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

[Dolphin]

I agree with you guys.

I have devoted quite a lot of my time over recent years trying to raise money for biomedical research in one way or another (as well as donating myself). Without as much biomedical research as possible, we'll continue to have to deal with endless psychological speculation. The more progress there is on a biomedical level, the more it reins in some of this psychological speculation, I think. There is basically no research good or bad in my country so the money goes to groups in other countries.

Another thing I try to do is challenge stuff - but I only have time/energy to do so much. The more psychological speculation particularly unjustified speculation and poor research, is challenged, the more it sends out a message to others that they need to tone themselves down. I think without it, people have started getting away with writing all sorts of rubbish in the area, like CBT leads to full recovery in a percentage of cases. We can't depend on others such as professional in the field to do it given they haven't been doing it much despite plenty of opportunities over the last 15 years.

 

[oceanblue]

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?

The primary quality control in science is peer review of published findings and funding applications. However, if the peers are all incompetent fools...

Peer review does work well in many fields e.g. much genetics research but it tends to be a bloody and messy process. In a way, the current battle over XMRV and CFS is an example of this in action. Researchers are even arguing over exactly which type of test tube to use to collect blood - and it's getting very personal too. But the point is scientists are furiously producing new research -and crtiquing others' new research - in a bid to prove who's right. Eventually, and probably before too, long there will be a definitive, accepted answer on the relationship between CFS and XMRV. This is so different to most ME reseearch where each half-baked study goes unchallenged and is followed by further dud studies referencing the earlier dross. Outcome: no progress at all.

Dolphin is right that we should challenge the second-rate research where possible, but the fact that this work falls to patients proves how the system has failed. Not that I am in any way depressed by this state of affairs...

 

[Dolphin]

The primary quality control in science is peer review of published findings and funding applications. However, if the peers are all incompetent fools...

Also for some relatively cheap psychological research e.g. questionnaire research, one might not need to go through much of a funding application process - there may be easy pots one can dip into or give the project to a PhD/Masters student or whatever.

 

[Calico13]

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.

Hmm interesting. I've come across quite a few people with eating habits similar to an anorexic, but I don't think they even realized what they were doing was weird. Perhaps you are right though and that's not true anorexia.

Perhaps the difference is that I first got sick when I was 16. The age of 16 is prime time for eating disorders to emerge, so maybe that was an easy target for my body/mind. The interesting thing about it though is that my symptoms were blamed on anorexia for years and years and years. I actually had to get chubby for a few months to prove to my doctor that it wasn't the anorexia causing the lightheadedness and heart problems.

I probably also should have included that I have POTS and not actual CFS, but I'm sure if I tried to get a CFS diagnosis I could no problem. I have to admit that everything stated in the results seems pretty accurate for me, then again I am a recovering anorexic as I said before. It never goes away and I just have to pretend it's not there.

 

[Esther12]

Hmm interesting. I've come across quite a few people with eating habits similar to an anorexic, but I don't think they even realized what they were doing was weird. Perhaps you are right though and that's not true anorexia.

I could end up not eating enough because of being too tired to cook, and not having to money for more convenient food too. When you're really broke it's easy to think that if you can go with out an extra meal that day it's worth doing so. I also normally wake feeling nauseous.

Since I got some extra disability benefits I've been up to four or five meals a day. For a while I thought this could be helping me feel better, but I've since had some extra nasty symptoms appear, so who knows.

I also think that people with chronic health problems can get very controlling about their bodies and diets. I'm too lazy to do this, but it seems to be a quite normal response from people with a range of illnesses and disabilities.

 

[Dolphin]

Thanks again for sharing.

Perhaps you are right though and that's not true anorexia.

I don't know enough about anorexia to know about true anorexia nervosa although I think that the loss of weight seen in some cases of ME/CFS isn't anorexia nervosa at all but due to difficulty swallowing, food sensitivities/intolerances, restricted diets, nausea, etc.

Based on what you said initially, my analogy would be with another condition like depression: ME/CFS brings on depression in some people; but one wouldn't say ME/CFS is depression or like depression in its thought patterns at its core - there are lots and lots of differences that have no been shown in research (it might have been preferable if the effort could have been used in other ways). So just as some cases of ME/CFS going on to have depression doesn't mean ME/CFS is similar to depression so because ME/CFS may have led on to anorexia nervosa in the odd case, doesn't mean ME/CFS is like anorexia nervosa.

Trudie Chalder thinks the way we avoid exercise and activity is simply abnormal behaviour based on abnormal beliefs. I haven't read the full paper but I imagine when you don't accept some of these theories, the comparison with AN doesn't stand up.

 

[Dolphin]

Did anyone get to read it? From what I recall from this and other discussions, nobody saw it around the time it first came out.

 

[Snow Leopard]

I don't have access, so I haven't read it. I wonder if they deliberately publish such papers in journals that do not take letters to the editor?

 

[Esther12]

I was ableto browse this journal, but couldn't find this article. The most recent issue I can look at was the Sepember one - it had a couple on anorexia, but nothing I could see from Chalder. I am a bit rubbish at these sorts of things, but maybe it's not even out yet?

 

[Dolphin]

I was ableto browse this journal, but couldn't find this article. The most recent issue I can look at was the Sepember one - it had a couple on anorexia, but nothing I could see from Chalder. I am a bit rubbish at these sorts of things, but maybe it's not even out yet?

Yes, I just had a check. It's not in the printed edition yet. It looks like in this journal, the only people who can access it before it is physically published is subscribers to the journal (most journals are not like that). So probably more people will be able to access it online in a while.

 

[WillowJ]

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?

lol, I love it. (Type A has been disproven, but yes, we speak up for ourselves and don't accept this hogwash, which is inconsistent with their "external standards" & etc)

but the key is right there in the abstract:

with CFS participants showing a non-significant trend in the same direction. After controlling for differences in age, anxiety, and depression the only significant difference to remain was that observed for the STSS care as self-sacrifice subscale.

Not sure who gets to decide "care as self-sacrifice" is pathological.

 

[WillowJ]

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

This is something I would be interested in

regards,
Willow

 

[WillowJ]

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.

True, and it's easy to have an entirely proper/natural reaction of anger/frustration about how one's being treated but not have an acceptable means of expressing it.

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.

Good point

 

[Dolphin]

Did anyone ever see the full paper? I'm not sure I know anyone who saw it in 2010 - it seemed to be very hard to get.
It may be easier to get now e.g. http://onlinelibrary.wiley.com/doi/10.1348/014466510X519215/abstract
(I was reminded of this by another thread on Trudie Chalder: http://forums.phoenixrising.me/show...lides-for-Medically-Unexplained-Symptoms-Talk ).

 

[Esther12]

I can't get it.

 

[Dolphin]

I can't get it.

Just to be clear, I wasn't saying that that link gave full access but even people with institutional access weren't getting the full text last year - it seemed about the only people who might have got it then were individual subscribers to the journal (or something like that).

 

[Esther12]

I've got an account with a 1 year embargo. But I was able to access last september's issue ages ago, so i'm not too sure what's going on. Also, the paper now says:

1. Article first published online: 8 MAR 2011
2. Received 4 August 2009; revised version received 11 June 2010

But didn't it look like it was available to subscribers last year?

I don't know what's going on with it.

 

[Esther12]

Just had another look - still unable to get it and am confused about it's status.

 

[Dolphin]

Just had another look - still unable to get it and am confused about it's status.

On PubMed it says:

Hambrook D, Oldershaw A, Rimes K, Schmidt U, Tchanturia K, Treasure J, Richards S, Chalder T. Emotional expression, self-silencing, and distress tolerance in anorexia nervosa and chronic fatigue syndrome. Br J Clin Psychol. 2010 Aug 10. [Epub ahead of print]

PMID: 20704779 [PubMed - as supplied by publisher]

so not showing up as in a print edition yet it seems.

 

[Esther12]

It's from ages ago! I wonder if the reviewers asked for some extra work? Having an MS (or similar) control group would be an obvious improvement.

edit: Or is it not unusual to have this sort of delay?