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Was IOM charged to come up with new name?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 21, 2015.

  1. Nielk

    Nielk

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    The IOM report states that the following are the charges from HHS to the IOM panel:

    • conduct a study to identify the evidence for various clinical diagnostic criteria for
    ME/CFS using a process with input from stakeholders, including practicing clinicians
    and patients;

    • develop evidence-based clinical diagnostic criteria for ME/CFS for use by clinicians,
    using a consensus-building methodology;

    • recommend whether new terminology for ME/CFS should be adopted; and

    • develop an outreach strategy for disseminating the new criteria nationwide to health
    professionals.

    They were charged to decide whether there was a need for a new terminology but, were they within their scope in creating a new name for ME/CFS?
     
  2. alex3619

    alex3619 Senior Member

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    I think it was widely interpreted that they were. What is surprising is that they did. Sure we needed to get rid of CFS, but a new name was premature as we are very close (perhaps, this has been said again and again over the years) to getting a grip on the pathophysiology.

    If the label CFS was to be retired I think it would have been much simpler to go back to ME, whether you think its accurate or not, and simply acknowledge that in a few years all names might be obsolete. Why create a totally new label and intend to retire it soon? Why go to all the effort of getting the name changed, and perhaps have it change world wide, and then have to do it again in maybe five years?

    Whether or not they were briefed to find a new name might be in the fine print somewhere. A directive for new terminology would easily include the name unless it were excluded by some part of the contract.
     
    August59, oceiv, shannah and 3 others like this.
  3. Nielk

    Nielk

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    The issue of multiple and changing names is an enormous problem for anyone trying to research a condition, including clinicians and care providers, as well as for those trying to maintain searchable databases.

    Myalgic Encephalomyelitis (ME) has a searchable history. ME will show up on its own or in combination with CFS (ME/CFS). What will show up in a search of Systematic Exertional Intolerance disease (SEID)?
     
    oceiv likes this.
  4. alex3619

    alex3619 Senior Member

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    Search engines will probably, over time, include them as synonyms. Just as you find CFS articles when you search for ME. Now in the deep future this might be an issue, but not in the foreseeable future. In any case the originating document, the IOM report, which will be public, clearly makes the connections.

    A much bigger problem is resistance to the new definition. Doctors have been diagnosing chronic fatigue as CFS and ignoring other symptoms, and most have probably ignored PEM, and just presume ME and CFS are the same.

    I am critical of the IOM process, but this does not mean we have to presume everything about the report is bad. With the right application this could work for us, though we do need to continue opposing the IOM process itself, or at least educating people about its limitations.

    In any case we were going to find this problem with any new name, and a new name has always been likely at some point. Its just that this is not the name we need.
     
    Last edited: Feb 22, 2015
  5. alex3619

    alex3619 Senior Member

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    One thing that has surfaced and been discussed over time is the issue of both false positives and false negatives. Many without diagnosable PEM should be diagnosed with SEID, and many with exercise intolerance or even depression but not PEM will also be diagnosed. This is a clinical problem and goes back to poor medical education. The IOM/HHS have to address this, and the clinicians guide will be critical.
     
    Last edited: Feb 22, 2015
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  6. Hip

    Hip Senior Member

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    I don't think it is beyond doctors and biomedical researchers to perform a boolean Google search when looking for ME/CFS studies or info.

    I always use a boolean search that includes the terms: myalgic encephalomyelitis, chronic fatigue syndrome, and the acronym CFS.

    To do this in Google, you can use the following boolean search string:

    "myalgic encephalomyelitis" | "chronic fatigue syndrome" | CFS

    The pipe symbol | denotes boolean OR. I have now also added "systemic exertion intolerance disease" to this search string, so it now looks like:

    "myalgic encephalomyelitis" | "chronic fatigue syndrome" | CFS | "systemic exertion intolerance disease"

    (I use text expander software on my computer to store and throw out these sort of search strings every time I need them).
     
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  7. oceiv

    oceiv Senior Member

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    @Hip Instead of the pipe symbol, can you just use the word "OR"
     
  8. Hip

    Hip Senior Member

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    Yes you can use OR, it will work just the same, but note that the OR needs to be in capital letters. Note also that you need to put any phrases in your OR statement in quotes.
     
    Last edited: Feb 26, 2015
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  9. oceiv

    oceiv Senior Member

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    @Hip Thanks. I do use "AND" in my searches, but not "OR." This is very helpful, considering how many searches I make about this illness and considering how the names keep piling up..
     
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  10. Hip

    Hip Senior Member

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    @oceiv
    AND is always implicit in any Google search, so you never really need to type AND. For example, if you perform the search: cfs AND enterovirus, this is exactly the same as searching for: cfs enterovirus.

    I can thoroughly recommend getting a text expander for your computer, to store all these medical names and terms connected to ME/CFS. For Mac, Typinator is an excellent text expander. There is also actually a built-in text expander on Macs that you can also use (in the Keyboard preference pane). For windows, see here.

    A text expander is a simple bit of software in which you define very short abbreviations for longer words or phrases, such that when you type in those short abbreviations anywhere on your computer, they get instantly replaced by the longer word or phrase. So for example you could set up "adr" as an abbreviation for your full address, so that every time you type "adr", your full address appears.

    I have now got hundreds of medical terms and phrases in my text expander. For example, when I type in "cv", it instantly throws out: coxsackievirus | echovirus | enterovirus. This sort of thing is very useful for rapid searching in Google.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    thanks. I had no idea how to search like that before.
     
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  12. oceiv

    oceiv Senior Member

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    @Hip I am going to look into to getting a text expander. This kind of program seems like it would help me on days when typing is difficult. I know the search engine is inferior to Google, but I usually use DuckDuckGo for medical searches. DuckDuckGo doesn't track searches like Google and other search sites do. More info here.

    I agree. It's one thing that the metric system isn't used here in the. Using inches instead of centimeters doesn't really harm people. But once again giving U.S. patients a different illness name than international patients does do some harm.

    I'm extremely new here, but I have to ask, has anyone reached out to @Nielk (the original poster of this thread) to see if he or she is ok?
     
  13. Hip

    Hip Senior Member

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    DuckDuckGo looks interesting. You should be able to use the boolean OR search on this, and in fact OR should work in most search engines.

    Another useful search function is the site-specific search, which focuses your search on just one site. For example, if you just want to search the PubMed medical database from within Google (or another search engine), then you just place site:www.ncbi.nlm.nih.gov in your search, and this will restrict your search to only the PubMed site. This is good for finding published studies. Or if you just want to search Cort Johnson's ME/CFS blog, type in site:www.cortjohnson.org (there must be no space between the colon : and the website name).

    I have put these strings in my text expander, so whenever I want to search PubMed, for example, I just type the abbreviation "pm" in the Google search box, and this instantly throws out the string site:www.ncbi.nlm.nih.gov.
     
    Last edited: Feb 27, 2015
    oceiv likes this.

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