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CFS or ME or Severe ME

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Feb 13, 2015.

  1. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I tried this months ago, but couldn't get adequate answers, so I'm trying this again...

    Are people here grouping "mild/moderate/severe" patients into CFS, and the "profound" (home and bed bound), into ME? Or are they grouping all of them into ME, but calling the home and bed bound ones "severe" ME?

    Also, if anybody could add what specific things differentiate these categories.... so far, I don't have a good answer.
     
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  2. Sasha

    Sasha Fine, thank you

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    Depends on which CFS criteria you use but I generally consider ME to be a subset of CFS and neither to have any monopoly on severity. Both can be relatively mild or severe, I'd say.
     
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  3. halcyon

    halcyon Senior Member

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    According to some, ME and CFS are two different diseases. I believe this is due to the Oxford/Fukuda criteria being so vague and possibly capturing people that don't truly have what we as patients know to be ME/CFS. Unfortunately, in the US, even if you meet the ME criteria, you will be diagnosed with CFS because ME doesn't exist as a clinical entity here.

    I don't believe it's accurate to differentiate severity into ME or CFS. It seems you either have ME or CFS depending solely on where you live or who diagnoses you. This is why we desperately need an agreed upon international criteria and name that can properly classify patients and we can all be sure we're talking about the same thing when we say the name of the disease. Without clear biomarkers to confirm diagnosis, there is always going to be some question about exactly who has or doesn't have ME/CFS.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    I had heard that ME includes inflammation and all the neuro cog issues that go with it.
     
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Personally, I consider CFS to be a very bad name and paper diagnosis which does not precisely correspond to any actual existing disease (or syndrome or condition). However, many patients having a neuro-immune disease that we would consider to be ME/SEID (mild, moderate, severe) are diagnosed with CFS and may end up in CFS studies (in the studies, that would be mostly the mild ones).

    Other people diagnosed with CFS and who may end up in CFS studies may have unrecognized cases of Lupus, MS, MDD, vitamin D deficiency, celiac, sleep apnea, pituitary conditions, thyroid conditions, rare diseases, and so on (without also having ME/SEID, although it is possible to have ME/SEID and other conditions of course). This is documented in the literature (although I may have added a few diagnoses/conditions--not the "major" common diseases, though; they are noted).

    Unless I am referring to a specific diagnostic criteria, I try to refer to not-ME/SEID patients as having CF (not CFS), to avoid confusion with CFS being used as a diagnosis for ME patients.
     
    Last edited: Feb 13, 2015
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  6. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    I think the invention of Chronic Fatigue Syndrome was a medical blunder that should never have happened. Everyone involved with it has been caught in a 30 year mire of confusion, missed diagnoses, wrong diagnoses, stigmatization, medical wastebasket, etc. And, of course, M.E. had been sucked into and lost in this mire. I think the best thing that could happen is for CFS to be totally done away with while M.E. is restored and recognized for the serious neurological disease that it is.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Dr.Patient I understand your precise question, and it is a great question, but I suspect if you ask ten different people on PR you might get ten different answers. And if you asked ten different doctors, Lord knows what you would get.

    In my mind, CFS is a wastebasket diagnosis that does not capture what I personally experience. I prefer the term ME but I do not use it b/c it is not a recognized or known term in the U.S. (outside of seeing a true ME/CFS specialist.) For myself within the disease of M.E., there are mild, moderate, severe and very severe (profound) cases. I don't know if this helps?
     
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  8. taniaaust1

    taniaaust1

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    I think as Sasha does till the world sorts out the mess of things and stops calling ME patients CFS ones. Till then ME is like a subset within the CFS patient group, till ME gains the individual group recognition it should have.
    .............
    No that isnt necessarily the case, one cant distinguish by severity, its rather about symptom complexes.. ME is generally a more complex illness then CFS.

    One could have thou a very sick CFS person who is more disabled then someone who has ME thou "generally' (not always!!)a ME person is more sick but only for the reason for that is that they have far wider group of symptoms adding to their disability and more range of things going wrong in their bodies.

    A CFS person "could have" any missed diagnoses out there, some very very serious and maybe even life threatening. A CFS person could turn out to be a missed cancer case or anything!!
     
  9. taniaaust1

    taniaaust1

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    Known testable ME abnormalities help differentiate, I have at least 4 of those. or use the International ME definition to help diagnose ME.

    those meeting the Canadian Consensus Criteria are generally ME patients and with some of test abnormalities mentioned in the CCC which commonly show up ME abnormalities one should be ablet o clarify that a ME diagnoses is probably right.

    As Im likely to have two other things as well (mast cell issue and possibly an inherited mito issue), I wasnt happy even thou I met the descriptions or definitions for ME to be called an ME patient till I found several of the ME abnormalities too in my tests.

    If tests are done and the definitions looked at, I dont think it should be too hard to work out where a person probably fits. It should be clear even before ones been sick for 6mths to a specialist who is ME aware.
    ....

    I have a sister who is a "mild" ME case, I think she has a great chance of fully recovering and she's doing very well at the moment (working, studying as well as having 3 young children to take care of) thou she still gets some bad days.
     
  10. Forbin

    Forbin Senior Member

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  11. Gingergrrl

    Gingergrrl Senior Member

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    That is interesting and by this definition, I am moderate but there are some very basic functions that I require help with so not sure where this places me?
     
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  12. SOC

    SOC

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    I know I've said this before, but I can't help repeating it --

    What other illness is "mild" with a 50% reduction in pre-illness activity level, and "moderate" when the patient is mostly housebound? o_O You can't work, but your illness level is considered moderate?

    And in spite of this, most people, including (or especially) medical professionals don't consider ME/SEID a serious illness? :cautious: Where's the logic?
     
    Last edited: Feb 14, 2015
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  13. WoolPippi

    WoolPippi Senior Member

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    No. Whatever we do, this is not it.

    This happens more often but is not a rule.

    Cfs talk focuses on the energy capacity of the body: mitichondria and adrenals. And all the things that drain people (stress, stressors, diet)

    ME talk revolves around the external cause and its treatment (virus, anti-biotics, protocols)

    These two umbrella-terms are intertwined, overlapping and deal with the same problems. Both have an unfortunate heritage from medicine history and public opinion.

    Ps, this great forum also shows the cultural differences in approach, for example an American tendency to right the body with drugs, preferably the one. (see quests for the best sleep drug or supplements)
     
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  14. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I agree on the inaccuracy of these reduction levels. That is why I propose "mild" (can work full time, personal and social activities reduced) "moderate" (can work part time only) "severe" ( cannot work at all, but can leave home several times a week) and "profound" (home or bed bound).

    At this point in time, this classification should be essentially a disability based one.
     
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  15. alex3619

    alex3619 Senior Member

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    There is still severe which should be added. If someone needs constant care, and even life support measures, it goes beyond house bound. It is the case though that such classifications tend to be about disability.

    I also have been flabbergasted that 50% incapacity is mild. Most people would call that severe, and go from there.
     
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  16. Mij

    Mij Senior Member

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    The nature of my disability can not be categorized, it involves a long explanation. If I were to follow the classifications above, I would fall under "severe". I don't consider myself "severe". I've reached a level where if I stay within my boundaries I am fairly functional for short periods of time.
     
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  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I have included them under "profound" (home or bed-bound).
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I fully agree with @SOC and not sure any other illness would consider someone who is virtually homebound and having to use a wheelchair to go out as "Moderate!"
     
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  19. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    If you are not fairly functional on a consistent basis, say 8 hours a day 5 days a week, you are still "severe"
     
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  20. alex3619

    alex3619 Senior Member

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    I don't think this is adequate. I am house bound but don't need life support. There is a huge difference between housebound and needing a feeding tube and oxygen.
     
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