Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Does It Matter What You Call It? Lay Beliefs for Overcoming CFS, ME, and PVFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 19, 2017.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
    AndyPR, Valentijn and Esther12 like this.
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Other interpretations are possible of this data i.e. that the names didn't have any causal effect and simply that different types of patients may end up with different labels.
     
  3. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    This is where they are coming from.

    However I don't accept that overcoming CFS/ME/PVFS is like overcoming obesity for example which is much more amenable to factors an individual can control and adjust.

     
    Last edited: Apr 20, 2017
  4. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
    AndyPR, Valentijn and Esther12 like this.
  5. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    The third factor is called external locus of control. However I think it is a mixed bag and not sure how much I would read into it at a group level.

    Fortunately we are also given the data for the individual questions.
     
    Effi, Snow Leopard, Kati and 4 others like this.
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I hate this sort of stuff.

    Poorly conducted studies to try to justify manipulating other human beings to try to make their beliefs more 'helpful'.

    They do also tend to ignore the fact that encouraging the view those with CFS have greater control over their health can have costs as well as benefits.

    I'd just been pm'd about an old White lecture I'd done a partial transcript of which was like this.

    I think this is the video:
     
    Last edited: Apr 19, 2017
    TiredSam, Effi, Hutan and 3 others like this.
  7. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
    What a 'duh' moment. ME/CFS criteria is more stringent than Fukuda CFS. How they were diagnosed obviously affects how serious their condition is.

    ....reading the paper, they go on to say that the more implicitly biomedical 'ME' may well be the reason behind people with "ME" taking it more seriously:

    You've got to appreciate a study that draws the conclusion that people with CFS are convinced that belief in a higher power has a significant impact on whether or not they'll recover, but people with post-viral fatigue don't.

    I kid you not:

    17. How much a person believes in God 2.19a 2.06b 1.76ab 4.47 .02

    First value: CFS
    Second value: ME
    Third value: post-viral fatigue
    (Last value is p value).

    Actually, this might be explained by the fact that people presume post-viral fatigue will go away regardless. CFS is chronic, and therefore requires some more divine intervention?

    ....they actually seem a bit befuddled about the way it all fell out. CFS patients are more likely to agree that they can shift their illness with determination, and ALSO more likely to say that they need lots of help and support (and that it's due to stuff happening in the brain, genetics, and god -- 'external' loci).

    Their befuddlement about the way this didn't quite seem to work is a breath of fresh air in comparison to the old hands at BPS. One can only hope they are aware that this isn't a tenable hypothesis.

    Their analysis of the old research wasn't bad, though.

    -J
     
    Snow Leopard and AndyPR like this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,811
    Full text at http://sci-hub.cc/10.1891/1559-4343.18.2.150

    This is very weird. They're asking random people (not ME patients) about their perceptions of a disease based on what the name is, and concluding that a less serious name should be used because random people think it sounds like something that's easier to control.

    It's all based on the premise that a disease that sounds easier control must be easier to control and even "overcome". On that premise, we should go back to calling MS hysterical paralysis :confused:
     
    Persimmon, MEMum, JaimeS and 12 others like this.
  9. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,435
    South Australia
    The authors views aside, it shows that there is strong bias amongst the lay public about whether self-reliance (willpower etc) is beneficial for overcoming the illness. In that sense it is useful.

    So far there has not been any prospective randomised trials testing whether there is any practical effect of choosing different names, hence any discussion of benefit or harm right now is purely speculative.
     
    MEMum, JaimeS, Dolphin and 6 others like this.
  10. NelliePledge

    NelliePledge plodder

    Messages:
    770
    Likes:
    3,487
    interesting - is there scientific evidence that obesity is controllable by individuals? I thought it has been found there are gut bacteria and genetic aspects
     
    JaimeS, Daisymay and ukxmrv like this.
  11. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,535
    Germany
    SBW said it best for me

     
  12. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,556
    This article actually empirically confirms what we've always suspected: referring to our illness as chronic fatigue syndrome trivialises it in the minds of healthy people - nothing a little willpower can't overcome!

    Actually, a lot of the stuff is sort of self-contradictory. You have to be self-reliant, yet at the same time compliant to overcome CFS!
     
    MEMum, Keela Too, JaimeS and 9 others like this.
  13. RogerBlack

    RogerBlack Senior Member

    Messages:
    883
    Likes:
    2,864
    While this may not be wholly false, In the UK, and as I understand the USA at least, this is not true.

    Clinicians do not discriminate between CFS/ME/SEID, and simply use the name most common at the time.

    At the very least, this would introduce the confounding factors of diagnosis stratification by age.
    However, if this is a a survey of random people, as I understand it is, the number of people who can cite the Fuduka criteria would be precisely zero.

    'What do you call it' seems to actually matter.
    I've been contemplating how to explain it better, and have come to the conclusion that Myalgic Enchephalomyelitis is probably about the best, because it's 'sciency'.
    Few people will understand it, it sounds a bit like 'multiple sclerosis', and the educated ones might pick up 'enchephalo' and feel good about themselves.

    On the other hand, If you tell them 'chronic fatigue syndrome', the immediate thought is not 'Oh, he's got some wierd disease, but 'I get tired too'.'
     
    Last edited: Apr 20, 2017
  14. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
    At this time, studies show that people who meet CCC criteria are on average sicker than those who meet Fukuda alone.

    In the US you are almost guaranteed to be diagnosed with "CFS".

    If you end up being diagnosed with "ME/CFS" instead, you are much, much sicker than the average "CFS" patient. You were so sick that the physician could not imagine diagnosing you with "fatigue" and went searching to find "ME/CFS". Or the patient did!

    The study here quotes Jason's study that found that physicians-in-training were most likely to have the impression that this was a serious illness overall. I'm simplifying a bit, you should read the original; it's cited here.

    Jaime
     
    MEMum, RogerBlack, Valentijn and 2 others like this.
  15. Webdog

    Webdog Senior Member

    Just to muddy the "Does It Matter What You Call It?" waters, a little anecdote (and apologies for all the acronyms)....

    I was diagnosed using SEID criteria. My primary care doctor wanted to give an ME diagnosis. However, my HMO (Kaiser Permanente) only allows a CFS diagnosis.

    So, it doesn't matter how sick you are or what criteria was used: you get a CFS diagnosis.

    CFS is it. There is no available diagnostic code in the computer system for ME, ME/CFS, or SEID. My doctor can enter ME as his diagnosis, but the computer system just auto-changes it back to CFS.
     
    IreneF, MEMum, slysaint and 8 others like this.
  16. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,133
    Likes:
    3,822
    Bristol
    It's funny how often we make completely different conclusions from the researchers. Yes CFS SOUNDS controllable. To an extent this is an illusion. An actual false illness belief. Pacing helps. Supplements help. But there's a lot of (bad) luck involved for the time being at least.

    Confirms that CFS is bad for advocacy. But I worry that if we just stop using it, the people who really need community won't know we likely have the same thing.
     
    MEMum, Dolphin, JaimeS and 6 others like this.
  17. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
    Despite that a specialist diagnosed me with ME/CFS, my charts say "primary immunodeficiency: IgA deficiency" because that's what my immunologist chose. He couldn't see putting "chronic fatigue" down because he knows what's up.
     
    MEMum, Solstice, Valentijn and 3 others like this.
  18. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Questions that show people would be blamed most for not overcoming the illness if it was called CFS (not all statistically significant)





     
    Last edited: Apr 20, 2017
    Valentijn, Esther12 and JaimeS like this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    This makes it sound like the so-called avoidant coping strategies caused the CFS. This was not a prospective study: the coping strategies were measured after the people were already ill: we don't know whether there were any differences before the people got ill.
     
    Last edited: Apr 20, 2017
    Cheshire, Effi, Valentijn and 3 others like this.
  20. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    I don't recall the study. I found the first one interesting. If there was a causal relationship, this would mean that encouraging patients to believe there was a psychological cause of CFS would cause higher levels of anxiety and depression, something mental health professionals and and indeed everyone should be trying to avoid.

    However there may not be a causal relationship.
     
    ukxmrv, Effi and Valentijn like this.

See more popular forum discussions.

Share This Page