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Case definition for Progressive ME

Discussion in 'General ME/CFS Discussion' started by EllenGB, Jul 9, 2015.

  1. EllenGB

    EllenGB

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    Howes, S and Goudsmit, EM. Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report. Physical Medicine & Rehabilitation- International, 2015, 2, 6, 1052.

    http://austinpublishinggroup.com/physical-medicine/online-first.php *

    This is a report on a patient with a history of increasing dizziness and muscle weakness after minimal exertion. In her twenties, the symptoms became more pronounced following glandular fever. After excluding other diseases, her physician diagnosed myalgic encephalomyelitis (ME), now commonly referred to as chronic fatigue syndrome (CFS). The condition followed a relapsing-remitting course until about five years ago, when she experienced a sudden deterioration and developed new symptoms such as blurred vision in one eye and urinary incontinence. Whether this is a case of progressive ME or a new disease remains uncertain. Research is required both to increase diagnostic clarity and to establish whether the recommended behavioural interventions designed for CFS are appropriate for the subset of patients with neurological symptoms and abnormalities on MRI.


    *This is an open access journal.

    We hope the information in this paper will provide a basis for more research and improved patient care. NB Both of us are ill so it's not as eloquent as we would have liked.
     
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  2. Denise

    Denise Senior Member

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    Thank you @EllenGB for posting this.

    It could well be my technological limitations but I cannot access the article from the link provided.
     
  3. A.B.

    A.B. Senior Member

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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thank you. Interesting case. The link worked for me.
     
  5. Denise

    Denise Senior Member

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  6. halcyon

    halcyon Senior Member

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    Interesting case. It seems plausible that the sudden deterioration could have been triggered by an additional enteroviral infection, especially considering that the deterioration was proceeded by a GI upset. If these viruses can trigger the disease I don't see any reason why an additional infection with one couldn't further progress the illness.
     
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  7. jimells

    jimells Senior Member

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    Personally, I'd just like doctors to recognize that I have a serious illness and work on real treatments. I couldn't care less about the label.

    I've been sick for about 12 years. The illness used to be remitting/relapsing, with each relapse representing another leg down in symptom severity, and each remission peaking at a lower functional level. The last partial remission ended about 1 1/2 years ago, and I am currently on a slow downward spiral, so this patient's recent history feels very familiar.

    Just a month ago I saw my neuro who does seem to recognize that I have a serious illness, and his initial consultant report a few years ago concluded that I have "CFS". But he not even familiar with the term "PEM", so obviously he is not well informed about the illness.

    His current conclusion is that I may now be in the early stages of some new neurological illness that is not advanced enough to be diagnosed. So that, too, resembles this case study. Personally, I think my illness is just a worsening of the same old ME.

    One thing I didn't quite understand is why the case study patient's illness must be ME or MS. Why can't a person have both?
     
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  8. EllenGB

    EllenGB

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    Because they are different.
     
  9. halcyon

    halcyon Senior Member

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    In this particular case the patient's symptoms are not 100% consistent with MS.
     
  10. JaimeS

    JaimeS Senior Member

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    At one point a neurologist stated, "you could have a sort of pre-MS". I remember thinking, "if this is 'pre-MS', what on earth is MS like?!" This was when my symptoms were at their absolute worst.

    They are different, but someone can still have two illnesses at the same time. R-tab was discovered because someone with ME was being treated for cancer.

    Are they inherently by-definition different, as in 'in this particular case, one would exclude the other'? This paper would argue the illnesses are remarkably similar. The list of labwork similarities makes you wonder how a clinician tells MS and ME apart.

    I'm not at all arguing that they're actually the same illness, of course. But they are remarkably similar in presentation and lab data. I don't have trouble believing that MS could coexist with ME. It seems like it would be a very tiny immunological or endocrinological flip of a switch away.

    -J
     
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  11. Asa

    Asa Senior Member

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    Last edited: Jul 9, 2015
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  12. JaimeS

    JaimeS Senior Member

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    Wow, @Asa - I hadn't seen that. That's... uh, cool isn't the right word! It's like not wanting to hit that 'like' button for a terrible story while still wanting to support the poster!

    It's intellectually fascinating and truly horrifying for anyone with both illnesses?

    -J
     
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  13. EllenGB

    EllenGB

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    Yes, you can have two or more illnesses at the same time. If your MRI shows demyelination, you may have MS. If it doesn't, you don't. Criteria. the problem with the CFs criteria is that they require common symptoms, like fatigue, headaches, sore throat etc. so lots of people with other diseases or the menopause can tick the CFs boxes. In short, if you have demyelination, you should be considered for MS but it rules out CFS or CFS/ME, whatever that is. ME is not defined by fatigue. Hope all noticed that. Point here is the overlap.
     
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  14. Marco

    Marco Grrrrrrr!

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    Thanks for posting this Ellen. I've had a similar pattern of declining function/exacerbated or additional symptoms following a series of step changes.

    The sudden severe worsening of symptoms I experience when I overdo things includes some not present at other times like right side ataxia/paralysis and I've tended to refer to these 'crashes' as more 'stroke-like' incidents.

    Someone suggested transient ischemic attacks and the symptoms fit me much better than those described for CFS (or at least the criteria don't mention this sort of sudden transient attack). The pattern of symptoms is the same every time it happens which as I understand it would rule out MS as demyelination occurs randomly so you would expect different symptoms every time.

    I have of course just considered these 'attacks' as another aspect of 'CFS' and haven't mentioned them specifcally to any medics.
     
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  15. EllenGB

    EllenGB

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    Marco, have you had a MRI? I think all cases of PME should.
     
  16. Marco

    Marco Grrrrrrr!

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    No - never been suggested and never likely to be after a ME/CFS diagnosis.
     
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  17. garcia

    garcia Aristocrat Extraordinaire

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    This x 1000
     
    Last edited: Jul 10, 2015
  18. jimells

    jimells Senior Member

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    About all I can understand from this report is that there are anomalies but no one really knows what they mean, if anything. My impression is that many of us have MRI anomalies and they are generally dismissed as unimportant because no one yet knows what they mean.
     
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  19. JaimeS

    JaimeS Senior Member

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    Absolutely. I've had stroke-like eps with ME, too. MRI interpretation is always "white matter lesions... uh, could be chronic migraines?" Which I do not have.

    -J
     
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  20. alex3619

    alex3619 Senior Member

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    This is part of the staged onset hypothesis, I think. It has been postulated, including by me, that many of us get CFS and possibly ME in stages, each infection progressing the disease. In my case there was a marked drop in health after a severe gastrointestinal infection in 1985. For me this all seemed to start with a measles encephalitis infection in 1968. Only later did it become apparent that physical activity could also induce a new prolonged drop in health.
     
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