercise, blood circulation, heart functioning, etc. The thing is - it's always going to be a bit messy in my opinion...Any infection or damage there is going to effect alot of different process. Maybe the people with secondary mood disorders in ME/CFS got that piece of the Limbic system damaged. Others without those problems did not.

    I don't expect Sharpe to change at all and I don't mind 'quackery' like that so long as it stays in its proper place; ie as an assist or therapy for some people and not a treatment or the treatment for everybody. If you look at the HPA axis you have the same problem apparently....the HPA axis is a huge immune regulator...and so is the autonomic nervous system...both are impaired in CFS and both, apparently can be used by either side to explain CFS......Its a mess.

    If some people are arguing do not explore the immune response to exercise because it might look like something that depressed people experience - I think you've got a real problem....You have to be willing to follow the evidence...CFS is OBVIOUSLY not depression - we surely would have known that by now, right? Even Wessely doesn't think CFS is depression....but if you're so worried about depression that you want to put the bonkers on immune research I think you're going too far......I think the truth will out and researchers should follow every physiological lead they can. Apparently many findings can be taken in a variety of ways.

    NPY is another in-between factor. It is produced by the SNS and effects all sorts of systems including the circulatory system if I remember correctly and it is associated with increased irritability, etc. and it is found in high levels in CFS......I think we just have to get used to this kind of stuff.
     
  5. Cort

    Cort Phoenix Rising Founder

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    Yet is this such a terrible statement? CBT is most effective in those with less severe ME/CFS.......it is only a partial answer.........then I get that the last part is upsetting but even there they end it with 'opening investigations into biomedical causes". Nowhere do they say CBT cures CFS! In fact they say at its best - at it's best it is only a partial answer...that is even in less severe patients it is only a partial answer - which suggests that in more severe patients it is no answer at all.

    I'd be happy if that's how they summed up CBT at this point.......I don't know who the Gibson Panel is but they are an official UK group and that is their view of CBT at this point - I don't think UK doctors are getting the message.
     
  6. Cort

    Cort Phoenix Rising Founder

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    I do agree that this is more problematic and I wonder what their definition of 'effective' is. It's my understanding that the bar for 'effective' is quite low.

    This are the only available treatments which have been shown to be effective
    in several controlled trials.
    is probably, unfortunately true (even with regard to GET?) but look at the sentence carefully....the only treatments shown to be effective in several controlled trials. . They are the only treatments that have had several controlled trials.

    This statement is, though, ameliorated to some extent by their statement later that CBT is only partially effective even in less severely affected patients.

    It'll be interesting to see what the Montoya treatment studies dig up this year and its terribly unfortunate that Dr. Lerner's studies are just apparently not statistically very good. A little money would go a long, long way and it's just terrible that CBT has had all the money for treatment trials over the past 10 years or so. I imagine one really well done antiviral trial with positive results would go a long way.

    Treatment trials involving antivirals are the kind of work that the WPI should be jumping on very quickly. That is what they are there for - translating research into treatments.
     
  7. biophile

    biophile Places I'd rather be.

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    Well said. And these people are the so-called world experts at the top of their profession? There is an obvious historical trend for the supposed locus of the "mind-body interface" to be at the threshold of the current science with psycho>somatic mechanisms routinely proposed for the remaining unexplained "functional" symptoms of the era. Then the goalposts shift higher/deeper/subtler into the hierarchy of the nervous system as the biology is elucidated and the science moves on into new frontiers, with essentially the same problematic assumptions are carried over to the remaining unexplained "functional" symptoms but cloaked in modern terminology. We are in the growing era of cognitive neuroscience and epigenetics etc, until these mature everything is up for grabs.

    Good point, the biopsychosocialists are enlightened you see, not like those stereotypical patients and plebeian public who (allegedly) stick stubbornly to outdated Cartesian mind-body dualism (ie substance dualism) and dismiss mental illness as imaginary without "understanding" the biopsychosocial model's inclusion of "biological" factors. ;-)

    Sharpe is a Charcot groupie who wants to revive the old traditions. Not only will those with organic diseases not be safe from increasing psychologisation, but they may be seen as extra ripe pickings after DSM-5 is published: "Remove the language concerning medically unexplained symptoms for reasons specified above. The reliability of such judgments is low (Rief, 2007). In addition, it is clear that many of these patients do in fact have considerable medical co-morbidity (Creed, Ng). Medically unexplained symptoms are 3 times as common in patients with general medical llnesses, including cancer, cardiovascular and respiratory disease compared to the general population (OR=3.0 [95%CI: 2.1 to 4.2] (Harter et al 2007)." (http://www.dsm5.org/Documents/Somatic/APA DSM Validity Propositions 1-29-2010.pdf)

    Cue the "Simple Somatic Symptom Disorder", a disabling somatic symptom lasting more than one month which causes you more "distress" than it should according to someone who assumes you shouldn't care about it. No wonder some critics like Allen Frances fear the DSM-5 direction will "take psychiatry off a cliff".

    Good point. Even in a study which found an increase in grey matter volume after CBT, the effect was small compared to CFS baseline and compared to the remaining difference with healthy controls at baseline. It was not clear whether the increase was "reversing" previous loss rather than simply adding volume somewhere else, also there were no non-CBT CFS controls.

    A few groups have reported that hypocortisolism predicts a poor response to CBT (Jason et al + Roberts et al), but the latter group which includes Chalder & Wessely also claim that CBT increases cortisol levels (I use the word "claim" because their study had no controls either). Of course, this isn't really surprising if hypocortisolism is heterogeneous and can be a result from inactivity, which would affect both the "too diseased to increase activity" and "healthy but too fear avoidant to increase activity" (if existent) groups.

    Um, so every neurological disease that could possibly exist at present has been discovered and classified reliably? What is the disorder called when the beliefs and prejudices of physicians are "incompatible" with the patients symptoms and experience?

    Does anyone have any good references for the psychological effects on otherwise healthy people who are exposed to unrelenting psychogenic dismissal and false accusations?

    The assumptions about CFS and the problems in the research have become so ingrained that I think even undeniable evidence for organic etiology alone will not fully stop the psychobabble.

    Yeah, but the people conducting the study usually determine the methodology and could easily nudge it badly. Would you accept Sharpe or the CDC investigating more into the pathophysiological arena of CFS with the Oxford criteria or Reeves criteria? We don't want false positives which point the wrong way, or false negatives which prematurely discourage further investigation, or precious research money being squandered on flawed research.

    I think it should be explored but much more care needs to be taken to distinguish it from the effects of depression, anxiety and "stress". Canadian definition "post-exertion symptom exacerbation" lasting days needs to be better distinguished from PEM because some form of "PEM" is also reported in depression, anxiety and "stress", otherwise people may argue it is only a matter of degree. Obviously a cause for the abnormal immune response to exercise in ME/CFS also needs to be discovered as well.

    Well, we can get used to etiologically-neutral biomarkers if they are relevant, but we shouldn't get used to the sloppy methodological aspects often present in such studies.

    That statement could be a straw man, AFAIK those "patient groups, speaking for those with severe disease" are critical of the criteria required for inclusion into the flawed CBT research into "less severe forms of CFS/ME" and don't deny that genuine ME/CFS has a range of severity. It is indeed plausible that many CFS patients diagnosed by psychiatrists using flawed criteria are not "true CFS/ME patients". Diagnosing a wide range of heterogeneous patients based on a single "unexplained" symptom of fatigue and rudimentary exclusions, then treating all of them with a homogeneous approach of CBT, this could be a major category error.
     
  8. Snow Leopard

    Snow Leopard Senior Member

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    That patient by the way, doesn't consider herself cured:

    http://www.pbs.org/inthebalance/archives/whocares/your_stories/frankie_campling.html
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Lets just cut to the chase:
    this kind of clap-trap should have ended at the Nuremberg Trials and the Codes written up there after.

    These nutbars have got nothing to do with evidence-based medicine, this is why these twerps are in the Psychiatric field:
    it does not require real evidence or "quod erat demonstrandum" like any other branch of science, and thus allows people with sick minds a nice place to hide and act out their own deluded fantasies and project them onto others, and anyone who disagrees with them, is mad themselves and to be burned at the stake as a heretic, or a witch!!
    *he says the last bit in a dramatic and ludicrous way* ;)

    but that's what it's like, see how Torquemada and the witch hunters of Europe and Salem, the Nazi doctors of the camps and groteque experiments, the Eugenicists who secretly murdered folk in many nations etc, all thought and behaved. It's much the same: self-righteous, arrogant, irrational, callous clap-trap.

    "We men of Science are doing it all for the benefit of you suffering plebs! You plebs do not have our wit or letters after our names. How dare you critize us!" and come out with a load of ludicrous self-refferencing babble that proves NOTHING, because it is about them projecting their beliefs onto others, not actual, physical reality.

    In short: the lunatics are running the asylum!
    Any evidence they see, they twist to suit their own delusional beliefs. Like the afore mentioned historical cuckoos. Times change, but people don't change (that much)
    rather than the Church or such, they find refuge in science, to the detriment of us all.

    To roughly paraphrase the fictional, but wonderful, Sherlock Holmes:
    "A doctor's degree is a wonderful cloak for the criminal or insane to hide under, to learn the tools of murder or manipulation, avaliability of deadly or addictive drugs and other macabre tools, able to hide the evidence of your own crimes by merely writing a death or mental incarceration certificate, and the veneer of omiscient respectability!"

    No one else in society would dare try and get away with the stuff these wahoos still get up to, after decades of cover ups, exposes', horrendous crimes, stupid pseudo-science etc have all been exposed we're far less trusting, but still, that bunch can get away with it, because they don't deal with reality at all (so it's a bit hard to disporve their crap), and can accuse others who disagree with them of being mad or lacking their glorious insightful intellect...or merely threaten such...and have the wonderful excuse of "But it's all for the patients interests!", see Dr David Southall as a telling case.
    It's *HUBRIS* and the Emperor's New Clothes.

    "Psychiatry is the last refuge of a scoundrel" ;) with all due respect to the few decent ones of the profession.
    investigation of all this (regarding ME/brain issues) should be left to neurologists and others of the physical sciences, and only those who actually give a damn about honesty and patients' well being.


    with all due respect to the well reasoned posts above :)
     
  10. Angela Kennedy

    Angela Kennedy *****

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    Thank you so much for this biophile! To see this so openly claimed (so-called 'medically unexplained' illness in known organic conditions) is amazing.
     
  11. IamME

    IamME Too sick for an identity

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    Excuse me, I didn't say any of that. At least have the decency to not make straw men arguments.

    So what and whose talking about depression -- there are other inaccurate categories Wessely et al prefer more, like FSS, MUS, somatoform/somatising, affective disorder in general, etc. To portray the psychs argument about being only about depression isn't accurate and far from being "obvious" CFS is defined to look very similar to depression anyway (otherwise there wouldn't be so many doctors thinking that's what it is!) If it's wrong to be compared with depression why is it okay to be compared to a somatoform disorder? Sharpe's background you ignore at your peril as it's telling you in what ways this reseach benefits his agenda.

    In your urge to spin this research you've completely overlooked that it's just not saying what you want it to say: "taken in a variety of ways" is the understatement of the year. "Dysfunction" is is as meaningless as saying there's evidence of gastric dysfunction in stomach pain, yet gastric "dysfunction" alone is still not inconsistent with "stress" and "bad diet". Only the structural damage ("lesion") of an actual ulcer suggests otherwise and of course it wasn't until the smoking gun of H Pylori was found that the psycho-behavioural BS was put to rest. Misdiagnosed organic diseases only get accepted when they're extracted from a larger psych category, not merely rebranded.

    Suggest that findings that are only out of kilter in conditions which epitimise psychiatry will be productive for us is naive.
     
  12. Angela Kennedy

    Angela Kennedy *****

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    Cort- I think what is very important is the italicized words (by me) that you didn't bold. The 'non-clinical' groups mean people not ill. What Sharpe and pals are really saying is they found ill people have certain things happening, that non ill people don't. They've chosen to call those illness groups 'somatoform' (or the people they're reviewing might have), but compare to other, non-contested organic illnesses, there might well be similarity. It also looks what like they might be calling 'somatoform' are merely certain painful conditions. I note, for example, from the abstract they're including fibromyalgia in their discussion of 'somatoform':

    It's a shame we can't get the whole paper.
     
  13. Min

    Min Senior Member

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    & talking about CFS patients, he also said:

    http://www.meactionuk.org.uk/Quotes_from_Mike_Sharpe.htm

    He is one of the psychiatrists involved in the multi-million pound PACE trial (in which to GPs were written to asking them to send anyone with chronic fatigue (or synonym) for entry ,thereby opening the trial to anyone who was merely chronically tired.).
     
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    yeah "Undeserving sick"
    they are eugenicists at heart.

    they just want to prove that we are just making it up so can be validly eliminated.
    What, is anyone shocked at that blatantly obvious fact?
    What do you call deliberate massive conspiracy to deny medical help for millions of seriously sick people?
    I call it genocide, don't you?

    once you can de-humanize, blame, dmeonize someone, it's much easier to abuse and eradicate them.
    doesn't matter if it's because of xenophobia, utter arrogance of percieved superiority, to save money for corporations, to save governments money, to save the rich from some tax money, form beleif they are doing society a favour...it's all mass murder by the back door.

    I understand why folk want to sue these gits in civil court, but really, they should all eventually face a firing squad for Crimes Against HumanityI know that may sound outrageous, but go look at these nutbars, and the similar lunacy of similar nutbars frrom about 1890 to 1945
    the crackpot experiemnts and ideas osfthe Nazi "doctors" and the Soviet "pseudo-scientists" are very pertinent
     
  15. Esther12

    Esther12 Senior Member

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    The 'undeserving sick' quote is taken rather out of context. He's talking about the way paitents are commonly percieved, rather than saying he thinks they should be seen as undeserving. If you read the whole lecture, he's still an arse, but not in a way that can easily be summed up by a one sentance quote. (There's another thread on here where some people got really irritated by me 'defending' Sharpe over this quote, it could be dug up if anyone's interested in the discussion.)
     
  16. Cort

    Cort Phoenix Rising Founder

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    Sure missed that one! Nonclinical groups! Good lord - I've never seen that before.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Here's the Paper

    Got the paper...it's attached. :cool::cool:

    Originally Posted by Cort
    Sorry IamME -didn't mean to refer to you with that statement. I was referring to whomever argued in the other Forums not to pursue immune research after exercise.

    If you look at my other comments in context you'll see I was referring to comments regarding depression....I was not trying to characterize Wessely's or others approach. My point is that the field is messy and that findings can be interpreted by different parties in different ways at this point and that fact should not keep us for researching those areas.
     

    Attached Files:

  18. Angela Kennedy

    Angela Kennedy *****

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    Thanks very much for the paper Cort.
     
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Esther
    "In vino, veritas"
    or rather in their case
    "In slip up, is the truth" ;)
     
  20. oceanblue

    oceanblue Senior Member

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    I think you've made a really important point: what is the appropriate comparision/control group for such studies - healthy people or those with clearly diagnosed organic illnesses? Using both would probably throw more light on the situation.
     

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