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The ME (ICC) vs CFS (Fukuda) Diagnosis Poll

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Cort, Sep 13, 2011.

?

I Meet the Criteria For

  1. CFS according to the Fukuda Definition (1994) but not the ICC for ME

    2 vote(s)
    2.4%
  2. ME according to the ICC for ME (2011) but not the Fukuda def for CFS

    7 vote(s)
    8.3%
  3. I meet the criteria for both the ICC and the Fukuda definition

    74 vote(s)
    88.1%
  4. I don't meet either definition

    1 vote(s)
    1.2%
  1. justy

    justy Senior Member

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    Xchoc - i havent been diagnosed with Dysautonomia and apart from the odd day where i have (relatively) more enrgy i am also fatigued or as i prefer to call it exhausted all the time.
    Having said that im not likely to be tested for it here,i do wonder as i have low BP and get dizzy a lot especially when i stand up and when i feel really bad ;aying down with my head slightly elevated (not flat) is the best way to feel better, i also have terrible temp fluctuations -mostly cold but when i get hot i cant cool down and start sweating like mad.
    Ho Hum the joys of M.E!

    Justy.
  2. floydguy

    floydguy Senior Member

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    I have a recent diagnosis of dysautonomia despite not having awful fatigue.
  3. xchocoholic

    xchocoholic Senior Member

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    Justy,

    Fun, indeed .. Lol ..

    You can do your own poor man.s tilt table test with a bp cuff. Have something to write with handy.

    Just lay down flat for an hour and remain calm. Then take your bp and heart rate. I do this with my arm extended outright and my hand resting on something so that my arm is relaxed. I try to simulate how they do it at the doctors office.

    Next stand up straight and don't move except to take your bp. Take it at 1 min, 2 min, 3 min and then 10 minutes. A word of caution on the 10 minute test .. I was close to passing out and it took me an hour at least to recover fully. Of course if you feel faint stop and ask someone to help you.

    A 20 pt drop in your bp 3 minutes means you have orthostatic intolerance. And a 30 pt increase in heart rate after 10 minutes indicates tachycardia / pots.

    Tc .. X
  4. xchocoholic

    xchocoholic Senior Member

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    Hi floydguy,

    Can you describe your dysautonomia and what your diagnosis is based on ? Thanks .. X
  5. floydguy

    floydguy Senior Member

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    - Rapid heart rate
    - Persistent body temp well below 97
    - Paradoxical breathing
    - Swings in blood pressure (not related to standing though)
    - Occasional fainting episodes

    Dxed by both Anthony Komaroff and Nancy Klimas.
  6. mezombie

    mezombie Senior Member

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    Keep in mind that the ME ICC authors will be putting out Physician's Guidelines which will include more detailed diagnosis information, helpful tests, and a symptom severity scale. The ME ICC will also be discussed at the upcoming IACFS/ME conference in Ottawa. I expect these events will address some of the ambiguities.
  7. mellster

    mellster Marco

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    I am not sure whether narrowing down will help the cause. With such a complex condition and multiple subsets the perceived symptoms obviously vary widely. While it's possible that some might find out that they don't have CFS/ME after all, judging by my time here in the forum this is rather a rare occurrence. I think doctors should simply treat and investigate patients that report symptoms instead of questioning they psyche. The new guidelines are great and necessary, but they should be viewed as an aiding educational guide rather than an inclusion/exclusion tool.
  8. mezombie

    mezombie Senior Member

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    There is a dire need for research on well-defined patient cohorts and the ME ICC selects such cohorts. Research to date on, say, the same pathogen has been difficult to compare because of the overbroad case definitions in use to date.
  9. floydguy

    floydguy Senior Member

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    The problem though is that how can you make any research progress if you're studying people who don't have the same disease.? This shouldn't be a case of no patient left behind. At some point, somebody is going to have suck it up and make the case for some kind of bio-marker as the basis of research studies.
  10. mellster

    mellster Marco

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    Yes, but since there are likely multiple causes/triggers, they need to treat each cohort according to their needs. Unless, of course, the one-retrovirus theory pans out in the end. I think for research well defined cohorts are a necessity, but this condition causes so many dysfunctions that treatment-wise every patients should be treated according to their needs and to what they respond best (might take multiple trial and error stages).
  11. floydguy

    floydguy Senior Member

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    If there are indeed cohorts they should be defined and researched as such. Yes, treatment should be based on specific symptoms and not based on any broad category that may exist for any disease. I am not sure it matters whether are multiple causes or triggers. If there are then there must be a common underlying root cause of illness. Otherwise we're talking about different diseases.
  12. xchocoholic

    xchocoholic Senior Member

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    Thanks floydguy,

    Blood pressure dropping upon standing is why I think I.m so tired. In fact, if I just lay down until my bp normalizes and my heart stops pounding, I feel healthy. It.s when I get up things go downhill fast. I.vd been like this since 10/2007. I.m pretty sure this is what myhill calls healthy at rest. Of course I only feel healthy at rest if I've eaten recently and slept well.

    Btw. Your type of dysautonomia / bp regulation problem / not assocaiated with standing, has been discussed at the dinet board but since I couldn.t relate, I don.t remember what was said.
  13. xchocoholic

    xchocoholic Senior Member

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    Hi again,

    I just read this. It's interesting to me that you showed similar results on the bike test and yet excercise doesn.t exacerbate your symptoms. Did you feel ok on the bike test ? Can you run on a treadmill ?

    When I try either of these, my muscles go into spam unless I go very very very slowly or stop and let my muscles recover. All this time I thought my reaction to excercise was related to my bike test results. I don.t think I lasted 30 seconds on the bike test.

    At the risk of being virtually hung by my listmates, lol, I wanted to tell you that my pain was from eating tomatoes or bacon. I love tomato sauce but it kills me everytime ...

    Tc ... X
  14. floydguy

    floydguy Senior Member

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    There is a nuance I think. And that is that I think my threshold is higher. I seem to be okay if I am exercising at a constant rate - think of cycling or an exercise bike. But once I start straining I start to fall apart and have to stop or slow down. Once I am back to a consistent exertion than I seem to be okay again. I don't usually have problems later in the day or the next day.
  15. ahimsa

    ahimsa Senior Member

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    Diagnosis of diffferent types of Orthostatic Intolerance

    This type of home testing will find some types of Orthostatic Intolerance but it will also miss some types. Plus, as xchocoholic says, be very careful that you don't pass out! You could hurt yourself if you fainted and fell over. I wouldn't recommend doing this test at home without someone with you. (maybe I'm way too cautious but thought I'd mention it)

    My own type of Orthostatic Intolerance (OI) is Neurally Mediated Hypotension (NMH) and it would not have shown up on a home test like this. I took the tilt table test twice (why twice? the second one was medically unnecessary--exact wording from my doctor--but it was required as evidence for my ERISA long term disability claim. I think they were expecting it to be normal the second time and they were quite surprised that it was so obviously abnormal again. In other words, their strategy of forcing me to take the test completely backfired).

    Anyway, on both tests my blood pressure dropped quite suddenly (to some value that could not be measured by the BP cuff) and I passed out, just from the standing (no isoproteronol required). It was a clearly abnormal result that was obvious even to my cardiologist who is not a specialist in autonomic dysfunction.

    The point is that it took between 20-30 minutes before my BP dropped so suddenly. 10 minutes of standing would not have been long enough for me. Also, as the test went on I was quite uncomfortable, getting a lot of symptoms (esp. nausea) and I was fidgeting and moving my feet without being aware of it. Obviously, my subconscious was aware that moving around would help to keep my BP from dropping. The technicians running the test had to come over and tell me to stop moving. As soon as I made myself stop moving around then very quickly after that my BP dropped. Someone trying to do this test at home might think they were being still enough but might be moving around or fidgeting more than they realize.

    For an expert's description (as opposed to my rambling anecdote! :D) here's an extract from the Johns Hopkins document on Orthostatic Intolerance (Full document here - PDF file):

    I'm not at all trying to say that everyone out there needs to get a tilt table test. I'm just saying that this home testing may not reveal anything for a certain subset of OI patients.

    I hope this was not too much of a tangent from the original post!
  16. xchocoholic

    xchocoholic Senior Member

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    Hi floydguy,

    Thanks for explaining that. It makes sense that you just have a higher threashold. Stairs or lifting anything makes me totally winded. And I don.t know why but sometimes, very rarely, i'm fine. This symptom was really bad when I had low iron.

    Hi ahimsa,

    Thanks for explaining nmh so well. I never knew how that worked.

    Fwiw. Maybe this topic isn.t so off since we.re further identifying our symptoms. There.s a lot of info on me/cfs but not a lot of details.

    Tc .. X
  17. xchocoholic

    xchocoholic Senior Member

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    I'm getting brain dead but I think this explains our differences. I only copied in the first paragraph. This article is definitely important for us though ... tc ... x

    http://www.cfids.org/archives/2003rr/2003-rr2-article01.asp

    Fall 2003

  18. floydguy

    floydguy Senior Member

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    My problems are much more in the immune system. For starters, I have an NKC activity of 2.
  19. xchocoholic

    xchocoholic Senior Member

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    I was just thinking that this explains the exercise / heart / dysautonomia relationship in me/cfs.

    I was impressed that perckerman thinks pem is from our dysfunctional hearts. I.ve been thinking that pem was the result of insufficient blood supply but he said it better than me. I have a lbb that was originally diagnosed as a mitral valve prolapse in 1992. My cardiologist doesn.t think it.s responsible for my oi but maybe he.s wrong. :eek:

    I'll have to look up nkcells. My docs haven.t discussed this with me.

    Tc .. X
  20. November Girl

    November Girl Senior Member

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    My GP had me lean against a wall to do this. She didn't want me to fall down! We only checked the BP after a few minutes - not the heart rate. I'm tempted to try another one at home.

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