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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. floydguy

    floydguy Senior Member

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    I clearly have fairly significant muscle fatigue but no evidence of muscle wasting. BTW, fatigue aside from muscle fatigue is not a primary concern for me.
  2. rlc

    rlc Senior Member

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    Hi Bob, you seem to be getting caught up on the fatigue word, fatigue is common to almost all chronic diseases, which is why the CFS definitions are such a joke, all qualifying for CFS means is your sick with god knows what and in the past these symptoms would lead to extensive investigations to find what illness the patient had. These days you just get diagnosed with CFS and left to suffer from an undiagnosed illness which in a lot of cases are curable and if not treatable and often these diseases when left undiagnosed lead to an early death for the unfortunate patient.

    Because ME does become a chronic disease an ME sufferer will experience fatigue, but it is not the defining, cardinal symptom that differentiates it from other diseases, ME defining symptom are things like the acute onset, CNS damage and known incubation period. CFS is defined by Chronic fatigue which is why so many people get misdiagnosed because chronic fatigue is found in so many illnesses that it should never be used as a defining symptom of anything!

    Due to illnesses Ill rely on Dr Hyde to explain it, to try and stop anymore confusion regarding names in this article he uses ME for ME, ME/CFS for those in which there is confusion as to what they have and need investigating further and CFS for the gradual onset patients who are misdiagnosed.

    Please read entire article found here http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf

    There is another great article here in which he explains the history of ME and what it is and the bizarre history of the creation of the bogus disease CFS and what it really is http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
    In which he says this about the CCC

    It is the first definition and introduction of M.E. and CFS that makes a bit of sense, but like I in the first years of study, I confused M.E. and CFS as being the same. As I have explained, they are not. However, until a better set of definitions is constructed, we should go with the so called Canadian definition.

    He then constructed a better definition the Nightingale Definition

    http://www.cfids-cab.org/MESA/Nightingale_ME_Definition.pdf

    CHRONIC FATIGUE SYNDROME (CFS)

    The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991 (Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue.

    By assumption, this CFS fatigue can be acquired abruptly or gradually.
    Secondary symptoms and signs were then added to this primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."

    The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.

    SIGNIFICANT DIFFERENCES BETWEEN ME AND CFS

    Though the symptoms of CFS resemble those of ME, the differences are so significant that they would exclude ME patients from the 1988 and 1994 CDC diagnoses of CFS. The following features of ME separate it from CFS:

    The epidemic characteristics
    The known incubation period
    The acute onset
    The associated organ pathology, particularly cardiac.
    Infrequent deaths with pathological CNS changes.
    Neurological signs in the acute and sometimes chronic phases.
    The specific involvement of the autonomic nervous system.
    The frequent subnormal patient temperature.
    The fact that chronic fatigue is not an essential characteristic of the chronic phase of ME.

    However, there are four essential differences between ME and CFS that are perhaps more important than any of the preceding differences:

    1. No one in composing the two CDC definitions told anyone not to investigate the CFS patients during the first 6 months of illness; they simply stated that the CFS is characterized by an illness of 6 or more months of chronic fatigue. Undoubtedly, it was unintentional. Yet obviously CFS following infectious disease begins in day one of the first 6 months or even in the days before this initial period. Researchers into CFS have simply avoided that essential area. The inception of an illness is always the most fertile area of research into cause and pathology.

    2. Organ disease in CFS has been avoided. By definition, it does not occur. If significant primary or secondary organ disease occurs, then this would be a cause of the fatigue and the illness would not be CFS (Fukuda et al., 1994).

    3. The inventors of the second CDC CFS definition laid out certain guideline examinations (Fukuda et al., 1994). They never stated that no other testing should be done, but for all purposes, these very preliminary tests have been used for inclusion guidelines in CFS research papers. Research physicians have apparently forgotten that we do not know what CFS is from a pathophysiological basis. For this reason, not only have most physicians avoided exhaustive testing but many have decried exhaustive testing as foolish.

    4. This is the most important essential difference. Nowhere in any of the four definitions of CFS is there a discussion of acute versus gradual onset illness. This has allowed physicians to include any patient who fits the 1988 or 1994 or U.K. definitional characteristics into the CFS illness spectrum.

    Because none of these definitions mentions gradual onset CFS disease, gradual onset patients, as a group, not only fit the four definitions but also totally obstruct CFS as a disease category. The reason for this statement is simple. Gradual onset CFS frequently represents non-diagnosed major disease or pathophysiological anomaly. Many patients with a diagnosis of CFS today have non-diagnosed major diseases. These patients warp any statistical or scientific examination of the CFS patient. Most of the patients I have seen from Canada, the United States, or from the United Kingdom with gradual onset CFS illness have nondiagnosed major medical illness or anomaly. This fourth essential difference defines the cornerstone of investigation of much CFS.


    Because the CCC doesnt make reference to these Significant difference between ME and CFS it is just another CFS definition and shouldnt include ME in its title it should have been something like the Canadian CFS definition CCFS.

    If you compare the CCC definition and the Fukuda definition there really isnt much difference, apart from that the CCC adds a few ME symptoms like POTS, which is unfortunate because now you can have people with a gradual onset disease that doesnt have CNS damage being diagnosed as having ME/CFS, whereas under the Fukuda they wouldnt have qualified and would have been investigated to find the real cause of their suffering.

    To qualify under the Fukuda criteria you have to have.

    1. clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities
    2. the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
    o self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
    o sore throat that's frequent or recurring
    o tender cervical or axillary lymph nodes
    o muscle pain
    o multi-joint pain without swelling or redness
    o headaches of a new type, pattern, or severity
    o unrefreshing sleep and
    o post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.

    The CCC is essentially the same, but explains the symptoms in more detail and has added a some more ME symptoms

    1. Fatigue: The patient must have a significant degree of new onset,
    unexplained, persistent, or recurrent physical and mental fatigue
    that substantially reduces activity level.
    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate
    loss of physical and mental stamina, rapid muscular and cognitive
    fatigability, post exertional malaise and/or fatigue and/or pain and
    a tendency for other associated symptoms within the patient's cluster
    of symptoms to worsen. There is a pathologically slow recovery
    period.usually 24 hours or longer.
    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
    rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
    4. Pain:* There is a significant degree of myalgia. Pain can be experienced
    in the muscles and/or joints, and is often widespread and migratory
    in nature. Often there are significant headaches of new
    type, pattern or severity.

    5. Neurological/Cognitive Manifestations: Two or more of the following
    difficulties should be present: confusion, impairment of
    concentration and short-term memory consolidation, disorientation,
    difficulty with information processing, categorizing and word
    retrieval, and perceptual and sensory disturbances.e.g., spatial instability
    and disorientation and inability to focus vision. Ataxia,
    muscle weakness and fasciculations are common. There may be
    overload1 phenomena: cognitive, sensory.e.g., photophobia and
    hypersensitivity to noise.and/or emotional overload, which may
    lead to crash.2 periods and/or anxiety.

    6. At Least One Symptom from Two of the Following Categories:
    a. Autonomic Manifestations: orthostatic intolerance.neurally mediated
    hypotenstion (NMH), postural orthostatic tachycardia
    syndrome (POTS), delayed postural hypotension; light-headedness;
    extreme pallor; nausea and irritable bowel syndrome; urinary
    frequency and bladder dysfunction; palpitations with or
    without cardiac arrhythmias; exertional dyspnea.

    b. Neuroendocrine Manifestations: loss of thermostatic stability.
    subnormal body temperature and marked diurnal fluctuation,
    sweating episodes, recurrent feelings of feverishness and cold
    extremities; intolerance of extremes of heat and cold; marked
    weight change.anorexia or abnormal appetite; loss of adaptability
    and worsening of symptoms with stress.

    c. Immune Manifestations: tender lymph nodes, recurrent sore
    throat, recurrent flu-like symptoms, general malaise, new sensitivities
    to food, medications and/or chemicals.

    If you then go back and compare both of them to what Dr Hyde outlines as the significant differences between ME and CFS, you can soon see that neither the CCC or Fukuda are ME definitions. E.G. doesnt mention that ME is always a sudden onset disease, is always a disease of the central nervous system, has a known incubation period, occurs in epidemics so there for is an infectious disease and its known incubation period narrows down greatly the number of viruses that could be responsible etc, etc.

    Dr Hyde then goes on to say

    PREMISES CONCERNING THE PATIENT AND THE DISEASE ENTITY

    The patient with the diagnosis of ME/CFS is chronically and potentially seriously ill with (1) a poorly understood illness of a pathophysiological nature or (2) a missed classical disease entity. The typical patient has seen many excellent physicians, who have failed to discover the cause of the patient's illness other than to variously call it ME or CFS, psychiatric illness, somatization, or more charitably, "I simply do not know." These physicians have repeatedly performed many tests but have generally failed to find any significant or substantial indication of cause or nature of the patient's disease.

    At least some of the patients with an initial diagnosis of gradual onset ME or CFS have another and potentially treatable classical disease or anomaly. These ME/CFS patients require a total investigation and essentially a total body mapping to understand the pathophysiology of their illness and to discover what other physicians may have missed. In many instances, patients appear to know more about ME/CFS than their physician and in fact have directed their own investigation under the directional guidance of a kind and supportive clinician.

    These patient-directed investigations usually jump from one trendy test of little value to another consuming vast amounts of funds and time. Rarely, however, do the physician and patient end up with any substantial scientifically supportable disease entity or diagnosis other than that with which they started ME/CFS. One can assume that many of the patient's physicians have spent the proverbial 8 minutes that an average North American or British physician spends with the average patient. Likewise, most internists will have spent 40 minutes doing a classical history and physical that can generally detect obvious acute disease or advanced disease of a progressive nature, but is usually irrelevant in understanding a chronic pathophysiological illness.

    I assume that none of the patient's illnesses is due to a psychiatric cause until I have completed my investigation. In the end, although these patients may have significant anxiety and problems caused by loss of income, social status, and meaning, less than 5% have any significant psychiatric illness. Initially in 1985 to 1990, I was able to unravel the causative disease or illness in the ME/CFS group in no more than 10% to 20% of the patients I examined. By 2000, I was able to discover the major elements of the underlying disease pathophysiology in 70% to 80% of the patients I examined. Each year, my success ratio has improved. Because of this, I believe that the 20% to 30% failure rate in defining the pathophysiology of this group is due to my own deficiencies as a physician and/or the deficiencies of the available technologies. One should not blame patients for their illness or jump too casually to a psychiatric or sociological diagnosis.

    For me, a patient with an initial diagnosis of ME/CFS can be a gold mine of disease, missed injuries, physical and physiological anomalies, and genetic curiosities.

    Its such a shame that Dr Hydes work is being deliberately ignored by the likes of the CDC and Wessely School who are well aware of it!!! I havent heard an update on what percentage of the none ME patients hes able to work out whats really wrong with them is, but if it was up to about 80% by year 2000, Id imagine its grown substantially in the last eleven years. If he could be teamed up with some of the worlds other leading diagnostic experts then they could work out what is happening with the rest and write a manual for doctors throughout the world to use that explains what to look for, and how to test for, all the diseases that get misdiagnosed as CFS or ME/CFS. There are after all about 14,000 known diseases and its a bit much to expect one man to know everything about all of them!!!

    And if his Definition, and knowledge of the use of SPECT, PET and QEEG scans to diagnose ME patients and separate them from the others was introduced throughout the worlds medical profession then the whole problem would be solved and everyone would get their correct diagnosis, and they could get on with finding the cause and cures for ME.

    Unfortunately the powers that be wont let this happen without a fight imagine the law suites, it would take a concerted effort to get the truth in all the worlds press, and create so much public pressure on governments that theyd be forced to change before this will ever happen.

    But until the suffers can gain agreement that ME is a infectious CNS illness and that CFS is a bogus disease created by the CDC that is being used to distract all attention from ME, and because CFS isnt a real disease then the CFS patients can only ever be misdiagnosed. If this understanding is not achieved then nothing will ever change.

    All the best
  3. Nielk

    Nielk

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    I am sick and tired of the tirades going on on this thread telling me over and over again that M.E. is "real" disease as opposed to CFS which is not in effect a disease at all but, a syndrome for all kinds of misdiagnosed entities.
    You assume that we don't inquire at all into other possible illnesses and just simply accept CFS as our diagnosis even without looking at other options.

    Do you really think that we are all retarded? Suffering so greatly from so many symptoms so we jump to accept the so appropriate CFS diagnosis?

    How do you know how many tests we have gone through? Do yo realize how many experts we see all over the country and how much of our precious time we lose till we finally get a real diagnosis from an expert in the field?
    Do you really think that:
    Dr, Bell
    Dr. Peterson
    Dr. Klimas
    Dr. Montoya
    Dr Der Meir
    Dr. Enlander
    Dr. Levine
    Dr. Natelson
    Dr. Mikovitz
    and many many more, are dealing with an illness that desn't exist?
    You are insulting all the patients in the U.S. and basically because we are stuck with a name that we despise.

    Even if you can prove to me without a shadow of a doubt that M.E, is a different illness from CFS, it wouldn"t change anything.

    Dr. Ramsey and Dr, Hyde studied an outbreak in the Royal Free Hospital many years ago. How many patients with CFS have they actually personally checked and studied.

    I will never say that M.E. which is diagnosed by having specific symptoms is fake illness. In the same manner , I would expect that you would have the decency to admit that we too have a legitimate illness albeit with a ridiculous name that prevents the world to take us seriously.
  4. insearchof

    insearchof Senior Member

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    Hi Neilk

    No one is personally addressing these remarks to you or anyone else. No one is telling you or anyone else personally, what they personally have or dont have, let alone over and over.

    I can say (having been involved in this thread from its inception), that this is not a tirade, it is a discussion - with both sides trying very hard to understand the others perspective and being very careful not to inflame matters.

    The discussion is based on an analysis of historical literature and fact and its application/impact on what we see today. It represents an exchange of views on our respective understanding of our own research into this topic.

    If there is repitition, it is because both sides are still engaging with someone that has an alternate pov - in an effort to better understand one another, and clarify points of understanding and visit new takes on the matter.

    I personally have found this thread very helpful. I have learnt a lot and others have caused me to sit down and seriously re consider my own pov and look at some exciting new points and materials.
    I am very grateful for the amount of time/effort and thoughtful contributions all those participating in this thread have so generously given.

    I acknowledge that the material on this thread might be confrounting for some people. However it is not intended to be upsetting or insulting. It is a genuine and concerted effort by both sides to look at historical material and its application.

    If you find this thread too upsetting Neilk, then it might be best to avoid it.
  5. insearchof

    insearchof Senior Member

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    Hi Bob,

    Thanks for your reply -#276 and providing your source material. So I would like to consider the material referred to there and then come back and reply, if thats ok.
  6. Tulip

    Tulip Guest

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    Nielk, insearchof is right, this is a thread purely for educational purposes for anyone wanting to know the history of these illnesses. No one is telling anyone on this forum what they do and don't have. Please don't take this discussion personally.
  7. Bob

    Bob

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    Hi rlc, thank you for your information.

    No, I'm not getting caught up in the fatigue word. You have misinterpreted the discussion. I'm having a discussion about fatigue in order to try to understand the facts about ME, which in my opinion have not been well presented on this thread. The issue of fatigue is one among a number of issues that I have raised on this thread.

    I understand what you and Tullip are saying about the CCC not being the most specific diagnostic criteria for ME. I haven't been arguing with that. I've only been trying to understand the exact nature of historic ME.

    I've been studying the historic definitions of ME which, although I was told otherwise, sometimes do appear to include fatigue as a predominant feature. I think it's helpful to know the facts. insearchof and I are currently investigating the confusion about the use of the term 'fatigue' and the apparent contradictions in the historic literature.
    This is a useful exercise for me personally.


    Well, as we have been discussing on this thread, the literature on ME seems to be somewhat contradictory, and there isn't always a consensus, so I think you should be careful about presenting these things as 'fact', without quoting your exact sources, and understanding that Byron Hyde's opinions don't necessarily equate to 'facts', although they may do.

    You say that fatigue doesn't differentiate ME from other diseases, but some people would argue that it is the nature of the fatigue (i.e. the nature of post exertional relapse) that differentiates it from other diseases. Ramsay had a lot to say about fatigue, and seemed to explicitly say that it is indeed a cardinal feature of ME, without which ME cannot be diagnosed, at least in some of his literature.

    Personally, I agree that 'fatigue' is not a helpful diagnostic criteria.

    You say that ME has to have an acute onset. I haven't seen this documented in Ramsay's literature. And Byron Hyde seems to say that 'Primary ME' has an acute onset, but he isn't specific about what he calls 'Secondary ME' in the Nightingale definition, so I assume he believes that can have a gradual onset.

    As for the incubation period, I believe that is supposed to be a guide to diagnosing ME, and not an absolute. Hyde says that there is not a consensus about the cause of ME, and not a consensus that enteroviruses are involved in ME, and so I imagine the incubation period cannot be absolutely certain.

    The enterovirus association with ME has been presented as 'fact' on this thread, and this isn't the case. Even Byron Hyde says this.


    I think that most of us on this forum do have insight into the fact that current definitions of ME are unhelpful catch-all criteria, and that we have an immune-related neurological disorder.
    But I don't think it helps your case when some information is presented as 'fact' when it isn't as clear cut as that. It just confuses people immensely. I think that people would prefer to be presented with accurate information, even if the information cannot always be presented in absolute terms.


    I am personally in favour of using a more specific definition of ME, especially for research purposes, and dropping the use of the word 'fatigue', but I think it's helpful to get the facts right about the subject, which is why I've been investigating the literature about historical ME in this thread.
  8. insearchof

    insearchof Senior Member

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    Hi Bob,

    I just thought I would address some preliminary matters before coming back and discussing Ramsay literature further, from the sources you kindly provided.




    I am a little confused by this statement Bob and am hoping you can clear this up for me. I am not sure what you mean here and it would help to know, as I wade through that source material.

    What is the ME definition your referring to Bob?

    The 1986 paper, the 1990 research paper, the 1988 paper and transcript all authored by Ramsay discuss what is referred to as his definitions. So I am a little confused.




    I note there that like some of the other sources you have kindly provided, they appear to have quoted Ramsay, but from a quick look at this source above it appears they may have posted their own (or anothers?) summary/understanding of the material.


    Having read the 1986 paper, I do not recognize either paragraph there as a direct quote. Of course, the other reference they provide is Ramsays book so one of those paragraphs could have come from that source. I do not currently have access to Ramsays book so I cannot comment. The second paragraph referred to at that site on Ramsay, looks to be the same definition cited by Dowsett in the article I made mention of in my last post.
    Anyhow, I will look more closely at the matter.


    As I understood it I thought we were still considering the rightful place and emphasis on muscle fatigability both by Ramsay and generally so in the context of historical literature.


    However, it seems as though you would also like to look more closely at this aspect of Ramsays work. This is a little diversion from what you and I have been discussing which is fine but it might take me a little while to catch up and discuss this with you. Though I see rlc has started a dialogue with you on this matter, which I hope helps address some of these issues for you in the interim.




    At first reading, a lot of what has been presented may seem contradictory.


    For the most part, the sources you quote provide great entry portals into the subject, but then you have to dig deeper. I have personally found, that I needed to read the documents or books from which they quote from, and try and place it within a broader frame work and then reach an understanding on the matter.


    The next example you cite is a good illustration of this point.



    At first glance, you would be confused and wonder what is going on if you were aware, as you are that Ramsay passed away in 1990.

    As you know, the research of Ramsay and Dowsett on enteroviruses (coxsackie) in ME patients and the relationship between ME and PVFS, was also published the same year Ramsay died in 1990.

    That same paper was also published in full in Hydes text book ''The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome. Ed: BM Hyde, J Goldstein, P Levine. This text book was published by the Nightingale Research Foundation in 1992, with the Ramsay/Dowsett paper circa 1990 in it. So effectively, the 1990 paper was re published there in 1992.






    Hummingbirds web site is probably a good place to start Bob, because it is fairly comprehensive and easy to access. Hydes site - The Nightingale Foundation, also has a couple of papers published by Hyde freely available. There are some other references and of course there is Hydes text book - but I would start with Hummingbirds for the reasons expressed.




    .


    I am sorry Bob, I was not aware that this was an issue on this thread. Though I believe some posts in discussing the history of ME have touched on this. I acknowledge your current interest to look more closely at fatigue within the context of historic ME and how it translates to current CFS definitions, which I see your currently addressing with rlc.





    I would agree that this is the perception that some people have and have come to this thread with.


    I am not sure that any person on this thread sharing what they know on historic ME, has ever promoted it as exclusive in the sense of being an exclusive club and or exclusionary in that regard. The accusation that this is what those of us trying to share and exchange in formation on historic ME, were doing, was made though and it was one of the reasons why this thread hit a snag.


    From my perspective, all we were attempting to do - is do what we are doing now - share our knowledge, examine other counter views and learn more as we go.


    Those of us promoting the historic information know that the general perception is as you say, that ME is elusive (difficult to define and diagnose ) and novel. This is however, a common misconception, which really needs to be corrected. It is also something that motivates those us who know this, to do what we can to raise awareness on historical ME.


    As for only a select few of our community being able to receive a diagnosis this is very true and it is not acceptable.


    Hopefully by raising awareness of what ME is and that it is not novel it is a measurable distinct and well defined illness supported by a large body of literature that more people will push for the necessary recognition of these facts and for change.


    It will not come easily for those of you in the UK, because of the psych lobby and because of the way your medical system operates, which makes it more difficult to get the necessary tests done. Even so, in Australia where there might be a little more opportunity to get the tests performed for most people, they would still have to find a doctor who will acknowledge what is being presented and that it not science fiction and whoare then preapred to study up or refer you to someone who has the knowledge and or will do this and investigate the diagnosis.




    I can understand how the confusion might have arisen.


    When it was stated that fatigue is not a feature of real ME, I believe that firstly, fatigue as in idiopathic fatigue, is not a feature of ME. Secondly, I believe that the muscle fatigue identified by Ramsay is, but for the purposes of diagnosis, although important it is not the key defining characteristic of the illness. It must be considered and looked for, as should other characteristics of the illness, including evidence of CNS dysfunction.


    So, on my understanding of the matter, when someone says that fatigue is not a feature of real ME, I can understand where they are coming from. However, that might be because of the reading I have done and my own understanding. I recognise though, that without the clarification generated by the discussion that we are now having on this thread that this statement might have been misconstrued. However, it takes some discussion to get to this point because of the emotions surrounding the subject and the tendency to view things personally and apply the knowledge being shared to a persons individual health circumstances instead of trying to simply look at the information for its educational and factual content -divorced from personal circumstances and viewed impartially. That is hard to do, I understand, but I also think that it contributes to problems when trying to discuss the material presented.



    .


    I agree that most of us cannot go and see Byron Hyde, and even if we could he could not possibly cope with the demand.


    It is clear to me that the people in this forum and those I have met that do not have an ME diagnosis, either have it, something like it or another serious illness. In short, the people in this collective group represent some of the sickest of society, who have been abandoned with no or little investigation and care.


    It is my hope, that if the historical evidence of ME what it is, and what it is not is presented to the public and they understand its association with CFS that they will be sufficiently shocked to demand that justice be done for all. Justice for all in my view would be a through medical investigation to consider not only ME, but a large number of illnesses which mimic ME and the symptoms as defined under CFS. This is a fundamental human right which we are all entitled to. We should use this information to demand appropriate health care. We should not have to rely on a handful of physicians with knowledge on this.




    Firstly Bob, although I understand where you are coming from - as most of us have been left to be our own physicians - it is not for us to test our illnesses against bench marks or to set bench marks. That is the job of the medical science community. It is our job - to hold them to account for not doing this.


    Please remember, that the SPECT for the purposes of a diagnosis of ME, is only one bench mark. There are others that have to be met, (like in any other illness) in order to satisfy the diagnostic criteria. However, Bob the tests for ME are not extensive and are not uncommonly employed in medicine.


    The problem is not the tests, but the system and its continued refusal to recognise factual medical history and apply it.





    If you do feel this way Bob, then you might like consider supporting / lobbying for the promotion of the facts/truth regarding historical ME. Your entitled to be considered for a proper ME diagnosis and care and so too, are those coming after you.
  9. Bob

    Bob

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    You're not the only one who is confused! :confused:

    I was kind of hoping that you might be able to provide some clarity for me!

    I thought I had read that there was a 1986 and a 1990 Ramsay definition of ME. Is that not case?

    I've presented excerpts from what I thought were his 1986 and 1990 definitions.

    This is all new to me, so I don't know a great deal more than I've presented on this thread.

    Ramsay seems to have written so much literature that it seems difficult to pin down his definitive literature on the subject.

    I'll respond to the rest of your post later.
  10. insearchof

    insearchof Senior Member

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    Thanks for that Bob. I am not sure I am any more enlightened, but I will try an sort through this.

    I dont think the extent of Ramsay's writings is the problem.

    I will post on this matter when able, but it might take some time.
  11. Bob

    Bob

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    Thanks insearchof...
    I'll keep reading as well...
    Although, I'm going to have to slow down a bit now, as I've got some other things that I need to focus on as well.
    I'll try to find some relevent literature, and print it out to read in the evenings.

    I've just read through your previous long post...
    Thanks very much for that... It's a very helpful discussion...

    I think that some of the issues that I raised about this thread, and which you responded to, arose from information being presented in absolute terms.
    e.g. ME is caused by enteroviruses. Incubation is a specific number of days. ME can only be acute onset. Fatigue is not a feature of ME. etc.
    On close inspection it seems that these are not absolutes, even going by Byron Hyde's literature.
  12. insearchof

    insearchof Senior Member

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    Hi Bob,

    Just passing by - so thought I would respond to this quickly - as I think you have highlighted an important point.

    Firstly, I would say enteroviruses are associated with ME and that ME presents with acute onset.

    I think that some misunderstandings may have occured as a result of this - but the absolute terms as you put it - represent general rules and understandings. Not making this clear was probably the problem.

    Doctors in approaching and making a diagnoses, don't look at exceptions - they look at the established general rules and treat them first and foremost ,as though it were an absolute. They need to do so for a number of reasons practical and scientific (ie occams razor principle: all things being presumed equal, the simplest / most obvious / accepted proposition is correct.) When that does not work, they will then consider the exceptions (but do so reluctantly, I believe).

    These statements here on ME, have been presented in this manner: as general rules that are applied first and foremostly in an absolute way (as would a clinician applying them as general rules to guide their diagnostic assessment) and this was how I understood them and their presentation both here on this thread and elsewhere.

    I understand though - that people who have not researched the topic extensively may have failed to have appreciated that. Similarly, if you do not put this within the context of how doctors approach this from a clinical diagnostic point of view, you would also have misunderstood what was trying to be communicated here.

    Given this and that context (which I understood them in) those statements are correct.
    In so far as they represent general rules (the commonly accepted starting position) of ME for diagnostic assessment, they are absolutely spot on. :)
  13. Bob

    Bob

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    I understand your general point insearchof, but this last comment cannot be accurate, because Hyde says there is not a consensus about at least one of these issues - the infectious cause. Quoted from the Nightingale Definition, he specifically says, with regards to this issue: "I share the belief that enteroviruses are a major cause." So explicitly says that this is his opinion, and that there is not a consensus.

    He also does not indicate that 'Secondary ME', as he calls it, is always, or predominantly, an acute onset. From his wording, I take this to mean that 'Secondary ME' can equally be of slow onset, but I have yet to find out the exact details about this.
  14. insearchof

    insearchof Senior Member

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    Hi Bob,


    The issue of causation is open for debate. However what is generally accepted is an association. So your right on causation, which is why I said this:



    Given the debate on causation- the correct term is association and the association is a very strong one - which is why Hyde makes the statement on belief re causation.




    Secondary ME is the exception to the rule - the rule being Primary ME.

    Primary ME - general rule is - acute onset.

    With regard to Secondary ME I would need to review the material, but you might be right there. However it is, from my recollection and understanding - the exception to the generally accepted notion of what ME is - hence the term ''Secondary''. At least that was my recollection.
  15. insearchof

    insearchof Senior Member

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    Hi Bob,



    I just wanted to expand on the point of causation and association.

    My own view -based on my own reading, is that ME is caused by enteroviral infection. I think there is sufficient evidence to demostrate causation. This evidence can be found in the following sources:

    *literature in relation to historical epidemics
    *autopsy findings consistent with enteroviral infection in ME cadavers
    *research studies

    Hyde is not the only one who believes that enteroviruses are the main cause of ME.

    The work of other researchers, have also led them to this conclusion. Prof James Mowbray (UK) is one that immediately comes to mind, who has run research on this issue in the past satisfying Koch's postulate. John Chia's work, in part, might also be cited in support of the notion. ie: reactivation of infection and symptom onset of patients over time - who were reviewed for chronic long term enteroviral infection.

    It seems that Hyde and some other material I have read, is careful in the use of the word causation - hence the word ''association''.

    On reflection, I dont really know how wide the consensus is for one term over the other. Prof Hooper and others - John Chia, however, may not be so restrained, I am not sure at this late hour. :)

    Causation though, is certainly a very arguable point - and has been ..............but ''association'' is less so.


    Our recent exchange has made me ask why it is still questioned.

    And the only answer I can come up with (at this hour) is, that despite a good measured spread of evidence - today -science seems to require and place a greater emphasis on seeing a certain number of studies and accords them significance on the basis of the prestige associated with the institute/scientist and the journal it is published in. ME was, as we know, effectively swept off general medicines radar in the 1980s-and all these stars have not aligned in this fashion since in order to settle the matter on causation once and for all.

    More research on ME patients might be helpful here.
  16. Bob

    Bob

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  17. Bob

    Bob

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    OK, before I move on from the fatigue issue, I just want to point out that Ramsay talks about fatigue or fatiguability in relation to ME in four articles on the Hummingbird webpage dedicated to Ramsay:
    http://www.hfme.org/wramsay.htm


    1. MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]

    2. The Myalgic Encephalomyelitis Syndrome A. Melvin Ramsay M.A. M.D.

    3. THE CLINICAL IDENTITY OF THE MYALGIC ENCEPHALOMYELITIS SYNDROME By A.Melvin Ramsay M.A. M.D.

    4. Myalgic Encephalomyelitis Then and Now. AM Ramsay EG Dowsett.

    ---

    Also of interest is that in a paper written by Dowsett in 1999, called "THE EPIDEMIOLOGY OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK 1919-1999", she describes 'exhaustion' as being a characteristic symptom, instead of fatigue:

    http://www.25megroup.org/infomedical_dow_the_epidemiology_of_me.html

    CHARACTERISTIC SYMPTOMS INCLUDE;

    a). An episodic and unpredictable state of central nervous system exhaustion, triggered by mental or physical over exertion often with delayed onset and prolonged recovery


    (But of course that's not the same as saying that exhaustion is a useful diagnostic criteria.)
  18. Bob

    Bob

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    Here is Dowsett's description of ME/CFS, which I think she wrote in 1999...
    I'm posting this out of historical interest, because it is the most recent description of ME that I've found so far, apart from Hyde's work.


    I'm pretty certain that by refering to it as 'ME/CFS', she means ME as defined by WHO, and not CFS.


    http://www.25megroup.org/infomedical_dow_the_epidemiology_of_me.html

    The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK 1919-1999

    (Evidence submitted to the All Party Parliamentary Group of Members of Parliament, EG Dowsett J Richardson. 23 Nov 1999)

    WHAT IS ME/CFS?

    DESCRIPTION AND CLASSIFICATION
    ME/CFS is a syndrome (a linked group of symptoms) which usually follows a common and apparently trivial virus infection (often described as a self limiting respiratory/gastro intestinal upset with headaches, malaise and dizzyness from which the majority of people recover). However, after an interval, a second more serious multi system disease can develop with variable involvement of cardiac or skeletal muscle, liver, pancreas, lymphoid or endocrine organs. Nevertheless, ME is primarily a neurological illness with well documented encephalitic features and classified as such by the WHO international classification of diseases (ICD 10).



    CHARACTERISTIC SYMPTOMS INCLUDE;2,3,14

    a). An episodic and unpredictable state of central nervous system exhaustion, triggered by mental or physical over exertion often with delayed onset and prolonged recovery

    b). A profound neuroendocrine disturbance affecting the hypothalamic/pituitary/adrenal response to stress as well as the normal homoeostatic control of sleep and temperature rhythms, of fluid balance, and of growth and reproductive hormones.

    c). Defective control by the autonomic and sensory nervous system of cardiovascular and gastro-intestinal function and of pain and other tactile sensations.

    d). Brain dysfunction includes cognitive problems such as defective attention span and memory, impaired verbal and mathematical ability as well as difficulties with balance, fine motor control and spatial perception and disturbance of auditory and visual function as well as seizure activity often misinterpreted as panic attacks.

    e). Musculo-skeletal problems affect some 70% of patients, one third of whom have an abnormal metabolic response to muscular exercise.

    (f) The disease pursues a chronic, relapsing and unpredictable course.
  19. Bob

    Bob

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    It's a very interesting topic...
    Although I have heard of the enterovirus association before, I was not aware of its importance or significance...
    So this is mostly new to me...
    It's something that I'll definitely look out for more information about, and I'm going to look at Chia's work more closely.

    Hyde says that we could vaccinate against ME by adding enteroviral genetic material to the polio immunization:
    "If this belief is correct, many if not most of the M.E. illnesses could be vanquished by simply adding essential enteroviral genetic material from these enteroviruses to complement polio immunization."

    He also points out that Jonathan Kerr has done research with enteroviruses, which I didn't know about, or I'd forgotten:
    "Recent publications by Dr. J. R. Kerr have also identified the fact that enteroviruses are one of the most likely causes of M.E."
    This sounds like interesting research, and I have a lot of time and respect for Kerr, so I think I'll have a look at his research papers when I have time.
  20. insearchof

    insearchof Senior Member

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    Hi Bob

    Thanks for the reference material re Ramsay et al ...will look at it with the rest.

    I had read Hydes idea, a good one I think...insofar as vaccinating for the known enteroviruses, especially those associated with ME. At least that way, future generations would not have to suffer so needlessly. :(

    I too had forgotten about Kerr. I recall reference being made to him, possibly by Hyde and made a mental note to look at his work....but was obviously side tracked with other things. Thanks so much for the reminder

    The only caveat I would add when considering modern enteroviral studies - is to consider the cohort being studied ie fukuda CFS -v- Ramsay/nightingale ME. In other words, is this a study as it relates to ME as we are discussing here, or CFS?

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