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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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    Bob, I understand, believe you and accept that.

    I appreciate Bob, that we might just have different perspectives and sometimes it can take a while for them to change and sometimes they never do :(
    I am not suggesting that your perspective needs to or should. I acknowledge that everyone is entitled to their own view point and they might be divergent.
    I appreciate that you have tried to view it through my lens and are having difficulty doing that and may never accept it. That is ok too.


    I am happy to go back to/revisit your earlier post and then come back with some fresh comments.

    I will also see what else I can find for you on Ramsay's change of heart re PVFS not being the same as ME.
     
  2. insearchof

    insearchof Senior Member

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    Hi Boule

    I am sure you're right - that those who participated in writing the consensus would like to find out they have big egos. :)

    Perhaps that was being a little unfair (reference to ''big''), but consensus is by its very nature, designed to accord concessions to ego's :)

    The reason for the exercise was, as I recall it (from a lecture given by Curuthers? the lead author of the paper) was to pull together the extensive body of research - so that it could be readily applied in a clinical setting to assist physicans with diagnosis. The CDC or other definitions were formulated for the purposes of research. The focus of the CCC was clinical practice.

    I personally believe that medicine is not the only discipline that has grey areas :)
     
  3. insearchof

    insearchof Senior Member

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    I agree Bob, that peer review - especially by those knowledgeable on ME - would be benefical and I am sure, welcome by Hyde.
     
  4. insearchof

    insearchof Senior Member

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    Boule, if you are going to conduct a poll, you might want to also include who had a positive finding on other CNS tools ie Different types of SPECT,Xenon SPECT (brand of SPECT Hyde prefers) PET, QEEG, EEG, MRI, MRA, MRI Spectography, Neurospch testing. These are all mentioned in Hydes book on Missed Diagnoses as tools he uses to find evidence of CNS damage and dysfunction.
     
  5. insearchof

    insearchof Senior Member

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    Consider trying again Boule. Things may have opened up in his schedule since the last time you contacted him.
     
  6. insearchof

    insearchof Senior Member

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    In the late 1980s Ramsay wrote a book on ME and when he went to have it published, his publishers pressured him into changing the title to PVFS. He resisted for a period, but they insisted on this in the title, because they said this term was known on both sides of the Atlantic. In the end he relented - but he later stated he regretted such and thereafter worked very hard to refute the assertion that ME was PVFS.
     
  7. Boule de feu

    Boule de feu Senior Member

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    Done! I just did. :)
    I wouldn't mind the Skype interview if he can't give me anything else.
     
  8. insearchof

    insearchof Senior Member

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    Oh -I will cross my fingers for you.

    If he is unavailable, dont forget to ask him if he can refer you on to someone knowledgeable on ME.
     
  9. rlc

    rlc Senior Member

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    Hi Floydguy RE, I could certainly be wrong but I think there is a differentiation between muscular fatigue and the can't get out of bed fatigue described in CFS.

    You are correct!!!!! The Muscle fatigue of ME is one of its defining features. And you dont find this type of muscle fatigue in any of the CFS definitions including the CCC None of them describe ME!!!

    The Fatigue in the CFS definitions is not Muscular fatigue of a unique nature that can last for over five days after trivial exertion. The muscle fatigue found in the CCC and other CFS definitions is just the plain ordinary fatigue found in a large number of illnesses!

    Medically a defining feature is something that is so different and unique, that it helps Doctors to separate one disease from another!

    The muscle fatigue and pain in ME is so important it made it into the diseases name!!!
    Myalgic as in Myalgia =muscle pain and fatigue, Encephalomyelitis = inflammation of the brain and central nervous system.

    The Central nervous system for anyone that doesnt know, are the group of nerves that run from the brain and down the spine and then into the body, they carry the messages from the brain to the body and vice versa from the body to the brain, this is what causes the cascade of other symptoms once this is damaged.

    Although a lot of people think that CFS is just an American name for ME its not, the term that was used the most in the US was Epidemic Neuromyasthenia, Dr Henderson who used to work for the CDC in Atlanta and Dr Shelokov came up with this name in the 1950s after investigating US epidemics. Dr Henderson describes it thus It was a hybrid of the terms "neurasthenia" and "myasthenia," implying brain and muscle involvement and obviously the epidemic part in the name refers to the fact it causes epidemics and is therefore infectious!

    Havent the CDC kept quiet about that little piece of information!

    Because the writers of the CCC havent done their research they completely overlooked the epidemic side of ME, because it happens in epidemics it has to be highly contagious and have a short incubation period, so start looking for viruses that fit that picture!

    Not go looking for random anomalies in the immune system, as Ramsey who was one of the doctors at the Royal free hospital outbreak put it how can 200 nurses at the Royal Free Hospital have developed abnormalities of their immune system within three months.!!!

    So when it comes to diagnosing ME, you have a sudden onset which is generally described as being either as mild as a flu like infection, up to a sever gastrological or lung infection, so this immediately rules out, gradual onset illnesses, then you have the Encephalomyelitis, there are a lot of disease that cause encephalomyelitis but this narrows down the field even more, then you come to the profound muscle fatigue and youve narrowed it down to ME with just a few other things to rule out e.g, Bornholm disease.

    Now nobody is saying that ME sufferers dont experience fatigue, everybody who is sick experiences fatigue, obviously if you have lots of energy you are well, unless you have to much energy then your suffering from something like a Bi polar disorder.

    What people are saying is that fatigue is not a DEFINING symptom of ME, but it is of whats being called CFS or ME/CFS.

    ME suffers often get POTS but it is not a defining symptom because a large number of diseases cause POTS as well.

    So you can see that if someone invented a new disease and called it POTS chronic fatigue disease, youd go, good one dim wit youve just invented a definition that describes about 50 diseases, seeing as youre so thick have you ever considered getting a job at the CDC?

    Its all about DEFINING symptoms that differentiate one disease from another!!!!
    When it comes to the CCC its defining symptoms are the four that it quite clearly states that you have to have e.g.

    A patient with ME/CFS will meet the criteria for

    1 fatigue,
    2 post-exertional malaise and/or fatigue,
    3 sleep dysfunction,
    4 pain.

    If you dont have all of those four of these you dont qualify no matter which of the other long lists of symptoms you have!!

    So when you look at it, I dont think too many people have a problem with the fact that the fatigue as they describe it

    1 The patient must have a significant degree of new onset,
    unexplained, persistent, or recurrent physical and mental fatigue
    that substantially reduces activity level.

    Is found in a large number of conditions, diagnosispro software list chronic fatigue as being caused by 299 illnesses http://en.diagnosispro.com/differen...ific-agent-chronic-fatigue/25271-154-170.html

    So Fatigue isnt a DEFINING symptom of anything!

    Then theres the category Sleep dysfunction described as

    3 Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or
    rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.
    This is also found in a large number of conditions and millions of people who arent sick and by itself will cause fatigue

    So again sleep isnt a DEFINING symptom of anything!

    Then theres the category 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

    You will notice that it just says myalgia and that it can be experienced in the muscles and joints. It does not say anything about the unique muscle fatigue and pain that is found in ME, which can last for over five days after trivial exertion.

    The Myalgia that they describe is common place in 188 different illnesses link http://en.diagnosispro.com/differen...rs-specific-agent-myalgias/42070-154-170.html and headache is found in 612 different illnesses http://en.diagnosispro.com/differen...rs-specific-agent-headache/24520-154-170.html

    So again pain isnt a DEFINING symptom of anything!

    Now Post-Exertional Malaise and/or Fatigue is a problematic area, which the failure of people to know the facts about, is locking a lot of people into a life time of suffering and possible early death, To start with please note it says and/or fatigue so you can have either PEM or PEF or a combination of.

    They describe it as

    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.

    Now the reason I cant put the term PEM into diagnostic software to prove this point is because PEM is not a recognized medical term!!

    Post exertional malaise, is an term that was invented by every bodies favourite people the members of the Wessely School and the CDC!!!! And makes its first appearance in the CFS definitions in the 1994 CDC fukuda definition written by the Wessely school and the CDC.
    http://www.cdc.gov/cfs/general/case_definition/complete.html

    They describe it thus

    post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.

    As I pointed out in an earlier post unfortunately the writers of the CCC have relied heavily on the work of the Wessely school and CDC in writing their document, and it is from them that they have acquired the term post-exertional malaise

    One of the defining symptoms of ME is not a relapse lasting 24 hours, but a common finding that exertion can cause relapses lasting months, years and sometimes for life with dramatically worse symptoms and a strong risk of death through cardiac failure.

    This was found in the past to be the most important factor in insuring a recovery after initial infection, if the patients could be confined to bed for often several months after the initial onset had subsided then they often could make a full recovery, if they didnt rest the condition would become lifelong.

    Such a tragedy that this piece of information has been lost, if doctors knew it and knew how to quickly identify ME then so many people could be saved from a life of suffering.

    The closest to what is being described as PEM I can find in the diagnostic software is Decreased exercise tolerance/effort fatigue which has 94 possible causes http://en.diagnosispro.com/differen...rcise-tolerance-effort-fatigue/25296-154.html

    And this is the point Im trying to make. The thing is that there is nothing unique to ME/CFS or CFS, about having a pathologically slow recovery period. usually 24 hours or longer, brought on by exertion, no matter which of the group of symptoms mention in the CCC under Post exertional Malaise/fatigue someone has.

    What they describe in the CCC is common place in a large amount of chronic illnesses, a lot of which get misdiagnosed as ME/CFS because of this confusion.

    There is nothing unique to ME/CFS about it at all and no reputable medical source has ever said that it is, its just being mentioned as a symptom along with all the others, somewhere along the line someone has taken it out of context, and said that it is unique to ME/CFS and/or CFS and then this falsehood has spread across the internet. With the unfortunate consequence that people believe it and take it as confirmation that the can only possibly have ME/CFS and dont look for other missed illnesses.
    So if people can realise this, then they can see that the CCC has no DEFINING symptoms!!!!!!!!!!!!

    Which means qualifying for a diagnosis of ME/CFS using the CCC, actually is as meaningless as qualifying for a diagnosis of CFS using the CDC or Wessely school criteria, a CCC ME/CFS diagnosis is a waste basket diagnosis and the reality is you could have anyone of a large number of illnesses, and to make matters worse because they have included some of the symptoms of ME like POTS, some of the diseases that are being missed and misdiagnosed as ME/CFS by using the CCC are very serious and life threatening!!!!!!!!!!!!!!

    If people can look at ME/CFS as defined by the CCC and see that it doesnt come close to defining ME you can then take the ME out of the name and you end up with /CFS, If people can then realise that CFS is a made up bogus disease invented by the CDC to cover up ME , then you can also take away the CFS from the name and you end up with / this / represents millions of misdiagnosed people, which If they realise this then they can start to seek a real diagnosis.

    Disease are made by nature, ME is still the same disease it always has been, and is still stalking the human population and ruining peoples lives. It has not miraculously disappeared because the CDC lied in 1988 and said it had, and CFS didnt miraculously appear because the CDC lied and said it had, ME/CFS didnt miraculously appear because the writers of the CCC didnt to their research and got their facts wrong and said it did!!!!

    There is only ME and a large collection of other well known diseases that can often be successfully treated!!!!!!!!

    There is no disease called CFS and there is no disease called ME/CFS, they are made up by man, not made by nature!!!!

    As I said in the earlier post, the CCC is very badly researched and relies heavily on information from the Wessely School and the CDC, There are no references to any of the research pre 1988 in this document.

    What shows how badly they understood the situation is this statement at the start of the CCC

    Recent years have brought growing recognition of the need for clinical criteria for myalgic encephalomyelitis (ME), which is also called chronic fatigue syndrome (CFS)

    Anybody researching anything is supposed to do an achieve search to find all relevant publications, The last Major publication on ME that I am aware of was published in 1990 and contains a lot of information on Enteroviruses that they had been doing for several years and contains a detailed explanation of the symptoms of ME and how to tell it from PVFS. This publication can be found here

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/pdf/postmedj00163-0031.pdf

    Another less well known publication on ME is this one published in 2002

    http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf

    The CCC was published in 2003

    So the CCC achieve search didnt even go back 13 years, and in the case of the second article one year!!! To make matters worse the old ME literature is mentioned in the CDC investigation at Lake Tahoe and in the Oxford Criteria references which the CCC has in its references, which they should of read! (Yes the CDC and the Wessely School have always known exactly what ME is and have read the research on it!!!!!!!!!!!!!!!)

    Since 1988 ME and CFS is the only area in medicine that people can get away with putting out information based on not doing their research and making things up as they go along. In any other field of medicine if someone put out a definition of a disease, and ignored over 50 years of a vast amount of research in doing so. They would be slaughtered by the rest of the medical profession, they would be a laughing stock, and have their reputations and carriers in tatters. I have a close family member who is a medical researcher I know how it works!

    As Mark correctly points out in a previous post in this tread if the Phoenix Rising site is to have ME in its name, then the old research needs to be read and understood.

    If the CCC wanted to put the name ME in their illness then they too should have read the research, and it is to my mind inexcusable and somewhat embarrassing that they didnt because their doctors and scientists who have accesses to the information in the Journals.

    The CCC is exactly what all the other CFS definitions are.

    A large collection of symptoms that are commonly found in a vast number of different illnesses.

    Instructions to only do a very minimal amount of testing to rule out other disease, which you would be lucky to rule out ten percent of the possible other illnesses using the test recommended, and the amount of testing required for someone to get one of these diagnoses is often less than a sick dog would get when taken to the vets!

    And instructions not to waste extra money, doing additional testing.

    The CCC is just a combination of some of the symptoms of ME and the symptoms of a large number of diseases that get misdiagnosed as CFS.

    I have no doubt that the writers of the CCC had good intentions, but they have failed to do their research and have not understood what ME is and always has been!

    All the best
     
  10. Boule de feu

    Boule de feu Senior Member

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    Good idea. I won't forget.
     
  11. Tulip

    Tulip Guest

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    M.E. used to be known as epidemic neuromyaesthenia in the USA.
     
  12. Boule de feu

    Boule de feu Senior Member

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    If ME is caused by ENTEROVIRUSES.
    If ENTEROVIRUSES are very contagious.
    If I have all of Dr Chias' symptoms.
    How come nobody around me has ME?
    My whole family has been coughing for weeks now
    but they can go about their lives.
     
  13. insearchof

    insearchof Senior Member

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    Enteroviruses are regarded as very common. For 95% of the population they are not an issue, however they cause devestating illnesses in the remaining 5% . These were the general observations from the polio epidemics.

    The simple answer is susceptibility. Some people are more susceptible to going down under an enteroviral infection than others.

    I have read that a few factors in combination are thought to make some of us more susceptible to enteroviral infections and these include: hormones and a prior immune assault (ie by another illness, bacterial or viral, or a vaccination) together with increase in phsysical stress/activity, pregancy,diet and nutritional deficiencies.

    I guess when some things line up together and an enterovirus is in circulation - you are more susceptible to going down and not getting back up from an enteroviral infection.
     
  14. Boule de feu

    Boule de feu Senior Member

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    Thank you ISO for your response.
     
  15. insearchof

    insearchof Senior Member

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    Hi Bob


    I have now revisited your post Bob. Sorry for the brief delay in doing so.

    Firstly, let me take the opportunity to say, that I am not discounting the importance or the significance of muscle and muscle fatigue as a cardinal feature (ie significant, important, essential or core ) for diagnosis according to Ramsay and others. It is an important feature of the disease and I think Ramsay does make this point.

    However, I do not believe it is the primary or defining characteristic or that Ramsay intended it to be so, for the following reasons:

    1. The remaining literature point to CNS damage as the key or predominant feature

    2. The 1986 article was written during a time of PVFS evolution

    3. The 1986 article and subsequent articles circa 1988, together with Ramsays comments indicate that if there was emphasis placed on muscle/muscle fatigue aspect of the illness, it was simply to demonstrate that this aspect of the illness could be used to differentiate it (together with some others) from PVFS and that ME was not PVFS.

    That was very important to Ramsay, because the trend developed (and exists to this day) to casually use the terms as though they were synonymous. Ramsay did not believe they were. See: http://web.onetel.com/~kickback/THE CLINICAL IDENTITY OF ME.html

    Unless I am mistaken the material you cite is taken from another paper or rather a transcript of a talk Ramsay gave, I believe.

    The transcript opens with a statement from Ramsay that he is fortunate that the second edition of his monograph gave him the opportunity to demonstrate that the clinical features of Myalgic Encephalomyelitis provide a sharp contrast to all other forms of post viral fatigue syndrome

    See here: http://myalgic-encephalomyelitis.com/Melvin-Ramsay.html#BAFFL

    The full unedited version of that comment is here:
    http://web.onetel.com/~kickback/THE CLINICAL IDENTITY OF ME.html

    And this was, the intent and focus of his paper from which you quote Bob. For what its worth, I believe that this paper and subsequent ones, must be considered through that lens.

    In those papers Ramsay refers to three categories upon which a clinical diagnosis of ME rests.

    The first category he makes mention of is, is musculoskeletal. Why? Because it was this characteristic of the disease that he was advocating could be used by a physician in clinical setting to help him discern ME from PVFS.

    To make the point, he takes these three categories and applies them to post influenza debility as a form of post viral fatigue state.

    However, there are some features of ME that might also be seen in other PVFS. I believe that Ramsay saw the clinical presentation of muscle fatigability as an easy way for a clinician to distinguish ME from PVFS.

    So when he states that a diagnosis of ME should not be made without indications of muscle fatigability, I beleive he meant for the purposes of distinguishing it from other PVFS and useful in that context -not that it was the key characteristic of ME used to classify and distinguish it from other medical diseases.

    A defining and important element of the disease all the same, (hence the term Myalgic) and very useful one to note when ruling out PVFS but it is not the main characteristic feature, IMO. If it were, ME would not be classified under G93.3 at the chapter that lists diseases of the central nervous system

    PVFS is also listed at G93.3 signifying they can also produce CNS damage/dysfunction. Hence Ramsays emphasis on muscle fatigue only to help distinguish it from PVFS that might also have features of CNS damage/dysfunction and if there is no useful evidence of viral cause.

    The 1990 Ramsay/Dowsett research study again attempted to play a role in distinguishing ME from PVFS. Again, Muscle / Muscle fatigue as described by Ramsay was one such feature of the illness.

    Dowsett who worked with Ramsay, and who is a well known researcher, past adviser to the CMO (UK) on ME, adviser to the 25% ME group and advocate, also supports this notion with the summation of her view of ME in light of Ramsays work.

    In an article entitled Redefinitions of ME CFS A 20th Century Phenomenon she defines the Ramsay definition in the following manner and sequence:


    1. It is initiated by a virus commonly respiratory or gastrointestinal. The next phase is more dramatic with neurological, cardiac or endocrine disability.

    2. She then lists the characteristic features as follows and in the following order:

    (a) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

    (b) Neurological disturbance..a unique neuro endocrine profiledysfunction of the autonomic and sensory nervous system, cognitive problems.

    (c) Musculo-skeletal dysfunction in a proportion of patients

    (d) A characteristically chronic relapsing course


    To emphasise the point, that muscle fatigue is not the key defining criteria of the illness, but CNS damage/dysfunction is, she stated (in the same article) comparing the Ramsay and historical understanding of ME to CFS that the major mistake of the CFS definitions was to overlook the distinguishing ''encephalitic feature of ME and to elevate fatigue ....... to unreal diagnostic importance among the symptoms.
    The point being, that the Ramsay school see the main or distinguishing feature of the illness as CNS damage/encephalitic feature, not the musculoskeletal element.


    That summary, is consistent with how I have always understood and approached ME.

    I think that is about as much as I can say or add on this particular point.

    I hope that was useful somewhat, even if you do not share my perspective.
     
  16. Bob

    Bob

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    Hi insearchof,

    Thanks very much for responding to my earlier post and engaging with this subject...
    I really appreciate you taking the time to look at the literature again.

    I think that we seem to be almost on the same page now, in terms of the literature we are reading and interpreting... And our interpretations of the literature seem to be converging, to a degree...

    I believe that the two quotes that I gave, which I said were excerpts from Ramsay's definitions of ME, were indeed from Ramsay's definitions of ME... Not from an article, or a talk, or another paper. Although, I have found it difficult to pin down his work, so I may have made a mistake.
    Here are some of my sources for the Ramsay definitions:
    http://www.cfids-me.org/ramsay86.html
    http://www.meactionuk.org.uk/definition.html
    http://www.cfs-news.org/me.htm

    But here is an entirely different definition, that doesn't include 'fatigue', that is also supposed to be the 1986 Ramsay definition, so it is a bit confusing:
    http://www.name-us.org/MECFSExplainPages/HandoutForPatientsDoctors.pdf

    Actually, looking at the Hummingbird website, there is a lot of Ramsay and Dowsett literature that, at first reading, seems to be contradictory:
    http://www.hfme.org/wramsay.htm

    For example, a 1992 Dowsett/Ramsay (even though Ramsay was dead in 1992) paper refers to fatigue:
    Whereas the Dowsett literature that you have quoted does not include fatigue...
    And here is another Dowsett decription which has replaced 'fatigue' with 'exhaustion', which from my personal point of view is more appropriate:

    At first glance, there seem to be similar irregularities in Ramsay's literature as well.


    What I would like to do now is to look at the literature that was published between 1990 and the present day Hyde literature. Have you got any idea where I could look for this, insearchof? I'll look through the Hummingbird website for now.


    As I have acknowledged, Hyde does not use the word 'fatigue' in the Nightingale definition of ME, but he seems to use 'loss of strength' (i.e. weakness) instead.
    For political reasons, and for diagnostic purposes, I agree that this is useful, as it moves us away from the dreaded fatigue word, and towards more useful definitions.

    There is a difference, however, between what is a useful diagnostic feature and the subjective experience of patients. For example, fatigue might not be a useful diagnostic criteria because so many illnesses feature fatigue, but patients do subjectively experience fatigue, or exhaustion, or malaise, whatever we want to call it, or something similar.

    In terms of what patients with ME experience subjectively, it does seem clear, reading Ramsay, that fatigue, or weakness, or malaise, or whatever we want to call it, is indeed a feature of historic ME.

    The reason that this has become an issue on this thread, is not because people are questioning whether it is wise to use fatigue as a defining diagnostic criteria, but because people recognise fatigue, or exhaustion, or similar, as being part of their own illness.

    The way ME was being presented in this thread seemed to be that ME is an extremely elusive, novel, exclusive disease, that only a select few from our community can be diagnosed with. And then when we were told that fatigue isn't a feature of 'real ME', it confused people because many of us assume that we have 'real ME'. This left people rather bewildered, because we were given the impression that 'historic ME' was something other than what we are familiar with, and that ME is a completely different disease to what we had been led to believe.

    Most of us can't go and see Byron Hyde for a SPECT scan diagnosis, so we can't get tested for 'real ME', but we know that we don't have idiopathic fatigue, and we have all sorts of physical symptoms, and believe that we have some sort of immune system irregularity, or similar.

    So if we have a physical disease which is identical to what we recognise as physical ME, but then it turns out that ME is some other elusive disease, then where does that leave us? Very confused!

    Very few of us will ever get a SPECT scan, or see Byron Hyde for a diagnosis, so we have to have some other benchmark to test our illness against.

    The disease that Ramsay describes is very familiar to me. The disease that the CCC describes is very familiar to me. But the disease that Hyde describes, is not something that I can test myself against. It involves specialised medicine and only specialist physicians can test me for an enterovirus and take and interpret SPECT scans etc.

    Out of interest, I will try to read more of Byron's work to see if his wider descriptions of the nature of ME (other than just in his Nightingale definition) fit in with my own experiences of my illness.

    But I am satisfied, from reading the Ramsay literature that I do have historical ME, and that historical ME is indeed the disease that many of us with a CFS/ME diagnosis are familiar with.
     
  17. Boule de feu

    Boule de feu Senior Member

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    A question that has been bothering me for a little while...

    When my GP realized that I was severely ill, he would measure the amount of muscle I had lost during the week (I was seeing him every week at this point).
    He mentioned that I was having considerable "muscle loss" or "muscle waste" (I can't remember which term he used) and he did not like that. Would you say it is related to the muscle fatigue we are talking about or it has nothing to do with this?
     
  18. Tulip

    Tulip Guest

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    Boule de feu, I have had the same problem with my muscles the entire time I have been sick, in fact it has been quite difficult to build muscle up even with weights (when my health was far better than now). But the muscle fatigue is a different thing, that just means the muscles get exhausted, but are not wasting away.
     
  19. Tulip

    Tulip Guest

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    Bob,

    I'll say it again. The CCC is a "skinned cat version" trying to describe M.E., but unfortunately still acts as an umbrella definition for more than just M.E., that is the problem.

    No, most people are not going to able to get a SPECT scan, but a good knowledgable doctor can diagnose true M.E., they certainly used to be able to even into the early 1990's. We need to educate doctors to get them back to being able to do that.
     
  20. Boule de feu

    Boule de feu Senior Member

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    Does the wasting automatically lead to muscle fatigue?
    Is one related to the other or not at all?

    And does muscle fatigue causes pain in the legs?
     

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