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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Watch CFSAC meeting online Monday 9-4 EST May 10

Discussion in 'General ME/CFS News' started by citybug, May 7, 2010.

  1. Dolphin

    Dolphin Senior Member

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    I'm not sure there needs to be a maximum font size once people accept that it doesn't have to be in the rules for a moderator or anyone else to complain about how it is used in a particular instance. I don't think the rules should have to be as detailed as a country's constitution for example.

    I'm see this as a constructive discussion also.
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    well, I would like to get back to the original topic.

    I went back and listened to the testimony again. And I think we have been a little unfair to Unger.

    Now, it has been a couple of days since then, so let's see if I can remember why I say that.

    First, she said they are re-examining the definition, focusing on what objective biological markers might be used instead of list of symptoms.

    When asked about subgroups, under the the criteria, they are looking at it. "Stratification" she called it.

    She admitted more cooperation with researchers is needed, even admitting they don't have some of the specialties that are needed.

    And there is more, I just can't remember.

    Tina
  3. Dolphin

    Dolphin Senior Member

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    The thing is that the criteria are so bad, they shouldn't be used as a starting point.

    Why should "I don't get much done because of my mood" (not exact quote) and that sort of statement count as showing a person has CFS-like symptoms and disability. It is just asking to include people who don't have the condition. The subgroups that have been found in previous studies using this definition are things like fat group/not fat group - the subsets don't tell you much about proper CFS.

    So for example, if a person ticks yes for any of these questions, they qualify under the "role emotional" criteria (as disabled) (the underlining is in the questionnaire)
    Even if they tick, "No, not limited at all", to all of these questions (physical functioning subscale):

  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    OH, and they are developing their own bio bank to follow the progression of the illness.

    Tina
  5. spindrift

    spindrift Plays With Voodoo Dollies

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    Yes, I have been going way off topic. I will open a new thread.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I must agree with Tom that there is absolutely no excuse for Unger's continued support of Reeves criteria. Also indefensible is the fact that absolutely nothing about the "CFS" program itself has yet changed.
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Actually, I didn't catch her explicitly saying she supports the Reeve's criteria. From what I understood, she says they are looking at forming an objectively based criteria. So she must not be too attached to it.

    What I heard her say was she was involved in forming the criteria because just asking about fatigue did not seem to include others that seemed to have the illness. (how they can know that these people have the illness, I don't know. Seems circular reasoning to me.)

    What I heard her stand by, asked by Jason, is the figure. She stands by the figure. But they are looking at getting objective measures to define illness.

    Now, correct me if I am wrong, folks, I just checked again, but the CFS diagnostic criteria put out by CDC now does not say anything about emotional problems. I know a different standard was used for research. And that is a crying shame. It is bad science, for sure.

    But that should have no bearing on clinicians diagnosing CFS appropriately. On the CDC Web site, it says major depressive disorder has similar symptoms but is a different illness. "Diagnosis of any of these conditions would exclude a definition of CFS unless the condition has been treated and sufficiently and no longer explains the fatigue and other symptoms." (I know a certain internist, who shall remain nameless, who needs to read this.)

    Don't get me wrong, I think CDC has lots of splainin to do. There is no logical reason why a private lab was able to find in two years what CDC should have found in over 20 years of research. But I don't know how much of that can be laid at Unger's feet. And maybe they are headed in the right direction now, although too slow, even in government time.

    Tina
  8. Orla

    Orla Senior Member

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    Hi Tina,

    If she stands by the figure she is standing by the definition in practice.

    Orla
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Then why did she say they are re-examining it?

    Tina
  10. Cort

    Cort Phoenix Rising Founder

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    There is no rule about font size :) but we do take into account context which is what Martlett was trying to point out. We don't have and don't want a rule to cover everything. We could have a rule in which you can use really big fonts if you're happy but not if you're posting something angry....but that obviously wouldn't work. We have to go by context sometimes.
  11. Dolphin

    Dolphin Senior Member

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  12. Dolphin

    Dolphin Senior Member

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    Question section could be good

    I just finished reading the minutes there. It looks like there will be a question section in future. That could be good and worth preparing for i.e. send in questions in advance. Hopefully they will also allow questions on the day.

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