1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Jason's Latest Paper on the Reeves / Empiric Criteria: Use of SF-36 Subsets

Discussion in 'Latest ME/CFS Research' started by Anika, Jul 18, 2010.

  1. Anika

    Anika Senior Member

    Messages:
    135
    Likes:
    1
    U.S.
    Leonard Jason and his team keep plugging away at the problems with the CDC Reeves / empirical definition and the cohorts it produces, a la Wichita and Georgia cohorts used in the CDC's XMRV paper.

    Some of the major criticisms related to the Reeves definition concern its choice of subscales of the SF-36, and cutoff scores on those subscales, to determine whether a person has the substantial reduction in activity to be characterized as CFS. It uses a score relating to emotions (versus physical or social functioning, for example) as one of the relevant subscales, and uses arbitrary cutoffs, among other things.

    In the abstract cited below, Jason says the Role Emotional subscale had the least sensitivity and specificity of all the subscales. Other findings also sound interesting.

    Does anyone have access to the whole paper? I'd be interested in how else their findings differ from what the CDC is doing.

    The problem is, the CDC should have done something like this before it published any results using the Reeves criteria.

    http://www.ncbi.nlm.nih.gov/pubmed/20617920
    Disabil Rehabil. 2010 Jul 9. [Epub ahead of print]

    Measuring substantial reductions in functioning in patients with chronic fatigue syndrome.
    Jason L, Brown M, Evans M, Anderson V, Lerch A, Brown A, Hunnell J, Porter N.

    Center for Community Research, DePaul University, Chicago, IL 60614, USA.

    Abstract
    Purpose. All the major current case definitions for chronic fatigue syndrome (CFS) specify substantial reductions in previous levels of occupational, educational, social, or personal activities to meet criteria. Difficulties have been encountered in operationalizing 'substantial reductions.' For example, the Medical Outcomes Study Short Form-36 Health Survey (SF-36) has been used to determine whether individuals met the CFS disability criterion. However, previous methods of using the SF-36 have been prone to including people without substantial reductions in key areas of physical functioning when diagnosing CFS. This study sought to empirically identify the most appropriate SF-36 subscales for measuring substantial reductions in patients with CFS. Method. The SF-36 was administered to two samples of patients with CFS: one recruited from tertiary care and the other a community-based sample; as well as a non-fatigued control group. Receiver operating characteristics were used to determine the optimal cutoff scores for identifying patients with CFS. Results. The SF-36 Role-Emotional subscale had the worst sensitivity and specificity, whereas the Vitality, Role-Physical, and Social Functioning subscales had the best sensitivity and specificity. Conclusion. Based on the evidence from this study, the potential criteria for defining substantial reductions in functioning and diagnosing CFS is provided.

    PMID: 20617920 [PubMed - as supplied by publisher]
  2. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    342
    UK
    Thanks for posting this, the whole idea of using the Role Emotional subscale is a bit daft, since it measures not doing things because you don't feel up to it emotionally, rather than because you are tired.

    You could try requesting a copy from Leonard Jason: I asked him for a paper recently and he was good enough to send me a copy.
  3. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
  4. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    342
    UK
    That seems to be different paper, about implementing the Canadian criteria, rather than refuting the use of SF-36 RE scale for implementing the Reeves empirical criteria. Maybe a more interesting paper though!
  5. Anika

    Anika Senior Member

    Messages:
    135
    Likes:
    1
    U.S.
    Leonard Jason's flurry of papers

    Thanks Oceanblue and Angela for your suggestions and the reference to the other paper and thread (which I'm also following).

    Jason has been VERY busy - in the Revised Canadian Definition paper that Angela refers to, he cites 5 other papers (including the SF-36 subscales paper) of his from 2010 alone- 2 papers look to be still in press.

    From their titles, it looks like Jason is trying to further de-legitimize the Reeves / empiric criteria, and to operationalize the Canadian criteria to make them more meaningful for research purposes. Way to go, Lenny!
  6. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    Thanks for this Anika,

    yay Lenny indeed.

    Cohort definition is so critical right now. And experts listen to other experts, not patients, especially on things like definitions. Dr Jason is dealing with one of THE critical issues right now. 5 papers this year - fantastic.
  7. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Ah - right I see now. Yes- a LOT of papers! This is very good.
  8. biophile

    biophile Places I'd rather be.

    Messages:
    1,350
    Likes:
    3,993
    Cheers for Lenny Jason!
  9. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    342
    UK
    Yes, Case Definition is probably the most important (and definitely the most tedious) aspect of ME/CFS research. Thank God people like Len Jason are prepared to work at this particular coalface - looks like he's producing some great finds.
  10. Anika

    Anika Senior Member

    Messages:
    135
    Likes:
    1
    U.S.
    Jason & group have 15 papers this year


    Manipulation of the Case Definition has been probably the greatest harm done by the CDC (with help from some overseas miscreants). Without someone like Leonard Jason and his group, where would we be to challenge it?

    I was looking for other Jason papers and came across this link to articles by Jason and his group at DePaul University:
    http://condor.depaul.edu/~ljason/cfs/publications.html
    Most of them don't seem to be available online, at least for now.

    I think I counted 15 publications so far this year (including those "in press" - I guess not yet formally published, but awaiting publication). Mostly, though not all, research studies.

    LJ always comes through. He's one of my heroes in CFS research. Most researchers are the lab kind - which we also need - but without the toil in the this area, all research languishes for lack of comparability.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    A few from over the years are in the library. (Unfortunately, it hasn't been re-stocked in a while)
  12. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    342
    UK
    Case Definition has become one of the main battlefields of the clash of Biospychosocial vs Biomedical views of CFS. Those who see ME/CFS as simply one end of a spectrum of fatguing illnesses with a psychological basis like their CFS definition drawn broadly. It seems the CDC is now firmly in this camp.

    In a recent Journal of Disability Policy Studies paper responding to Jason's criticisms of the CDC empirical case definition, Bill Reeves wrote (well, the whole piece was more of a printed tantrum than a normal article):
    "The reality of CFS research is that many medical and psychiatric illnesses (currently termed exclusionary conditions) have symptoms indistinguishable from CFS".

    This is presumably why the CDC chose to include the SF36 RE (Emotional Role) sub-scale in it's criteria. Jason pointed out the case of someone with Major Depressive Disorder who scored the maximum score of 100 on the SF36 PHYSICAL function scale (ie no physical problems at all) yet because of a low Emotional Role score was diagnosed with CFS by the CDC criteria.

    Leonard Jason is definitely one of those who believes that ME/CFS can - and should - be distinguished from many other disorders. Interestingly, the latest CDC community survey (the best way to measure prevalence) using its empirical criteria gives a CFS rate of 2.5% while Jason's Chicago community survey, using the Fukuda criteria, came up with a rate of 0.4%, a rate over 5 times lower. Likewise in the UK, Simon Wessely estimated CFS at 2.5% - which works out at an implausibly high average of 45 cases per GP (Community Phsyician).
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    Three of the 9 are actually empiric criteria studies (Boneva et al, 2007; Reeves et al, 2005 and Nater et al, 2006) but only one is marked as such. They are all from the one cohort. They really should only have used one. I might bring that up with Lenny. It shows that people are not very good at spotting empiric criteria studies (Lenny probably got the postgrads to compile them).
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    SF-36 Part of empiric criteria (Reeves et al., 2005) http://www.biomedcentral.com/1741-7015/3/19

  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
  16. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    I'm not sure how many people understand ROC. Basically, you want to score as close to 1 as possible. 0.5 would be the same as a random cut off (i.e. useless).

  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    This gives you the thresholds they suggest

    This gives you the thresholds they suggest:

  18. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    342
    UK
    Reeves's rationale for using SF-36 Role emotional scale to diagnose CFS

    Lenny Jason has provided good evidence for not using sf36 RE to select for CFS. But I was amzaed when I came across this quote in the 2007 Reeves paper on prevalence of CFS in Georgia which found a rate of 2.5% using the empirical critieria - it's from the Discussion section, explaining why they used the Role Emotional subscare:

    WTF does that have to do with CFS? They say they are implementinng the International Study Group recommendations, themselves a clarification of Fukuda, and both of these talk about substantial activity reduction as a result of fatigue, not emotional impairment.

    I'd always assumed they come up with a better argument than this for using RE. Surely even the CDC themselves don't buy this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    6,472
    Likes:
    4,754
    Well spotted. Might be worth putting as a comment - comments don't have to be anything fancy.

    I've now a link in my signature to a petition complaining about these criteria.
  20. Sunshine

    Sunshine Senior Member

    Messages:
    208
    Likes:
    2
    UK
    Do we know of any other Psychologist who is on our side? Is LJ actually the only psychologist in the United States (if not the world) who produces research supporting us?

    If so, that's a chilling testimony to the profession.

See more popular forum discussions.

Share This Page