1. Guest, the 'News in Brief' for the week beginning 22nd February 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

PEM is associated with greater symptom burden and psychological distress in patients ... with CFS (2019) May, Fletcher, Klimas et al.

Discussion in 'PsychoSocial ME/CFS Research' started by strategist, Dec 19, 2019.

  1. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,469
    Likes Received:
    35,046
    https://www.sciencedirect.com/science/article/abs/pii/S0022399919304672
     
  2. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    2,846
    Likes Received:
    15,932
    Location:
    Cornwall, UK
    Not very impressive, Nancy Klimas.
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    30,757
    Likes Received:
    146,623
    Location:
    UK
    dangermouse, DokaGirl and MeSci like this.
  4. Andy

    Andy Committee Member & Outreach

    Messages:
    12,130
    Likes Received:
    87,297
    Location:
    Hampshire, UK
    Sci hub, https://sci-hub.se/10.1016/j.jpsychores.2019.109893
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,726
    Likes Received:
    47,224
    Location:
    UK
    what's going on(?) one step forward two steps backwards:arghh:
     
    brf, Simone, dangermouse and 6 others like this.
  6. Andy

    Andy Committee Member & Outreach

    Messages:
    12,130
    Likes Received:
    87,297
    Location:
    Hampshire, UK
    So the "loPEM" cohort included those who said that they didn't have PEM.
    That seems problematic to me - is there any reason it wouldn't be?
     
    Hutan, Simone, dangermouse and 5 others like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    30,757
    Likes Received:
    146,623
    Location:
    UK
    Surprise surprise. If you divide a group of Fukuda diagnosed CFS patients into those that have significant PEM and those who don't you find the ones with PEM are sicker, less able to work, and more depressed, probably as a result of being sicker and less able to work. :banghead:

    Why that leads to the conclusion that psychotherapy is the answer I don't know. Seems like a cop out to me. How about better care, better symptomatic treatment, less sigma, better access to disability benefits etc.

    The only good thing from this is it demonstrates that nobody should be using Fukuda criteria for research.
     
    Hutan, brf, Simone and 27 others like this.
  8. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

    Messages:
    120
    Likes Received:
    886
    No, but as she's second from last I'm guessing she just allowed some hack access to her cohort. Which brings up the point of...is it a good idea to refuse access to other 'researchers' when we always hear from the you-know-whos that nobody wants to get into the field? I am not interested in defending her but I sort of almost feel that we can't have it both ways. Also, I wonder if it's possible that she doesn't have the power to refuse access even if she thinks her cohort or samples will be used to produce results favorable to psychs.
     
    Simone, dangermouse, Sarah94 and 4 others like this.
  9. Andy

    Andy Committee Member & Outreach

    Messages:
    12,130
    Likes Received:
    87,297
    Location:
    Hampshire, UK
    From the Discussion section.
     
    Simone, dangermouse, ukxmrv and 2 others like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    30,757
    Likes Received:
    146,623
    Location:
    UK
    I just read this bit again. It's outrageous. How dare they suggest that it's psychological factors that make PEM worse and stop us engaging in activity. That shows a complete lack of understanding of PEM. I note they use references from White, Chalder et al as key sources of ideas.

    Bah humbug.
     
    brf, spinoza577, Simone and 36 others like this.
  11. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    640
    Likes Received:
    2,863
    Really poor use of nine people’s time. Any funding and salary time devoted to this should have/could have been devoted to science-based science.
     
  12. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,469
    Likes Received:
    35,046
    The problem seems to be that the authors don't recognize that the ideas of White, Chalder etc ideas make no sense.

    Also, you know what would fix all this psychological distress? Effective treatment of the illness. ;)
     
    Last edited: Dec 19, 2019
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,286
    Likes Received:
    16,522
    This is the problem of the word 'malaise', I think. Outsiders coming to the area assume it's psychological malaise.
     
    MEMarge, dangermouse, EzzieD and 8 others like this.
  14. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    1,167
    Likes Received:
    16,985
    These remarks all seem very pertinent to me.
     
    Simone, MEMarge, dangermouse and 9 others like this.
  15. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,735
    Likes Received:
    46,164
    Location:
    Canada
    Uh, yes, the thing that literally means "more symptoms of greater intensity" also means more symptom burden because it's literally what it means. Also: greater volume is associated with more space to hold things. Being confused by basic definitions is not a good look here.
    Literally the opposite. The very last thing that should be done with a high degree of PEM is doing more things. Good grief that's like suggesting that the more broken a bone currently is the more intensive physical rehabilitation should be.
    Ya think? I mean it's literally something ME patients have been saying for decades and is also the most obvious common sense explanation but sure, it "could" be that more fuel leads to more intense fire.

    I hope there is a good explanation for Klimas' name on this nonsense.
     
    brf, spinoza577, Simone and 14 others like this.
  16. Trish

    Trish Moderator Staff Member

    Messages:
    30,757
    Likes Received:
    146,623
    Location:
    UK
    I think they also describe PEM somewhere in the paper as an increase in fatigue symptoms.. Don't have the energy to go back and check.

    I got the feeling this was a paper and computer exercise. No actual patients given the opportunity of spending time with the researchers explaining how they experience PEM.
     
    Simone, MEMarge, dangermouse and 8 others like this.
  17. Aslaug

    Aslaug Moderator Staff Member

    Messages:
    606
    Likes Received:
    3,663
    One of my textbooks has "post exertional fatigue" as a symptom of CFS. Patients will have an increase in fatigue lasting one or two days. Oh if only.
     
  18. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    889
    Likes Received:
    6,048
    Seems to be a University of Miami paper. However Klimas does have her name on it. At least three recent papers where she has had her name on have been pretty poor in my opinion. This one, the 23andMe genetic predisposition one (uses 23andMe miscalls), and the Modelling one (no validation data set, very few hormone measurements in actual data).
     
    Anna H, Simone, MEMarge and 10 others like this.
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,726
    Likes Received:
    47,224
    Location:
    UK
    so is this implying that people who have ME (CCC) as opposed to Fukuda CFS are the patients with 'mental health issues' (?)
    an attempt to return to the 'status quo' before the 'resurgence' of the use of M.E.(?)
     
    MEMarge, dangermouse, Lidia and 4 others like this.
  20. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    1,917
    Likes Received:
    11,814
    Haven't read the paper in detail, but they shouldn't be using Fukuda in the first place, if the CDC has endorsed the IOM/NAM definition that requires PEM as the hallmark symptom of ME/CFS.

    Or, has the CDC not made up it's mind about dropping Fukuda? It's bizarre to have two differing case definitions in this one institution that has by some indications modernized its attitude and policies around ME. What's going on?

    And, some in the study say they don't have PEM! Then they don't have ME, or "cfs". This study supports the debunked PACE trial: have a heterogeneous group of study subjects including those without ME ("cfs") but include depression, and who knows what else, and make recommendations for pwME based on studying people with different illnesses.

    From the study: "psychological distress could, however, be a consequence of symptom burden" Brilliant to conclude that PEM - ie. feeling desperately dreadful, even more so than usual, would be upsetting. And, somehow counseling is supposed to make pwME feel better when they have these symptom increases. Or, maybe think them away!

    I agree,@Sly Saint, certainly two steps back.
     
    Simone, MEMarge, dangermouse and 8 others like this.

Share This Page