Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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If you think about it, SEID is not too bad of a name

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Tired of being sick, Mar 25, 2015.

  1. Tired of being sick

    Tired of being sick Senior Member

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    Why?

    The medical community can longer use the GET theory..

    Doctor: Lets get you on a physical/occupational therapy program..

    Patient: You do understand what SEID means don't you?
    What part of "systemic exertion intolerance disease" do you not understand?

    This gives the SEID sufferer tremendous power.

    The medical community only had two outs to turn it around on the patient before SEID
    was adopted.

    And they were GET and CBT..

    Now they only have one!

    How about going full circle and rename it as
    SPMED or "systemic physical/mental exertion intolerance disease"!!?
     
  2. Tired of being sick

    Tired of being sick Senior Member

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    oops!

    I forgot the I in SPMEID
     
  3. Dolphin

    Dolphin Senior Member

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    Yes, I've also written letters for people in support of their disability claims. In these, I recall pointing out on occasion that though a person could seem reasonably healthy, the exertion of working full-time or close to it would cause all sorts of health problems.

    Systemic Exertion Intolerance Disease gets this across, I think: people (and their bodies) have a problem with being exerted. They need to be able to live within their own boundaries.
     
    Last edited: Mar 25, 2015
  4. Dolphin

    Dolphin Senior Member

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    I agree that it could help against being coerced to do things that someone feels could set them back.

    CBT for CFS is generally based on the scheduling of graded activity so one can argue against that also.
     
  5. Nielk

    Nielk

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    They will still push GET and CBT because they will claim that you have to build tolerance for activity. They will claim that with GET, you will slowly start to tolerate more and more. CBT will help you along to reach your goal.
     
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  6. Esther12

    Esther12 Senior Member

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    I'm not enamoured with the name 'systemic exertion intolerance disease', but I don't think that any English name is going to be great while we have such a poor understanding of the cause of patient's symptoms. Maybe some Latin would do the trick, but there's a trend against using Latin to name diseases now.

    I've seen people point out that the problem with ME describing a process for which there is not sufficient evidence is not insurmountable:

    Maybe some form of ME would be best if it was achievable, but I don't know if it is likely to be any time soon.

    I worry that some of the more heated opposition to the IOM report is partly because there can be less discussion of the problems with some of the bold claims made about our understanding of 'ME' as a biological disease. I tend to spend much more time and effort looking at and discussing problems with biopsychosocial claims about CFS, and largely I think that makes sense: I've got limited energy and this is the stuff that does the most harm, it makes sense to specialise a bit, the BPS stuff often has such basic flaws that little specialist knowledge is needed... but when lots of people take that view it can mean that not enough criticism is directed to the other areas of CFS research where exaggerated claims are made.

    I've always been a bit wary of some of the faith people have had in (some of) 'our' experts and things like the ICC, but I often haven't done the reading and research needed on a lot of the details here, and always present my scepticism as just being 'my opinion'. Some of that is laziness - I know that being more forthright will drag me in to a debate I don't really want to spend my time on. To me it seems that SEID and the IOM report could be a useful step forward from where we really are at the moment.
     
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  7. Dolphin

    Dolphin Senior Member

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    I heard one person (a parent) say with the name systemic exertion intolerance disease they would have been more aware not to push their child in the early stages.
    ---
    ETA: Found the quote:
     
    Last edited: Mar 25, 2015
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  8. Dolphin

    Dolphin Senior Member

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    I think it's unlikely some US government agencies like the CDC will accept myalgic encephalomyelitis on its own as the main name in the near future.
     
  9. Ember

    Ember Senior Member

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    Would the child have been included in the SEID criteria in the early stages?
     
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  10. lnester7

    lnester7 Seven

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    I would not meet the criteria at first, OI came on year 3 or so.
     
  11. Dolphin

    Dolphin Senior Member

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    I don't know. But that's a separate issue [criteria] from the name.
     
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  12. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I would not have met it at first. I did not have unrefreshing sleep, or overwhelming fatigue/greatly reduced activity, and I did not notice having PEM (though I might have found it had I know to look for it, not sure).

    I had OI from the start.

    Then again, lots of people don't meet Lupus or MS criteria from the first, either. I'm not sure there's a great solution to this.
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    They likely will. But will fewer people listen? Maybe we can hope for that.
     
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  14. Ember

    Ember Senior Member

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    If the child wouldn't have been diagnosed with SEID in the early stages, neither would the parent have been more aware not to push the child in the early stages.
     
  15. Dolphin

    Dolphin Senior Member

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    Some people will be diagnosed, some won't as with any criteria that are used. Those that do satisfy the criteria get the posited advantage that wouldn't necessarily come with other names.
     
  16. Ember

    Ember Senior Member

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    As a patient with mild ME, I would have fulfilled the ICC. But I wouldn't have fulfilled the SEID criteria until after I became disabled, i.e., until after the harm was already done.
     
  17. Dolphin

    Dolphin Senior Member

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    Again you're mixing up discussing criteria and discussing the name. This is a discussion about the benefits or otherwise of the name, not the criteria.
     
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  18. alex3619

    alex3619 Senior Member

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    SEID is not a great name. However the sad truth is there are, as yet, no great names. Only names that are often acceptable or unacceptable.

    There are big issues with the SEID criteria, mostly in my view about false negatives, but this is a separate question.

    I don't think many would disagree that SEID is better than CFS. That is pretty clear.

    I also don't think that many who treat SEID as a descriptor of the primary diagnostic criteria would disagree either, though many would almost certainly quibble about nuances. The main argument against SEID seems to be that SEID as a bundle of name and criteria is poor.

    What I predict will happen though is that in the minds of many this will be the case:

    SEID=CFS=CF=ME=Psychogenic

    That is the problem we have been facing for a long time. A new name does not alter that.

    What could change things is that all five major parts of the definition have measures that can be taken; an education campaign might finally get most doctors to understand the main symptoms ("No Timmy, its not fatigue"), and increased political influence might result in more research.

    All of these can happen with the label and acronym "SEID", or without it.
     
  19. SOC

    SOC

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    Agreed. Until we have an unquestionable biomarker, some of us may not meet any criteria early in the illness because we don't even know when the beginning of the illness really is.

    It's not all that unusual for patients in a number of illnesses not to meet the criteria early in the illness. They have "suspected" whatever, or "atypical" whatever until the known marker appears.

    For example, my MIL was told by a research prof that she didn't have ALS because she didn't have fasiculations at that time. What he meant was that she didn't meet the strict definition, not that she didn't have the condition, or wouldn't soon officially meet the criteria. Nevertheless, her neurologist treated her (as much as is possible with that horrible disease). She eventually died of ALS. No one questioned that she should be treated for ALS, the diagnosis just wasn't 100% certain in the early stages.
     
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  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    After gradually becoming sicker and sicker over three years, I plummeted. Then, my gynecologist said, "I think you have fibromyalgia or chronic fatigue syndrome, and I don't treat that." As I searched for a local doctor, I found a lady who used to run a CFIDS support group in the '90s. I asked her two things: Is there a doctor locally that knows enough to confirm a diagnosis? And When I feel the fatigue, should I push. I had already done lots of reading online. She said no, when you push you are doing more harm to yourself. If the disease was called systemic exertion intolerance disease, I would not have wondered.

    The couple of weeks ago I saw a post master I had not seen in over a year. She knew me from when I started getting sick and wen through trying to get a diagnosis while still trying to run a business. So, naturally, after not seeing me for a long while, she asked how I am.

    I told her, "Up and Down." And then I told her they have proposed a new name for my disease. "It's systemic exertion intolerance disease. That means my body systems dysfunction, causing debilitating symptoms from any exertion."

    By this time, two other postal employees were listening in. I said we don't know if the U.S. government will act on this name change recommendation.

    She asked again, "But how are you doing?"

    I said, "Good days and bad days. I have been doing good today, attended a meeting and running errands for a couple of hours. But tomorrow and the next day will likely be bad days where 'll end up sickly and in bed. it's because of what I did today. And do you know what I did today?"

    And one of the other post office employees said, "You exerted yourself."

    She got it. From the name and a one-sentence explanation.
     
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