ME/CFS Springer Protocols

Discussion in 'ME/CFS research' started by Jonathan Edwards, May 15, 2025.

  1. Deanne NZ

    Deanne NZ Senior Member (Voting Rights)

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    @DMissa I just read the post on X suggesting there may be free copies made available. Do you think S4ME could get a free digital edition?
     
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  2. Trish

    Trish Moderator Staff Member

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    But what would we do with it? If we copy the articles onto forum threads we would break copyright.
     
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  3. DMissa

    DMissa Senior Member (Voting Rights)

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    As I understand it as of today, I will have some sort of free digital access link. Just waiting to know how shareable it is.

    I suspect communal access for a website would be out of scope.

    When I know I details will communicate it
     
  4. Deanne NZ

    Deanne NZ Senior Member (Voting Rights)

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    I can see that being an issue in a forum thread. But what if it was held as a more discrete “library resource” that could be read & discussed in private chats with a select few members. Would that maintain copyright?
    Those who are in the private chats could then reference it in other forum threads when relevant.
     
  5. Trish

    Trish Moderator Staff Member

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    I'm struggling to understand what content there would be that would be of interest for forum members to discuss in little private groups. The idea, as I understand it is the document is a collation of articles by people researching ME/CFS describing the research methods they are using.

    Surely those methods, such as 2 day CPET are already described in other more publicly available documents too. Each author will describe their method when they publish their research.

    Maybe I have missed the point. It's hard to tell when I am not prepared to spend hundreds of pounds to buy a copy to find out.
     
  6. Deanne NZ

    Deanne NZ Senior Member (Voting Rights)

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    It is more likely that I am assuming there is more value to the content than what is represented in the chapter abstracts. If the same information is available elsewhere then you are correct that there is no justification in buying it. There was talk of free copies being made available and that’s why I raised the question again. So, as you say, if the methods are described are publicly available elsewhere, there is no point having a complicated use protocol in order to comply with copyrights.
     
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  7. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    I don't think it would be particularly helpful for general availability here. The details are directed to lab researchers. Having the abstracts and knowing the book is available is probably all that's needed.
     
  8. Nightsong

    Nightsong Senior Member (Voting Rights)

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    I've (very briefly) skimmed through all of the available chapters. As would be expected from a Springer Protocol it is intended for lab researchers. For those unfamiliar, an example:
    Generally discussion on S4ME doesn't reach this level of methodological granularity. The two chapters that would provoke some discussion are Chapter 1, on diagnosis, written by a retired New Zealand GP - it is a little muddled in places - an example of that:
    To a lesser extent there might be some discussion about Chapter 10 - the two-day CPET method doesn't seem well-adapted to more severe pwME and there might be a discussion on how it would provoke PEM in many & that the method should include cautions around that.
     
    Last edited: May 22, 2025 at 2:06 AM

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