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Australia: MindFood: Misdiagnosing ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 23, 2012.

  1. Ember

    Ember Senior Member

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    The Center for Consciousness Studies at the University of Arizona explains their mission of “Promoting open, rigorous discussion of all phenomena related to consciousness:"
    In April, the Center hosted a full-day per-conference workshop entitled, “Exploring the Frontiers of the Mind-Brain Relationship.” They are now calling for abstracts for next year's conference: “East-West Views on Brain, Mind and Reality.”

    Invest in ME published this statement as part of Dr. Carruthers' bio prior to their 2006 conference:
    Your disrespectful attitude toward Dr. Carruthers baffles me.
  2. taniaaust1

    taniaaust1 Senior Member

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    Chronic fatigue associated with RA or post cancer is not a CFS subset but rather only "chronic fatigue". Chronic fatigue is not interchangable with CFS .. they are two different things. Which have two completely different definitions..
    justy likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    By some saying that ME is a subset of CFS.. it just means that ME is only one of many things which can come under the CFS banner and that not all CFS is necessarily ME.

    You seem to have some confusion going on between "chronic fatigue" and "chronic fatigue syndrome". Those who have diabetes and are fatigue.. have "chronic fatigue" and not CFS. Those who have anorexia and fatigue.. have "chronic fatigue" and not CFS. Actually a diagnoses of anorexia would usually rule someone out for getting a CFS diagnoses as annorexia can cause so many CFS symptoms so that would make those symptoms exclusionary.


    Thyriod issues thou.. may well be a possible CFS coexising issue as many with ME/CFS do have thyriod issues and enough CFS symptoms which stay, even when being treated with drugs to fix the thyriod issues. They would be included towards a CFS diagnoses if someone is still getting them after being properly treated.
    ............................

    ME has been confused by dumping it with CFS ..and CFS is being confused by having the illness of "chronic fatigue" dumped with it.
  4. Firestormm

    Firestormm Guest

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    Are the various reported 'triggers' also potential subsets do you think? Mine was a definite viral trigger, others are other things, perhaps we could use triggers as subsets and study then too... Sorry. I'm still not convinced not now.

    The other thing is that 'in theory' all these other possible causes of 'chronic fatigue' are ruled out before your diagnosis if not by testing specifically then by the knowledge and experience of the physician in charge. So whilst I accept and broadly welcome research that looks at 'fatigue' I don't think we can yet say that the fatigue reported as being a part of Multiple Sclerosis is necessarily caused by or is intrinsically the same as that we report ourselves.

    However, I think it is right to look at our own and other diseases that do report fatigue as a central feature if only to see if we are similar and then significantly different from a biological point of view. If so then what is traditionally reported/recognised as our main/most debilitating/defining symptom can be used as a bio-marker.

    This would also have an impact on all the other diseases too - if such a marker can be found (as well as of course being treated with drugs more effectively than at present i.e. with exercise/ positive thinking/whatever).

    Tania did you happen to see the video of the last CFSAC from June? Their last meeting. They're kind of looking to reinvent the wheel and come up with a revised/new/agreed clinical and research definition and we talking about a name change. It's a long video but not too bad if you do it in bits. Don't know what will come of it myself and I'm not sure they aren't trying to achieve something beyond reach at the present time but it's generally positive I suppose.

    http://forums.phoenixrising.me/inde...12-meeting-video-available.18740/#post-285927

    Edit:

    I see that you have seen the video Tania:http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-2
  5. Ember

    Ember Senior Member

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    The ICC considers "acute infectious" to be a subgroup within the diagnosis of ME:
  6. peggy-sue

    peggy-sue

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    Consciousness, like emotion and motivation, is ignored by the cognitive school, not by the behaviourists.
    Gerald Edelman has proposed the best theory of consciousness we have. He's a Nobel prize winning Immunologist.
    Try reading "Bright Air, Brilliant Fire" and "Neural Darwinism".

    If somebody says they're investingating the "mind-brain connection", they've lost the plot to dualism before they've even started.

    My disrespect is for the subject matter; dualism, and for philosophy which is no more than word games.
  7. Fred1234567

    Fred1234567

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    I have ME as per the International Consensus Criteria 2012 - I don't have CFS as per the Oxford criteria..or the Fukuda criteria as I have neurological and immune deficiencies and low killer cell function. I have ME/CFS as defined by the Canadian Consensus Criteria 2003. So what do I have? How do I describe my illness!!!
    I wonder why we don't use the ICC criteria now that we have it as it was developed internationally by a group of well respected experts???? Would many people now supported by the ME/CFS communities miss out or fail to meet the ICCC criteria for ME??/
  8. Guido den Broeder

    Guido den Broeder *****

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    Yes, that is exactly what plays. Since the publication of the ICC-ME (2011), a whole lot of people that were previously diagnosed with ME/CFS are clinging to the name ME, without actually having the disease. There are far more of them and they are a lot healthier and wealthier than the real ME patients, so it's currently a death struggle to maintain advocacy for ME.
    taniaaust1, peggy-sue and Firestormm like this.
  9. Firestormm

    Firestormm Guest

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    As it currently stands - ANYONE can claim to have ME under the ICC or anything else for that matter. If you live in the UK there remains a chance you were diagnosed with 'ME' and it's still on your medical file. Outside of the UK chances are you have 'CFS' on your file. It is a name.

    And should 'ME' be adopted as a separate distinct disease entity, or sub-category, or even a replacement for the name CFS - without objective testing I remain unconvinced that everyone with a diagnosis currently of 'CFS' or 'CFS/ME' cannot and will not 'meet the clinical criteria for ME'.

    Nothing I have seen has ever justified the name Encephalomyelitis. Not to any clinical significance. In all this time with all the privately funded research - nobody has ever conducted a research programme that established beyond even tentative doubt that significant inflammation of the brain and/or spinal cord is applicable to patients or is a primary cause of any symptom.
  10. Ember

    Ember Senior Member

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    Have you compared the two sets of criteria? They're different.

    Response by the International Consensus Panel:
  11. Firestormm

    Firestormm Guest

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    Thanks Ember - for the response from the Panel particularly as I had not read that before.

    If 'PEM' is the only thing in the main that separates 'CFS' from 'ME' these days under these latest proposals then, still, in the absence of a test that endorses a patient's claim of 'PEM' I don't think it will matter or prevent a patient claiming they have ME as opposed to CFS and being able to obtain that diagnosis.

    And what is being asked for of existing patients is that they are effectively reclassified and rediagnosed. And I honestly cannot see that happening. Also that the 'itis' in ME - what has been the fundamental part of ME for decades and the key component lending it the classification it has in the WHO - is effectively now being seen as irrelevant appears to me to be disingenuous.

    Chauduri and Charles Shepherd looked only at 4 autopsies and whilst there is patient evidence in addition to suggest pathological involvement of this nature - this has never been resolved. Maybe it will in the future with the tissue bank projects, but we are talking here about reassessing 'millions' of patients - to what end in the absence of objective testing or corroborative research evidence?

    Sorry but I think we are fiddling around and that even if this ICCME were not a replacement for CFS but a sub-category - the criteria it contains could very easily be altered. Research is not yet at a point where it can lend itself to additional measures to better identify patients based solely on reported symptoms.

    ME as defined by WHO is a distinct disease. But whether or not any patient cohort currently diagnosed with CFS or who represents a large portion of the CFS/ME 'pot' meets that distinction is what's always been questioned. Personally, I think the name itself is wrong, and when it was suggested and then accepted by the WHO it was done without clear evidence to support it.

    Realistically I don't know where this is going in the absence of any conclusive research but I cannot see anyone shifting their stance from 'CFS/ME'. I think even the NIH have added 'ME' to 'CFS' now. Perhaps this is also in recognition of the as yet unconfirmed link to a neurological pathology but I don't think it's ever been out of a belief in the presence of 'inflammation of the brain and spinal cord'.

    If the WHO changed it's terminology - then we might have a stronger case but I can't see them doing that either. And whilst unpopular - in the absence of any other suggest I do think 'myalgic encephalopathy' would be better suited at this time. Not that changing any label is realistic of course. I kinda wish they'd simply gone with 'Ramsay's Disease' myself :)
  12. Ember

    Ember Senior Member

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    Response by the International Consensus Panel:
    Dr Carruthers Damning Comments on Encephalopathy

    http://www.theoneclickgroup.co.uk/news.php?id=754#newspost
    .................................................................................................

    From Kev Short

    Dr Bruce Carruthers Damning Comments on the use of the term Myalgic 'EncephalOPATHY' in place of the term Myalgic Encephalomyelitis...
  13. Ember

    Ember Senior Member

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    On a forum that's intended to support patients, would you be willing to reconsider your suggestion that patients may fake their diagnosis?
  14. Valentijn

    Valentijn Activity Level: 3

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    At present I think it's safe to assume that people saying that they have the symptoms of PEM, actually have PEM. To suggest that it should not be taken account is to suggest that all diseases that at any point were undetectable to the naked eye never should have been studied.

    PEM is almost unique to ME/CFS, extremely disabling, and clearly distinguishes ME from psychiatric disorders, sleep disorders, deconditioning, etc. To ignore it, would be to essentially say that ME doesn't exist, and we really are all just chronically fatigued.
    Ember and peggy-sue like this.
  15. Firestormm

    Firestormm Guest

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    My reference to encephalopathy was in the sense of 'if it had been used' by WHO instead of encephalomyelitis i.e. that back in the Lancet article of 19556 the author had proposed encephalopathy instead. My preference has ever been for a less restrictive name, like Parkinson's, so Ramsay's or something. I think a large part of the problem has been that the name is too restrictive. It guessed that inflammation played a key role without evidence to support it either then or since. I wasn't referring to the attempt by some charities to reach a compromise with authorities who were not willing to accept that the term was relevant or applicable - I was suggesting that if WHO changed its terminology or introduced a new one, then why not use one that is more applicable.

    I am sure you know what I meant Ember. PEM can be said to occur without any evidence that it does. As we've spoken of previously PEM happens in other conditions too - it isn't unique. And people with a(nother) fatigue inducing/limiting condition will feel exhausted and worse after exertion as will others with any number of diseases. Whether or not they will feel as incapacitated as we do, and what qualifying level ought be considered, can only be determined by some form of objective test.

    The same can be said of all the other qualifying symptoms too. Hence the great push - in part - for better understanding and objective testing. Admittedly, it is very hard I would imagine to claim PEM when none exists - but if PEM is a key need to be given a diagnosis you genuinely think applies or PEM does hit you but just hasn't for a while because, for example, you are living inside of your abilities, what then?

    All of the above can apply of course to what we have now. Anything - in the absence of testing - will depend to a great extent on the ability and time a diagnosing physician has to listen and prompt a patient for their history. A referral to a specialist once a diagnosis is suspected - who will endeavour to do the same whilst ensuring a criteria is met.

    We are talking about the need (or lack thereof) to introduce further criteria and attempt to separate/distinguish a distinct entity, now, without testing and with knowledge in this area having yet to determine the role of inflammation or it's significance (or lack thereof).

    If for example, the Candadian Criteria were introduced little has been said what would happen to those currently diagnosed who did not meet the criteria, but we know that applying this criteria would restrict the patient base and better ensure more 'accurate' diagnoses for new patients.

    In the UK the situation as I understand (remember it) was that Encephalomyelitis was not to be used at all. The preference was CFS. It was the distinct absence of inflammation of the brain and spinal cord as a proved key component of the disease in the patient populace that was in large part responsible for this stance.

    In the end a compromise was reached because the name was historically attached to the patients who were diagnosed even if this piece of proof was absent from any research trial/study. Doctors were not happy using the term either and a further compromise was reached to use encephalopathy, that was at the level where they eventually produced the NICE Guidelines.

    Now a further compromise if you like has taken place, in that Encephalomyelitis/Encephalopathy/Chronic Fatigue Syndrome are all used to mean the same thing. This stance has I believe recently been adopted by NIH, and ME/CFS or CFS/ME signifies this.

    Maybe in America they can do what we could not in the UK. And in the meantime research will reveal some means of better quantifying what are now seen as the key components of this condition.

    We now have the CCC CFS/ME, the International ME, and the IA CFS/ME Primer soon to be followed by the International ME Primer - representing the main thrust of attempts to better refine the condition(s). There are overlaps and confusion and not one has been adopted or endorsed by NIH or CDC.

    I think the distinctions between ME and CFS are not enough to prevent easy diagnosis or to for example, prevent patients from qualifying for ME when in relapse and CFS when in remission, or at points in between when a reassessment might be necessary.

    And we might be talking cross-purposes anyway. There is perhaps a greater need for distinction at the research level than there is clinically. Only epidemiological study will help reveal this but at this moment in time there are no unique treatments proposed for ME than are not being applied to CFS.

    Advances are being made in research without a separate research definition for ME or clinical definition either. If for example PEM were made necessary instead of optional (assuming of course it is applied in that manner) then I would be interested to see if it makes any significant difference.
  16. alex3619

    alex3619 Senior Member

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    Hi peggy-sue, Edelmans work, and his network equations, were what i was using in my PhD candidature. I am a big fan of his.

    Philosophy is not just word games, but there is a name for philosophy that is: sophistry. Sophists give philosophy a bad name. All modern reasoning, and indeed rational analysis of scientific methodology, has some dependence on philosophy. However, the history of philosophy has little relevance to most things in the modern world, and its over emphasized.

    Dualism is quite rightly criticised however. I agree.

    One of the issues with philosophy is that people use it to manipulate opinion: sophisticated rhetoric. Hence sophistry. Politicians do that.

    However, without symbolic logic, we would not have computers. Or databases. Or much of the modern scientific endeavour. We can thank Bertrand Russell for the modern scientific revolution in some measure, he worked out the first detailed symbolic logic.

    Bye, Alex

    PS I have a theory of mind I have been sitting on for a very long time. Its from the days when I was reading Edelman and others, and working in neural modelling. I intend to put it in my book as a counter to psychobabble, and to highlight what is wrong with the idea that a computer is a good analogy for a brain or mind. If you frame the question wrong, you will get wrong answers. Technically you might call my theory a monist theory with dualist leanings. How can you get dualist leanings from a monist theory? Its possible to describe a monist theory as if mind exists. It is however only an illusion due to language and oversimplification.
    PhoenixDown likes this.
  17. peggy-sue

    peggy-sue

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    I clearly have never encountered a real philospher then, only sophists.:rolleyes:

    Symbolic logic is fine for computers - but completely irrelevant for people or living systems.

    I just love that Edelman considers the entire "cognitive movement" within psychology a complete waste of time and effort and resources.
    He's a bit more polite about it than I am. :zippit:
    Edited to add, I can find no reference to Edelman in the site for "consciousness studies" - they all seem to be "psychologists" or "philosophers" - so I really can't imagine there being any science carried out at all.
    When I was doing my Hons. BSc in psychology, I was threatened with being thrown out of the lecture for daring to mention the word "consciousness".
    I'm not polite about it, because I was conned into my degree by the claims that psychology is now a proper science - when I got there, I discovered they didn't know their arsenic from their erbium...... (I was a mature student, a profesional scientist beforehand) so I spent my entire degree arguing with idiot, dualist, cognitive "scientits"/sophists
  18. Guido den Broeder

    Guido den Broeder *****

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    Research in the 1950s provided the evidence, specifically Pellew, 1955 and Wallis, 1957. No guesswork was needed in choosing the name.
    Ember likes this.
  19. alex3619

    alex3619 Senior Member

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    Hi peggy-sue, I have had a lot to do with mathematicians and philosophers over the years, largely because I was studying artificial intelligence. However my real interest was neural modelling, or it least it came to be. I also learnt a lot from philosophy of science and systems theory. Something I learnt about philosophers and mathematicians along the way .... they are almost all a little weird by conventional standards.

    In every day life nobody uses symbolic logic, just as nobody uses equations to calculate optimal buys at the supermarket.

    I am not convinced the cognitive movement is useless, just that it is massively and unduly over emphasized. The whole mind body thing got me into lots of arguments with philosophers, just as you did with psychiatrists. In particular those coming from a perspective of philosophy of language I really disagreed with.

    However, it is clear that a massive overemphasis on thoughts, including self talk, is driving modern psychobabble arguments. To me any thoughts are just more inputs to the brain - just like sounds, temperature, lights, and feedback from acid sensors in the body. Such inputs matter, but they are just inputs - they do not reflect damage to the brain architecture. So it is possible to learn wrong illness beliefs, but its inconceivable by any known mechanism that such illness beliefs can consistently give rise to the myriad of physical abnormalities found in so-called functional somatic syndromes, including ME. Arguments based on learned behavioru are just ludicrous and do not fit the physical evidence.

    Let me give an example. Many people were told Vioxx would help them with pain, and they were probably told it was safe. Thats a false illness belief - the safety part not the pain part. I found Vioxx one of the very few drugs that would even touch my pain. However I was aware of the pathways involved, and would never take it regularly or in succession. In fact in the year or so I was on it (before it was called into question) I only took maybe half a dozen. Simple biochemical prudence said don't mess with eicosanoid synthesis. A half baked science major who read up on eicosanoids for half an hour in a library should have been able to come to that conclusion. The very narrow research focus in big pharma creates problems.

    So its easy to get a wrong illness belief - someone told you but it was wrong - but its inconceivable that this could cause the kinds of problems found. In fact nobody has even put forward a testable mechanism for this. Its all untestable hypotheses - arguably non-science. Add the way its promoted and it can be reclassified as pseudoscience in my view. If the PACE trial showed anything, its that their hypothesis does not lead to useful treatments. The small significant outcomes are within the range of potential bias and confounds. Its time to embrace the null hypothesis, hence the title of my book.

    Dualism is partly the fault of psychiatry, partly an over-emphasis on very old philosophy. Its like a modern scientist going to a nineteenth century scientific paper for solutions to modern problems. Very few papers from that era have any validity today.

    For those who are unfamilar with dualism, its the whole notion that mind and body are separate entitites. They have different properties, or so the claim goes. One of the problems with psychiatry is, historically, its about mental disease. If the mind does not exist, then what? CBT and related cognitive movements like to put too much emphasis on thoughts, and the emotions that go with them. There is a potential out of the dualist issue for CBT because it does not directly rely on the notion of mind and body being separate. However, it has very poor grounding in neuroscience.

    Until psychiatry and neuroscience can learn to dance a decent tango, psychiatry, and in particular non-pharmaceutical psychiatry, is going to exist on a theoretical basis no better than quicksand.

    The problem is that many in the field of psychiatry and dysfunctional beliefs are what I would call highly intelligent sophists. The way media releases and public relations exercises are used to alter views on the science, together with a deceptive use of language, clearly puts this whole thing in the realm of pseudoscience. So far I have not seen anything to disuade me from that opinion.

    Bye, Alex
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  20. peggy-sue

    peggy-sue

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    I put my "faith" in behavioural neuroscience - which was the point of view from which I tackled my degree.
    Unfortunately, none of my lecturers had enough education to understand me. They only had arts degrees.
    cognitive "science" puts undue importance on language - which is the very last port of call to consciousness from the brain and, going back to my degree, "emotions" were another word that got you thrown out of the room.

    They had something they called "valence", which related to "arousal" - this was their pathetic acknowledgement of emotions.
    (I'd always thought a valence was a frill around a bed! :p )

    I do distinctly remember being in the Prof's office, arguing with him yet again about the primacy of emotions, while he was rabbitting about the importance of "pure mind", and leaving him speechless, chin bouncing off the floor as I pointed out to him that for somebody who did not believe in the primacy of emotions, he was getting pretty angry at me for denying the existance of the "mind".:p
    alex3619 likes this.

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