The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Prof Jonathan Edwards & patients' journal editorial: ME/CFS is a solvable biological problem

Discussion in 'Latest ME/CFS Research' started by Kyla, Apr 28, 2016.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598

    Hey...I recognize those names !

    A big thank you to @Jonathan Edwards ,@Simon and @Marco for a great editorial.

    excerpt:
     
    Last edited: Apr 28, 2016
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  2. Cheshire

    Cheshire Senior Member

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  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    oops didn't realize I had missed another person on PR. Sorry Marco I will add to the original post
     
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  4. Simon

    Simon

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    The biological challenge of myalgic encephalomyelitis/chronic fatigue syndrome: a solvable problem
    - Fatigue: Biomedicine, Health & Behavior - Volume 4, Issue 2
    Open access
    Jonathan C.W. Edwardsa, Simon McGrath, Adrian Baldwin, Mark Livingstone & Andrew Kewley

    Wow, didn't expect to see that for a while.
    Thanks especially to @Jonathan Edwards for being so willing to collaborate on a paper with mere patients; a lot of researchers would not dream of doing so.

    Thanks to @Marco, and the other co-authors too.

    We felt it was time to make the case for biomed research, aiming to summarise the most promising research, while acknowledging its limitations. And we hope it will encourage just a few new researchers into the field.
     
    Last edited: Apr 28, 2016
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  5. A.B.

    A.B. Senior Member

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    This is very well written and comes just at the right time (when research funding is about to be increased)!
     
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  6. Simon

    Simon

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    Thank too to Phoenix rising. We would never have met without PR, we wrote the paper using a private forum for discussion, and other PR members played key roles too (it wouldn't have happened without @Scarecrow for one)

    We live in three different countries and have still never met, but it shows what can be accomplished when patients are give the tools (PR, the main forum, a private sub-forum for discussion), and a researcher - @Jonathan Edwards is willing to judge patients by what they can contribute, not who they are.

    Huge thanks to @Mark and @Kina
     
    Last edited: Apr 28, 2016
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  7. JohntheJack

    JohntheJack Senior Member

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    Great work Jonathan, Simon, Adrian, Mark and Andrew, and thanks very much.
     
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  8. Simon

    Simon

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    So the paper summarises the most interesting studies (inc 2-day exercise challenge, changes in gene expression after moderate exercise, PET scan indicating microglia activation), sets out some possible general models, and proposes some important practicalities inc better infrastructure/cohorts, stress-testing, replication, exploring immunological, autonmic and CNS factors). then concludes

    Conclusion

    In summary, much more biomedical research into ME/CFS is urgently needed to provide hope for improved treatment. Nobody can claim to know at what level the key disorder of physiology occurs, although various levels of brain function appear to be involved. There may be several etiological subgroups, which may require different management. Prognosis is poor and the impact of current care is limited. We now need a more concerted effort for ME/CFS.
     
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  9. daisybell

    daisybell Senior Member

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    Fantastic stuff!
     
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  10. A.B.

    A.B. Senior Member

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    One thing that I think is missing from the list of practicalities is the importance of tracking symptoms and repeatedly measuring the same things over a longer period of time. Knowing what distinguishes good from bad days/weeks/months seems pretty important.

    It's also theoretically possible to miss important abnormalities by not measuring things over time. If all patients undergo fluctuations in symptoms, the abnormality across the patient sample may simple average out to normal levels.
     
    Last edited: Apr 28, 2016
  11. deleder2k

    deleder2k Senior Member

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    I take my hat off. Thank you so much! This is simply brilliant.
     
  12. Bob

    Bob

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    :) Nice touch...
     
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  13. adreno

    adreno PR activist

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    Well done!
     
  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Wow you guys, this is one of the best papers I have read. Especially I felt your sections "potential models" and "practicalities", brought some thoughts on the table that haven`t touched the paper much before. I will mail it around to some hospitals, politicians and so on :thumbsup:
     
  15. deleder2k

    deleder2k Senior Member

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    I am very impressed about this. I stole some of your ideas and sent them to the Research Council of Norway to suggest ME/CFS studies that the council should prioritise.
     
  16. Gemini

    Gemini Senior Member

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    Timely and excellent!

    Perhaps NIH's Dr. Nath would include it in his seminar series and ME/CFS Study planning.
     
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  17. Sean

    Sean Senior Member

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    Nice work. :thumbsup:
     
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  18. aimossy

    aimossy Senior Member

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    Love this. Thank you!
     
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  19. Simon

    Simon

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    Thanks both.

    The aim of the paper is to provide a 'way in' to biological mecfs research for researchers who might be interested but were overwhelmed by the vast literature of mainly unconfirmed findings, or those who doubted there was anything of merit in biological research.

    The paper doesn't have firm conclusions about mechanisms - that's the point, we need more and better research to find out. The idea is that highlighting the most promising research, some potential mechanisms and some ways forward will give prospective researchers a handle on the field. All that's needed now is for a whole load of researchers in relevant fields to read the paper. It's open access to make it as widely accessible as possible.
     
  20. Tuha

    Tuha Senior Member

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    @Simon do you know when we could start to see the first results/ confirmations of those potential models?
     
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