Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

What are seminal studies in ME research?

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

  1. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,890
    I was trying to explain the sentence in the paper
    Whereas for classical cardiopulmenary-muscular deconditioning, this seems precisely the opposite of what it supports.
    And for fear-avoidance loop, it's just as bad.

    In any case, I've mailed the corresponding author, and we'll see if they can clarify anything.
     
    Last edited: Jul 19, 2017
    MEMum likes this.
  2. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    @RogerBlack -- I think they mean "at first glance, the deconditioned and ME/CFS populations appear to do about as well as one another on the exercise test, which would seem to support the idea that they are similar... however..."
     
    MEMum likes this.
  3. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,890
    But these were not deconditioned controls.
    They were controls that diddn't exercise vigorously for 30 minutes a day, and were not in any way limited by their muscular condition.

    Above author has just replied, raising up the energy to read it.
     
    MEMum likes this.
  4. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Hmm. Yeah, good point, they're not really deconditioned in that case, are they? Keep us posted re: authorial replies.
     
    MEMum likes this.
  5. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,136
    Likes:
    3,825
    Bristol
    I'd like to know about deconditioned controls, preferably by Saturday ;)

    (NICE response)
     
    MEMum likes this.
  6. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,890

    The response. (from the corresponding author of the paper)
    So, it was not 'consistent with deconditioning as we find in this work' but 'consistent with deconditioning, but as we explain, only apparently and misleading'.

    And JaimeS had it. Thought it was best to clarify, as on a first glance otherwise, that sentence is very damning if you're reading it with a perspective of saying that CFS is purely deconditioning.
     
    MEMum, JaimeS, ljimbo423 and 2 others like this.
  7. Mel9

    Mel9 Senior Member

    Messages:
    434
    Likes:
    1,032
    NSW Australia
    The major problem with this study is the undefined term 'cfs'. It does not seem to mean 'ME' because there is no mention of post exertional malaise (PEM). So 'cfs' in this study refers to 'tired people' I think?
     
    MEMum likes this.
  8. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,890
    So, no, PEM is not wholly required, it's one criteria required of 8, of which 4 have to be met, in a way that does not predate the fatigue.

    http://www.cfids-me.org/cdcdefine.html - properly implemented, this will throw out a lot of 'tired' people.

    It specifically requires >6 months, a definite onset, a set of symptoms throughout that 6 months, and goes into exclusions.

    But yes, it does not absolutely require PEM at any time.
     
  9. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,307
    Likes:
    3,655
    The way i see deconditioning is that we can recondition once we have a treatment :redface:
     
    MEMum, Snowdrop, lemonworld and 2 others like this.
  10. cigana

    cigana Senior Member

    Messages:
    970
    Likes:
    783
    UK
    Yes but I think that just makes it all the more impressive that they were able to find so many unique proteins. Presumably there could be multiple CFS subsets to be found within the 738.
     
    JaimeS and Mel9 like this.
  11. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    PACEgate absorbed me for all of yesterday. Trying to report the facts without sensationalizing, but the actual content is pretty sensational in places. I can't change what actually happened! :confused:
     
    MEMum, slysaint, JohnM and 4 others like this.
  12. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,307
    Likes:
    3,655
    You report dispassionately, PACE published, backlash points made, lawsuit, fraud displayed, journal defends fraud. As long as you cite your sources your not sensationalizing, your reporting :)
     
    MEMum likes this.
  13. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    No one was sued for fraud, were they? Isn't fraud a legal and specific term?
     
    MEMum likes this.
  14. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,307
    Likes:
    3,655
    Doctoring their results by changing their thresholds, conflicts of interest, obtaining patient consent under false pretenses.
    I do wish they would be sued.
     
    Skycloud and MEMum like this.
  15. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Thanks again to everyone who helped out. Exercise physiology section done: I went for
    • Light (2012) --> changes in cytokines and gene expression post-exercise
    • Snell (2013) --> first second-day CPET study (so far as I know) -- interesting differences in VO2
    • Keller (2014) --> similar to Snell, but interesting in that they measured more variables and noted differences in the first and second day in the same patients
    • Vermeulen & Vermeulen (2014) --> Big differences between patients and sedentary controls re: 2nd day CPET
    • and... sigh... PACE.
    Shukla (2015) was in microbiome section.

    Mentioned and linked a bunch of others, but those were the ones where I chose to go into more detail.

    Re: our concerns via Vermeulen. I think we shouldn't say that the patients were deconditioned, but that they were sedentary. They exercised less than 1 hour per week! Moreover, they were recruited from a clinic that specialized in cardiac medicine, so there was a good chance that they might have had some kind of developing condition; they were careful to exclude a variety of medication-taking people, though: anything that could have affected pulmonary, cardiac, metabolic, etc.

    And still, O2 extraction at peak was found to be less than half of that of these ‘healthy’ controls.

    The Vermeulen study was also interesting because they included a fatigued cohort that didn't meet CFS criteria. A la that DeMeirlier paper, these patients' values seemed to be in the middle of Fukuda CFS and healthy controls.
     
    bertiedog, MEMum, Valentijn and 5 others like this.
  16. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Hey, can anyone locate the full Canadian Consensus Criteria? (not the medical professionals version.) The one that @A.B. linked -- and the one on MEpedia -- are the first 30 pages. It cuts off mid-word and of course, the references section is therefore totally absent. Can anyone dig through their personal archives to locate a full copy? Please check and be sure it's more than 30 pages...
     
    MEMum likes this.
  17. MEMum

    MEMum Senior Member

    Messages:
    413
    Likes:
    2,130
  18. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    ScottTriGuy and MEMum like this.
  19. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Source of that "of those infected, only 5% went on to develop ME/CFS" ?

    I feel like I've even asked this before, but is that ringing any bells for folks on here?

    [Edit: nm, I've got it: https://www.ncbi.nlm.nih.gov/pubmed/22316329]

    [Edit 2: DONE WITH IMMUNE system, whew!]
     
    Last edited: Aug 7, 2017
  20. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,822
    Mid-Ohio Valley, United States
    Done with neurological!!! :D :D :D
     

See more popular forum discussions.

Share This Page