ME/CFS Springer Protocols

[Deanne NZ]

@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?

 

[Trish]

@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?

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

 

[DMissa]

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

 

[Deanne NZ]

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

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.

 

[Trish]

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.

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.

 

[Deanne NZ]

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.

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.

 

[SNT Gatchaman]

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.

 

[Nightsong]

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:

Phospho-4E-BP1 PBMC assay working lysis buffer: 0.1 mL Blocking reagent (stock solution 100x) from the Phospho4E- BP1 assay kit, 2.4 mL of Phospho4E-BP1 Lysis buffer (stock solution 4x). Mix gently. Prepare sufficient working lysis buffer for 40 μL/cell line tested

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:

Examination of the throat occasionally reveals “crimson crescents”. A number of patients will suffer from orthostatic intolerance, with associated POTS. A NASA Lean test or tilt table test can be performed to corroborate this strongly associated condition. The blood pressure can be very low, with associated pallor and a tendency to feel faint, particularly during these tests. Rapid heartbeat will often be associated. Fibromyalgia is also strongly associated with ME/CFS, revealing itself as extreme sensitivity to soft tissue pressure.

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.