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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. rlc

    rlc Senior Member

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    Hi Bob, let me know when youve got the hang of wiki, and Ill organize the links. Regards the WHO Classifications its explained here better than I can

    http://www.hfme.org/thewhoandme.htm

    The CDC is quite emphatic about this point, in just about the only statement its ever made on the subject

    "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

    You can find this statement at the end of this page

    http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    As Insearchof points out its way past time for legal action!!!! Their own statement on their web site acknowledges that it occurs in outbreaks and is therefore infectious, and yet since 1988 they have made no effort to even identify people with it, let alone look for causes and cures. Their totally in breach of their own mandate, which is to do exactly as their name implies, The Centre For Disease Control And Prevention!!!!!!!

    All the Best
  2. rlc

    rlc Senior Member

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    Hi Bob, I thiught you might find this interesting, due to the utter neglect of ME, it is recognized by its American name Epidemic Neuromyasthenia and one of its other names Iceland disease under ICD9 049.8 as a, other specified non-arthropod-borne viral diseases of central nervous system

    http://eicd9.com/2010/index.php?action=alphaletter&letter=Ib

    All the best
  3. insearchof

    insearchof Senior Member

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    Hi Tania

    Just wanted to follow up on the issue of vasculitis in ME. I am yet to sit down and look at some of the old historic epidemic literature, but I did find some predominantly more modern references listed that you or others might find useful here:http://www.meactionuk.org.uk/VASCULAR_PROBLEMS_IN_CFS.htm.

    These references are consistent with what I stated previously, that vasculitis is a known issue in ME and the principle cause of hypo perfusion in the brain due to inflammation.

    On this note, the following reference directly implicates enteroviruses with inflammatory disease:
    Enterovirus infections and systemic clinical manifestations with prolonged inflammatory syndrome: association with a persistence of specific IgM antibodies. Cathebras, P. et al. Rev Med Interne: 1993:14:10:961


    Also of interest is the comment by Dowsett to vasculitic "skin lesions". Is this a reference to bruises or something else? If bruising, were they painful like Rhyll described or not, as some skin discoloration might not be bruising but a non painful lesion, similar to Kaposis sarcoma seen in AIDS. It's hard to know, because that reference attributed to Dowsett was pulled from a table of symptoms from a research paper, ( "Myalgic Encephalomyelitis, A Persistent Enteroviral Infection" Dowsett, E; Ramsay, A; McCartney, R and Bell, E in 1990) where this was mentioned in passing and not discussed.

    The link I provided makes scant reference to the historic literature, just as Rhyll mentioned. Whether there is more to be found will require further reading.

    However, I still believe that IVN is not ME for the reasons previously expressed.
  4. Bob

    Bob

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    Thanks for the links rlc... I'll read them later.

    I understand the wiki now... So feel free to post any links...

    It might take me a while to start getting them organised though.
  5. insearchof

    insearchof Senior Member

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    Hi Bob,

    The ICDs can be a challenge to understand. Sites today, like Susie Chapmans, makes this much easier. It was not so, when I studied them.

    The ICDs are found in 3 volumes and they have their own unique rules, including those to aid in their interpretation and understanding. Essentially, the ICDs are volumes that classify diseases using a taxonomical approach.

    Some principles I found useful in interpreting and understanding the ICDs were these:

    1. Disease that are given a classification appear in the tabular body.

    2. The tabular body is the primary coding tool

    3. Space in the tabular body is regarded as premium and used very judiciously.
    The Index is occasionally used to compensate here

    4. Classification is about categorisation through distinction, with a view to ensure that they are mutually exclusive. For example, the same illness is not permitted to be classified under more than one rubric in the tabular body

    5. A term in the index represent any one of the following possibilities:

    - A diagnostic term currently in vogue or
    - A term used by physicians but that does not fit into the ICD scheme.
    - A synonym
    - An imprecise and undesirable term or a rubric for ill defined conditions

    See: Introduction to ICD 10 Vol 3 2nd Ed.

    From my reading and understanding of matters specific to the index, the index does not operate in the same way as we would genrally understand an index to.

    Meaning, CFS in the ICD index does not necessaryily mean that it is a direct reference to and to be taken as meaning that it is the same as, ME or PVFS. In fact, for terms inserted in the index that are there because they are regarded as an'' imprecise ''or ''undesirable term'' for example, the WHO goes on to say that their insertion in the index ''should not be taken as approval of its use''. The over all impression you are left with, is that the WHO places popular, undersirable or incorrect terms in the index to generally assist users of the ICDs to find ''associated'' reference material. However, ''associated'' does not mean the ''same'' as. Therefore, given the appearance of CFS in 1988 and because some might have referred to CFS as ME in the period between 1988-1990 ( the ICD 10 being settled in 1990) the WHO might have taken the view that this was not correct, (ie it was an incorrect term for ME or PVFS) but put CFS in the index in order to assist those who associated CFS with ME. Remeber, it was during this two year period when the terms were beginning to be erroneously used in an interchangable manner in some of the literature).

    I should state, that there has been no statement issued by the WHO on the significance of CFS being placed in the index and its relationship to ME and PVFS at 93.3 to date, but it is hoped that this will change with the advent of ICD 11. I might say though, that the view of WHO in 1990 on this matter, might not be the view of the WHO today -20 years on. So any explanation that the WHO might subsequently provide, could not be applied retrospectively to ICD 10, in my view.

    ICDs can be adopted by member countries and come into operations at different times.

    As mentioned, ICD 10 was completed in or around 1990 just 2 years after the introduction of the CDC definition of CFS, which may explain one of the reasons why it appeared in the index( ie: another reason for its inclusion in the index could be that it represented a diagnostic term currently in vogue but was, at the time regarded as a term that did not fit into the ICD scheme).

    ME is a term that first appeared at G93.3 in 1969.

    The term PVFS appeared in the 1980s and it made its first appearance in ICD 10.

    As you know, I have made previous references to Ramsay and his attempts to distinguish ME from PVFS or states circa 1988-1990.

    ICD 10 was settled by WHO in 1990 and adopted by member countries (except the USA) in 1994.

    As mentioned the ICDs are based on a taxonomic approach.

    Taxonomic principles involve supertype and subtypes or the analogy often used, is that of parent and child relationship approaches to classification. With a sub type, it is similar to the parent but not the same. There are always features or additional properties or limitations that distinguish the child from the parent so to speak.

    Looking at G93.3 it would appear at first instance that what you say is true: that WHO defines ME and PVFS as the same.

    However the first point is, that they do not define anything. They categorise and classify illnesses using taxonomic principles.

    I believe that ME and PVFS have both been inserted into the tabular body of the ICDs, because WHO (applying their taxomonic approach and principles) see them as being distinctive but belonging to the same supertype

    I believe this to be true on the basis of:

    * the historic dates that each of these illnesses arose and their appearances in the ICD
    * historic supporting litrature that attempts to distinguish PVFS from ME
    * statements issued by the WHO on G93.3 and taxonomic principles with regard to it but most importantly
    * the interpretation of G93.3 on the basis of the taxonomic principles and distinctive rules used for interpreting ICDs as set out in them by the WHO in particular the following.

    Given that :

    (a) space in the tabular is at a premium and
    (b) the strict taxonomic principles applied to ensure mutual exclusivity between diseases (whether applying to rubrics or generally so) ......

    I believe that WHO would not have used a duplicate term in the tabular at G93.3 for ME.

    Further, PVFS cannot be a synonym used for ME, as synonyms (if used) are given their place in the index.

    On my general reading and understanding, I view PVFS as another illness in addition to ME, and given its own distinct place at G93.
  6. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hi, InSearchOf,

    I thought I'd redirect this question to you:

    May I ask, were there people with "Historical ME" that suffered from severe sleep dysfunction and Insomnia? (not just initially, but on going?)

    I feel that a viral assault on my CNS has altered my ability regulate sleep totally. It is very distressing. At my very worst I am still unable usually to fall asleep naturally. I can be in a state that lies between awake-asleep, my eyes close, just stay like that for hours. Sometimes I will feel myself drifting off only to be jolted awake.

    I have had a sleep study, no apnea or RLS.

    Thanks, any info about this would be appreciated! Obviously, I'm asking for personal resaons :)
  7. Bob

    Bob

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    hi insearchof...
    thanks so much for all of that info re the ICD...
    it's really appreciated,
    Bob
  8. Boule de feu

    Boule de feu Senior Member

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    Thank you for this link, ISO.
    I have episodes of Raynaud if i'm exposed to the cold but my main problem is a very peculiar inflammatory disorder (it happens mostly in the evenings when I get off my feet). My GP believes it's erythromelalgia. After reading this, I am convinced that it is also a part of the puzzle in ME.
  9. rlc

    rlc Senior Member

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    Hi TheMoonIsBlue, Sleep dysfunction is a common finding in ME, this is taken directly from the Nightingale definition http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    Testable Major Sleep Dysfunction: This can include all forms of sleep dysfunctions. All or any of the following may be present: (a) impaired sleep efficiency, (b) significant fragmented sleep architecture, (c) movement arousals, particularly if there is an associated pain syndrome, (d) absence or significant decrease of type 3 and 4 sleep, (e) abnormal REM sleep pattern (f) changes in daytime alertness and (g) sleep reversals.

    Ive read about it in quite a lot of the old literature (sorry to tired to track down links at the moment, lack of sleep but not ME) but in answer to your question, it is a common finding in ME.

    Hope this helps!!!

    All the best
  10. insearchof

    insearchof Senior Member

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    Hi Bob

    Glad to help.


    Hi Moon is Blue


    I can confirm what rlc has posted on sleep dysfunction, the Moon is Blue.

    Off the top of my head, I believe the sleep dysfunction is common at the outset and can be, through out the duration of the illness.

    ME is essentially an enteroviral infection of the brain and spinal cord, which is why it is called Myalgic Encephalomyelitis (inflammation of the brain and spinal cord)

    It is very similar in nature to polio, but for the purposes of our discussion -with one important distinction. This distinction may also explain the fluctuating nature of ME symptoms.

    What we know about this aspect of the illness came from those who studied the early ME epidemics and from this we know that ME is a disease of the Central Nervous System (CNS) which affects:

    *spinal cord (anterior horn cells = motor neurons that affect muscles) and
    *ganglia dysfunction (can affect nerves of sensory and autonomic nervous system and
    *brain dysfunction

    Essentially, the virus attacks the command and control centers in the brain that regulate all other systems in the body - including sleep.

    From the work of Alberto Marinacci (who studied those in the first ME epidemic at the County General Hospital 1934) it was noted that like polio, anterior cell horn injuries (part of the grey matter of the spinal cord that affects muscles) were noted in these patients. However in polio patients these cells were not injured but destroyed. Paralytic polio presented (in most cases) as an irreversible injury to these anterior horn cells. Marinacci's work showed this was not the case with ME -that some of these cells recovered after viral attack, but he also noted that they were unstable and could remain so.

    So it seems that whilst the polio viruses 1-3 destroyed cells -with an irreversible injury, to these cells responsible for muscle activation, this was not the case with ME. These cells could recover - but were unstable and likely to break down further. Physical exertion and stress, were (if I recall) reported to have the effect of causing a further break down of these cells. Hence the fluctuating symptoms associated with PEM.

    Of course these findings were on the work of Marinacci with regard to the anterior horn cells. Whether this finding can be extended to the operation of the virus to other cells in the brain, I am not sure. However, Hyde states sadly, that he does not think Marinacci's work was ever expanded upon. However, Marinacci's findings in relation to how the virus affected anterior horn cells, would explain the continuing fluctation of other symptoms reported in ME. ie: that the enterovirus in ME do not kill cells in the brain that affect the various systems, but disable them and makes these cells (and therefore bodily functions -including sleep) unstable.

    If this is so, then the instability of cells in the brain affected by enteroviral infection and the extent of the injury to these cells (initially and the degree to which they remain unstable therafter) would undoubtedly play a role in the extent, duration and or fluctation of symptoms, including those sleep dysfunction. For if my recollection is correct, I believe that what I have read in the literature in the past, with regard to sleep, would supports this.

    However, I will go through the literature I have and pull out all the relevant material for you on sleep dysfunction.

    I have quite a bit of information on sleep dysfunction that I can pull from old literature (as it related to epidemics) and current literature circa up to 1992, which I think you will find quite interesting and helpful.


    ME Literature post 1990


    I think Bob asked a few posts back for literature on ME and research on ME from 1990.

    (Sorry Bob, I was putting together a response with a few items, but became distracted)

    The main point I wished to make there though is, literature and research on ME (as understood on this thread) for all intents and purposes stopped in 1992 on the day that Hydes text was published.

    It was also around this time circa 1990 that terms began to be intermingled ME with CFS, but perhaps with the exception of one or two early studies involving some of the Lake Tahoe cohorts, no pure ME cohorts were studied.

    Some of the CFS literature appears to describe a cohort that suggests that the patients studies may have been ME patients (with a CFS diagnosis) and the findings -seem congruent with what we know and understand about ME on this thread. However, that requires a good understanding of ME and very careful scrutiny of the papers.

    Even so, at the end of the day - these papers cannot really be relied on and or applied with any degree of assurance to ME patients, due to cohort selection criterias being based on CDC CFS or CCC definitions.

    The Moon Is Blue, the reference material I will provide to you will come from:

    *epidemic literature
    *ME literature post epidemics but up to 1992


    Hi Boule De Feu

    Boule De Feu, Hyde reports commonly seeing Raynauds phenomenon in patients.
  11. Bob

    Bob

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    Thank you.

    Yes, I'm having trouble knowing whether to categorise some papers under 'ME' or 'CFS' in the wiki.
    I'll keep what you've said in mind, about the selection criteria used for the papers.
    I'm not sure if some of the research by Holmes, that he carried out in an epidemic area, should be categorised under ME or CFS... I've put it under CFS, because it's Holmes and he invented the CDC CFS criteria.
  12. Boule de feu

    Boule de feu Senior Member

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    I'm pretty sure I've read about vivid or scary/violent dreams.

    Is it true for ME ?
  13. Boule de feu

    Boule de feu Senior Member

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    What about putting them under both ? If in doubt, you could add a note saying why it's there.
  14. Bob

    Bob

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    Thanks Boule,
    Yes, a note would be helpful, but I wanted to avoid writing notes and introductions if possible, at this stage because that will take a lot of brain power!
    I just wanted to get the info up there first... I might start adding intros later.
    But it's a good idea... I'll work on it.
    Bob
  15. Bob

    Bob

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    Can anyone point me towards any of Byron Hyde's research that's been published in a journal and peer reviewed, please?

    Thank you.
  16. Boule de feu

    Boule de feu Senior Member

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    I'm not sure that you will find anything on his work. It does not appear on his foundation website.

    There is one paper, however :
    http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf
    (You probably got a hold of this already - sorry, too tired to check)

    Your best bet would be his textbook encyclopedia and his new book:
    Missed diagnoses.

    Can't wait to see what others will find. ;-)
  17. Boule de feu

    Boule de feu Senior Member

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  18. insearchof

    insearchof Senior Member

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    I have a couple of others, a couple have been published in journals that I can provide links for, as well as another chpt of a book.....but need to get publishing details on later.

    Here are links to two articles:

    http://www.rivexpharma.com/pdf/Imunovir_study.pdf

    http://www.alasbimnjournal.cl/alasbimn/index.php?option=com_content&task=view&id=112&Itemid=94


    In the first study, Hyde was one of the researchers named. He provided the study cohort which states that these were CFS patients, some with fibromyalgia as well.

    This is provided just out of interest, but I would not refer to it as a study relevant to an ME cohort.

    I think you will find the content of the second more in line with some of the recent discussions on this thread. Enjoy!
  19. BEG

    BEG Senior Member

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    I deeply am sorry that I have not read all 400+ posts that answer the question, "Is it worth trying to explain to the public the differences between CFS and ME?"

    Could someone just take a few minutes to explain the difference to this 10 year PWC? I've reviewed Melvin Ramsay's definition and the Canadian Consensus Definition and I can't find the difference.

    I thank you sincerely.
  20. rlc

    rlc Senior Member

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    Hi Boule de Feu, yes that's very much correct about the scary/violent dreams, I've read about it a lot in the old ME litraure.

    All the best

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