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Emerge Australia Health and Welfare Survey results

Discussion in 'General Advocacy Discussions' started by Simone, Sep 30, 2018.

  1. Simone

    Simone Senior Member (Voting Rights)

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    Woolie, Chezboo, Esther12 and 16 others like this.
  2. Sean

    Sean Senior Member (Voting Rights)

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    Nice graphic, with no real surprises in the data.
     
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  7. Milo

    Milo Senior Member (Voting Rights)

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    It is an interesting study, with a good number of respondants (600+). The limitation is that it is a self-report study and that some of the answers are applicable only to Australia with its unique health care system,social service structure, vast geography, acceptance of the illness, and such. Access to care varies widely in normal times depending on whether one lives in a large urban area or in a remote village, and ME is not a ‘normal thing’ in the health care system (at least where I live).

    One of the question I cringed most pertained to what disease patients were diagnosed with. The answers varied between ME, CFS, Me/cfs or SEID. I note in another part of the study that a number of patients self-diagnosed. The answer to that particular question tells absolutely nothing, does not inform on the actual illness each patient may have.

    See, it could be interpreted in many different ways. The least educated patient (or those who feel it’s all the same, and they got a point)- will answer whatever- some could even answer chronic fatigue. And I do not believe there is a way to differenciate what illness each participant has.
    The other way to see it is what does the physician know about the minute differences betweeen the nomenclature, and how many drs in Australia (or anywhere in the world) would know the differences in nomenclatures and definitions? GP’s are not likely to know. Specialists, well, i cannot name a single specialist physician in Australia. What do they know and do they have a case definition of each on a cheat sheet in their office as they see patients? My best guess is no.

    Since we have no biomarker, and patients have a laundry list of symptoms, it would be very easy to miss the intricacies of each definition. It means that a SEID patients may well have ME and a CFS patients may well have SEID but then move on to have a different disease in 3 years time.

    Does it really matter to ask the patients what case definition they have been given on diagnosis? Because my GP said I have chronic fatigue. I would rather say I have ME, since the CF word is cringe worthy. But i am just as sick as anybody else, EBV trigger, never got better, PEM and all. At this point, if you have been sick for over 2 years (but of course you can be diagnosed way earlier than that), cannot work, have PEM, then chances are you belong in the 17 millions pool of patients awaiting for science discoveries.

    We simply do not have the expertise in Canada for physicians to make a precise dignosis, because we do not have biomarkers and because physicians give an opinion of what they feel the patient may have based on their own knowledge or exeprience or both.

    So that question in my opinion is divisive and pointless.
     
    Last edited: Oct 13, 2018
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Some of these people were getting disability payments. It might have been interesting to have also asked total incoming money to compare people's circumstances.
     
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  9. Milo

    Milo Senior Member (Voting Rights)

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    What do you mean by total incoming money? I assume the amounts given post illness are total including disability benefits
     
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    No, this is not the case.
    That's why I posted the wording for the question:
    Also later they say
     
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  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Milo

    Milo Senior Member (Voting Rights)

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    But those are not treatments! At best, they are symptom management. Otherwise, they are self-management. If a typical physician read all this they will think we are all better by resting and pacing, and it is not the case.
     
    Last edited: Oct 15, 2018
  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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