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175 thoughts on “XMRV Chronic Fatigue Syndrome Update

  1. BillyJoe says:

    SH,

    “You are incredibly naive. Your non-argument is completely weak. You are arguing your viewpoint against my viewpoint.”

    Yes, I am arguing against free will. In fact, that argument is strong and pretty well unassailable. The alternative is incoherent, unless you are a “ghost in the machine” type of person. Then you have no evidence. Either way you lose. So, yes, it’s genes and the environment and, after a lot of computation, the brain spits out the result.
    Anyway, now that I’ve put you off completely…

    “I believe that at some point, you have to blame the individual, and hold them responsible for their own actions.”

    At what point? The genes? The mother who overfed her child? The father who abused his daughter? The schoolboy who bullied her? Because she likes rich food because it soothed her? How do you decide where to lay the blame and who to blame. It’s a useless activity. Just help the patient and keep helping her. And look at her as a person, not a disease. Not that I’m saying that you don’t. Just that’s how you come across.

    “I guess you believed that it’s not the alcoholics fault for running over the child?”

    I’m saying there’s no point. The child is dead. The alcoholic is facing a future filled with mental anguish. Society will lock him away. Hopefully the reason will be to protect the public. And to acknowledge the anguish and justifiable anger of the child’s family.

  2. What a horrible outlook on life. I truly feel sorry for you.

  3. weing says:

    @MTR,

    “What is the difference between a psychiatric disorder and a neurological disorder?”
    Although there is some overlap, they are treated by different specialists. Just as, for example, neurologists and orthopedists. Meds prescribed by psychiatrists all affect the functioning of different regions of the brain. Are you trying to say the brain is different from the mind?

  4. mousethatroared says:

    Damn weing, that didn’t go how I planned. :) I don’t want to speak for Linda, who you were quoting, but I’ll answer in terms of my comments on brain versus mind above.

    The mind is not “different” for the brain in the neurological sense. But the mind is what we experience as “ourselves”. It is the interface that we make conscious decisions with…our cognitions (and more) That interface is not an entity disconnected from the softward/hardware of the brain, but it is a useful device for input output.

    Probably a psychologist could describe it better. For me, mind versus brain is not suggesting duality. It is merely a useful mental devise that make cognitive therapy a hell of a lot easier as you make the decision how to respond to an anxiety evoking situation. i say my brain is telling me that this is dangerous, but that might not nessarily be true. I can use my mind to respond to that knowledge in the best way possible.

    Accurately, it is ALL the brain, biology, chemistry.

    There’s quite a few BrainScience podcasts that deal with mind/brain issues that might communicate this better than me.

  5. BillyJoe says:

    SH,

    “What a horrible outlook on life. I truly feel sorry for you.”

    It’s a view that excludes pay-back and retribution.
    It’s a view that enables you to forgive and forget and move on.
    It’s a view that shows you how look beyond superficial appearances.

    So, actually, the shoe is on the other foot.

    Most importantly it is the view backed up by science.

  6. mousethatroared says:

    SH to me “Your having a psychiatric diagnosis does not excuse you following someone’s every post with a weird or snide comment. So if I say something that offends you, does it “right” it by trying to be offensive back? Do two wrongs make a right? Honestly, and boy I sure hope I don’t offend you, what I see is you using your psychiatric diagnosis as an excuse to behave poorly. Hey, if I’m offensive, at least I just admit that my online persona is brutal.”

    So you think making snide comments to someone who is “brutal” is weird? Did you grow up as black sheep in a buddhist monastery?

    No? It’s just your “online persona” that is brutal? You’re not REALLY like that. I wonder, what else is not true about your online personna “doctor”?

    Look. To me you are beginning to look a lot less like a overzealous anti-CAM doctor and a lot more like a troll who’s sole purpose is to amuse yourself by stirring up discord and disrupting the purpose of this board.

    I would suggest, if you actually are an anti-CAM doc, who made the poor decision to adopt a “brutal persona”…if you don’t like people taking shots at you, don’t wear a clay pigeon costume.

  7. mousethatroared says:

    SH to me “This is a good time to apply my definition. Neurological diseases, such as myasthenia gravis” yada, yada yada.

    Yeah sure “doctor”

  8. evilrobotxoxo says:

    @SkepticalHealth: my point is that there is no meaningful definition of what constitutes a psychiatric disease vs. a non-psychiatric disease. The definitions we have are completely arbitrary and based on historical convention. Why are migraines or phantom limbs considered neurological, but psychogenic pain is not? Alzheimer’s used to be considered a psychiatric disease, but now it’s treated by neurologists. At least partially – psychiatrists do treat the “psychiatric” aspects of it, i.e. behavioral problems. A lot of people, including you, apparently, believe that having an unknown etiology is part of the definition of “psychiatric.” I strongly disagree with this. However, many psychiatrists apparently agree with you because when the cause of Rett Syndrome was found, some thought it should be taken out of the DSM. In any case, if schizophrenia were found to be caused by a virus, I feel strongly that it would still be a psychiatric illness; it would simply be one with an infectious etiology. In the case of CFS, what we’re really discussing is something along the lines of whether or not it’s a primary CNS disease vs. some other sort of disease that has CNS manifestations, but I’m just trying to point out that even for most diseases that everyone agrees are psychiatric, we don’t know that they’re not CNS manifestations of some other process.

  9. evilrobotxoxo says:

    One last thought: ultimately, what defines a psychiatric vs. neurologic (vs. whatever else) type of disease is which type of physician has the best skill set for treating it. Saying that schizophrenia is psychiatric illness is like saying that appendicitis is surgical illness. It’s a practical definition rather than a definition reflecting anything about the underlying pathophysiology.

  10. I agree about your definitions, and to answer some of your questions: overlap.

    @MTR, looks like you’re having an exacerbation of one of your psychiatric conditions. I guess this isn’t your fault. Let me give you somethig to chew on… Oh wait. (Hey, not my fault.)

  11. @MTR,

    I appreciate you calling me a troll simply bc I IDE tidied your abuse of your diagnosis.

    Just to note: nobody has identified any consistent way to identify CFS patients. The very thing the cam quacks called me a troll for.

  12. geo says:

    @skepticalhealth

    “Just to note: nobody has identified any consistent way to identify CFS patients.”

    What a surprise that this medical breakthrough was not made in the comments section of a blog post. As I pointed out in my last post: “there is much that is unknown about CFS, but that is no excuse for your quackery.”

  13. Linda says:

    @IVI
    I take your point, I’m with you on this, because I’ve seen the same things you have seen.
    But I’m stuck with the ‘if only’ aspect of it all: If only everyone had been more skeptical, but apparently they were not.

  14. mousethatroared says:

    SH – “I appreciate you calling me a troll simply bc I IDE tidied your abuse of your diagnosis.”

    No – you are confused about the chain of events. Review the thread.

  15. Linda says:

    @ weing

    that quote! “But that’s just because someone here ….. doesn’t make the distinction between mind and brain.”
    The remark was not really about the mind/brain problem (I’m a non-dualist – the brain as the physical substance/place that enables the immaterial process of the mind)

    What I meant is that it matters whether a disease is *labeled* as ‘in the brain’ (neurological) or ‘in the mind’ (mental/psychiatric). In general it matters to patients whether they end up in de hands of neurology or in the hands of psychiatry. I think it was once said (don’t know by whom) that “neurologists take all the curable diseases while psychiatrists are left with the ones they can’t help”.

    In ME/CFS it’s a longstanding issue. A neurological disease according to the WHO (code G 93.3 current version ICD-10), but neurasthenia/somatoform disorder/functional disorder/psychosomatic etc etc according to psychiatrists. Unfortunately, for patients with ME/CFS in reality the difference between being regarded as one of the ‘deserving’ or the ‘undeserving sick’ in society. But that’s another story.

  16. mousethatroared says:

    Also “IDE tidied”? What does that mean. That’s coding jargon, isn’t it?

  17. Linda says:

    @SkepticalHealth

    “Why do people always call others “close minded” just because they don’t believe whatever non evidence-based crap that person is preaching about?”

    In this case it’s a red herring.
    You were the one preaching about your own beliefs and prejudices about CFS since the beginning of this comment thread. And ignoring the evidence others brought against them. That’s close-mindedness. (maybe there’s a better word, but my English is not perfect). As IVI said “To take as a default an ascription to psychiatric illness, in all conditions of unexplained aetiology is (from an SBM perspective) perverse.”

    “Non-evidence crap”. Yep that’s what I do all the time! :)
    I think your problem was with me questioning the evidence-base on which the current ‘gold standard’ treatment advice for ME/CFS patients (CBT/GET combi therapy) is based. Correct?
    I’d say it is reasonable to do that because there is a huge discrepancy between results reported in the RCTs (mild benefits) and those reported by patients (rather high rates of adverse reactions).
    One of the possible explanations is the (to me, shocking) absence of harms reporting in these behavioural RCTs. Worth reading : http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
    In 2006, an audit of the adult specialty ME/CFS rehabilitation (CBT/GET) clinics in Belgium found that, compared to before treatment, about one-third of participants reported worsening of their pain, concentration, and sleep after CBT/GET . http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf (for those who read French). A recent review of the Norwegian Knowledge Centre for Health Services found they could no longer support recommendations for individualized exercise therapy (a form of graded exercise therapy) and/or cognitive behavioural therapy for all patients with ME/CFS. http://www.sintef.no/upload/Teknologi_samfunn/ME-rapport.pdf (Norwegian, sorry) And I notice the CDC have also changed their ‘management of CFS’ info now: more emphasis on personalized medical care, less on the CBT/GET panacea than before http://www.cdc.gov/cfs/management/index.html

    The promotion of CBT/GET as ‘effective treatments’ for CFS has also contributed to the mental health meme about CFS. IMO they are supportive therapies like in other chronic diseases. In CFS I think is not clear at all for which patients it is safe and helpful, and for whom it might be harmful.

    See also the info on PEM in CFS from Joey.

  18. BillyJoe says:

    He was using his iPad.
    If you mistype, it suggests a correction to which it defaults.
    I assume from this that SH is not a touch typist, otherwise he would have caught that stupid default and cancelled it.

  19. evilrobotxoxo says:

    @Linda: you have it backwards. The old joke is that neurologists understand a lot but can’t do very much, and psychiatrists don’t understand much but can do a lot. It has more than a bit of truth to it, in the sense that neurologists treat patients with more severe brain pathology, such as strokes or degenerative brain disease.

  20. @daedaleus,

    Do you have any updates for “feeding the troll” that demonstrate reliable tests that can readily identify CFS patients in the population? You stated that you were familiar with the CFS literature and that these exists. I can’t find them. Please point them out for me.

  21. @BJ

    Most importantly it is the view backed up by science.

    The determinism vs. free will debate is “soooooo” Philosophy 101. Terribly uninteresting. Do you really consider this a “destroyed argument”? That you had nothing else to say about an alcoholic being drunk and running over a kid except that it was pre-determined? …

  22. @MTR

    Look. To me you are beginning to look a lot less like a overzealous anti-CAM doctor and a lot more like a troll who’s sole purpose is to amuse yourself by stirring up discord and disrupting the purpose of this board.

    Please do not insult me just because you do not like my point of view on medical topics.

  23. @Linda,

    Half of the links you posted were in a foreign language, and the other one was a report from a CFS “institute.” I only read the CDC link. I appreciate that you want to support studies that move away from treatments that reinforce the psychiatric nature of CFS. But just because you believe it, doesn’t make it so. Until we have some kind of evidence that it’s caused by anything other than a likely somatiform disorder, it sure seems like the most logical and responsible action is to consider it a mostly psychiatric issue, much to a minority of vocal patients’ dismay.

    (It’s interesting that the CDC recommended acupuncture for CFS “pain.” Why would placebo medicine help with that?)

  24. Valya says:

    A lot of these comments just show how far we have to go in de-stigmatizing mental disorders. There’s a reason some CFS patients object so strenuously to the possibility that CFS is a psychiatric problem, to many, a psychiatric diagnosis means one doesn’t have a “real” disease. It doesn’t matter how debilitating major depressive disorder, bipolar, OCD, etc can be.

  25. mousethatroared says:

    I said – Look. To me you are beginning to look a lot less like a overzealous anti-CAM doctor and a lot more like a troll who’s sole purpose is to amuse yourself by stirring up discord and disrupting the purpose of this board.

    SH said – Please do not insult me just because you do not like my point of view on medical topics.

    It was more of an observation than an insult.

  26. @Valya,

    That is interesting. Sometimes I wonder if certain CFS patients would be better off just “accepting” that they have a psychiatric condition, instead of spending so much energy searching for an “answer” that may simply not exist. Of course, I’m not saying halt all research and formally declare it a psychiatric condition, but I don’t feel the chastising of people who state that a psychiatric etiology is the most likely and who point out that there are no legitimate physical findings or laboratory tests is warranted.

  27. mousethatroared says:

    Sometimes I can’t help but wondering if a CFS patient wouldn’t be better off working in an honest relationship with a science based doctor to find the therapies and treaments that are most likely to provide relief in their situation.

    Not listening to the ‘in my experience’ advise of some guy on the internet who claims to be a doctor.

  28. Dear Moderators,

    I am highly offended by MTR’s constant trolling at me, her condescending tone, and her accusations of purposeful misstatements.

  29. BillyJoe says:

    SH,

    In the macroscopic world of our everyday experience, cause and effect rules. In the microscopic world of the quantum, probability rules, but it is possible that some of that seeps through into the functioning of the brain. In any case, there is no room for free will. Free will is supported only be dualists, unless it is re-defined to mean something completely different, in which case we are not talking about free will.

    “That you had nothing else to say about an alcoholic being drunk and running over a kid except that it was pre-determined? …”

    You must have missed this:

    I’m saying there’s no point. The child is dead. The alcoholic is facing a future filled with mental anguish. Society will lock him away. Hopefully the reason will be to protect the public. And to acknowledge the anguish and understandable anger of the child’s family.

  30. mousethatroared says:

    Hey SH – It’s worth a try.

    Personally I believe it’s important to constantly remind ourselves that anonymous people on the internet are not nessasarily who they say they are. If HH and DG disagree, they can let me know.

  31. geo says:

    @ SkepticalHealth:

    So are you now back-tracking from your quackery? You do not seem to be defending it:

    http://www.sciencebasedmedicine.org/index.php/xmrv-chronic-fatigue-syndrome-update/comment-page-2/#comment-100778

  32. @MTR,

    Personally I believe it’s important to constantly remind ourselves that anonymous people on the internet are not nessasarily who they say they are. If HH and DG disagree, they can let me know.

    Indeed, a healthy dose of skepticism is always warranted. Things are always a two-way street. Can you imagine if I stated that I do not believe you have an anxiety disorder with rumination, and that you only claimed that for secondary gain (sympathy, and to use it as an excuse for certain behaviors.) That would be a terrible thing, right? It’s interesting that it’s fine for you to be skeptical of me, but in the situation that I would be equally skeptical, there would be anger, threats, and who knows what else.

  33. @geo,

    Please identify what “quackery” I wrote.

  34. geo says:

    @ SkepticalHealth:

    I did, in the post I linked to, it was almost everything you claimed that we ‘know’ about CFS. The whole ‘illness of obese middle-aged, wealthy white women in western countries, and without viral infections being a risk factor’ thing.

  35. mousethatroared says:

    @SH – true. Or maybe I don’t actually have an anxiety disorder and I used the claim as a trap, knowing that a troll would immediately seize upon my “confession” and pull the old ‘female neurotic stalker’ routine, thus revealing the kinda of person they really are…hard to tell, eh?

    Of course, I have a pretty long history on this board, so I’ll let people decide for themselves based upon my past comments. Same goes for you, people should decide what kind of person you are based on your past comments.

  36. Linda says:

    @evilrobotxoxo

    “you have it backwards”

    Possibly. Interesting. I’ve been reading about the different discourses about disease in psychiatry and neurology, but that doesn’t make me an expert.

    We’re stuck with 2 jokes then about neurology/psychiatry? One that says that “neurologists understand a lot but can’t do very much, and psychiatrists don’t understand much but can do a lot” and the other one going round that says “neurologists take all the curable diseases while psychiatrists are left with the ones they can’t help”.

    ME/CFS (which was the topic) might be labeled a ‘neuropsychiatric’ disease in the future, but just as well it might not be. I remain open to all possibilities.

  37. In Vitro Infidelium says:

    @ Valya
    Quote “. There’s a reason some CFS patients object so strenuously to the possibility that CFS is a psychiatric problem, to many, a psychiatric diagnosis means one doesn’t have a “real” disease. ” unquote

    It couldn’t possibly be because all the personal experience of the symptoms of the illness are physical and that therefore (whatever the aetiology actually is) the patient has a wholly physical experience that seems to them utterly removed from anything that could be psychiatric. Blaming the patient for the nature of their experience and setting that blame in the context of societal misperceptions of psychiatric illness is somewhat perverse, don’t you think ? If M.E/CFS truly were a single discrete psychiatric illness, then it would be one of profound delusion, and given the epidemiological evidence that would make it the most common psychotic condition. To date that circumstance seems generally unrecognised – probablly because it doesn’t exist.

    IVI

  38. @geo

    I wrote:

    What we know:
    - No reasonable evidence that CFS is in any way related to any virus currently known to man.
    - CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups and sexes.
    - CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed
    - CFS essentially does not exist in certain groups of people (are there any African Maasai who still live in the bush that complain of CFS?)
    - There are no objective findings whatsoever in patients with CFS, which is a characteristic shared with most (all?) mental disorders, and is not shared with any communicable or non-psychiatric disorders.

    That stands. My professional literature review service agrees with me. I’m sure you can find obscure and single studies to refute some of these points, but the bulk of the evidence supports what I wrote.

  39. Scott says:

    @ IVI:

    Suggesting that a particular illness may be psychiatric in nature does not in any way constitute “blaming the patient for the nature of their experience.” And nobody’s suggesting that it’s necessarily a single clearly delineated condition – certainly not that it represents profound delusion!

  40. mousethatroared says:

    SH – You stand behind that quote? “CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed”

    Does your professional literature refer to CFS “victims”? What are they scare quotes for? Are you suggesting that CFS patient are not victims of a difficult sometime debilitating disorder?

  41. Linda says:

    @SH

    Your logic still escapes me.
    This is what you said to me:
    “Half of the links you posted were in a foreign language, and the other one was a report from a CFS “institute.” I only read the CDC link. I appreciate that you want to support studies that move away from treatments that reinforce the psychiatric nature of CFS. But just because you believe it, doesn’t make it so. Until we have some kind of evidence that it’s caused by anything other than a likely somatiform disorder, it sure seems like the most logical and responsible action is to consider it a mostly psychiatric issue, much to a minority of vocal patients’ dismay.”

    Hehe, and this was said by the only one preaching his belief like a religious zealot since the beginning of this thread. I remain open to wherever the science goes.
    Your belief (no known etiology, thus ‘mental’) remains as perverse as it was in the beginning. Others have pointed it out to you, but you prefer to ignore it. Easy. You’re in your own cosy, little, reassuring world.

    “Foreign” languages. Hey, what a scourge. Do you realize how ridiculous this sounds to me? Has it occurred to you valid info might be written down in other languages than English? I’m really sorry if English is the only language you master, and if you haven’t discoverd modern translation technology yet. I use English wherever possible, but these were European government reports not available in English. I prefer to link to original sources so everyone (who is willing to) can check.

    And oh, hell, imagine patients and patient organizations had good expertise on their own diseases! Gee, let’s run from this, the heresy! where’s the world going to? A relic of an ancient paternalistic view of medicine.
    You disregard that specific paper about the lack of harms reporting in behavioural ME/CFS trials?. If harm is being done to patients, then it matters to get to the bottom of this.

    ‘Vocal patients’: Patients haven’t been as vocal and effective as they might be, said Ian Lipkin. (remember the one heading the study this article was about? ) http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

    Your ‘professional literature review service’. Which one are you using?
    Read my first comment to you.

  42. geo says:

    @ SkepticalHealth:

    “That stands. My professional literature review service agrees with me. I’m sure you can find obscure and single studies to refute some of these points, but the bulk of the evidence supports what I wrote.”

    I don’t think you could find any evidence to support your position. eg: I do not think you will be able to find a single prospective study, no matter how obscure, which does not find glandular fever leading to a significant increase in developing CFS. I do no think you will find a single population based study which shows that ‘CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups’.

    If your literature review service is claiming otherwise, it would be interesting to see you quote these sections, and the papers it cites in support of it’s claims. I would be surprised is such a service were as incompetent as you seem to be claiming. I expect that it is your quackery which is the problem here.

  43. BillyJoe says:

    SH,

    I know it’s sort of off topic for this thread and so I won’t pursue it here, but I would like to offer you a personal challenge on the topic of free will:

    Without re-defining “free” and “will”, I challenge you to come up with a possible mechanism for free will. You don’t need to have any evidence for it, just a possible mechanism.

    I’m wiling to bet that you cannot do it without appealing to supernatural agency.
    From the point of view of naturalism/ physicalism/materialism, the idea if free will is incoherent. There is probability at the quantum level (and maybe at the macroscopic level) and cause and effect at the macroscopic level. Neither can be a basis for free will.

  44. @Linda,

    Despite your sarcasm and insults, which are unnecessary, you didn’t make a single valid point, nor did you refute anything I wrote. You can’t, because the bulk of the evidence doesn’t support anything contrary. You may not like what you read, but don’t insult me just because you’re beliefs are not in line with the consensus.

  45. @BJ,

    I couldn’t care less about that debate than if you asked me to disprove the tooth fairy or an invisible unicorn. Compared to anything medical, it’s extraordinarily pseudo-intellectual and frankly lame. I appreciate that it’s your absurd red herring regarding people making unhealthy choices.

  46. mousethatroared says:

    SH wrote last night “- CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed” and “That stands. My professional literature review service agrees with me.”

    You didn’t answer me, SH. Why the scare quotes on victims. Are you trying to imply that CFS aren’t victims of a difficult debilitating disorder?…while being subtle enough to creep under moderation?

    Not one of these commentator with CFS has advocated any CAM or quack treatment, yet you still do what you can to belittle them and the condition they are struggling with.

    So in response to threats of being banned, you have switched from using an axe to a slow poison. Big improvement there.

    I don’t think there’s any real exhange of ideas in your posts. I think you are just using the editors reluctance to ban posters as an opportunity to bait and heckle patients of a chronic disease. I think that’s misuse of a site that has shown such dedication to patient care.

  47. BillyJoe says:

    SH,

    “I appreciate that it’s your absurd red herring regarding people making unhealthy choices.”

    Nope. From a practical point of view, it is unhelpful to blame patients for their illnesses. As a sort of bonus, I was attempting to show you how science also backs that view. No freewill anyway, just chance and cause and affect working through genes and environment. Of course you want to be able to keep blaming patients for their illnesses so that you can send them packing. So I can understand that you want to avoid a little cognitive dissonance. :l

  48. In Vitro Infidelium says:

    @ Scott
    “Quote “Suggesting that a particular illness may be psychiatric in nature does not in any way constitute “blaming the patient for the nature of their experience.” And nobody’s suggesting that it’s necessarily a single clearly delineated condition – certainly not that it represents profound delusion!” unquote

    Valya’s point was that M.E/CFS patients are resistent to a psychiatric diagnosis because of a perception of psychiatric illness – and the implication appeared to be that a) such resistance was misplaced and b) was contributory to the mainatenance of a general misperception of psychiatric illness. No where did Valya acknowledge that the reason M.E/CFS patients are resistent to a psychiatric diagnosis, has nothig to do with their peronal or sociental judgement about being ‘mentally ill’ – but the sheer bloody simple fact that all their symptoms are physical !!

    If we take Valya’s (apparent) contention that M.E/CFS patients are ‘in denial’ and that such denial is contributory to a maintenance of of a misperception (whether personal or societal) of psychiatric illness – that axiomatically leads to blaming the patient. Which is presumably why SH was approving of Valya’s post.

    And yes I know there is a determined avoidance of classing M.E/CFS as a delusional condition. But my point is, that is a dishonesty on the part of those contending M.E/CFS is a psychiatric condition: If M.E/CFS is experienced by patients as wholly physical ( overwhelming fatigue, malaise following activity, persistent muscle and joint pain, nausea, disautonia, photosensitivity, persistent headache etc) and the contention is that none of these symptoms have a physical reality, then one is left with the symptoms as being delusional; excepting that there is some arcane explanation regarding behavioural maintenance of real symptoms. To date there is no evidence that behavioural maintenance is involved and all cognitive interventions have produced abysmal results. Those who favour a pysychiatric label should honestly follow their predeliction and acknowledge that (in their terms, not patients) M.E/CFS is a major delusional illness. This of course is studiously avoided by those favouring the pysychiatric label and recourse is consistently made to the highly dubious ‘functional’ classification which is of immense appeal to those arguing from SH’s perspective because it implies a significant element of patient responsibility via ‘illness maintenance behaviours’ and illegitimate thinking. How such ‘judgemental’ processes work to ‘blame patients’ can be seen in http://journals.cambridge.org/action/displayAbstract;jsessionid=B1886811C615DBA4EBE42EDC56C871C6.journals?fromPage=online&aid=8243790 – note the sentence ” If patients hold a clearly incompatible model of their illness, it is unlikely that they will engage with, and successfully complete, therapy.” – a proposition that would be entirely expected within the most corrupt quack medicine. I would suggest that if M.E/CFS patients needed anything beyond their own somatic experience to disuade them of the validity of psychiatic intervention in M.E/CFS is the Orwellian notion of an “incompatible model of their illness”.

    IVI

  49. @geo, @Linda,

    Here is an excerpt from UpToDate:

    CFS is associated with the following groups:

    - It is primarily a disorder of young to middle aged adults, but cases in children have been recognized. It may also occur in the elderly, although coexisting medical conditions usually preclude its consideration in this population.

    - Most series report that CFS is about twice as common in women [5-7].

    - Few cases have been reported in minorities or among lower socioeconomic groups. However, the incidence in these groups may be underestimated due to their lack of equivalent access to health care institutions in which CFS is studied

    And an excerpt on the relation to depression:

    Depression — Depression is a theme that has pervaded the CFS literature for years. It is a charged issue that patients prefer to dismiss because of the personal and societal stigma attached to psychiatric diagnoses. Three studies verified that two-thirds or more of patients with CFS meet existing psychiatric criteria for anxiety disorders, dysthymia, or depression [76-78]. Among patients who develop viral illnesses, a subsequent mood disorder is predicted better by the psychiatric history preceding the infection, whereas fatigue correlates better with EBV infection and inversely with the patient’s premorbid level of physical fitness [79].

    Some interpret these findings as implying that the fatigue results from a psychiatric disorder; others argue that the psychiatric problems arise from the chronic fatigue and disability. It is reasonable to expect that a functioning, highly productive person who suddenly becomes an invalid might become depressed.

    A prospective study of patients with an acute viral type of illness found that a history of psychiatric morbidity, the patient’s belief about viruses as the cause of their complaints, and how the clinician reinforced those beliefs could conspire to predict chronic fatigue [80]. The infective symptoms predicted fatigue initially but not six months later, suggesting that CFS may be more related to premorbid characteristics of the patient and clinician behavior than to features of a precipitating viral illness.

    Even if depression is not the underlying cause but rather a consequence of CFS, it should be aggressively treated so that the patient can better manage CFS.

    Now, feel free to go ahead and say how all my information is wrong and terrible, and how all your information is fantastic and must be much more accurate. Me? I’ll stick with the expert consensus.

  50. And I fully expect the few fringe believers to say how horrible of a doctor I am, and how I don’t know about the latest research, and how you feel bad for my patients, etc, just because my point of view is in line with what is widely accepted as being “known.”

  51. @Blue_Wode just posted this, a new case of a man who received chiropractic manipulation of his c-spine and developed subsequent VAD:

    http://www.cbs58.com/news/local-news/Local-man-suffers-stroke-after-visit-to–172314241.html

  52. geo says:

    @ SkepticalHealth:

    Are you kidding me? Ignoring the fact that nothing you posted disputes any of the evidence from prospective studies of glandular fever…

    You want to ignore all of the population based studies which have been done (by the CDC and others), and support you own prejudices with an unreferenced report, which makes it clear that it could be misleading in the absence of population based studies?

    “Few cases have been reported in minorities or among lower socioeconomic groups. However, the incidence in these groups may be underestimated due to their lack of equivalent access to health care institutions in which CFS is studied”

    You are such an absurd quack.

    The fact that you’d end with a sneer about the possibility of dismissing all your information… all of that heap of compelling evidence you provided – are you even reading what you post?

    Due to the nature of CFS and how it is diagnosed, it is difficult for us to be confident of anything – that does not excuse your quackery. There are plenty of quacks around CFS – I expect that you could find someone claiming to be a CFS expert whose review of the condition reflected your prejudices – that would do nothing to justify your quackery.

  53. ^ I completely predicted your post. Anger, insults, and nothing positive contributed.

  54. Also, please conduct yourself in a mature manner. Your insults add nothing to the discussion, and could be viewed by some as trolling.

  55. @geo,

    re: Infectious Mononucleosis, from UpToDate:

    Epstein-Barr virus — EBV received a great deal of attention in the mid-1980s as a possible etiologic agent for CFS. This hypothesis was based upon three observations. First, EBV persists for life and reactivates frequently, thereby affording the virus the biologic potential for chronic illness. Second, patients with CFS were often found to possess higher than expected titers of antibodies to EBV capsid and early antigens, or to lack antibodies to EBV nuclear antigens (EBNA), each suggestive of recent or active infection. Third, some patients clearly attributed the onset of their illness to a mononucleosis-like infection.

    However, later observations suggest that the proposed relation between EBV infection and CFS is not correct. The serologic profiles of patients with CFS are nonspecific [7,32]. One study, for example, found that EBV serologies were unable to distinguish between 15 patients with severe fatigue of unknown etiology for two months, and over 100 patients with less severe fatigue or completely healthy controls. In addition, most cases of CFS either evolve insidiously or follow influenza-like or gastroenteric-type illnesses rather than mononucleosis.

    :)

  56. geo says:

    @ Skepticalhealth:

    So you are reading what you’re postng? It’s just that you do not understand it?

    Nothing you just posted does anything to challenge the evidence which shows that glandular fever/mono does not lead to a significant increase in the risk of fulfilling the criteria for CFS. Which part do you think supports your claims?

    When I call you an absurd quacky – I do not mean to be insulting, I am simply trying to make clear to you what the nature of your condition is, and why you seem so easily misled by your own prejudices.

    How can I positively contribute to a discussion when you are trying to hide behind a review of the literature which does not support your position? I could criticise aspects of the review, but that would have little to do with your quackery.

  57. Are you confusing me with someone else?

    Everything I’ve stated is in line with this review. I do not believe there is any infectious or non-psychiatric etiology to chronic fatigue syndrome. I think the most likely explanation is a somatiform psychiatric disorder. I believe it is more common in certain populations and almost unheard of in others. Where is this “quackery”? (I have never advocated any form of quackery in my life.)

    The people I am challenging are those that believe that CFS is some type of post-viral syndrome, a position for which there is no reasonable evidence.

  58. geo says:

    @ Skepticla health:

    I said:

    “Pretty good evidence from prospective studies of glandular fever/mono and other viruses as significant risk factors for going on to be diagnosed with CFS”

    You said:

    “The “pretty good evidence” is only convincing to people who want to believe it.”

    I said:

    “Oh, I see. You’re that sort of ‘skeptic’. I feel sorry for you and your patients.
    There are lots of studies on this. This one looks at three different viruses, and one of the authors was Bill Reeves, who was pushing psychological work on CFS at the CDC when this was published:
    http://www.ncbi.nlm.nih.gov/pubmed/16950834
    I wouldn’t put much faith in to any one study, particularly when it comes to CFS, but the association with glandular fever has been found a number of different times, so it would be rather surprising if it turned out to be completely wrong.”

    You said:

    “Yes, I’m one of *those* skeptics, who doesn’t believe in unproven and disproven things like magical viruses or post-viral syndromes causing debilitating fatigue primarily in middle-aged white women who more often than not have psychiatric disorders. As rough as that may be to write, or to read, it’s mostly true and backed by the majority of the evidence.
    What we know:
    - No reasonable evidence that CFS is in any way related to any virus currently known to man.
    - CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups and sexes.
    - CFS “victims” are more likely than not to have a psychiatric issue, possibly undiagnosed
    - CFS essentially does not exist in certain groups of people (are there any African Maasai who still live in the bush that complain of CFS?)
    - There are no objective findings whatsoever in patients with CFS, which is a characteristic shared with most (all?) mental disorders, and is not shared with any communicable or non-psychiatric disorders. ”

    I replied here: http://www.sciencebasedmedicine.org/index.php/xmrv-chronic-fatigue-syndrome-update/comment-page-2/#comment-100713

    And so on – you’ve generally failed to respond to the points I have made, so there’s no point recounting this here.

    At no point did I ever say that CFS was consistently or universally a post-viral syndrome. It’s a diagnosis of exclusion given to patients likely to be suffering from all sorts of different problems. The ignorance and uncertainty which surrounds CFS does not excuse your quackery.

    Your claims about the prevalence of CFS are also completely unsupported by the evidence, and the review which you claimed supported your positions explicitly states that the fact that CFS patients in specialist centres are more likely to come from higher socio-economic groups may just reflect the fact that other groups may be less likely to gain access to such health-care. Several population based studies indicate that CFS is just as, and maybe even more, common amongst lower socio-economic groups and different ethnicities. Your claims about international prevalence seem to be entirely a result of your own imagination, and again, go against the evidence we have from population based studies.

    A degree of scepticism should be required for all claims about CFS as it is so difficult to diagnose in any sort of consistent manner, and the assumptions of researcher seem to go on affecting their results and interpretation of results, but you seem to have been willing to dive right in, making very bold claims that go against the available evidence. This is quackery.

    Look at how I discuss the findings from prospective studies of glandular fever:

    “I wouldn’t put much faith in to any one study, particularly when it comes to CFS, but the association with glandular fever has been found a number of different times, so it would be rather surprising if it turned out to be completely wrong.”

    Then look at your responses to evidence you are not aware of or do not understand, and studies you seem not to have read.

    “No there’s not.”

    “The “pretty good evidence” is only convincing to people who want to believe it.”

    “What we know:”

    Even ignoring the fact that there is compelling evidence against so many of the claims that you think we ‘know’ – the fact that you’re so happy to jump in with these sorts of assertions, despite the fact that you seem not to have taken the time to familiarise yourself with the evidence in this area, is a prime example of quackery. It is not acceptable with cancer, and it should be no more acceptable with CFS. If you want to make medical claims with being a quack, you have a responsibility to restrict yourself to those claims which are supported by compelling evidence, not just uncertainty and prejudices.

    re: “I have never advocated any form of quackery in my life.”

    I truly believe that you think this is true, and that’s one of the things which is so worrying about your quackery.

  59. Scott says:

    @ IVI:

    Psychiatric disorders can produce physical symptoms without being delusional. IMO your reaction is precisely what Valya was talking about.

    And certainly there was no contention that anyone is “in denial” – explicit or implicit.

  60. mousethatroared says:

    Scott – when someone says “Sometimes I wonder if certain CFS patients would be better off just “accepting” that they have a psychiatric condition, instead of spending so much energy searching for an “answer” .

    Isn’t that a contention that someone is in denial?

  61. In Vitro Infidelium says:

    @Scott
    Quote “Psychiatric disorders can produce physical symptoms without being delusional. IMO your reaction is precisely what Valya was talking about.” unquote

    So my criticism of one small part of psychiatric practice equates to a derrogation of the validity of the whole of mental ill health ? Your logic is that I must accept your preferred (and SH’s !) labelling of an illness, or otherwise I’m contributing to the denigation of mental illness per se. You might guess I’m not attracted to your proposition. As for (I feel you couldn’t quite bring yourself to say it ) shh ! S-o-m-a-t-o-f-o-r-m Disorder, yes brilliant, critique the proposition of a non psychiatric aetiology for M.E/CFS on the basis of a psychiatric construct that has absolutely zero identified pathophysiology. Somatoform and Functional disorders are precisely where psychiatry hits the buffers of prior plausibility, these are constructs which have their roots in the non science of Freudianism and Jungianism and they only exist as authoritative expositions of ‘experts’ who can provide no meaningful tests of their own pronouncements.

    To characterise M.E/CFS as a delusional disorder would clearly demonstrate the unsupportability of an exclusive psychiatric definition of M.E/CFS, but there is no less reason to describe M.E/CFS as delusional than there is to characterise it as Somatoform or Functional. The difference is that (so long as the patient is without the defence of a definitive organic process of illness) , Somatoform and Functional provide ill defined labelling into which anything ill health can be squeezed, with the employment of strong approbational conditionality such as ‘catastrophising’, ‘activity avoidance’ and ‘sick role’.

    For the record, just so there’s no further playing of the – ‘you hate mental illness’ card. I consider a mental health specialism to be one of the key elements of a comprehensive health service and the denigration of (for want of a better term) psychiatric illnesses is obnoxious and should be abjured. Equally I want to see psychiatry meet all resonable tests that might be demanded by an SBM philosophy – IMO constructions like Somatoform and Functional do not come anywhere near meeting such tests.

    IVI

  62. mousethatroared says:

    @ IVI – wow – I thought your previous post was just mistakening delusion for somatization… but then the last post, wow. That was a pretty brilliant argument. It really makes me want to look at the diagnoses of Somatoform and Functional with a more skeptical eye.

  63. mousethatroared says:

    Here is a question. In a culture were the belief that a positive atitude can increase a patients chance of being cured of cancer, to the point were a skeptical doctor has to repeatly complain of bias studies being preferentally report in professional journals*, what is the chance that there would be a bias of published studies on attitude causation in CFS.

    *http://www.sciencebasedmedicine.org/index.php/the-mind-in-cancer/

  64. @geo,

    Can you please coherently and concisely state exactly what your argument is?

    Also, I don’t believe that you understand what the word “quackery” means. My beliefs, which are in line with the scientific consensus, are not quackery. You may disagree with the bulk of the evidence, or believe that newer research may lead us in new directions, but for now the statements that I’ve written are by and large represented by the scientific consensus.

  65. geo says:

    @SkepticalHealth:

    Making medical claims which are not supported by the evidence is quackery.

    Thus, this would be quackery even if we had no evidence to the contrary, and were in a position of utter ignorance (as you seem to be):

    “What we know:

    - CFS is much, much, much more prevalent in certain ethnic and socioeconomic groups and sexes.”

    As it is, we have a number of population based studies which provide compelling evidence this this is not true, thus making you an absurd quack.

    Equally, when you disputed the evidence that glandular fever/mono leads to a significantly increased risk of going on to fulfil the criteria for CFS, despite the fact that you seemed not to have read any of the research in this area, you revealed yourself to be a quack. That you thought the sections you quoted from your literature review supported your position showed that you were an absurd quack who is unable to understand even a very simple literature review.

    Talk of ‘the scientific consensus’ is slightly silly with CFS, when there’s so little consensus on anything – or at least, different groups seem to have different views as to what the consensus is, but I am not aware of anyone having published a paper which claimed that glandular fever/mono (and now certain other viruses too) do not lead to a significant increase of the risk of having CFS since White’s prospective study from appx 1995. Your prejudicial ramblings about obesity and whatever else hinted at the way in which you viewed CFS – that you’ve gone on to make claims which are so clearly against that which the evidence shows also indicates that you’re rather less good at hiding your quackery than some other doctors are. In some ways, this is probably a good thing.

    “the statements that I’ve written are by and large represented by the scientific consensus.”

    “I have never advocated any form of quackery in my life.”

    I think that you believe those two statement are true. The fact that you seem to have done no reading in this area, and to have no understanding as to what the actual evidence we have available to us is, does not seem to have done anything to give you a moment’s pause for thought. This is typical quack behaviour, and it is shameful and disgusting to watch it be displayed by someone who claims to be a ‘skeptic’.

  66. evilrobotxoxo says:

    @IVI: I think you have a bit of a misconception about what the term “delusion” means. I’m a psychiatrist, and we have precise definitions of what these words mean, and there is virtually no circumstance under which it would apply to something like CFS, regardless of etiology. To explain (to everyone, not just you), a delusion is a false belief that persists in the face of contrary evidence (or at minimum is not based on any logical evidence or culturally-held ideas). Importantly, the term “delusion” applies to beliefs, not experiences. If the patient experiences physical symptoms, then those symptoms are not delusional, even if they do not have a cause that we can currently identify. For example, a conversion disorder (in the somatoform category) would be a person whose arm becomes paralyzed, even though MRI and neuro exam show that there is no obvious lesion. A delusion would if someone continues to believe that their arm is paralyzed in spite of evidence that it is not (i.e. you can see them moving it). There’s a big difference between those two things.

    A second point: to some extent, you’re combining malingering (faking symptoms for logical reasons like getting painkillers), factitious (faking symptoms to be in the “sick role,”), and somatoform (not faking symptoms) disorders into one category. Admittedly, these things are on a continuum, but it’s also worth pointing out that depression and anxiety (which are not even on that continuum) frequently cause physical symptoms, and those are often the primary symptoms. I concede your point that the whole concept of conversion disorder is based on an old Freudian idea of “hysteria,” but the thing with conversion disorders is, patients get them. Not even all that infrequently. In some cases, they can also be demonstrated objectively (e.g. unilateral conversion paralysis has abnormal peripheral nerve evoked potentials in response to transcranial magnetic stimulation of the contralateral motor cortex). So I don’t know what prior plausibility has to do with it.

    In summary: we don’t know the etiology of CFS, but the fact that the subjective symptoms are not what patients classically associate with psychiatric disorders does not mean that it’s not psychiatric, or that the patients are delusional. For the record, I’m not saying that it is psychiatric. I have no idea. Like many clinicians, I’m skeptical of the idea that CFS even represents a single disease entity. I think it’s pretty clear that some people who are given the CFS (?mis)-diagnosis have a recognized psychiatric diagnosis with primarily somatic manifestations, but I have no idea what percentage of the CFS population that is.

  67. mousethatroared says:

    Well, in the end I’m just happy for the Maasai. It must be nice to be immune from psychiatric disorders…or was it fatigue?… I’m not sure.

    heh…yah must be moving on now.

  68. geo says:

    @ evilrobotxoxo:

    So how do we treat SkepticalHealth’s delusions?

    PS: “or culturally-held ideas” – I’ve never liked this exception.

  69. In Vitro Infidelium says:

    @ evilrobotxoxo

    This is probably extending the life of this thread beyond any DNR limit but -:

    I fully accept that in psychiatric practice, delusion is differentiated from other categorisations on the basis that for a formal diagnosis of delusion to be given, the deductive basis of that diagnosis must be demonstrable to the patient as a challenge to the patient’s perception. However this is a semantic (pejorative not implied) position not a scientific one, indeed your whole presentation of the issue appears to involve a labelling fallacy. Even the area of research you cite appears to routinely pre label subjects as suffering from ‘conversion disorder’, merely on the basis of “absence of evidence = absence”; thus the research justifies the category, rather than challenging it. Incredibly we still see “hysteria” being referenced in such research while the potentiality of viral impact on neurological function is discounted out of hand – http://labnic.unige.ch/nic/papers/Cojan%20et%20al.%20NIMG2009.pdf

    To contend that: “delusion” applies to beliefs, not experiences, is to create a duality that is not consistently prenet in psychiatric practice. The belief in a phantom limb is based upon the ‘experience’ of an amputee, and that experience which may include ‘pain’ in the removed limb. That experience of pain can not be demonstrated as being more or less real in the case of an amputee than it can in the case of someone who complains of pain in a limb which is still intact but where medicine can currently identify no causal source of the complained of pain. It is merely that in one case psychiatrists have recourse to an objective reference – the absence of a limb –while in the other they do not, but the reference is of pragmatic value and not a source of scientific validation. Scientifically the absence or not of the limb has no bearing on the classification because in neither case can science determine the definitive source of the patient’s experience.

    These problems become magnified to absurdity when the classification runs to malingering, factitious and somatoform, because these have no definitive differential scientific basis, they are merely categorisations based on authoritative declaration. One can not test hypotheses of malingering or factitious disorders with prior plausibility applied because there is no means of establishing an empirical measure of what either may consist of. A patient is categorised as a malingerer or as having factitious disorder wholly on the interpretation of an assumed authoritative person, yet a patient so labelled may have subjective experiences that are exactly the same as someone labelled with a somatoform disorder. Psychiatry like many other parts of medicine is a pragmatic process, and categorisations such as malingering or factitious may be pragmatic necessities, but we should not be seduced into an acceptance that the labelling that derives from such pragmatism equates to empirical knowledge or constitutes definitive science.

    Finally I think it is not without significance that the now dominant nostrum of psychiatry -CBT – is concerned primarily with belief modification and that CBT’s now wide application involves no explicit distinction between its use in delusional conditions and in the claimed treatment of somatoform disorders, not to mention the catchall of ‘medically unexplained symptoms’. I’m sure CBT practitioners will claim nuanced approaches referenced to specific diagnoses, yet CBT remains primarily a process that is reductive of the patient’s own experiences and perspectives, while enhancing the practitioner’s preferred cultural values, without (in the case of somatoform and functional disorder classifications and in ‘medically unexplained symptoms’) any recourse to the deductive basis of the employed diagnosis as being demonstrable to the patient as a challenge to the patient’s perception.

    IVI

  70. evilrobotxoxo says:

    @IVI: yes, I think this thread is dead, but I don’t mind.

    As to your claim that what I said about “delusion” is a semantic argument: yes, absolutely, I agree 100%. It is explicitly a semantic argument. My claim is that the word “delusion” has a specific definition, and you were using the word incorrectly. If you were to say that Jay-Z is a country singer, I would similarly make a semantic argument about the definition of “country singer.” I do not claim that either of these definitions are based on any sort of rigorous science, only that they reflect accepted convention.

    Arguments about specific definitions aside, I think you’re missing my point about the use of the word “delusion” in a way that is more subtle. You say that there is no clear distinction between beliefs and experiences in true clinical settings, but I disagree with that 100%. For example, say that a person has auditory hallucinations of voices. They could either believe that the voices are a symptom of mental illness, or they could believe that the voices are angels speaking to them. Hearing voices does not make you delusional – BELIEVING the voices makes you delusional. Do you understand the distinction? Delusions are about a dysfunctional process of assigning belief and emotional salience, not about abnormal sensory perceptions. Again, these are simple truths by definition, and none of this is relevant to a discussion about somatoform disorders because those do not involve delusions.

    As far as your argument about the definition of conversion disorders go, conversion disorders are essentially defined as when a person has “physical” symptoms that are demonstrably not due to the common “medical” causes of those symptoms. For example, if a person has conversion paralysis of an arm, and an MRI and neuro exam show that everything is intact from motor cortex down to the arm, then it’s a conversion disorder, by definition. The term “disorder” is kind of incorrect here because it should be “conversion syndrome.” No claim about pathophysiology is made. BTW, in a case like this, viruses are discounted for completely valid reasons. I won’t go into detail, but basically the clinical picture and time course are inconsistent with what’s known about viral infections and neurophysiology, and viral infections causing similar symptoms would be detectable through objective means. As I pointed out before, there are objective neurophysiological tests that can be performed to demonstrate the abnormal nervous system function, so the diagnosis of conversion paralysis is basically just making a statement about where the dysfunction is located, i.e. higher up in the CNS and not in the spinal cord or peripheral nerves.

    Re: malingering vs. factitious vs. conversion – yes, they’re based on clinical judgment, and they’re likely incorrect a substantial proportion of the time. However, that does not invalidate the existence of those categories. Some people are actually malingering, and some people actually are not. As a child, I personally did both. Whether or not a different person could figure out whether I was malingering or not does not change that fact that sometimes I was, and sometimes I wasn’t. The categories exist.

    Re: CBT – you are correct that CBT makes no major distinction between treatment of delusions and somatoform disorders. CBT makes no major distinction between treatment of ANY condition, including treatment of chronic pain from identified medical causes. You think this fact is “not without significance,” but I think the fact that CBT makes no distinctions at all pretty much removes any significance from what you’re saying. As far as the claim that CBT is “primarily” promoting the therapist’s cultural values at the expense of the patient is simply absurd.

  71. .Tony.Mach. says:

    Re: “SkepticalHealth”

    I think the opinions voiced through the “SkepticalHealth” account here are dangerous to people diagnosed with CFS – these “musings” are certainly not compatible with “first, do no harm” (which makes me doubt whether he should hand out medical advise).

    .

    I will outline broadly two problems with the posts of “SkepticalHealth” in regards to CFS:

    - 1. –
    There are a lot of people with the CFS diagnosis that have something else.

    “The most important finding was that 103 (40%) of patients seen by the Newcastle Service could in fact be diagnosed with other conditions.
    … certainly raise the question of which treatable diagnoses might be uncovered if all patients currently parked in the ME/CFS diagnostic layby were examined intensively at a specialist Centre of Excellence by thoughtful and thorough physicians.”
    http://www.meresearch.org.uk/information/breakthrough/Breakthrough_Autumn2011.pdf

    “The commonest alternative medical diagnoses of those assessed were sleep disorders and the commonest alternative psychiatric diagnosis was depressive illness.”
    http://www.ncbi.nlm.nih.gov/pubmed/22299071

    One thing I have to note is that the association between CFS and depression (as per “SkepticalHealth” claims) is not something that is actually observable in reality. Not only do some CFS criteria exlude people with depression (and as was demonstrated above people with depression get misdiagnoses with CFS), but furthermore people with depression usually get better with physical activity (I need to apologize, I do not have the source for this at hand – it was during the NIH workshop on CFS that a researcher presented this, and I forgot who it was), while people with CFS get worse with physical activity (see below).

    So for many people the diagnosis of CFS means an dead end (“psycho basket case”, “hypochondriacs”, “all psychosomatic”, “don’t do any tests”, etc) due to misconceptions and prejudices – like displayed in a nice case study through the posts by “SkepticalHealth”.

    As a side note: Labeling the entire CFS patient population as possible psyche-cases (after research which seems to have solely consisted in copy/pasting a “UpToDate”/UTD article) without an outcry here makes one wonder about the diagnostic robustness of the entire psyche*-business.

    .

    - 2. –
    Measurable physiologic differences between CFS and healthy controls (including sedentary controls) have been found in research:

    Firstly there are measurable changes in the peripheral fatigue and pain sensing in CFS patients. Kathleen and Alan Light have done some interesting studies regarding fatigue and pain receptors, looking at the differential gene expression in PBMCs after an exercise challenge:

    Alan Light 2007
    “The Physiology of Chronic Pain and Fatigue”
    http://youtu.be/8yi_mCidr9I

    Alan Light 2011
    “Gene Expression Biomarkers for Chronic Fatigue & Fibromyalgia Syndromes – Latest Developments”
    http://www.offerutah.org/Alanlight2011.htm

    So the fatigue and pain is not happening in the brain, but rather in the periphery.

    And secondly, there is measurable lower exercise tolerance in patients with CFS (not explainable by sedentary behavior, detraining, psych* problems or somesuch)

    Christopher Snell 2012 Lecture – “Clinical exercise testing in CFS/ME research and treatment”
    http://youtu.be/nL49DwGRs30
    His studies show lowered VO2 max, among others.

    (Feel free to look up their papers yourself)

    .

    I am hopeful that research over the next years (like the ongoing Lipkin next-generation-sequencing studies) will be able to differentiate sub-groups (as hinted by the work of Kathleen and Alan Light), erode pathologic processes – and possibly find etiologies – I’d be surprised if the psychogenic explanations of CFS will be tenable in the future.

    .

    PS: The Hickie et al. 2006 study (as linked to by others) would have been of interest to “SkepticalHealth”, if had bothered of reading&understanding it – instead of discarding it out of hand. Especially considering that clinically a distinction between CFS, ME and PVFS seems difficult, if not impossible at the moment: http://www.hhs.gov/advcomcfs/recommendations/rec_letter_112011.pdf

  72. I truly do not enjoy arguing on the internet. People read posts, and see that they don’t like *something* that someone else wrote, so they’ll write massive tomes arguing tangential and often irrelevant points. For example, I almost completely agree with your #1 point. Yes, I believe that many people who are diagnosed with CFS have other conditions that were likely overlooked. However, I do not agree that people have to have either CFS *or* depression. You can have both, one or the other, or neither.

    As an aside, while some depressed people may improve with exercise, good luck using that as a treatment regimen (if that worked for all people, we could cure about 80% of all disease!) I appreciate that you don’t understand somatiform disorders. And please don’t link YouTube videos for evidence. I’m going to go out on a limb and guess that you have almost zero medical or science training, and have an interest in CFS for other reasons.

  73. Chris says:

    SH, I would love to meet you in person to discuss a case report of a family member. It would hit all of the points you mention. You would not believe the dirty look I got from this person when I mentioned the benefits of just going for a walk!

  74. geo says:

    @ SkepticalHealth: I’m impressed your ability to maintain a tone of postured superiority despite having already been shown to have made so many false and unreasonable statements about CFS. One of the advantages of arguing on the internet is that it is relatively easy for people to post direct links to the evidence they want to use to support their claims – I can see why you would not like this.

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