Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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What are seminal studies in ME research?

Discussion in 'Latest ME/CFS Research' started by JaimeS, Jul 11, 2017.

  1. thegodofpleasure

    thegodofpleasure Player in a Greek Tragedy

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    Matlock, Derbyshire, Uk
  2. necessary8

    necessary8

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    @JaimeS how is this project coming along?

    I wanted to write a detailed guide for people who want to learn about ME/CFS, and a list of important studies is one of the key resources I wanted to include, but I personally dont have enough energy to spare for curating it over time. So a list made by you would be the best thing ever. But it seems that you haven't touched it much since the start, and it doesnt even have links to the studies that you did summarize. So is this project abandoned, or do you plan on making it work?
     
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  3. JaimeS

    JaimeS Senior Member

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  4. necessary8

    necessary8

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    Oh, excellent, thank you.

    I was refering to the first post in this thread by you, as I assumed thats where you'll edit in the further progress.

    The list you linked is very good, the only two important papers I see missing there are the random peptide immunosignature study by Lombardi, and the cerebrospinal fluid proteomics by Bregquist.

    So now, what about the future of this? Does MEaction has a place where one can check for the latest version of this? If not, can I suggest putting it in a Google Doc, and editing in future important studies as they come? Would be amazing to have one link you can refer to for an always up-to-date list. This is the main problem i generally see with those lists - they get outdated, and then you have to look for a new one. We really should have a list that gets dynamically updated
     
    Last edited: Nov 24, 2017
  5. JaimeS

    JaimeS Senior Member

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    The Bergquist is an interesting study, but in the end I only had so much space. :)

    It's a good idea! I'd suggest it should be revised every six months or every year. What may seem groundbreaking today may reveal itself to be pretty basic (or wrong) after the hype dies down. I ended up going through hundreds of references and cited 80+. When #MEAction suggested a summary doc I thought there was no way I could pare it down, but I ended up reducing the length of the 30+ pp doc to about 3 pp.

    There is someone who lists decent ME/CFS research without much qualification; I'll give that a search soon, I don't seem to have it saved yet (it's probably an open tab) right now.

    I'll add this as well: http://microbeminded.com/2017/10/18/a-letter-to-the-mecfs-research-community-doctors-patients/

    If your ideas aren't in one doc (they probably are!) you should do it, too. I was very busy when you made your initial posts, but in my superficial skim they looked promising.
     
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  6. necessary8

    necessary8

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    If maintaining it wouldnt be too much of a burden for you, having a full list along with the compressed one, would be amazing too.

    You mean my "ponderings on purinergic signaling" thing? It's a bit of a different format, I don't really intend on editing it in the future, instead I will post continuations. I've already posted Part 2
     
  7. necessary8

    necessary8

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    I just saw this, this is an amazing list as well. The only thing I might suggest is sorting the studies by release date - as it stands the order is a bit of a mess
     
  8. JaimeS

    JaimeS Senior Member

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    I mean creating one document and finalizing it. Creating a concise argument and putting it into document form.
     
  9. pattismith

    pattismith Senior Member

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    dry eyes can be part of the Dysautonomia syndrome, maybe it could explain why it is often present in CFS?

    it can be present in mitoD too :

    Secretory Glands All the glands in the body are part of the autonomic system; they are told to turn on or off by its signals. Consequently, dysautonomia can show various symptoms. There can be too much sweat or not enough. Dry mouth or drooling might be another typical symptom, or dry eyes and/or too much tearing. In the GI system, diarrhea or constipation are common symptoms.

    http://www.mitoaction.org/blog/dysautonomia
     
  10. Ember

    Ember Senior Member

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    The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings. In addition to the IOM report, the “General Information” section might mention the ICC considering that it defines ME as a complex disease involving profound dysregulation of the central nervous system and immune system, as well as dysfunction of cellular energy metabolism:
    The ICC has four criteria:

    • postexertional neuroimmune exhaustion (PENE pen′-e),
    • neurological impairments,
    • immune impairments, and
    • energy production/transport impairments.

    The 2-day CPET is the test given for PENE in the IC Primer.

    The #MEAction summary reads:
    It might add:
    The BMJ Best Practice document advises, by the way, that the ICC “symptom clusters are not organised by pathophysiological mechanisms, decreasing the value of these proposed myalgic encephalomyelitis diagnostic criteria” (p. 37).
     
  11. JaimeS

    JaimeS Senior Member

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    Yes, and there are other sections in the full document. Since each section in the original doc was longer, I was considering making each of them into an article.

    I went ahead and added the ICC to the long doc, thank you; though there are reasons I will continue to leave it off of the short summary.

    I also wouldn't advertise how expert the authors are by stating how many people they've diagnosed or what their backgrounds are. None of authors of other documents have introductions / accolades in the document, so that would stick out.
     
  12. Ember

    Ember Senior Member

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    The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.
     
  13. JaimeS

    JaimeS Senior Member

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    Fair enough. That was an attempt at describing the document while avoiding passive voice; my emphasis was on its scope, but I didn't want to say "9000 documents were examined" or "9000 references were included". :)
     
  14. Ember

    Ember Senior Member

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    Here’s a shorter version: “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness provides a literature review based on over 9,000 studies. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.”

    The IOM report also provides criteria, but unlike the ICC, these do not include immune impairments.
     

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