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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. Boule de feu

    Boule de feu Senior Member

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    We can read on Dr. Chias' site:

    Enteroviruses are very contagious. They are typically spread by fecal-oral route (this only takes microscopic amounts and is why hand washing is important), and can also be spread by respiratory routes and from mother to infant in the peripartum period.
     
  2. Bob

    Bob

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    One of my biggest questions with regards to this subject is about symptoms changing over time...

    My symptoms often change, both in severity and the nature of them, and they are very different now to how they were in my first couple of years of illness.
    What would our status be, in terms of a Ramsay or Nightingale 'ME' diagnosis, if you once fitted the historical ME diagnostic criteria, but now you don't because the nature of your symptoms has changed? (I'm assuming that historical ME has symptoms that change over time, during the chronic course of the illness, but I can't quite remember if this is documented in the literature or not.)

    In the 2010 Invest in ME conference round-table discussion, Judy Mikovits, Annette Whittemore and Leonard Jason acknowledged that their patients' symptoms fluctuate significantly over time, and they said that they have to assess a patient's illness over its entire course so that if the symptoms were greater at the start of the illness, then they can take these initial symptoms into account to make a diagnosis, even if that diagnosis wouldn't be valid at a later stage in the illness. (I think it was these three who has this discussion, and maybe Cheney was there and agreed with this as well, but I can't quite remember.)
     
  3. insearchof

    insearchof Senior Member

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    Hi TheMoonIsBlue

    Thanks for clarifying that.

    I would like to know though what research has been done on this area, perhaps the Enteroviral Foundation USA might have some literature.

    I might revisit the papers that I have on this before commenting and come back to this interesting point and the questions raised.
     
  4. insearchof

    insearchof Senior Member

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    Hi Bob

    From my memory, fluctations in sysmptoms is not an issue, with symptoms being acknowledged to wax and waine in their severity, number and duration. I believe also that there would be an association between such and viral activation/load which also fluctates

    In terms of diagnosis, the difficulty is - as we know, that it might be many years before a patient comes close to getting anything close to an ME diagnosis.

    However, a diagnosis requires taking a through patient history. Onset of illness and symptoms present at such time and thereafter, are all relevant for this purpose.

    When Dr Hyde takes a patients medical history, he goes back to a patients birth, looking for clues. He also has the patient take an extensive medical history from as many of that patients living relatives as well.

    So yes, symptoms at the onset - irrespective of whether they are now present or the degree of severity, are relevant in considering a diagnosis.

    The sticking point might be however, the lack of objective evidence (produced by tests) given the flux of time.

    Having consulted someone knowledgeable on the matter, when this happens there are two approaches. They can either repeat the tests over a period of time, to catch the objective markers required to support symptoms seen and or reported by the patient or they can refuse the diagnosis. Most doctors will though repeat tests over a period of time where a patients history is consistent with a proposed diagnosis.

    From what I have read, Hyde will do this also but will not confirm the diagnosis without positive findings on test results.

    This is undeniably a problem, which would not be - if knowledge about historic ME was more widely known and embraced by physicians. The patient would be subjected to a number of ME specific tests which if undertaken at illness onset, should return positive results.
     
  5. Boule de feu

    Boule de feu Senior Member

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    Things are already too complicated with the different cohorts and now scientists will have to deal with time of infection to figure out how to diagnose ME... I'm afraid that we are not out of the woods!

    My symptoms have changed over the years.

    I took Dr. Chias' list and went through it to see what have changed over the years.

    The only symptom I don't have or never had on this list is NIGHT SWEATS.
    However, I had a period of perspiring profusely (armpits, face, hands) prior to the illness.
    Now, I get a period of severe sweating after I sleep during the day - it always follows the chills I get daily.

    The symptoms that have changed for me are:
    Loss of smell or taste - it comes and go. However, I do suffer from hyperosmia.
    Twitching in eyes and spasms. More severe at the beginning. Almost non-existent now.
    Severe facial and tongue tingling and numbness at the beginning. It comes back from time to time.
    One episode of extreme chest pain.
    Irregular heartbeat in the first years.
    My blood pressure was low. It's better now.
    Blurred vision comes and goes.
    I seldom get a rash but often i am very itchy - especially when I have inflammation.
    Borderline anemia. Goes up and down.

    It says seizures but does not mention acute and severe vertigo?
    This is what made me quit my job.
     
  6. insearchof

    insearchof Senior Member

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    There are no different patient co horts or sub groups in ME.

    Physicians are trained in taking patient histories and part of this requires enquries about infections, and illness onset. The only problem can sometimes be with the patients memory, as time moves on in reporting that history. However, sudden onset illness that triggers ME is never forgotten by patients.

    Given these two points, I disagree with the belief that it is complicated.
     
  7. floydguy

    floydguy Senior Member

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    The problem is that very few people have ME as defined by Hyde et al. I am probably closer to ME than CFS - most of my issues are neurological and immunological; fatigue is a minor concern in comparison and could be attributed to sleep apnea. But I don't fit the criteria of that either. I also have significant enterovirus infection. ME is easier to diagnose as it must be sudden onset. I may have had "sudden" onset but it went into remission for 15 years. The second time around it was a slow descent.
     
  8. insearchof

    insearchof Senior Member

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    Hi Flyodguy

    I am not sure that we can really know this Floydguy.

    Rlc posts some figures somewhere that suggest that your statement is correct. Hyde himself estimates the figure at 25% but that is on the basis of the patients of one extremely thorough physican, who although has seen many patients over his professional life, may not have seen as many as general physicans because of his preferred means of practice (which is very time consuming - he spends a whole day taking a history alone. He has a physicans check list that he uses for each patient, that is several pages long. He also spends additional time observing them and assisting them with tests).

    One of the key points which was the impetus of the start of this thread by Tuliip, was to highlight the fact that much of the knowledge on ME has be burried for a long time now and if we want to see changes, we need to raise awareness on these matters.

    We really do not know how many people have or might have ME today because of the fact that by 1988 ME began to fall off the radar of the common physican. See my thoughts on what may have happened at post 161 at the top of this page.

    From what we know on the very little data available, yes it would seem that very few people have ME as defined by the traditional ME literature. That is a problem as you say, from a purely political perspective in trying to turn this freighter around - a slow, but not impossible task.
     
  9. Boule de feu

    Boule de feu Senior Member

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    And this is where I disagree with you.

    There are subtypes in ME
    http://news.bbc.co.uk/2/hi/health/7378440.stm

    There is the Wessely gang who is studying the wrong ME crowd.

    There is the Pace study who also studied the wrong crowd.

    There are scientists who are studying different cohorts.

    And the doctors here don't have the time to sit with you to figure out if you had a sudden onset or not.
     
  10. Bob

    Bob

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    Insearchof is only referring to the historical official definitions of 'ME', not the current diagnostic criteria for the condition/s 'CFS' or 'CFS/ME', which we often casually refer to as 'ME'.

    As far as I remember Jonathan Kerr didn't use the historical 'ME' definitions but used more recent definitions for CFS and CFS/ME.

    So insearchof would agree that there are subsets of 'CFS' and 'CFS/ME' (which we often refer to as 'ME'), but not of 'ME' as defined by Ramsay or Nightingale.
     
  11. insearchof

    insearchof Senior Member

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    Hi Mark

    Sorry for the very late reply but this thread is fast and I am slow.

    My understanding that the Nightingale document represents a summary of common findings in historical ME. A comparative analysis of historical ME researchers work on how they see ME, assessed against Hydes work in the Nightingagle document seems to be what you might be suggesting here. That would, I suggest be a good idea for an independent thread in a dedicated ME part of this forum.

    Crudely speaking yes. The finer points between the two documents has now been kindly posted by Rlc.

    I agree with these views and it is also my understanding that it was and remains the premise that, a scientific revolution would required extraordinarily strong evidence to prove an existing theory false.

    I agreed with this and as a result was formulting a post on the distinctions but rLc has rendered that exercise redundant with an excellent and very thorough post at #159



    Dr Hyde at some point (pre or post I am not sure - someone else here might know, but I suspect it is post the formulation of the CFS definition) diagnosed those at Lake Tahoe as having ME. He is also on record as stating that he believed that Lake Tahoe was an ME outbreak. I am guessing here, but based on what I have read - I would say that would have been post the introduction of the 1988 CDC definition on CFS. I say that, because Hyde gave a public lecture here in Australia last year in which he acknowledged that he attended the meeting at Parish and Shelekov were invited to assist in defining the illness as Lake Tahoe, which they did not, as it transpires - participate in. Hyde though said, that he was not as knowledgeable as those two and was still learning about ME and so, left with them. If that was so, then I am assuming that at this time, he would not have put himself forward or called on (? dont know which took place) to examine the Lake Tahoe co hort.

    Rlc has given 2 great historical summaries on this point with resepct to the role of the CDC elsewhere in this thread. So I wont repeat it here.



    I believe we have to approach this carefully and factually.

    It appears that Hyde reports- that Lake Tahoe was an ME outbreak.

    The question however is, what evidence did the CDC have at the time of formulating that definition of CFS - that this was not a new illness they needed to define, but a old one that was well defined in pre existing literature and it was in fact ME?

    This is something I have been trying to get to the bottom of.

    If there was no evidence before the CDC at the time of formulating that definition of CFS - then all that can be said is - that they made a terrible mistake in thinking it was something else. (Hard to believe). But Holmes went to Lake Tahoe looking for mono if I recall (according to my recollection from Oslers Web and reports read in the forum here) and that is what he collected evidence of as I understand it. He brought that back and that was what was presented for the purposes of looking at the illness and trying to define it. Did he find mono amongst the Lake Tahoe co hort? Well that is possible. Hyde, Parish or Shelekov were not selecting the patients to see if they met the diagnostic criteria of ME. Holmes from memory, either selected the patients himself or was given some patients files from which he selected patients took histories and samples from memory of what I read in Oslers Web.

    There is nothing to suggest that Cheney and Peterson knew it was ME and put that to the CDC. There is also nothing that I have found to date, which suggests that Parish and Shekelov put anything before the committee working on the definition, that the CDC was mistaken and that lake Tahoe was an outbreak of ME.

    Therefore the CDC came up with a definition of on the basis of what they had - and it wasnt ME.

    So was born this ''new'' strange entity called CFS and defined accordingly.

    So according to Hyde, the patients at lake tahoe, were ME patients. But, there was never any formal evidence of this before the CDC. So the definition they came up with had nothing to do with ME. Therefore you cant really say that CFS as defined, is a version of ME because it is not. The CDC had no and presented no evidence of ME for the purposes of that exercise and there is nothing on the record to suggest that they were considering it.

    But that is not to say - that the epidemic was not ME. It clearly was according to Hyde, just that the definition has nothing to do with ME.

    For the same reason, it cannot be said that CFS as defined, is an evolutionary model of ME. CFS is at best, a horrible mistake and at worst, a fictional nonsense.

    Though the subtext of what you state - raises an interesting side issue and one I have briefly considered and looked at myself and that is, as far as historical epidemics go - how similar or different was the ME lake Tahoe Co hort ? How if at all, did they differ from other co horts described in historical ME literature relevant to epidemics? There is some noted variations in some of the epidemics, from memory, which suggest the possible operation of different enteroviral strains (virus evolution and virility).

    So your question is apt in that context. Are we looking at an evolutionary event? An enteroviral evolutionary event and how does it sit within the historic literature and what can it tell us generally, as well as - making our way through the mess in the medical literature that I also made mention of.

    Again, this would make a great seperate thread in a dedicated ME part of the forum.

    I would be more interested to look at the issue of what happens when you have an enteroviral infected ME patient exposed to mould and or chemicals? Where the lake Tahoe ME patients all exposed to mould? If so, and you did a comparative historic analysis of that epidemic as against others and found points of distinction that might suggest enteroviral evolution - you might have to ask yourself, is it enteroviral evolution or enterovirus coupled with mould exposure.

    It is more than simply language, because implicit in it was the historical misunderstanding on the part of researchers - which only added to confusion. You see, the definition of CFS seems to have been settled and then they seemed to realise that it was an ME epidemic. So from what I can see, it looks as though from the papers I have read just after 1988, that the researchers - on the basis of funding grants obtained for CFS, had to use that term - but in studying the lake Tahoe patients and with the subsequent knowledge that they did have ME - made reference in the literature to the fact that they were really talking about ME ...which is why I think they made reference to the UK term.

    What I can glean took place then - was a trend to do the same in subsequent literature but they were not using the lake tahoe co hort but a heterogeneous population selected under the CDC definition which possibly included people with PVFS, PVF, ICF and possibly the odd undiagnosed person with ME.

    Phew. Time for a rest.
     
  12. insearchof

    insearchof Senior Member

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    Thanks Bob. I would agree with that.
     
  13. Boule de feu

    Boule de feu Senior Member

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    Even though I have all of Dr. Chias' symptoms on his list, I don't think i have the same illness as the ones who claim they have ME.

    Getting a diagnosis was a very difficult task. I saw specialists after specialists.
    This is why I feel it is so complicated.
     
  14. Boule de feu

    Boule de feu Senior Member

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    I would like to add to this...

    How can we say it is not complicated when Byron Hyde himself takes a whole day to write a patient's history?
    How many doctors are ready to do that?
     
  15. floydguy

    floydguy Senior Member

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    I didn't mean there might not be many ME patients. I meant as a percentage of those diagnosed with CFS. I can't believe it's higher than 20-25%.

    I think it's pointless to start with the average MD. The emphasis should be on the research end and who the research population is. Even though I probably don't have ME I feel I like the potential for breakthroughs are going to come from studying real ME patients as opposed to the ones researched by the CDC, Chalder, Wessley, etc.

    For the life of me I can't figure out why anybody would want to have the CFS label slapped on them. I've been trying for several years now to get it removed!

    I think the ME criteria outlined on this thread is probably better than CCC.
     
  16. insearchof

    insearchof Senior Member

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    Hi Mark

    In response to your post #139 most of which was way over my head and for my brain at this hour, but appeared very impressive all the same.


    .

    In so far as the ME CFS community goes -once you get increasingly more pieces of the puzzle, I agree it is easier to understand, but I would not go as far as saying frustratingly simple. At least, I am not quite at that point yet. :)

    As for general science -in finding an answer, I think you might be right. One day (probably when I am long gone) they will turn around and say this and probably find the answer was there right in front of them all the time.

    But what is to say, its not already known in certain quarters?

    We have to assume though, it is not. This in turn means that to finding the answer, requires unravelling as much of this mess as possible and being able to promote it in a way, that scientific researchers see this and the benefits to be had in cleaning it up ie acknowledging history and maintaining clear distinctions. No attempts to hide or merge Russian dolls.

    Then again, this also assumes that there will not be too much resistance to such.
     
  17. insearchof

    insearchof Senior Member

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    Hi Boule de feu

    What is required of the doctors and understanding what is required, is not complex. Applying that to a patient isnt either.

    The problem is, as you point out - finding a doctor who knows this and can do it.

    It is frustrating for us all.
     
  18. Boule de feu

    Boule de feu Senior Member

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    :) I agree!

    The problem is also getting a treatment for whatever it is that we have (ME or no-ME).

    I believe that if the "historical ME" patients stick with us (the CCC population), they will benefit from the research that is being done on us - something positive will come out... and for both groups.
     
  19. insearchof

    insearchof Senior Member

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    Hi Mark and Willow

    Willow:


    The two cannot be seperated. If you are going to approach the study in a scientific manner, you have to understand the science your applying. That requires an understanding of the distinctions and the reasons for them. They arose on the basis of 50 years of solid science. And an examination of the history clearly shows that the two illnesses have different diagnostic criteria and different names. The distinct names is to assist in avoiding confusion and sadly, it was this very issue, the casual mingling of names that has caused a large part of the problems.

    This thread is about acknowledging that.

    As I have said so many times before, this involves and is about so much more than labels and what has been accepted by science for 50 years cannot be tossed into the bin or merged with another illness, without there being strong scientific evidence to demonstrate that the prior 50 years work was completely wrong or strong evidence to demostrate clearly that they are the same. This has not been established. Therefore the name assigned to one illness category ME, must remain there.



    .


    That is only part of the problem, but a big part of it.

    The other part is the genuine confusion and complete ignorance in the medical research community on what ME and CFS are.

    The position here in Australia is, that CFS is not well known / understood or even acknowledged in either the medical or medical research community. There is little in the way of research going on here or that has gone on here in 25 years, which only adds to this state of affairs. Most researchers would not know which CFS definition to use and would have no hope in selecting a co hort. They would need a CFS specialist to do so. However, these doctors are rare here.

    I believe this would be the same in other parts of the world too and you just have to look at medical literature around 1980s and into 1990s to see the mixing of terminology and the confusion that went on with the use of (and continues) the terms PVFS, CFS and ME as well as the erroneous interchange of the terms ME and CFS.



    .


    It does. We are here trying to re surrect science that has been concealed. If you complain about scientists not approaching the illnesses in a scientific manner, then you must accept the significance of the importance of the name, as previously suggested.





    I am not entirely certain about your view of syndrome. All the same, I believe you have to work with what is. The acknowledged and accepted premise by the medical literature of CFS is - what is. It is stated there as syndrome. I accept though, that what it was constructed upon appears to be a nonsense.



    This is again, not a scientific approach and goes against what we are trying to achieve here.

    What it does in effect is to merge the russian doll ME with the Russian Doll CFS. It not only hides ME once again in the guise of CFS, but it could potentially bury it for good. That might be very pleasing to the CDC.

    As for sub types, they do not exist in historic ME.

    Sub types do exist in CFS.



    Kind of sounds like the name for a ship :)

    For the same reasons I have articulated above, i dont think this is wise or appropriate.


    We have a term for what happened at lake Tahoe: ME.

    What we need is a term for what the CDC did in coming up with CFS: negligence or misleading and deceptive conduct?

    What we need, is to establish a factual repository of historical ME to show really what the CDC CFS (and CCC) was based on and ideally have them acknowledge history and go from there.
     
  20. insearchof

    insearchof Senior Member

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    It is not complicated in terms of understanding what it is (once you do) and what needs to be done.

    However, the illness itself is in terms of the multiple systems affected and the cascading problems, interacting factors, together with its management is.

    Hyde's approach is really extraordinary and personal to the way he likes to practice medicine and is based on other disciples he studied before medicine.

    As the symptoms of ME are multiple and can mimic other illnesses, physicans have to consider and rule out other illnesses. That is time consuming. Hyde can get a handle on it in a day. It might mean that you have to attend another physican on more than one occasion. Hyde states that he can send you off for all the tests and have all the tests completed in a week.

    The process for a knowledgeable physican should not be complex. However the consult will not be a quick one.
     

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