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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. insearchof

    insearchof Senior Member

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    Hi Bob

    Yes, which has been regretable.

    I think this is a very good assessment of the situation and I agree with your observations.

    Appearances is the key word.

    I think it might pay for us all to question from time to time, our own perceptions. Is this really what this person is trying to convey? Ok, I am not sure - so many be it is better to ask or summarise their position and ask for clarification before proceeding?

    Regarding SOC questions for the sake of keeping the peace, perhaps if she or you can signify that this is agreeable, then I would be happy to respond to them, as best as I am able and when able to do so.
     
  2. Boule de feu

    Boule de feu Senior Member

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    There are very aggressive cancer and there are cancer which are not so aggressive.

    My dad has diabetes and has no symptoms so far (25 years) My friend has diabetes and must inject herself three times a day. Otherwise, she passes out and can fall into a coma.

    Our bodies react differently to the same pathogen. Some are more resistant than other.

    I might not die from ME, I might not have paralysis or seizures (only vertigo!) but it does not mean that I don't have the disease.
     
  3. Boule de feu

    Boule de feu Senior Member

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    This might sound stupid but I need to ask:
    Could a person receive a PVFS diagnosis, and then years later the illness would evolve and become full-blown ME?
    I think what I have is the gradual onset type - many symptoms appeared 10+ years ago (IBS, extreme sweating, severe neck pain), then the immune problems started (i caught something and could not get rid of it) and now I am severely sick (with tons of symptoms - it seems that it is attacking all of my organs). My illness is definitely getting worse. I will probably lose my legs. It scares the h... out of me!
     
  4. WillowJ

    WillowJ Senior Member

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    this is the only thing I meant by saying ME is the disease under the CFS case definition. Regardless of what CDC thought they were trying to describe, this is what the patients had. This is what they ought to have been describing. The CDC failed to recognize what disease it was and diagnose with existing diagnosis, and made up a new case criteria which failed to define (specify the boundaries of; separate one thing from all others; state particularly) any thing at all. There is no such thing as CFS because it is not something which can be differentiated from anything else.
     
  5. WillowJ

    WillowJ Senior Member

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    I tried to post this the other day, but my computer crashed and ate my post, and I haven't had the energy to repeat it. :)

    I think my position has been misunderstood, so I will try to briefly repeat the key points of what I've been trying to say. Keep in mind, though, that I'm interested in Ramsay's further work. I just don't have access to his books. Hopefully his works have been published in journals, because more and more of the older journals are being scanned in and publihsed on pubmed with free access.

    preface: the commonly-used definitons do not specify any disease or syndrome, and include a lot of people who do not have a similar disease to us. these are not people being considered by me. they have random unrelated conditions and are misdiagnosed if given a label of CFS (they do not have the disease under that label), and will do better and have better access to care if diagnosed with something else.
    not considering these random fatigue patients, is acknowledged to be a redirect from original purpose of thread. however, they have not been under serious consideration by anyone since about the twelfth post, (somewhere in there the thread changed from CF vs. ME/CFS to ME vs. ME/CFS) and since, have only been introduced when there has been a misunderstanding about what was being talked about since then.

    a) there is considerable scientific support for identifying differences within the ME/CFS group. new work includes Kerr's genomic/infectious subtyping. old work includes Ramsay which rlc cited.

    b) there is also considerable support for considering the ME/CFS group to be related. work includes Klimas' work identifying a specific pattern of reduced NK cell function, could also include specific PEM pathologies such as oxidative stress and cardiopulmonary profiles, Light's genomics work, and the spinal fluid study.

    Whether the "subgrouping" takes the forms of different disease titles or subgroups seems to be more of a matter of semantics to me than anything else. Lupus, Diabetes, MS, etc. have recognized different forms. This does not prevent the diseases from being scientifically studied. Indeed, Lupus, for example, can be studied with RA and scleroderma, for certain purposes, and this adds to our knowledge.

    So the problem is not the disease title. The problem is whether you approach the study in a scientific manner, or a non-scientific manner.

    We all know that the problem here is some con men (and women) dressed up in scientists' coats and government officials' hats, who are determined to approach the study of ME/CFS in a non-scientific manner.

    As long as that situation persists, it doesn't really matter (as far as fixing the science) whether we call our disease(s) ME, Underwater Basketweaver's Hysteria, or assign twelve serious names to twelve different types.

    c) just don't ever tell someone that they or anyone else has CFS, or that CFS is a syndrome. A syndrome is a distinctive set of signs and symptoms which delineates a specific pathology (whether or not it's understood at the time). Raynaud's Syndrome is a good example. There is no such thing as CFS. Nobody has CFS. CFS is a bedtime story for insurers and cash-strapped governments and overworked doctors. Nobody should advocate the use of this title for anyone.

    So I still say, let everyone (of us with related diseases) use the title of ME. But that doesn't mean we can't or shouldn't subtype. We can and should. The two are not incompatible.
     
  6. Mark

    Mark Acting CEO

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    That's right. In order to communicate that to the public, it seems we have to understand the difference with great clarity ourselves - and it seems to me that there is probably still a lot that we don't know about those differences. I hope we can learn together without getting too fractious again.
     
  7. Mark

    Mark Acting CEO

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    Since things seemed to get fractious again quite quickly, I am now reading through this thread since the restart...and I'm afraid it's still going too fast for me to follow the argument. Regrettably, as I'm sure you'll all understand, it would be a difficult committment for me to undertake to read the whole thing from the beginning!

    In #105, Sickofcfs took issue with Tulip's comment:

    SickofCFS responded:
    I have tried to unpick this argument, but without references to the earlier comments in the thread (a reference to the post number would have sufficed) it is hard for me to determine who said what, when, and to whom.

    The inflammatory language on both sides is also most unhelpful in determining the facts of the matter.

    I have tried to form an impression of what is going on here, and I do think I have the gist of it, but I can't do better than insearchof's excellent post #107, so I'll just reproduce that as being in line with my own impressions so far:

    This seems to me an extremely reasonable post - however I found just one comment that appeared to be incomplete or inadequate in a way that seems to me to be pertinent:

    This seems to be a statement that the position on historic ME is clear and proven, easily accessible via ME sites on the internet, and should not need to be proven all over again. And that therefore those with the historical knowledge should therefore not have to prove their assertions again. I can quite easily believe that this is true, and that the state of the scientific evidence as it stood in 1988 was somehow torn up, and replaced with a new model. This does not seem to me to be the way that science is supposed to work, and if this assertion were to be true, then it would have some quite deep implications.

    However, it seems to me to be problematic if the above statement means to say that "those with knowledge on Historic ME" should be able to make assertions purely based on the fact that they have this knowledge, and that they ought not to need to provide referenced evidence for those assertions. I am afraid that providing an instruction to 'just read the information on hfme' is in practice unlikely to be sufficient for most people.

    If the debate is to remain sober and rational, full referenced sources for disputed claims would seem to me to be essential.

    That said, exhortations to read the information available from hfme do seem a quite reasonable request to me. If it is indeed the case that these sites provide an archived reference of the state of the scientific consensus as it stood in 1988 before it was overturned and replaced by the psychiatric model of the Wessely school, then it would seem absolutely essential to examine that material rigorously if any progress towards understanding is to be made.

    I think that if we are to honestly seek the truth here, then we need to honestly and carefully examine that historical evidence. I am mindful that I have not myself explored those websites myself in depth - partly because they credibly refer to symptoms which I have not experienced myself, which go beyond the CCC definition and are said to be seen as essential to a diagnosis of ME by the leading expert of the scientific era preceding the advent of the Wessely school, Dr Byron Hyde. Such assertions appear both reasonable and credible to me, and when I come to think of it, I don't think I have ever seen an evidenced refutation of these assertions when they have been made.

    Based on all of this, I must say that I am inclined to believe that the old-school information remains unrefuted, that there was an unjustified break in the scientific progression in the late 1980s. It seems to me vital to home in on the point in time when this apparent break in the historical and scientific record occurred, and examine the available evidence of what science said before and after this break occurred, in forensic detail. Whatever the truth of the matter, this sudden change of direction in 1988 appears to be essential to the understanding of the truth about ME/CFS.
     
  8. Mark

    Mark Acting CEO

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    You're right to be encouraged: I had indeed already reached the conclusion myself that we need to do as you say, and I thank you for pointing out the importance of this exercise for relations with the CDC NIH. We will, of course, need your help with this exercise...

    That is again an excellent proposal, and is again precisely the conclusion I had already reached. We can't have the suffix .me and talk about ME/CFS credibly without doing this.

    Thanks, this analogy has been buzzing round my head for a week or two and it seems quite strong to me.

    Absolutely, I do see it exactly that way.

    I'd got that bit too, with so much evidence pointing at the signfiicance of that point from multiple angles.

    One of the most important was a perusal of the sections of the MRC's "S Files" from the period c.1955-1960, the titles of which are available here:
    http://www.nationalarchives.gov.uk/...tails.asp?CATID=5955&CATLN=3&FullDetails=True

    If one clicks "Browse From Here" on the RHS of that page, and then looks at section FD23, the archive of some 5000+ files can be paged through, and their titles explored. It makes for more than fascinating reading...

    There is a crucial task here IMO. Although one may page through the titles, these are not as easily searchable as they might be. The catalogue references are opaque, and a full index of the section does not appear to be easily available, meaning that in order to browse through the archive to get to the most interesting material one must go through pages and pages, one at a time. If these were to be laid out on one page, all together, this would make the entire story of this archive much clearer. Sadly, after I had spent a day or so trawling through from start to finish, my computer and I subsequently crashed and my notes were lost. I really was quite foolish to fail to back up my work here.

    This job still needs doing - especially by anyone interested in the celebrated secret files on ME/CFS which are now locked till 2071 or so...for this is the archive which contains those files and it provides some highly relevant context to explore the nature of the rest of the content to be found in that archive...

    I believe it is the case that the public have the right to access many of these files and that some of the material has not yet been made publicly available but could be. This would seem to me a fundamentally important task.

    I looked up the link for "enterovirus" on wikipedia for anyone who wants to get started - it seems surprisingly short for such an important topic, just as you say...
    http://en.wikipedia.org/wiki/Enterovirus
     
  9. Mark

    Mark Acting CEO

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    I'm not sure that reference to "mocking, patronizing and sarcastic tones" was helpful, nor did I myself conclude on a reading of sickofcfs' long list of questions that there was a clear case that they were so, but I did think I sensed a certain undercurrent there still...nevertheless I would be interested in the answers to those questions, though it seems like a fair bit of work...

    Sickofcfs, your response here seems angered and frankly it appears as an excessive reaction in response to a short though accusatory post - doubtless there is a long history to this dispute of which I am unaware - but I would have thought that a statement that you had no intention in your post to be "mocking, patronizing and sarcastic" would have sufficed...and at this point we are merely trading insults about being patronizing which, again, is most unhelpful...

    Clearly, we are looking at two different readings of the same literature - or perhaps, two different interpretations on what the appropriate response is to what the literature tells us.

    And clearly you are both highly intelligent people who have studied the literature and reached different conclusions.

    The debate is fascinating, but always more interesting and fruitful if the heat can be taken out of it, which as I've said before, we will aim to do on this thread by suspending it if things get out of hand again.

    My impression really, as I've said, is that if there has been a break in the scientific literature and a "starting again from scratch" which resulted in the CCC, then regardless of how positively we may regard the CCC as the best practical definition we have available for those of us working backwards, those of us with CFS perhaps, who are looking for the best tool available to answer our questions...regardless of that present reality, we can never real understand what is happening politically unless we understand what happened from the perspective of those people working forward, which is presumably those with "true ME".

    These are two intelligent and rooted scientific approaches, looking at the same events from different sides. If we wish to hone in on the truth, then these two need to converge...so please let's not give up on that task: I believe there is still room for both sides' truths to converge in a synthesis...


    ETA: I do hope you won't give up on the attempt to achieve the objectives you stated in your post quoted above, SickofCfs, they are noble objectives and I do believe they are sincerely held so I would encourage you to hold to them and allow us to moderate the discussion as best we can...I know this is probably a somewhat stressful difference of opinion for you both so, again, we will take regular pauses for reflection as and when necessary...
     
  10. Tulip

    Tulip Guest

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    If you want to read what the argument between myself and Sickofcfs was about, it is in post numbers 62, 66, 69, 71, 72, 75, 76,78, 86. What seems to have happened is that for some people the CCC was when the definition of M.E. came into place and all previous diagnostic criterias for M.E. before then, are now null and void. Which obviously isn't the case. I was diagnosed in the early 1990's by specialists that knew of M.E. and were still able to easily diagnose it. I also attended camps for young people with M.E., the M.E. circle was large and there was much information shared, both from specialists and patients. I didn't learn about these extra symptoms on the internet, I learnt about them from mixing with a large number of experts and patients and it is infuriating to be told that because those symptoms are not in the CCC, which is a new definition, that they are not common, when they actually are. History must not be ignored as it contains vital information about a serious disease, that is what this thread is about.
     
  11. Mark

    Mark Acting CEO

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    So: One extremely important requirement: a comparison of the Nightingale definition and the CCC, side by side...very similar but subtly different. Given the caveat that the Nightingale definition is "a codification (summary of historical ME)" by Dr Byron Hyde, I am wondering whether this could be taken as the definitive "state of the art" before the change in direction occurred, or whether there are other more established and formal definitions that are relevant? There would seem to be risks associated with merely putting these two definitions up against each other as if they were complete statements of a position, since they are necessarily both imperfect documents in any case: both have deeper contexts in which they would need to be considered, it would seem to me.

    Quite so, and surely none of us are unfamiliar with the importance of that point in terms of current 'scientific' approaches in the UK.

    A vital distinction, it would seem.

    Under the Nightingale definition, summarising all medical investigation into ME since 1955, injury to the central nervous system attributed to enteroviral infection was the main feature.

    Whereas under the CCC, the disease is defined not according to this historical causal model based on an understanding of polio, but instead is defined in terms of the 'primary symptom' of fatigue.

    Again we would seem to be looking at a kind of scientific revolution - a point of rejection of all summary of scientific investigations into a disease up to that date and of 'starting again' with a re-definition of the symptoms...and notably with subtly different symptoms that exclude a few of the key features of the original disease of ME.

    Such scientific revolutions require extraordinarily strong evidence, it would seem to me. Perhaps I misunderstand, but I thought that science demanded some strong degree of proof that an existing theory is false before this can happen.

    All I have seen myself, though, is a document at the start of the ME/CFS S Files archive which has Dr Byron Hyde's definition juxtaposed with a document written by Prof Simon Wessely. The juxtaposition of these two documents seems crucial...does anyone have a link to the PDF obtainable here?

    http://www.nationalarchives.gov.uk/...595&CATLN=6&Highlight=,MYALGIC&accessmethod=0

    However: one does need to examine the comparison point I cited above and set this alongside the difference between the two approaches, I think.

    And I might turn the quote above round the other way: you don't need to study the documents closely if you understand what they are, but if you don't understand what they are and what they purport to achieve, you very much do need to examine them closely in order to accept the position being claimed...and you need that documentation laid out clearly and referenced when the claim to understanding is being made.

    This sounds fairly sharp...

    So: while the origins of CFS lay in the Lake Tahoe cohort, the first outbreak of CFS, apparently, nevertheless some in the area were diagnosed with ME?

    This seems quite odd, and quite interesting. If CFS is in some sense a version of ME with a few of the characteristic symptoms absent, what is going on here? Is CFS some kind of evolution of ME? Are we looking at an evolutionary event? I have to mention the toxic mold at this point, to which several MCS sufferers like myself have long believed our condition is inextricably linked, and a form of which was and is - apparently - endemic to lake tahoe, and in season at the time of the outbreak. I have to wonder whether this mold represents some kind of bridge between the ME and CFS eras.

    If either side of the debate is not thoroughly aware of the MCS/mold experience, then I submit that both sides may need to be if they are to see the full picture here.


    The game of football was born in England towards the end of the 19th century, the first league club being Notts County who were formed in 1862, and the third being Nottingham Forest formed in 1865.
    http://en.wikipedia.org/wiki/Nottingham_derby

    It is now popular around the world and the World Cup is arguably the most popular sporting contest in the world, rivaling the Olympics as a world event (though I am not going to research the comparative worldwide TV viewing figures and financial aspects just now :D).

    In the US, football has been rarely played, and is referred to as "soccer", whereas the term "football" is used in the US to refer to a game the rest of the world calls "American Football".

    Potayto, potarto, there is a long history of this sort of divergence in the use of words and of pronunciation, it seems...none of which is helpful to understanding between "two nations divided by a common language"...

    What a mess!

    Thinking aloud...it may even be possible to explore this by analysing past studies of the same question using different cohort definitions and determining how many ME and how many CFS patients the different definitions will produce - this proportion ought to be reasonably consistent across all comparative studies that have used different definitions, and it may even be possible to quantify the mixture of conditions this way...

    I like the word echoes here just as much as the "Russian Dolls" concept...
     
  12. Mark

    Mark Acting CEO

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    Maybe this question is worth an essay...but not now...:D

    A change of a single nucleotide (SNP) can likely make quite a big difference...ah yes, that's the phrase I was looking for - no need for an essay - "the devil's in the detail"...
     
  13. Tulip

    Tulip Guest

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    Dr Chia's website is the best place for learning about enteroviruses and ME/CFS. As you can see numbness is a common symptom.

    http://www.enterovirusfoundation.org/symptoms.shtml

    A recent study found VP1, RNA and non-cytopathic viruses in the stomach biopsy specimens of CFS/ME patients with chronic abdominal complaints. A significant subset of CFS/ME patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.

    For more information:
    Chia, JKS, Chia, AY;(2008), "Chronic fatigue syndrome is associated with chronic enteroviral infection of the stomach," Journal of Clinical Pathology 2008;61:43-48.

    http://www.enterovirusfoundation.org/associations.shtml
     
  14. Mark

    Mark Acting CEO

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    Yes indeed, I found it very helpful too!

    I honed in on this section in the middle (in more ways than one) and wondered about zoning in on the epicentre of the dividing line:

     
  15. Mark

    Mark Acting CEO

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    Don't despair Boule de feu!

    My understanding is that this is simply part of how the scientific process works...and another concept I have been thinking about again recently is Hegel's concept of thesis/antithesis -> synthesis:

    http://en.wikipedia.org/wiki/Thesis,_antithesis,_synthesis

    Within such an argument, both sides assume that their views are incompatible, until a revolution occurs at a point of discovery where they realise they were both right. I have sensed a covergence towards such a scientific revolution for quite some time...
     
  16. Mark

    Mark Acting CEO

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    Well said Bob!

    One thing I think I've noticed (and I may be insulting or wrong here, so apologies if so) is a growing realisation from the ME side of this divide that the people with CFS are also very sick and have at times been resistant to their message because it so often has seemed to be expressed in a way that seemed insulting to those with CFS.

    Because the "CFS" condition was defined and dominated by psychologists, and their studies appeared to show that some of the mixed cohorts did contain people with psychological issues, and depression, often an angry line was expressed in arguments to the effect that "I have real ME, the original physical disease, and it's horrific: I don't know what you have and I don't care; maybe you have a psychosomatic condition or depression or ideopathic fatigue, but I'm really sick..."

    It's rather tragic that both groups of sick people - and their doctors and scientists too, I suspect - have been insulting each other, or taking insult at each others' point of view, for so long. Perhaps there has been - under intense pressure - in the end some acceptance that the "psychosomatic" concept has some validity. It remains my opinion that this concept is, by Popper's principles, not a scientific one, since the concept in general cannot be disproved. Even the discovery of a pathogen causing a specific condition - the sort of cause which psychologists appear to believe will never be found - would only disprove a psychosomatic origin to that particular disease. The concept of psychosomatism itself would not be disproved by such a finding, since any other undiscovered pathogen - such as are evolving all the time - would then result in a new idiopathic condition which "might or might not" be psychosomatic.

    The acceptance of the immoral, unscientific, and devastating hypothesis of psychosomatism is what needs to be consigned to the dustbin of history, and a full proof of the danger and philosophical illogicality of this concept will, I hope, be taught in schools in the future.

    It's very sad, though forgivable, that some of the victims of this concept have taken out the suffering they have received on some of the other victims, but that's part of the (il)logic of it, and it does illustrate that we have all been victims - for centuries, perhaps - of this "idea virus"...I do hope we can begin now a campaign to eradicate this virus, as a vital tool in the eradication of human disease...I think it's about time...
     
  17. Mark

    Mark Acting CEO

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    Off topic - but hopefully interesting, beautiful, and important...

    Admirable though your post was Bob, I want to go beyond a couple of points at the end of your post...

    Quite right: all spot on.

    Here, however, I want to point towards the future I envisage.

    The subject is currently extremely complex, and complexity is in the nature of all life. However: it is also incredibly simple. I am of the firm opinion that, fundamentally, the answer will be ridiculously, frustratingly simple, once we understand it. That is how science has always been, the best revolutionary scientific theories are ridiculously simple though they describe complex phenomena.

    It's rather depressing to read that simplexity
    http://en.wikipedia.org/wiki/Simplexity
    is still regarded as an "emerging theory"...I first encountered the concept in about 1995 and have taken it as read ever since! To me as a mathematician and computer scientist, it seems just obvious, though tragically it takes a very long time for such concepts to be communicated to the mass of the population. If only we were educated along the lines that Plato proposed, with logic and mathematics as the foundation, perhaps this would be less of a problem. But I think he came to be seen as something of a totalitarian.

    This equation is fairly simple (though I lack mathematical notation here so I can't represent it properly for you):
    Zn+1 = Zn^2 + c
    but a plot of it produces this:
    http://www.youtube.com/watch?v=G_GBwuYuOOs
    and this:
    http://www.dailymotion.com/video/x3su4b_mandelbrot-fractal-zoom_creation
    and this:
    http://vimeo.com/6035941
    and in 3 dimensions, the Mandlebulb:
    http://www.youtube.com/watch?v=cDd8R0xlkNA
    http://www.youtube.com/watch?v=eKUh4nkmQbc
    as explained here:
    http://en.wikipedia.org/wiki/Mandelbrot_set

    Google Mandlebrot for much more.

    We seek such equations here...perhaps we can work out together what exactly our equation is: something like:
    ME + EBV -> CFS
    and we need to see XMRV and other such terms in the dictionary of equations too...

    While we're exploring the simple but vital mathematical breakthroughs of the 20th century that people still don't understand and are inadequately taught, I must mention also Mr Godel, and his Incompleteness Theorem (GIT for short):
    http://en.wikipedia.org/wiki/G%C3%B6del%27s_incompleteness_theorems
    for I would make it mandatory for scientists to demonstrate an understanding of this theorem before they may be licenced to practice science, lest they produce an excess of BS, as so many of them seem to do.

    But I am digressing...and I want to develop from this also before I run out of energy...
    Perhaps at the end of the day, we do all have to agree with each other - if there is such a thing as truth, and if we are all searching for it, as we should be. To live in falsehood can only lead to suffering, so it seems imperative that we all come to live in truth. And if there is truth, then those who don't agree with it need to change, for everyone's sake.

    In the postmodern era, we have come to believe that there is no truth, because we understood the relativism of every truth, and these opposing truths seemed contradictory, leading us to despair at the prospect of ever finding any kind of solid ground. But in the post-postmodern era, whatever that may be called, I suggest we may come to realise that the unifying truth is to be found in the acceptance and combination of those relative truths, and that there is no problem in the fact that things that are true from one point of view turn out to be false from another, because there is still one simple truth underneath that:
    p => Not (p)
    I still haven't got round to working through the logical implications and uses of that new mathematical logic of contradiction, though some good work is in progress on that front that I've found - one thing I still wonder is how the work will be useful but I suppose I shouldn't be worrying about that really, if I'm only interested in truth...

    But of course that's all looking ahead, and spreading way off topic: Bob is right, and kind, in that while we do not all know the truth, we can still get along in mutual forgiveness based on the realisation that we are all in the same boat, as far as being fallible goes...

    And to finish off that digression: what I want to know is, is Maarten exploring the new long-lost Wittgenstein papers that were recently unearthed, and when is he going to explain them to us? I don't see anything about them here:
    http://www.maartensz.org/log/2011/NL11.htm
    ...though I would have expected him to be at least as excited as me by this news:
    http://www.bbc.co.uk/news/uk-england-cambridgeshire-13197039
     
  18. Bob

    Bob

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    In a nutshell, it seems to me that some people in this thread are saying that ME is a very specific and exclusive (the scientific meaning) disease and are absolutely certain that the historical disease 'ME' should never be watered down or lost or subsumed by 'CFS'.
    The other side of the discussion asks that, if the criteria for ME are so exclusive, then what do I suffer from if I don't fit those criteria exactly? Why should i have the CFS label dumped onto me, especially if I have a disease very similar to the historical ME and I fit the Canadian Consensus Criteria, but not the Ramsay definition?
    I think these are questions that we can't easily resolve, but we can at least all learn about the history to empower ourselves.

    The main problem that I see with the historic ME criteria at the moment is that they are almost preserved in history and are not very current in terms of ongoing large scale research.

    As far as I am aware, there has been so little research carried out, over the past decade or two, using the actual ME definitions (because 'ME' has been subsumed by 'CFS'), that it's almost like the 'ME' definition has been preserved in formaldehyde over the years whilst the rest of life has moved on. I'm personally not aware of any recent research that has been carried out using only the Ramsay or Nightingale definitions, other than the research that Byron Hyde does.

    In the USA and the UK hardly anyone has an actual diagnosis of 'ME' using Ramsay or Nightingale definitions, whereas hundreds of thousands (?) have a 'CFS' diagnosis in the USA or 'CFS/ME' diagnosis in the UK.

    The original studies relating to the Ramsay 'ME' definition were carried out in out-break areas with a relatively small number of cases. If the 'ME' research had been allowed to develop and flourish, and given resources and patients to study, then we don't know where it would have led us. It could have led to all sort of developments, or changes, in the way we understand historic 'ME' and the way in which 'ME' is defined.

    So when people say that Ramsay describes 'ME', and CCC doesn't, then I'm not sure how true this is in reality, even if it is true technically and historically. It might be true in medical papers, but historical research papers don't give us the whole picture. They only give part of the picture because of the limited amount of research that has been carried out on 'ME' over the past few years. 'ME' definitions might have changed and developed over the years to look more like the CCC, if they were allowed to develop freely, or they might have developed certain subsets that looked like the CCC. Or they might not. We don't know how they might have changed if given the resources and the patients to study.

    As an example of this, we don't know much about the following:
    1. The cause of 'ME'.
    2. Does whatever causes 'ME', also display different sets of symptoms, depending on how, where or why the disease was precipitated? (i.e. Is the disease, that Ramsay describes, the only way to define this single disease or can the same disease process express an entirely different set of symptoms?)
    3. Does whatever causes the disease, described by Ramsay, cause different symptoms in different people, depending on what stage in the illness they are, where they became ill, how they became ill etc.?
    4. Can the single disease 'ME', with a single cause, present with many different types of symptoms in different individuals?
    5. Can types of symptoms expressed in the single disease 'ME' change over time in an individual?
    6. Can the severity of symptoms of the disease 'ME' vary over time in an individual, and between individuals? i.e. Can there be mild, moderate and severe expression of symptoms?
    7. If ME is precipitated by different factors (e.g. different viruses), can it have widely different symptoms, unbeknown to, and unrecorded by, Ramsay?

    (Although, I know that some of these questions are answered in the ME definitions.)

    Science, and our understanding of diseases, is fluid and dynamic, and changes over time. Our understanding of 'ME' has not had the chance to develop much over time because of the politics at play.

    Over the years, a lot of research has been done under the 'CFS' banner that gives us much insight into our disease, or diseases. It would be a unwise to dismiss all of this research just because the researchers did not use the name, and exact definition, of the disease 'ME'.

    I think we all do at least agree on the fundamentals, and this is what will take our community forwards.

    We all agree that the current situation is not acceptable, and we all want vast improvements to the way our disease is treated. There does seem to be some disagreement over how flexible we can be when defining 'ME'. I think this will be only resolved over time by community consensus, proper political engagement and scientific developments. There's probably no fixed answers at the moment, although after reading this, and other threads, I'm now personally leaning towards understanding that ME is a specific disease described by the historical definitions, but I believe that this will only be helpful to our community if the knowledge is now expanded upon and developed on a large scale and brought up to date using latest research and more recently diagnosed and evaluated patients. I think the CCC should also be kept and used for the political constructs 'CFS' and 'ME/CFS', as this will be a helpful step in the right direction for our community, at least politically speaking, until historic 'ME' research is developed on a large scale. The current definitions of 'CFS' and 'CFS/ME' have a lot of research behind them.

    If the CCC were to be adopted in the UK and the USA for the disease that they call 'CFS' or 'CFS/ME', then I believe that it could only be beneficial for our entire community, including those who are advocating for a more exclusive definition of 'ME'.

    Whether CCC should be used to define 'CFS' or 'CFS/ME' or 'ME', is a legitimate argument to have, but I think that people should be careful to separate this argument from the argument about whether CCC should be used at all. It's very confusing when people start having arguments over the use of CCC without totally clarifying their perspective and their use of the terms 'ME' and 'CFS' from the outset. Often what seems like a huge argument can just boil down to a different and casual use of the terms 'ME' and 'CFS'.

    I'm very interested in finding out more about the history of 'ME', and how the 'ME' definitions are different to what the CCC describes. So I intend to do some more reading about it.
     
  19. Boule de feu

    Boule de feu Senior Member

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    And when you do, I would love to find out what your conclusions are. ;-)
     
  20. Mark

    Mark Acting CEO

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    Thanks for pointing me back at the thread of the original argument Tulip, that's very helpful for understanding the backplot...I hope we're all ready to move on now?
     

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