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Are we missing many people by diagnosis of exclusion?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Horizon, Dec 3, 2016.

  1. Horizon

    Horizon Senior Member

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    I find it frustrating that the guidelines mandate that ME/CFS patients cannot have another disease. Many of us have multiple co-morbid diseases and I understand the difficulty in pinpointing patients but you can have one disease and if it does not explain the symptoms of ME/CFS or if that disease is in remission how can they possibly blame that disease as the source of your problems?

    Is there any effort to get rid of the diagnosis of exclusion? It seems too simplistic to say you cant have any other fatiguing disease.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    I'm sure it's perfectly possible to have ME along with other fatiguing conditions. I guess there are 3 reasons for 'diagnosis of exclusion'

    1. Because there isn't a biological diagnostic test yet, so the only way to diagnose ME is by symptoms which mostly can occur in other conditions as well, so those conditions have to be considered too and tested for to eliminate them from consideration if they are not present, ie by exclusion.

    2. If someone has another fatiguing condition, it's important to identify it because there may be a treatment available that will at least deal with that aspect, if not with the ME
    And it might turn out that once the other condition is treated, they didn't actually have ME at all but had been misdiagnosed, or it may become clearer that they have ME as well.

    3. For research studies a clearer picture of ME can be found if they don't include people with other conditions as well that might confuse the picture.


    But of course for an individual it's important that their ME is taken into consideration in treatment along with anything else they have.

    Not sure if this is what you were meaning.
     
    Last edited: Dec 3, 2016
  3. eafw

    eafw Senior Member

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    Which guidelines and diseases (and what country) are you thinking of ? Even here in the UK someone with other conditions will be diagnosed with "CFS" or even ME-proper despite the presence of other conditions. Perhaps if they are suffering something else that is severe - but treatable - then the focus might be shifted there, and maybe doctors will do that if they think "CFS" is a wastebasket diagnosis so will prefer to tell the patient it's something else ?
     
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  4. halcyon

    halcyon Senior Member

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    Yes, that was what SEID was all about.
     
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  5. justy

    justy Donate Advocate Demonstrate

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    I think there is a big difference between co morbidities and misdiagnosis. For example I think its unlikely one could have MS and M.E, or Lupus and M.E. in these cases the M.E diagnosis would be a misdiagnosis, thyroid conditions and Lyme disease are a grey area - you could only have Thyroid disease and be undertreated. Medicated and if properly treated would feel much better and the 'M.E' would disappear. However many people with M.E have thyroid disease as a comorbidity.

    Lyme may be a trigger for M.E, or one might have just Lyme and be misdiagnosed with M.E.

    POTS, MCAS, EDS H are all possible co morbidities with M.E.

    The other issue is that PWME who are long term ill - say 20 years or more, start to develop other issues, and often begin to fail normal blood tests - I don't think this means they don't have M.E, but may technically no longer meet the NHS NICE criteria. This is the situation I am in, plus I am gaining more co morbidities as the disease progresses.
     
  6. Horizon

    Horizon Senior Member

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    I think if you have an autoimmune disease or any "fatiguing" illness but it is in remission and you still experience the symptoms of ME you can have both. It becomes trickier to diagnosis a person who has ME and MS but I think it is possible and shouldn't be ruled out.
     
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  7. justy

    justy Donate Advocate Demonstrate

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    Why and how do you think this is possible. M.E is only available as a diagnosis of exclusion.
     
  8. Horizon

    Horizon Senior Member

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    Yes, but it should not be. Can't someone have cancer and AIDS or any other combo of illnesses. Why can't one have ME and another illness? If that illness cannot explain the symptoms of ME which pretty much no illness matches our level of extreme exhaustion, PEM and other symptoms than I think it is very reasonable to say you have both, especially if your other fatiguing illness lets say anemia is in remission or at normal levels but your symptoms remain the same.
     
  9. Dechi

    Dechi Senior Member

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    Not everyone thinks ME is a diagnosis of exclusion. Dr Hyde specifically diagnoses ME by detecting brain anomalies via SPECT scan and brain mapping. In his view, and he is not alone, if there are no brain anomalies, there is no ME. Now, if there are brain anomalies, you still probably have to rule out other illnesses, so if that's what you mean, then ok.
     
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  10. Horizon

    Horizon Senior Member

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    I think the problem is that there are many sub-types and so being so exclusive in definition is going to eliminate large chunks of sufferers.
     
  11. Dechi

    Dechi Senior Member

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    Not necessarily. Once you've ruled out ME, it doesn't mean the person isn't sick. It just means you need to keep searching for the cause of it. Putting a tag of ME on someone who has another illness is not helping. There might be treatments available for what they have, so it is mandatory to keep searching and digging until you find it.
     
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  12. Horizon

    Horizon Senior Member

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    I think the problem is that many that are being ruled out potentially also have ME and so they will be on an endless hunt for something else and will not find it.
     
  13. Dechi

    Dechi Senior Member

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    Yes, that is a possibility, since there are no accepted way to diagnose for ME.
     
  14. alex3619

    alex3619 Senior Member

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    But you haven't ruled it out by using an exclusionary diagnosis. You have only found that you cannot diagnose it. Some patients will also have ME. I think that when we have the PEM blood test a lot of these questions will become moot.

    Right now we know of one patient with HIV who fails the 2 day CPET with a bad reaction that is typical of ME. I suspect they have HIV and ME, its just that we cannot diagnose ME currently with our limited definitions.

    As for exclusionary conditions I think many, including doctors, do not understand what that means. You can have an exclusionary condition and have a diagnosis of ME if:

    1. Its being treated but the broad symptoms do not go away, its not just about fatigue, or
    2. The symptomology of the other condition does not match the ME symptoms, and ME is still the only viable diagnosis that matches those symptoms.

    I would also like to add:
    1. The patient fails a 2 day CPET in a manner consistent with ME, or
    2. The patient has a clear history of PEM. The only other condition I have seen claimed to have PEM and I am not sure there is a confusion between exercise intolerance and PEM, is primary biliary cirrhosis, and I am not sure about that either.

    Its probably possible to have ME and any other disease. The prevalence of such comorbidities may not be the usual though.

    For example, from what I have read, and recently I read something from someone else who found the same data, its rare or very rare for anyone with ME to get atherosclerosis. Heart failure, valve failure, myocarditis, yes; atherosclerosis, no. In fact I only knew of two who did, and both were smokers.

    Its an issue of failure to diagnose because of exclusion, which means that many patients will get bad advice or no help at all. Its just not easy to work around this, though I suspect that will change fast in the next few years given how many new investigatory tests are under development for ME.
     
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  15. taniaaust1

    taniaaust1 Senior Member

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    well that is probably better then then getting something which is treatable as being missed esp when there is no current test for ME and no good treatments.
     
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  16. Horizon

    Horizon Senior Member

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    I think both suck because you are either getting no treatment or mistreatment but still better to know what you are actually dealing with.
     

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