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Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)

Discussion in 'Phoenix Rising Articles' started by Simon, Jan 20, 2015.

  1. Esther12

    Esther12 Senior Member

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    Not a good idea. There's only evidence that mono increases the risk of ill health. People who caught it are on average worse off than those who did not, even though many of those who catch it recover. I don't think that anyone would consider this as a treatment.
     
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  2. Woolie

    Woolie Senior Member

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    @freshbrew, you have probably already come into contact with the virus anyway. Most of us have by age 35 (lots of people get it without symptoms).
     
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  3. freshbrew

    freshbrew

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    Thank you, esther. I agree.
    I guess after looking for answers since 91. now completely disabled at age 47 from m.e./ cfs desperation sinks in.

    You are right in that taking on mono for a cure is not the answer.

    In the same context, i will find it greatly surprising if research outcomes are good for m.e./ cfs long term sufferers taking chemotherapy ( rituxamib- spell?) have a positive outcome.
    I had hope from a woman posting somewhere on this site receiving the chemotherapy treatment from a md at LPCH that she was feeling great ......for bit.

    But from the updates she seemed to deduce that the great feeling was from the prednisone( steroids) accompanying the rituxamib.

    I think i remember euphoria can be a side effect of steroids amongst other things.

    Sad for her. I like hearing when others feel better.
     
  4. freshbrew

    freshbrew

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    Thank you, Woolie.
    I did not know this.

    You all educate me so much:)

    I had always tested negative for mono ( blood values) so this is good to know.

    Doesnt surprise me though.

    Not sure i trust some lab values anymore, positive or negative.

    Seems my auto antibodies after long term m.e./ cfids/ hhv6 effect my blood values in a inexplicable way.

    I am curious if you or anyone else has thought they have had a false positive lyme test?

    Especially when the" lyme" igm is positive years from each other but never the igg.


    My igg has never turned positive for lyme.

    And per my extensive research and interviews with specialists including llmds,

    the igg should turn positive after you have lyme disease for more than 2 weeks.

    My positive lyme igm s were never accompanied by excaberated symptoms or exposure to ticks.

    Positive " lyme" igm in 2011 and 2014.

    One was western blot at stanford and one was igenix more sensitive.

    Many thanks for your thoughts & sharing Woolie and all.
     
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  5. Woolie

    Woolie Senior Member

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    @freshbrew, I don't know much about the testing, as its not available at all where I live. But I'm currently on steroids (25mg per day), and they work. I don't feel euphoric or anything like that. But they suppress immune activity, so make all the immune-related symptoms go away. Which is most in my case. BUT they only work while you're on them, and there dangerous long term. Also, no-one has any idea whether they will help the underlying disease or make it worse in the long run.

    My choice is to take them now, because I spent two months in bed due to a bad relapse, and was about to lose my job. So figured I didn't have a whole lot to lose.

    If nothing else, the dramatic therapeutic effect of the steroids has helped persuade my doc I have a real illness, which he thinks is autoimmune related.
     
    Last edited: Apr 26, 2015
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  6. Chrisb

    Chrisb Senior Member

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    Since all those interested in the subject are probably aware of this thread, I wonder if I could raise here an issue which has puzzled me for years.

    The title of the study which Simon posted suggests that mononucleosis and glandular fever are entirely synonymous. As far as I can see Pfeiffer's glandular fever was described in 1889 to describe a condition with a particular set of symptoms with which we are familiar. This followed on from the Russian Filatov's earlier description and naming of a similar condition in 1885. In 1920 the term infectious mononucleosis was coined to describe the condition in which abnormal monocytes were observed. Although not all patients fitting the original description of glandular fever were found to have observable abnormal monocytes, and thus could not be shown to have infectious mononucleosis, the terms seem subsequently to have been regarded as entirely interchangeable. This seems to have been extremely sloppy thinking and any sensible naming protocol should have resolved the issue. It would seem that there were" infectious- mononucleosis glandular fever" patients and "non infectious -mononucleosis glandular fever" patients.

    Instead of this the non infectious-mononucleosis glandular fever patients were relegated to having merely "a glandular fever like illness", which seems to be a second class diagnosis. This must be wrong. They still had glandular fever within the terms of the original description. It just wasn't within the description of infectious mononucleosis. There seem to have been attempts by observant researchers and clinicians to use the term "atypical glandular fever", which is accurate, but such usage seems by no means universal and I am not sure whether it has any recognition in naming protocols. It is a strange protocol which allows you to describe a subset of patients, claim the entirety of the name, and eject the remainder of the patients.

    I realise that I have omitted subsequent developments regarding EBV and CMV but I don' believe that this alters the basic proposition.

    I don't know what proportion of cases of glandular fever would be regarded as atypical. Let us assume for the sake of argument that it is 20%. (It may be much less). I get the distinct impression that, in terms only of glandular fever sufferers, the atypical form is overrepresented on this forum. Its only an impression and may be wrong. It would be interesting to know.

    If I am completely wrong, as I may be, I am sure someone will put me right and point me in the right direction.
     
  7. Hip

    Hip Senior Member

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    @Chrisb
    I don't know anything about this, but I just checked, and apparently in the illness of mononucleosis, there are no abnormal monocytes. In the blood of mononucleosis/glandular fever patients, cells with large, irregular nuclei can be seen, and it was originally unclear whether these were abnormal monocytes or abnormal lymphocytes. But it is now known they are abnormal lymphocytes.


    Note: peripheral blood mononuclear cell (PBMC) = any blood cell having a round nucleus, as opposed to a lobed nucleus. Examples of PBMCs include: lymphocytes, monocytes and macrophages.



    I am not sure if there is any relationship between the appearance of abnormal lymphocytes in mononucleosis, but here it says:
     
    Last edited: Sep 14, 2015
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  8. Chrisb

    Chrisb Senior Member

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    @Hip
    Thanks for that Hip. I should clearly rely on better sources. I suspect that the point I am trying to get to is that Glandular Fever was originally diagnosed on empirical grounds before blood tests were available to distinguish between subtypes. At the point when blood tests became available there needed to be questions about those who fulfilled the criteria of Glandular Fever but not of mononucleosis.

    This all seems potentially very relevant in that it is the B cells which are clearly abnormal in mononucleosis but apparently normal in atypical glandular fever, despite the symptoms being pretty much identical. The consultant physician who diagnosed my atypical glandular fever told me that there was a narrow window in which the tests were positive and if this window was missed tests would come back negative. In those circumstances a diagnosis should be made purely on the symptoms. But that was 35 years ago and things might have changed! On the other hand not all change is for the better.

    It would seem to open the possibility of a different immune response allowing the chronicity of the illness. I shall have to try and refine the ideas before putting them to Jonathan. I am sure he will know. This is why I think it would be interesting to know the prevalence on this forum of those with the "glandular fever like illness" and what the ratio of them is to those diagnosed with EBV
     
  9. Hip

    Hip Senior Member

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    What is the actual difference between atypical glandular fever / mononucleosis, and normal glandular fever / mononucleosis?
     
  10. Chrisb

    Chrisb Senior Member

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    The blood tests all come back normal despite the symptoms being identical to mononucleosis. For many years before the availability of google I used to think it was merely a condition that looked like glandular fever but couldn't be proved to be. However there are references in the literature which I shall try and find and post links. Someone in either the north of England or Scotland studied a cluster of cases to which the name was attached.
     
  11. Hip

    Hip Senior Member

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    Which blood tests? Do you mean EBV or cytomegalovirus IgM antibodies? Or microscopy tests looking for abnormal blood cells?
     
  12. Chrisb

    Chrisb Senior Member

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  13. Chrisb

    Chrisb Senior Member

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    That I cannot answer. In my case I had armfuls of blood taken for testing. I would think every test was done that was available in about 1990. I had an excellent consultant at that time. It was the original consultant physician ten years earlier who told me that about atypical glandular fever.
     
  14. Hip

    Hip Senior Member

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    I don't mean your blood tests, but rather the tests and blood markers that distinguish normal versus atypical mono.
     
  15. Chrisb

    Chrisb Senior Member

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    I still cannot answer. I was relying on what I was told by someone expert in the field in 1980. I discussed the matter with a specialist who was in communication with, inter alia, Mowbray and Behan, and who was my consultant until 1992, when the NHS closed such clinics. In those days one did not need to do ones own research. The doctors were far better at it.
     
  16. Hip

    Hip Senior Member

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    OK, well I guess we need to consult Professor Google:

    This paper says the blood parameter that is different in atypical infectious mononucleosis is the percentage of CD8 cells. The CD8 percentage is significantly higher in typical infectious mononucleosis than it is in atypical infectious mononucleosis. All the other parameters tested were the same.

    In particular, the paper says that abnormal lymphocyte percentage is the same in both typical and atypical mononucleosis.


    Apparently atypical cases of mononucleosis can be caused by agents other than EBV:
    So possibly your atypical mononucleosis may have been due to one of these other infectious pathogens.
     
  17. Chrisb

    Chrisb Senior Member

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    Thank you for that. I would not have thought that there was anything on that list which would have escaped the attention of a major teaching hospital in 1990. It is of course a possibility that the illness was caused by one of these pathogens but that the tests were insufficiently precise to detect them.

    The consultant really did take care. I was admitted to hospital twice , briefly, for tests and had a muscle biopsy done. On one occasion he took me to the lunchtime training talk given by Prof Mowbray and was rather concerned at the discussion of recent potential retrovirus links. I don't think much would have got past him. He introduced me to the expert who considered the muscle biopsy. These were serious people I was dealing with.

    Just to confirm that he thought mine an absolutely core case of ME, I was sent off to Glasgow Southern to participate in one of Prof Behan's trials.

    My impression is that there are still people today receiving diagnoses of glandular fever like illness unconfirmed by blood tests.
     
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  18. Hip

    Hip Senior Member

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    The enthusiasm and dedication of these ME/CFS researchers at that time was amazing. I hope that this level of scientific interest in ME/CFS will reinstate itself in the UK at some point (after we put the disastrous Wessely school, those traitors to science — but good friends to the insurance industry — up against the wall).

    I developed ME/CFS around Mid-2005, and it soon became clear to me that very little good science was going on in the NHS in relation to ME/CFS, just all that Wessely school GET/CBT mumbo-jumbo, so I realized my GP and the NHS in general had nothing to offer.
     
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  19. Chrisb

    Chrisb Senior Member

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    I agree entirely. I consider myself fortunate that such people were around when I became ill. When the clinic was closed in 1992ish to make way for some CBT/GET clinic run by therapists supervised by psychiatrists it was made clear that it would be a waste of time to attend.

    It does concern me that Virginia Bottomley was a departmental minister at the time of this act of vandalism.
     

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