1. Patients launch $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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Study comparing Anorexia Nervosa, CFS and healthy controls! -Trudie Chalder an author

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 14, 2010.

  1. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    72
    u.s.a.
    great, count me in for this stuff. once in the while if I really focus and edit I can write a mean letter, am happy to do that when more is better otherwise prefer to support others doing it.

    sunshine don't get me going....this is why I didnt minor in women's studies, thinking about discrimination too much just gets me burning and that can be counter-productive for me if I stay in it too long...but the right amount is motivating
    but yea the irony of that exercise thing is, I, like many others, LOVED to exercise, hell I probably did it too much, maybe I got that overtraining type of cfs in part, but anyway, thats what has really gotten my goat when docs or anyone tries to tell me to do more of it or get over the anxiety around it, they don't know how much I miss it and the only reason I gave up trying to jog bike or swim is the awful flareups that would ensue afterwards, you hit your head against a brick wall enough you learn to knock it off, its not worth it, and sometimes I still push it too far if I go into denial when not flared up, did that with wii fit at first. I am just grateful I can walk a lot, but even so I am getting osteopenia.....!
     
  2. Sunshine

    Sunshine Senior Member

    Messages:
    208
    Likes:
    2
    UK
    Discrimination by health care professionals is against codes of conduct which can be a dismissable offence, including loss of license to practice in certain circumstances. It's important
    NHS 'professionals' who discriminate against vulnerable groups of people in the health care setting, are challenged by quoting them from words that exist their esteemed un-soiled mouths. If a student nurse in year 1 at college knows how to behave, then 'Prof'd' Trudie Chalder does too even if her blinkered belief system is making her eternally walk into walls whilst apparently acting as an academic guide.

    The fact Chalder is a female who targets other females infuriates me, yet psychologically her choice of prey is predictable if you consider the origins of someone with such entrenched beliefs as herself and the other nutty Professor she co-authors anti CFS propaganda with.

    Chalder's musings on CFS are impressively prolific, yet are doomed to the dustbin when the curtain falls on the biopsychosocial view of CFS, a view that is only seen in sharp focus by a handful of denialists. If only she had stuck to writing about science instead of hefty works of fiction, her intelligence would not have been wasted on decades long flawed theories that helped no one with neuro immune disease.
     
  3. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    Ad for study

    I saved this ad for the research at one stage - it was on the http://www.b-eat.co.uk/ website (I don't have an eating disorder - it either came up in a search or somebody highlighted it on a forum/list somewhere):

     
  4. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    Actually, this is how I knew about the ad:

     
  5. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    OK, leaving aside the point already noted that they didn't have a proper chronic illness control group, what do these findings amount to? Do they have evidence that the claimed emotional processing differences account for the illness? It doesn't sound like it:

    So, at best, they have a possible 'association', and they don't even seem to claim any causal link, let alone provide any evidence for one (in the abstract at least). Even in its own terms, this research doesn't appear to amount to much. I struggle to see a good scientific reason for publication.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    5,369
    Likes:
    5,846
    Thanks for letting me know.

    I might try and sort out a few more things arround the house, and then get back in contact with CBS. Nice to know there's no urgent hurry though.

    That sounds like a good idea awol, but I might see how this first thing goes before I decide to try to do any more. I don't know how reliably I'd be able to contribute to anything. Good luck with it all though.
     
  7. Marco

    Marco Old blackguard

    Messages:
    1,382
    Likes:
    1,060
    Near Cognac, France
    Here's a paper looking at Distress Tolerance in HIV patients and its interaction with life events and impact on coping behaviour, symptomology and disease progression.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2567911/

    High or low Distress Tolerance is described as an individual difference. Unfortunately no control group was used which may have indicated whether of not HIV patients as a group differ on the measure of distress tolerance although it appears that, as a group, HIV patients show a high level of depression compared to healthy controls. . The paper does discuss the content of the Distress Tolerance Scale (but unfortunately does not detail the full list of the 15 items on the scale).

    Included in the discussion is the frank admission :

    "The principal limitation of this study is the cross-sectional design, which prohibits the assertion of causal relationships or the specification of the directionality of the effects. Thus, it is possible that higher levels of depressive symptoms or poor health habits are not consequences, but instead cause decreases in distress tolerance. In this case, our data suggest that distress tolerance may be a legitimate target for treatment, particularly in patients with depression that is persistent or not responsive to treatments. A second limitation is that the measures used in this study were based upon self-report and are therefore vulnerable to the biases of that methodology."

    By the way, if anyone feels that they may have an issue with 'low distress tolerance' - here are some useful coping methods :

    http://docs.google.com/viewer?a=v&q=cache:hXlc05PUTC0J:borderlinechat.com/storage/dth1.pdf+distress+tolerance+strategies&hl=en&gl=uk&pid=bl&srcid=ADGEESiiQBgXcH4xwmLafFPBm4EUs8lUgqNCvElwaae3-vPZU433rS8eghxzF5XmRw6AXjF8XlAWy2Koz3zg-41gaqPFK_sX1JuC0Wv5Ls0PWjPvApfMhg079xQlTQF00iQte6p2OEgs&sig=AHIEtbQnqQ-W5P8EoSIjCB0opMFAgM7dUA


    As for responses, I very much doubt that the intended readership for the Chalder study would listen to or care for any discussion that is not either supportive, points out minor methodological issues or proposes an alternative psychological theory. In fact, if I interpret this 'theory' correctly, those with 'low distress tolerance' (i.e. us) might be expected to over-react to this study rather than 'suck it up' or shrug our shoulders like normal people and would most likely respond in an inappropriate, over-emotional manner, personally attacking the researchers, citing conspiracies etc.

    Damned if we do and damned if we don't.
     
  8. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    979
    Likes:
    479
    Noosaville, Aust
    Exerpt from Wikipedia on Anorexia

    http://en.wikipedia.org/wiki/Anorexia_nervosa#Causes


    Still can't rule out organic cause for AN. Does some of the above sound familiar?
     
  9. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    72
    u.s.a.
    "As for responses, I very much doubt that the intended readership for the Chalder study would listen to or care for any discussion that is not either supportive, points out minor methodological issues or proposes an alternative psychological theory. In fact, if I interpret this 'theory' correctly, those with 'low distress tolerance' (i.e. us) might be expected to over-react to this study rather than 'suck it up' or shrug our shoulders like normal people and would most likely respond in an inappropriate, over-emotional manner, personally attacking the researchers, citing conspiracies etc.
    Damned if we do and damned if we don't."

    haha thats what I'm sayin' Marco
    thanks for all the interesting info everyone
     
  10. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    I haven't seen this study but sometimes one can point out fairly major methodological issues.

    And even pointing out some issue that don't completely refute the study means others learn from them and can critique a theory better. Or take such issues into account when designing studies.

    An example I am more familiar with: thousands (or more) of clinicians worldwide can genuinely believe that GET and CBT based on GET has been shown to make a big difference in physical functioning, is safe, etc. Generally, if patients (incl. professionals who are patients) don't challenge such theories, the theory can grow and can eventually become "evidence-based". So I think it's very important when we can to put criticisms on the record. Although in this case, it's not so easy as on first look, there is no mention of a letters to the editor (and a search of the site for letters didn't show up anything).
     
  11. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    72
    u.s.a.
    good points Dolphin, I love finding everyone on line so smart and trying to make a dif w/cfs/me. I definitely think we should try to figure out strategies to change things in the med system.
    I am just thinking of my bad experiences talking to some health care practitioners, thats where i feel damned either way sometimes, fortunately have a respectful primary doc right now but somtimes one of his nurses I can tell is skeptical about me, she likes to find "teachable" moments and tell me stuff like life is too short to worry about ie how HRT will effect me, should just go for it....yea so I tried the low dose estrogen again (would have anyway) and now am in a scary flare, grrrrr, I am sure she would think I am imagining some of the side fx.....oh well, I guess what else can we do but speak up and just let the chips fall where they may.
     
  12. Marco

    Marco Old blackguard

    Messages:
    1,382
    Likes:
    1,060
    Near Cognac, France
    We're on the same page Dolphin.

    I haven't seen a response of your that wasn't calm and well reasoned but also challenged the underlying assumptions and highlighted the methodological shortcomings. This is how it should and is what convinces neutral observers.

    Without seeing the full paper and accepting that there may be no opportunity to comment at present, I few things struck me that are open to challenge:


    • The unreferenced assumption that 'difficulties in processing emotional states' are implicated in ME/CFS.

    • The association of ME/CFS, described in ICD 10 G93.3 as a neurological disorder with AN, described in ICD 10 F50.0 as a mental an behavioural disorder, as both being conditions “characterized by physical symptoms, yet cognitive behavioural models suggest that emotional processing difficulties contribute to the aetiology and maintenance of both.” The cognitive behavioural model 'suggestion' being unproven.

    • The cross-sectional nature of the study precludes the ability to assign causality.

    • With respect to CFS the findings include : CFS patients scored higher on a sub-scale measuring difficulties in distress tolerance; were more likely to judge themselves by external standards etc, CFS patients showed a non-significant trend towards having maladaptive beliefs regarding the experience of having negative thoughts and feelings and revealing these emotions to others.

    • In summary, in contrast to AN patients, no findings are reported in which CFS patients differed significantly from healthy controls.

    • As regards those findings were scores were non-significant, but in the 'expected direction' the exact scale used to measure distress tolerance is not stated. However the standard measure for Distress Tolerance is the Distress Tolerance Scale, a 15 item self-rating Likert type scale. It is not stated how many items or which items constitute the sub-scale on which CFS patients scored higher.

    • The Distress Tolerance Scale has been used to study distress tolerance in a number of populations (e.g. HIV patients, smoking cessation clients) but from the perspective of distress tolerance as an individual difference that may mediate responses to life events, coping behaviours and treatment outcomes. It is not clear that a rationale has been established to associate distress tolerance with a clinical patient group. It is assumed that test-retest reliability has been established for the Distress Tolerance Scale however it unclear whether the scale has been validated for use in a group of patients suffering from a chronic organic illness, i.e. to establish whether distress tolerance measures remain stable previous to and after the onset of chronic illness or whether difficulties with distress tolerance result from chronic illness. It is unclear the extent to which distress tolerance mediates responses to life events and the extent to which life events determine distress tolerance.

    • No measures of dispersion are stated for any of the scales. Therefore it is not possible to determine if CFS patients scores were closely clustered around the mean or if the mean score was affected by outliers. If the former, the scores for all CFS patients do not differ significantly from healthy controls. If the latter, the majority of CFS patients will have scored close to or identically to healthy controls. In either case, the findings do not support any assumptions that CFS patients, as a group' differ significantly for healthy controls on any of the measures.



    • Given the above, the study conclusions, as below, are not supported by the findings.

    “Differences in emotional processing are present in AN and CFS compared to HCs, with some disorder-specific variation, and may be associated with greater clinical symptomatology. These findings support current explanatory models of both AN and CFS, and suggest that emotional processing should be addressed in the assessment and treatment of individuals with these illnesses.”
     
  13. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    Thank you very much for your kind words.

    Wow, that's great. I didn't mean to put any pressure on you, just was worried that a statement might discourage others in the future.

    You sound like a knowledgeable, intelligent person who can use the lingo - just the sort of person who can be useful to write or help with letters (I know not everyone might be in to writing letters themselves but "editors" and people to make observations are useful, etc).
     
  14. Marco

    Marco Old blackguard

    Messages:
    1,382
    Likes:
    1,060
    Near Cognac, France
    Hi Dolphin

    I didn't feel under any pressure, I just wanted to clarify that I wasn't advocating no response to these papers, just well considered ones.

    I admit I was also intrigued to find out what was behind this latest 'catastrophizing by another name' theory so had been doing a little reading around andhaving done that, some obvious questions emerged. BTW, It only 'seems' that I know what I'm talking about.
     
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    Ok.

    Well you did a good job. I don't know your background but my education was interrupted by the illness (didn't even get to finish one degree in Maths). But with letters, one can "hide" your lack of knowledge a bit - it's not like a Viva (oral exam) where one is tested on anything brought up.
     
  16. Calico13

    Calico13

    Messages:
    52
    Likes:
    9
    I can't really comment on the complexity of the study, but as someone who suffered from anorexia for many many years, I've always wondered if there was a connection. I got sick first, then diagnosed with EBV within a few months. A few months after that is when the anorexia and weird controlling behaviors started. I've since been OK, but I still consider myself a recovering anorexic because I truly feel you never get over it. During times where I am stressed out, I can easily slip back into those nasty mindsets.
     
  17. Dolphin

    Dolphin Senior Member

    Messages:
    6,865
    Likes:
    6,131
    That's interesting - thanks for sharing.

    However, my initial reaction is that the illness can often put a strain on one's mental health and any existing frailities can be affected. Or something new triggered. However, the vast vast majority of people don't have anorexia (at least, I've seen no evidence whatsoever in literature or from lots of people have come across) so I'm not exactly sure it's the same thing as what the authors are referring to. Just my initial reaction. I hope to get and read the paper at some stage and might have a better idea what is being talked about.
     
  18. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    266
    Long Beach, CA
    Quick, pa, hold me back; Im a-fetchin to whump somebody upside the head!


    Wheres the citation for this? Its insidious the way they make these unfounded statements as though theyre a given, and build from there.

    What a load of horse-hockey. This crapola just gets more blatant and more far-fetched. Definitely a job for the ME/CFS anti-defamation league. Too bad it doesnt qualify as hate speech; it should. It has, and continues to, cause us very real harm. And then they cry poor me when they get angry mail from patients.

    I hate to think of Trudie Chalder being turned loose on anorexia nervosa patients, either. That [insert female animal of your choice] is a piece of work.

    Thanks to those who are coming up with appropriate ways to respond. I'm just blowing off steam so I don't burst. I get so sick of these people hiding behind psuedo-science to tell lies about us. And as someone with respect for science, I hate to see the way they sully it with this worthless garbage.
     
  19. oceanblue

    oceanblue Senior Member

    Messages:
    1,174
    Likes:
    343
    UK
    Yes, this garbage is so painful and science in this area is a charade. On the bright side, it's very good for the careers of those that publish, and a nice little business for the journals too. What: help for patients, finding out the truth? don't be so naive.
     
  20. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    The scientific research world looks more and more like welfare for PhDs; as well as a career building program. Do quality and results not matter? Who oversees these programs? Are there ever any reviews on what research is actually advancing knowledge?
     

See more popular forum discussions.

Share This Page