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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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. Dolphin

    Dolphin Senior Member

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    T Chalder is Trudie Chalder, a "hardline" CBT proponent who has worked for around 20 years with Simon Wessely.

  2. awol

    awol *****

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    oh dear. Please, rebuttal team get to work. How do they reconcile the large number of "type A" ie. very determined and self-confident ME/CFS sufferers with the staement that "CFS participants were also more likely to judge themselves by external standards, endorse statements reflecting a tendency to put the needs of others before themselves, and present an outwardly socially compliant image of themselves whilst feeling hostile within."

    Also, if we are so outwardly socially compliant, why are we so vocally unwilling to accept the popular definition of ME/CFS as a behavioural or psychiatric disorder?
  3. Esther12

    Esther12 Senior Member

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    It's annoying not having access to the exact questions and scales being used for these papers.

    Seems really scummy to not have an control group suffering from a chronic health condition which does not have 'difficulties in processing emotional states' as a suspected aetiology.
  4. Dolphin

    Dolphin Senior Member

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    I agree.

    Good point.
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Brisbane, Aust
    Thinking laterally. It is a possible outcome of this research that AN and CFS have a biological link. Is it possible XMRV or some other similar biological agent is implicated in AN?

    During my early stages of CFS, prior to sudden onset, my partner of 4 years developed bulimia nervosa. It was one of the most frustrating periods of my life, watching someone I cared for doing something everyone, including me, considered completely irrational, time and time again.

    Even more recently a woman I had been seeing for about six months has been almost bedridden with a strange stomach ailment for some months. I had to end the relationship because of my own health. But I wonder now.
  6. biophile

    biophile Places I'd rather be.

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    Even then, the chronic health condition should be something which can affect the patient's emotional processing via organic pathology, like some neuroimmune disorder.
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi awol - You nailed it. Bye, Alex
  8. Esther12

    Esther12 Senior Member

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    Thanks. There was talk of drafting a letter about the last Reeves piece similar to this. I got started on things, but then had to stop to do some home DIY stuff that had been planned in advance. Were you involved? Do you know if it's still going on and if it would be worth me getting my papers back out? Ta.
  9. Dolphin

    Dolphin Senior Member

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    I offered to help. CBS hoped to do something (we corresponded immediately off-list) and I offered to help if he did something. That was 17 days ago. It would be worth following him up e.g. with a PM or even on the thread. If in the meantime he has decided not to do something, another letter would certainly be good. Or there might be room for two letters. But basically I have no other news. Nobody else contacted me off-list with anything. There is still no rush - it's not like newspapers where one has to get in pretty quickly - but the momentum could be lost.
  10. Dolphin

    Dolphin Senior Member

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    There could be links with almost anything. Or perhaps a ME/CFS person could cause AN in contacts in a few cases. But for me, they seem quite different.
  11. awol

    awol *****

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    Hi Esther12,

    As writing these sorts of rebuttals is the specific purpose of team 5 in Project ENOUGH!!! are you interested in being included in that effort? In that way you would be part of a group of people with a known interest in this sort of activity. The hope is to grow the group and continue to add areas of expertise. Let me know.

    best,
    awol
  12. oceanblue

    oceanblue Senior Member

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    Scummy indeed. I read the original Fukuda CDC case definition recently and was surprised to see it insist that healthy subjects alone could never be and adequate control group for CFS. Clearly this bunch of researchers were not paying attention to the Fukuda paper.
  13. biophile

    biophile Places I'd rather be.

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    Let's assume this study is valid, for the sake of argument, a big ask I know. Someone raised an interesting point on another thread: a major confounding factor in psychological research, how patients have been poorly treated in a dominating climate of hostility and disbelief.

    It should not be surprising that after years of denigration, some patients have become more submissive and don't have the energy to assert themselves properly: in the words of this study's authors "more likely to judge themselves by external standards, endorse statements reflecting a tendency to put the needs of others before themselves, and present an outwardly socially compliant image of themselves whilst feeling hostile within."

    For many of us, how we are judged by others isn't just some superficial annoyance to ignore, it is a matter of survival, for without the support of family and society we can end up struggling to earn an income until the "big crash" finishes us off and we end up on the street and/or starving to death in the gutter somewhere.

    Similarly, talk of "distress tolerance" is also meaningless without the context of post-exertion symptom exacerbation.

    As for ME/CFS vs AD, I think I read somewhere that many ME/CFS patients with gastrointestinal symptoms end up being falsely accused of having an eating disorder. This actually happened to me a few years back.
  14. akrasia

    akrasia Senior Member

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    Very well put. The only thing I'd add is that the people who show up at Kings are those who are not plugged into the patient community, the truly desperate, probably quite ignorant of the history of the illness and its treatment.

    Basically, attendance and compliance with their protocols might be predicated on a certain kind of "learned" docility. The therapeutic strategies of cbt and get applied to m.e. are fundamentally undermining because they don't respect the accuracy of individual perception.
  15. xrayspex

    xrayspex Senior Member

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    u.s.a.
    What angle are you guys taking on the letter writing, I just sort of skimmed here,are you sending it to the journal or researchers?
    In my city they are doing a PEM study which is cool and not this b.s. although they were big on the meditation dali lama research here for fm in the past which is fine for any illness but I just dont like that to be their big guns per se for cfs.

    Geesh, mental health system damns you if you do or don't speak up, I tended to argue sometimes with practitioners when they don't get it in the past and then you get labelled as oppositional or depressed or anxious if you don't kiss their ars, ya can't really win either way when they think they hold the answer and yr just supposed to comply. This is really like some creepy operant conditioning thing, culturally women are expected to be more accommodating and also the medical system wants you to be obedient, everything works to try to condition that but then yr passive per this study? and yet if you aren't passive you are disagreeable and risk a bunch of judgements that way.
    Well they are right about one thing, I have gotten more emotion built up trying to express myself to disbelievers after 20 years of this nonsense, I think thats the real study, the one I want to be in on, is the PTSD or other damage done from being discredited disbelieved and marginalized. Of course people in other minority groups have experienced this for years, now I know how much it sucks.

    anyway, I am a certified social worker, just work parttime but would be happy to put my name and credential letters on a good letter, backchannel me if I can help, I am not always the most articulate one to write the main letter cus I have all these emotional issues haha actually cus I am stupider from the cfs and couldnt afford the lesser IQ points....
  16. Dolphin

    Dolphin Senior Member

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  17. xrayspex

    xrayspex Senior Member

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    so what do you think would be best approach if no letter to editor?

    hey awol I will try to find team 5 at the other site too, I would like to add my john hancock to stuff when numbers help
    one motivating factor to keep my job so can be on the other side of the thin blue line for this sort of stuff and try to add a voice from someone in the mental health field to stop the insanity!

    I really do want to do a qualitative study or expose of some sort to bring the point out to the masses and to the mental health and medical field of the damage that has been done the last 20 years (in part cus of cdc purposeful misguidance and cessation of viral studies) and how the effects can be just like any other time in history when a group is treated in that marginal and abusive way, seems to me that given the circumstances some of us are actually very resilient and strong not to lose our sense of self in all of this
  18. awol

    awol *****

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    there are ways to do rebuttals as their own mini articles in some forms of journals. We need to look into that.
  19. Sunshine

    Sunshine Senior Member

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    Wessely's colleague Trudie Chalder is in a GP traning video proclaiming that CFS patients are ''scared'' of activity and this is why CFS patients limit their activities due to fear.

    Break the cycle of fear and avoidance using CBT and CFS symptoms goes away and patients feel ''much better''........... she says.

    Chalder's recovery rate in CFS with CBT is 70%, an identical figure to Esther Crawley's (proponent of CBT & LP in child CFS).
  20. awol

    awol *****

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    thanks xrayspex. I will go add you.

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