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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. Tulip

    Tulip Guest

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    I just want to say that this was never a thread about who is the sickest, I have no doubt that we are all quite sick. It was always a thread about the differences in historical M.E. and the 1988 invented CFS - I want the public to know they are not the same. I hope we can continue to discuss it as it's vital for research funding and our health, sanity and getting our lives back!.
  2. Boule de feu

    Boule de feu Senior Member

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    You all know that I would win the contest: I am the sickest of all! LOL
    A very good thread, Tuliip. Thank you for this.
  3. SOC

    SOC Moderator and Senior Member

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    This is a ludicrous statement. I never denied that some patients have those symptoms. In fact, I carefully said that I believe that some people do.

    You listed these symptoms:
    I said:
    and
    You lied about what I said and then claimed the my denial is insulting and offensive. I NEVER SAID THOSE SYMPTOMS DON'T EXIST. You owe me an apology.

    Are you saying that any PWC who doesn't believe that slurred speech, numbness, paralysis, seizures, and gastroparesis are common symptoms of ME/CFS is inexcusably ignorant?
  4. Tulip

    Tulip Guest

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    Yes Sickofcfs, it was all an *evil* plan to bring you down :victory:

    Can we move on please, I don't have the energy for unnecessary arguments and it would be good to keep the thread *on track*.
  5. insearchof

    insearchof Senior Member

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    Hi Mark


  6. SOC

    SOC Moderator and Senior Member

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    Okay, since you seem to think you are so much more knowledgeable about ME/CFS than ignorant old me, would you please answer these simple questions which have not been answered in this thread?

    I am not requesting an extensive discourse -- I wouldn't want to presume on your time. I will be perfectly happy with one word answers. Yes or no would suffice in most cases. I beg your indulgence in providing a few more words to correct question (5) as necessary.

    I have no intention whatsoever of questioning your answers -- I will take you strictly at your word. This is simply for my edification and that of other ignoramuses like me who may be reading this thread. Let me emphasize: I will not question, or even respond to your answers to these questions. I am simply trying to understand.

    WillowJ said:
    (1) Do you restrict the term ME for those with enterovirus infections? In other words, is an enteroviral infection the only illness for which "ME" can be correctly used, according to your extensive knowledge?

    (2) What is the "proper" name for an illness that meets the CCC, including CNS dysfunctions, does not resolve by itself, but is not the result of an enteroviral infection? In other words, what is the "proper" name of the illness defined by the CCC if we exclude the "historic" ME patients?

    (3) Did Ramsay say specifically that enteroviral infection is necessary for ME?

    (4) Do you think that the illness studied by Lombardi, et al, and Alter/Lo was exclusively "historic" or "real" ME?

    (5) Is the following a correct breakdown of currently defined ME/CFS patients according to your extensive knowledge of the situation?

    a. ME -- infection with an enterovirus which leads to an illness similar to CCC-defined ME/CFS but commonly includes symptoms like slurred speech, paralysis, and seizures.

    b. PVS -- a syndrome resulting from infection with a viral agent that results in prolonged illness state that eventually resolves by itself. This would be the illness defined by the CCC excepting those patients with "historic" or "real" ME, who might be improperly included because of the lack of specificity in the CCC.

    c. CFS -- a syndrome defined by the CDC whose definition is so broad that it includes some "historic" or "real" ME patients, PVS patients, patients with primary mental illness, people with the symptom "chronic fatigue", and people with known illnesses that have not been properly diagnosed.

    I reiterate in order to make it clear that I do not want to be overly demanding:

    Please do not waste your valuable time and energy to try to educate ignorant me. As you've pointed out a number of times, that is not your responsibility. I am not asking for a lecture; I humbly ask for simple clarification of a few points to straighten out some confusion in my incredibly ignorant and brain fogged mind. I will be quite happy if you would deign to expend a single word -- yes or no would do in most cases -- to help me understand the questions I posed in (1) through (4).

    For question (5), I plead for, but do not insist upon, a small amount more of your valuable time and energy. If you feel you can spare the time to advise a fellow sufferer (I don't claim to be a fellow ME-suffer, since I still don't understand the details of the distinctions and I don't dare claim "ME", but I do suffer, and I do meet the CCC), would you correct the breakdowns in question (5). In particular, I don't understand where people who fit the CCC, but are not have "historic" ME fit into a "correct", "real", or "historical" framework. Please do not overextend yourself to do it, of course. Perhaps you could spare half a dozen words to elucidate, for the ignorant masses, this important subject.

    Thank you in advance for sharing a modicum of your vast and hard-won knowledge with those of us who do read the literature but who, through a sad lack of intelligence despite advanced degrees, and/or advanced brain fog, do not understand it the way you do and so remain inexcusably ignorant.
  7. insearchof

    insearchof Senior Member

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    Hi Mark


    I am encouraged by this statement Mark and believe that it would serve the position of the board members of PR well, to discuss and document historical ME and understand the distinctions, especially if they wish their views on name changes and or definitions to be taken seriously by institutions in the USA like the CDC and NIH who are well aware of these matters.

    Perhaps the board of PR would like to give some consideration to designating a part of the forum to historical ME. This could be a repository for historical reference material, articles and continuing discussions on the subject matter.

    I think your analogy of the Russian nestling dolls, is quite apt, and it does also tie in with your point on the need to be mindful of history.

    Whilst it might be contended that the doll labelled ME can be found inside the doll labelled CFS, if it is merely viewed as analogous with CFS and is merged with it, not only will the doll labelled ME vanish, but it will amount to a repeat of history, when the doll once found nestled in ME was destroyed. It no longer exists, and the condition it represents is now said to have vanished also ( though this is not correct) The condition is said to no longer exist because it became merged into the doll labelled ME. That doll was once known and labelled as "polio" ( non paralytic polio). This resulted in and contributed to, the loss of general knowledge on, the role of and interest in general Enteroviral infection.
  8. insearchof

    insearchof Senior Member

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    Hi SOC

    I refer to Marks post (#100) and my post (#107). I would ask you to reconsider them. I took Marks comments seriously and made my post in response to try and assist in finding some way of navigating through this thread.

    I wish to go forward in that spirit. I don't wish to debate or fight you SOC.

    Given that, if you would like to reformulate your last post and re post the questions, without the mocking, patronizing and sarcastic tones, I will do my best to answer them.
  9. SOC

    SOC Moderator and Senior Member

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    You are a fine one to be talking about patronizing.

    I did read and consider those posts. I don't appreciate your patronizing tone or your implication that I did not consider them sufficiently. In fact, I'm fed up with your implications and outright statements throughout this thread that I haven't read or considered this or that. You don't know what I have read or what I think or how deeply I think. What gives you the right to claim I didn't read or understand or "consider" something because I don't interpret it the way you do?

    I don't want to fight you, either. I do, however, stand up for myself when I'm being bullied.

    I entered this thread sincerely trying to understand your position because I honestly want to know how "historic ME" is defined. I was not interested in debate because I don't have a position, yet. I just wanted information. I got insults.

    For future reference, I am not ignorant, despite what you and Tulip have said in this thread. I have read the literature, but I don't understand it the way you do. That doesn't mean I believe either of us is perfectly right or perfectly wrong.

    As for my questions: I don't like demands any more than you do. I am certainly not going to reformulate my questions simply to meet your arrogant and patronizing demand. If I have to grovel to get answers, I'll do without.

    I was ready, at one time, to be a supporter of your position. I don't believe that anyone should hijack the name of an established illness simply because they like it better than the one they were given. All I wanted to know what how exactly ME is defined -- in a way any of us could take to our doctors to get a proper diagnosis -- so that it is clear which of us currently under the ME/CFS umbrella have "correctly" defined ME.

    Frankly, I no longer care. I can't support your position because I don't understand it. I do not see it is the unquestionable truth that you have unilaterally stated it is. But who really cares if I support your position? I certainly don't.

    I will continue to use ME/CFS per the CCC because I respect the expertise of the many people who put in the time and effort to construct that document. Their criteria are clear and can be used by any doctor to diagnosis ME/CFS. That's good enough for me given the current state of knowledge.

    I am no longer interested in posting to this thread, so in that way you have won. You haven't made your point, but you have made it no longer worth my time and energy to try to understand where you're coming from. Hopefully, this conversation can continue civilly if I'm not asking inconvenient, but legitimate questions.
  10. insearchof

    insearchof Senior Member

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    SOC



    My last post was not patronizing, only forthright.

    I took Marks comments seriously and saw your subsequent post to me right after that, as one that was disrespectful and seemed to be in complete disregard for what was being asked of us all.

    I am sorry you see things things the way you have expressed in your last post and feel the way you do.
  11. Bob

    Bob

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  12. insearchof

    insearchof Senior Member

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    Hi Bob,

    I have to say, its been a while since I have studied both side by side.

    I am not quite sure the point your trying to make here. Correct if I am wrong, but I take it that you are saying that both appear so similar to you, that you wonder what the real issue is?

    In any event, I believe there are similarities between the two, and consequently people might have trouble discerning the points of diffference without studying both closely.

    However, with things that appear similar (but are not the same) this is often the case. Unfortunately, when this is so, we really have little choice other than to study things closely in order to apperciate and discern the point(s) of distinction.

    The Nightingale document you refer to is not a new definition but a codification (summary of historical ME if you like). Given that it is nothing more than a direct nod to and promotion of the historical ME literature and if you have had the opportunity to read and think about the historic literature, you know immediately that there are obvious points of distinction.

    The most obvious one being, that all CFS historical definitions and literature leading up to and including CCC denote unremitting fatigue as the main or key characteristic of the illness known as CFS and that the cause(s) is unknown. On the other hand, historical medical literature relating to ME as summarized or collated in the Nightingale document, acknowledges that the main feature distinguishing feature of ME is not unremitting fatigue, but injury to and subsequent central nervous system dysfunction that has largely been associated/attributed to enteroviral infection.

    You dont really have to study both documents closely, if you understand what the two documents are and purport to achieve. The Nightingale document is really a summary of historic ME and has nothing to do with CFS.

    The CCC is also a codificaiton but primarily in relation to the literature and studies that were done on CFS - to assist physicans in clinical practice to assist with diagnosis of CFS. Some of the CFS research, especially in the early days -did include patients from the Lake Tahoe co hort who Hyde apparently diagnosed as having ME. There was also a tendency - especially on the part of US researchers - in these early days (and perhaps for the reason I gave) to report in the literature, that in the UK, they refer to CFS as ME. With this came a trend to use the terms interchangably in the research community - but they were not using the lake tahoe co hort and they were selecting patients on the basis of early CDC definitions that resulted in a heterogenous group of patients, some that had PVFS, PVF and ICF.

    Of course the CCC comes close to selecting ME patients than the earlier CDC definitions, and research done on this basis, may also catch undiagnosed ME patients. This would result (depending on the proportionality of the co hort) as sometimes reflecting results you might have found in the traditional ME literature.

    I believe this is why some of the CFS research literature resonates with findings suggestive of ME and that this is consequently why you see some echos of ME in the CCC document which summarised such research findings for the purpose of the exercise they were undertaking in formulating the CCC document.
    sandgroper likes this.
  13. Bob

    Bob

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    Hi insearchof,

    Yes, after a quick read of both the CCC and the Nightingale definition, I didn't notice any significant differences. But I haven't compared them closely.

    It was a casual remark that I made, but I suppose I said it because I thought it was interesting that the two definitions are so similar, at least on first reading them, and maybe such small differences don't warrant such a heated discussion that has been playing out on this thread. If there are only small differences between the CCC and the historic definitions for ME, then it would be good to know exactly what those small differences are. But I'm afraid that I'm not volunteering to do the work today. Like I said, I was just making a casual observation based on a brief read of each definition, so I may be wrong about there only being small differences.

    I agree with your observation that small differences can be very significant in the medical world.

    Bob
  14. Bob

    Bob

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    I think I've read the early sections before, but I'm pretty sure I haven't read the whole thing...maybe one day...
  15. insearchof

    insearchof Senior Member

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    Hi Bob,

    Looks like you posted while I was adding to/editing to my post.

    I thought that is what you might have been alluding to. So thanks for clarifying that and I hope that my previous post goes some of the way to suggesting that the differences are not minor and the discussion therefore, not pedantic.

    Thanks for posting the above article. I think I have read that a couple of times, but it is always good to revisit these articles.
  16. Bob

    Bob

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    Yes, I'll read the rest of your previous post in a mo.

    I don't think the discussion has been unnecessarily pedantic, just heated at times. It's been extremely interesting though.
  17. Boule de feu

    Boule de feu Senior Member

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    So exciting, bu still very confusing.

    The symptoms you mentioned above are the ones that are found in very severe cases of ME. Would you agree that Dr. Cheney and Dr. Peterson ME population could have been less severe cases and this is why they haven't included these symptoms in the CCC case definition. Could the CCC be defining the same disease and this is why Dr. Byron respects the authors' opinion?

    Would we also agree that when diagnosed with the CCC, we have a better chance of having ME? If we have all of the symptoms stated in the CCC less 3 does it give me the right of saying I suffer from ME?

    I find this thread very fascinating but boy OH boy am I depressed when reading it. How will the scientific/medical world be able to cure me if nobody can agree?

    We could say that we are experts in this field (we know more than lots and lots of doctors) but even us can't agree! :confused:

    WHO HAS ME AND WHO HAS NOT???
  18. Bob

    Bob

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    There has been a certain amount of frustration expressed on this thread, but I think that this frustration just comes from not being able to easily communicate our understanding of the subject, and also not fully understanding other people's perspectives.

    I believe that most of the heat in discussions on this subject comes purely from misunderstanding, and miscommunicating, each other's points of view.
    It's such a complex and sensitive subject, and it's so difficult to explain our knowledge and points of view in a few sentences on this subject, that people easily misunderstand and miscommunicate each other's perspectives and motivations.

    After decades of living with the disease, investigating the subject and seeing the history of ME develop and the disease definition being corrupted by vested interests, i think that some people understandably get frustrated when they perceive that others appear to be unable to grasp what they view as their own basic and fundamental understanding and insights of the history of ME and CFS.

    Equally, I think that people get frustrated when people appear to be telling them that they don't have ME, and that they only have a non-illness called CFS, unless they've been diagnosed with a historic definition of ME. I know that this isn't what people are saying, but some comments can come across like that and can appear to be arrogant if not communicated sensitively.

    In reality, the subject is extremely complex, and it's very helpful to have a thread like this one so that we can all get better insight into the subject.
    At the end of the day, we don't all have to agree with each other, but if we understand each other's perspectives, and we collectively develop a better knowledge about the history of ME and CFS and ME/CFS, then I believe that this empowers us all to work together for positive change for our community, even if we don't agree on absolutely everything.
  19. Bob

    Bob

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    In the spirit of mutual cooperation, I've taken the liberty of reposting sickofcfs's questions because they are very interesting.
    (sickofcfs, if this isn't acceptable, then apologies, and i'll delete this post if you want me to.)

    If anyone has strong views about these issues, then I would be very interested in reading the responses...

    (1) Do you restrict the term ME for those with enterovirus infections? In other words, is an enteroviral infection the only illness for which "ME" can be correctly used, according to your extensive knowledge?

    (2) What is the "proper" name for an illness that meets the CCC, including CNS dysfunctions, does not resolve by itself, but is not the result of an enteroviral infection? In other words, what is the "proper" name of the illness defined by the CCC if we exclude the "historic" ME patients?

    (3) Did Ramsay say specifically that enteroviral infection is necessary for ME?

    (4) Do you think that the illness studied by Lombardi, et al, and Alter/Lo was exclusively "historic" or "real" ME?

    (5) Is the following a correct breakdown of currently defined ME/CFS patients?

    a. ME -- infection with an enterovirus which leads to an illness similar to CCC-defined ME/CFS but commonly includes symptoms like slurred speech, paralysis, and seizures.

    b. PVS -- a syndrome resulting from infection with a viral agent that results in prolonged illness state that eventually resolves by itself. This would be the illness defined by the CCC excepting those patients with "historic" or "real" ME, who might be improperly included because of the lack of specificity in the CCC.

    c. CFS -- a syndrome defined by the CDC whose definition is so broad that it includes some "historic" or "real" ME patients, PVS patients, patients with primary mental illness, people with the symptom "chronic fatigue", and people with known illnesses that have not been properly diagnosed.
  20. Boule de feu

    Boule de feu Senior Member

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    I agree with this.

    I live in Canada and in November 2005 i had a case of - what was very obvious at the time - PVFS. I was referred to an infectious specialist for a virus I could not get rid of (after 4 months). However, the specialist mentioned "systemic illness" and my doctor gave me a diagnosis of "a very strong case of ME/CFS".

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