Dr. Kerr's 7 Subtypes of CFS

[Gerwyn]

Hi Gerwyn

My problem with the 'childhood truama causing the development of CFS' is firstly, the vague definition of 'childhood truama'. The Heim et al papers, for example, are so vague, that ANY distressing childhood experience can be classed as 'trauma', and how many people (including the healthy) escape childhood without distress? Again - retrospective reporting of people under stress NOW can lead to introspection not present so much in the so-called 'unstressed'.

Secondly, whatever experiences affect the development of MIND- exactly HOW do they lead to a specific, serious Central Nervous System and other physiological dysfunction from an infection? I contend this has not ever been verified or even tested properly, and possibly never will.

If 'stress' is an 'enabler', it would be occurring for all other disease- because ME/CFS sufferers are not the only people to have had 'stress' in their lives! But with ME/CFS there is a special pleading on sufferers are somehow more 'stressed' and that this CAUSES the illness.

Plus- the emphasis on psychological distress as THE putative 'stressor' ignores that human (and other animal) bodies experience all sorts of physical stress on them.

On top of that - 'stress' theory is now being replaced with 'Negative Affectivity' stories, where people's negative personalities and psychological 'maladaptive' responses to 'stress' are postulated as causing 'CFS'. Kerr's 'stress index' utilised that assumptions as well as 'stress'. There are so many flaws and problems in those theories.

And lastly - even with all these problems, on top of them, childhood trauma/stress/cfs papers have terribly weak correlations at best, and so are massively subject to the logical fallacy of correlation equals causation. PLUS - the cohorts are CDC defined! Just to add another problem into the mix...

Stress as a causative is out.My point is that stress depresses the immune system thus potentially allowing our friend to enter undetected or virtually so.Its sequence similarity to Human DNA is astonishing.The formation of the mind is now pretty well accepted in that it is built on the resonance properties of the effective components of our earliest relationships and how they became represented.

This will effect cognitive and effective development if this relationship is" sub optimal".It will not have any effect at all as far as I know on susceptibility to infection other than possibly a slightly compromised immune system if anxiety is excessive

.We are still left with the virus as causative

.Trauma as defined in attachment literature can lead to a kind of attachment pattern that will show up in attachment interviews.So the theory that trauma leads to the somataform ME theory could actually be disproved to a certain level of probability.

I note that our psycho bretheren have never dared to attempt this .They have tried anxious attachment styles etc not related to trauma and not the disorganised ones which are.I suspect that they are afraid of what they will find.

 

[Angela Kennedy]

Stress as a causative is out.My point is that stress depresses the immune system thus potentially allowing our friend to enter undetected or virtually so.Its dequence similarity to Human DNA is astonishing.The formation of the mind is now pretty well accepted in that it is built on the resonance properties of the effective components of our earliest relationships and how they became represented.This will effect cognitive and effective development if this relationship is" sub optimal".It will not have any effect at all as far as I know on susceptibility to infection other than possibly a slightly compromised immune system if anxiety is excessive.We are still left with the virus as causative.Trauma as defined in attachment literature can lead to a kind of attachment pattern that will show up in attachment interviews.So the theory that trauma leads to the somataform ME theory could actually be disproved to a certain level of probability.I note that our psycho bretheren have never dared to attempt this .They have tried anxious attachment styles etc and not the disorganised ones which are.I suspect that they are afraid of what they will find.

OH! That's interesting! No - they haven't have they?!

Of course - somatoform ideation is based on the fallacy of 'medically unexplained therefore psychogenic by default', and the correlation of 'distress' (again they mistake correlation as causation and neglect impact). Obviously 'somatoform' and 'somatization' terminology define symptoms as 'fake' i.e not organic. So delusion, hypochondria and even a little malingering is in the mix of the explanations.

Do you have any references on attachment patterns related to 'trauma' that you could point me in the direction of?

 

[Sing]

I'm really not sure where he's coming from with this research.

The proposed sub types seem to me like an example of nominal fallacy. He has detected differential expression of certain genes in ME patients and then describes certain largely overlapping sub groups which appear to typify that particular gene expression pattern. That sounds a rather circular line of reasoning to me.

I'm also not sure whether he is suggesting that these patterns are innate or acquired; i.e. are we pre programmed to be vulnerable to illness or has an infection switched the genes?

I'm not convinced that gene expression is significant to ME per se. There's a theory that people have a 'preferred expression' of illness regardless of the particular illness. Some tend to 'express' illness through gastro problems, some musculoskeletal etc.

I resonate with your sense, Marco, about Kerr's approach. Please explain "nominal fallacy". I sense that pin points my objection, yet I do not know the definition. Scientific culture wants to find a genetic picture which causes a set of symptoms which are being called an illness. X genes cause schizophrenia, for example, or depression, or....But this is the cart before the horse, and hasn't panned out as valid. Please explain your thinking more!

Thanks,

Sing

 

[alphahusky]

I wonder as well about Dr. Kerr.

As for childhood trauma causing ME/CFIDS, I guess then that the kids who grew up in The Great Depression all had ME afterwards? All wars must have caused ME afterwards. I did go through childhood trauma. So did all of my stepbrothers and stepsisters. None of them have had any health problems outside of addiction issues. My parents also went through abuse. Neither of them have had ME. Mu Aunts and Uncles- none of them, either. I guess I'm just so weak mentally, so incredibly over-sensitive, that somehow it "got to me" when I had been accepted to all the colleges I applied to, I was strong, 17 and healthy, and I was so thrilled to be getting out of my house soon. That wasn't stress- that was exhilaration, joy, excitement. So that did it then!

No. I'm seeing this on some boards I belong to, and I want to scream at them about reinforcing this ridiculous idea. If anything, what I went through made me much stronger. I mean, after 25+ years of this disease and the psychological trauma that has been rained down on my head from doctors, the media, family, friends- if it weren't for all of that, I would never have made it through the first three years because that was when I was most likely to seriously consider suicide. It kills me that now they are trying this whole, "It was your negative attitude that caused it." Well, that's actually nothing new. In year 2 and doctor told me "Blood pressure can't be too low," when mine sitting up was 80/58 and God only knows what it was when I stood up. He then put aside his papers, folded his hands, looked me in the eyes and siad, "Now, why do you want to be sick?" I literally slid my entire soul out of my body and just probably stared at him dumbfounded. But OMG, there was nothing but such happiness in me. I didn't know how I would support myself, especially while paying for college, but that excited me. I knew I'd make it. I just bristle so at this whole idea.

Ahem, so Hi, I'm new here. After a long time of on and off lurking.

 

[Marco]

I resonate with your sense, Marco, about Kerr's approach. Please explain "nominal fallacy". I sense that pin points my objection, yet I do not know the definition. Scientific culture wants to find a genetic picture which causes a set of symptoms which are being called an illness. X genes cause schizophrenia, for example, or depression, or....But this is the cart before the horse, and hasn't panned out as valid. Please explain your thinking more!

Thanks,

Sing

My simplistic understanding of nominal fallacy is that by giving something a name (eg Somatoform disorder) you somehow provide an explanation for it. In the case of the subtypes I just had the feeling that he had identified certain genes being up or down regulated in certain clusters of patients and then went on to propose that they belonged to distinct subgroups which he names, based on somewhat overlapping symptoms. The danger being that you then say that you belong to subgroup B therefore you must have this gene expression. That just looks to me like seeing patterns in an inkblot test. Perhaps he is correct but I'm not convinced that ME is heterogenous. I feel that a disease, even a particular expression of genes, will express itself slightly differently in different individuals. Scientists use to think the genome was just a linear pattern that was deterministic. Then they discovered that genes can be switched, then that they operated in clusters and then that genes are actually a vast network of connections. Immensely complex and much more potential for individual differences.

 

[willow]

The sub types really don't resonate with me either. I don't know what I've done with the full paper, but as I recall (and my recall is awful),only 1 of the genetic variations really stood out as being vastly different in PWME compared to the population as a whole.

 

[natasa778]

Angela, try these for more info on attachment and childhood trauma and risk of depression, these are straightforward, easy to train on,validated measures that could be employed easily by KCL team, also this one http://attachmentstyleinterview.com/ASI_for_psychologists.html "...The ASI research interview has been used extensively in research studies to examine psycho-social risks for mental health problems, including major depression, anxiety..."

as you say they are probably scared to try as they might find most of their CFS patients are in low risk categories by both measures!!

 

[Marco]

I wonder as well about Dr. Kerr.

Ahem, so Hi, I'm new here. After a long time of on and off lurking.

Hi there and welcome to posting. I hate to start off by disagreeing but I've read a few of his papers and I don't see much to suggest that he believes ME is anything other than organic.

I appreciate that many don't have problems with depression or anxiety but its also clear from the literature that many do and its hardly surprising with a neurological illness.

A Few quotes from his 2007 papers :

"It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes and that those which were most severe were also those with anxiety / depression, as would be expected in a disease with a biological basis."

"Various CFS-associated genes identified have previously been shown to be upregulated in EBV infection, namely NFKB1, EGR1, ETS1, GABPA, CREBBP, CXCR4, EBI2, HIF1A, JAK1, IL6R, IL7R, PIK3R1. This is very interesting as EBV is a recognized trigger of CFS and is known to reactivate upon stress.18"

My reading of this is that he sees a need for a 'trigger' to reactivate or upregulate a viral infection. No different from the suggestion that XMRV is reactive to cortisol or the reports that the XMRV infected monkeys didn't 'appear to be ' sick and may require some other mechanism to express ME. His papers have clearly shown that the gene expression in ME is completely different from healthy controls, those with depression and those with generalised anxiety disorder.

Perhaps there is something specific that he has said?

 

[natasa778]

the main link for the childhood abuse and trauma measure didn't come true, reposting http://www.cecainterview.com/

 

[Angela Kennedy]

the main link for the childhood abuse and trauma measure didn't come true, reposting http://www.cecainterview.com/

Thank you very much Natasa for this.

As a sociologist- one of the first issues I would raise would be the apparent lack of attention to other traumatic incidents/situations that can be found in the childhood experience: bullying outside the home/family, instituitional abuse in school, war, poverty etc. One of my interests is in how children deemed 'fat' can be adversely affected from outside the family through media interpellation, school, medical interactions etc. for example. This seems a little too 'dysfunctional family' oriented. I may be wrong of course, in that the above issues I raise are accounted for in the interview- it just doesn't look like they are.

One of my concerns is about the patho-psychologising of responses, likely to be banal, understandable, or socially constructed, as if they were personal character flaws. This is a common feature in academic literature around, for example pain, as well as CFS (the old 'catastrophising', 'fear avoidance' stuff), and the potential for psychologists fallacies in much of the scales/questionnaires that are used ('neuroticism' is one of the big ones for me).

The problem with scales/questionnaires of all types in the social sciences (including sociology and psychology) is that they reflect the author's own preoccupations- which makes for bias that may skew how and what knowledge is produced. Obviously there are many discussions and reflections around this epistemological problem in both disciplines- but these are conspicuous by their absence in medical/ psychiatric deliberations and claims around CFS!

but this is very useful- especially when considering the alleged so-called 'child trauma' link with 'CFS and the literature around that.

 

[natasa778]

in any good measure tool the training is extensive and the measure is designed to minimise personal bias on interviewing and scoring, scoring can be doublechecked etc, consulted on etc...yes this one is mainly internal family as measures CARE and abuse (ie neglect and abuse in the context of care), best thing imo that resilience factors are taken into account/measured alongside risk factors, giving a good indication of vulnerabiilty to other events (ie risk/resilience developed towards to 'brace' an individual).. . there are other measure out there alongside these two that would take other factors into account, life events etc, (war, abusive partners, medical etc) not sure how readily available they are to UK clinicians but when there is a will there is always a way as they say.

re

One of my interests is in how children deemed 'fat' can be adversely affected from outside the family through media interpellation, school, medical interactions etc

yes of course but early life care and attachment experience will also to a large degree influence vulnerability to adversity from such outside events later on.

what I was trying to say there are several readily available and verifiable retrospective measures that could be employed as we speak to determine, to at least some degree, whether kcl cfs patients would fall into high risk category for depression and anxiety.

 

[Gerwyn]

OH! That's interesting! No - they haven't have they?!

Of course - somatoform ideation is based on the fallacy of 'medically unexplained therefore psychogenic by default', and the correlation of 'distress' (again they mistake correlation as causation and neglect impact). Obviously 'somatoform' and 'somatization' terminology define symptoms as 'fake' i.e not organic. So delusion, hypochondria and even a little malingering is in the mix of the explanations.

Do you have any references on attachment patterns related to 'trauma' that you could point me in the direction of?

Type in disorganised attachment trauma ptsd etc.If not i can put areferenced piece together--As you can probably gather it is one of my obsessions!

 

[Gerwyn]

Thank you very much Natasa for this.

As a sociologist- one of the first issues I would raise would be the apparent lack of attention to other traumatic incidents/situations that can be found in the childhood experience: bullying outside the home/family, instituitional abuse in school, war, poverty etc. One of my interests is in how children deemed 'fat' can be adversely affected from outside the family through media interpellation, school, medical interactions etc. for example. This seems a little too 'dysfunctional family' oriented. I may be wrong of course, in that the above issues I raise are accounted for in the interview- it just doesn't look like they are.

One of my concerns is about the patho-psychologising of responses, likely to be banal, understandable, or socially constructed, as if they were personal character flaws. This is a common feature in academic literature around, for example pain, as well as CFS (the old 'catastrophising', 'fear avoidance' stuff), and the potential for psychologists fallacies in much of the scales/questionnaires that are used ('neuroticism' is one of the big ones for me).

The problem with scales/questionnaires of all types in the social sciences (including sociology and psychology) is that they reflect the author's own preoccupations- which makes for bias that may skew how and what knowledge is produced. Obviously there are many discussions and reflections around this epistemological problem in both disciplines- but these are conspicuous by their absence in medical/ psychiatric deliberations and claims around CFS!

but this is very useful- especially when considering the alleged so-called 'child trauma' link with 'CFS and the literature around that.

The attachment questionaires are interviews which allow you to detect problems with autonoic conciousness integrative processes and so forth by focusing or narrative histories. Its quite difficult to describe But has good neurobiological evidence and strong predictive power.A particular kind of attachment history predicts the profiles revealed in the adult attachment interviews with frightening accuracy especially if the relationship caused pathological maladaptations

 

[oerganix]

Hi there and welcome to posting. I hate to start off by disagreeing but I've read a few of his papers and I don't see much to suggest that he believes ME is anything other than organic.

I appreciate that many don't have problems with depression or anxiety but its also clear from the literature that many do and its hardly surprising with a neurological illness.

A Few quotes from his 2007 papers :

"It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes and that those which were most severe were also those with anxiety / depression, as would be expected in a disease with a biological basis."

"Various CFS-associated genes identified have previously been shown to be upregulated in EBV infection, namely NFKB1, EGR1, ETS1, GABPA, CREBBP, CXCR4, EBI2, HIF1A, JAK1, IL6R, IL7R, PIK3R1. This is very interesting as EBV is a recognized trigger of CFS and is known to reactivate upon stress.18"

My reading of this is that he sees a need for a 'trigger' to reactivate or upregulate a viral infection. No different from the suggestion that XMRV is reactive to cortisol or the reports that the XMRV infected monkeys didn't 'appear to be ' sick and may require some other mechanism to express ME. His papers have clearly shown that the gene expression in ME is completely different from healthy controls, those with depression and those with generalised anxiety disorder.

Perhaps there is something specific that he has said?

I can't find it right now, but there was a video posted on this forum of an interview with Dr Kerr from Nov 2009 and I was completely convinced that he is 'on our side' and he 'gets it'. The interview was done in Sweden and the site was posted along with a video interview with Dr Kenny deMeirleir and I can't find either of them here.

I think we may be overly sensitive to any mention of stress, depression or anxiety in relation to CFS/ME because of how the psychs have tried to characterize this as nothing more than those symptoms. Any debilitating illness may cause or contribute to these symptoms, so it is no surprise that some of us may have some of these conditions, even if temporarily, or intermittantly. But there are other diseases, such as syphilis and Lyme disease, that have neuro symptoms as a part of the illness. I think Dr Kerr's recognition of the mental aspects of disabling disease are justified. He doesn't claim that's all there is to it, nor that there isn't a more important organic cause or causes. He really is looking for answers.

 

[Angela Kennedy]

As I said re Kerr, my problems with his approach stem from his comment that stress is involved in the pathogenesis of CFS (based on insufficient evidence at that), and on a dvd of a conference where he focused on psychological stress and depression as causative of CFS and did not appear to see the problems in that explanation.

I'm not throwing doubt on his motives - but I do question his claims. There are some problems, especially in the 'stress' paper.

 

[Angela Kennedy]

Hi Natasa

I do understand that life care and attachment experiences may influence vulnerability to adversity- but these are not the only factors. Adversity itself is a massive issue (especially if current), the issue of introspection being related to current adversity (and how this might confound retrospective accounts), and more distal structural influences should always be accounted for when elucidating distress, if a more unified theory is to be advanced. Psychologists such as David Smail and Paul Moloney, for example, do take account of these issues.

How 'resilience' is measured is also problematic, and can be subject to psychologists fallacies. I do understand much work is done on reliability of these types of scales- though some of these measures seem self-fulfilling - but there may (often does) remain problems of construct validity because of risks of psychologists fallacies. That's probably the feminist sociologist in me (Reflexivity, problematizing claims to objectivity and pure quantification of human response, and situated knowledges are hot issues in that field!)

I'm interested to find out how much work has been done in psychology on reducing risks of psychologists fallacies?

I would question that even the tools mentioned would necessarily provide enough unproblematic, verifiable evidence around the issues of childhood 'trauma' related to feelings of depression, anxiety, so-called 'negative affectivity' etc. around 'CFS' sufferers. That may be because of my sociological training, or because I've been unfortunate enough to see a lot of poor quality 'psychological' papers making extravagant claims around somatic illness and psychological symptoms, based on value judgements around what may be banal, understandable and adaptive (but judged maladaptive), and socially constructed responses, deemed as examples of personal psycho-pathology. It has generated what I think is a healthy scepticism (in similar ways to authors such as Kirk and Kutchins, or Paula Caplan, or even Carole Tavris).

Obviously- the KCL 'cfs' research cohort is also somewhat different to the type of patient the Canadian Criteria would identify- so that's another problem!!

 

[dannybex]

I can't find it right now, but there was a video posted on this forum of an interview with Dr Kerr from Nov 2009 and I was completely convinced that he is 'on our side' and he 'gets it'. The interview was done in Sweden and the site was posted along with a video interview with Dr Kenny deMeirleir and I can't find either of them here.

I think we may be overly sensitive to any mention of stress, depression or anxiety in relation to CFS/ME because of how the psychs have tried to characterize this as nothing more than those symptoms. Any debilitating illness may cause or contribute to these symptoms, so it is no surprise that some of us may have some of these conditions, even if temporarily, or intermittantly. But there are other diseases, such as syphilis and Lyme disease, that have neuro symptoms as a part of the illness. I think Dr Kerr's recognition of the mental aspects of disabling disease are justified. He doesn't claim that's all there is to it, nor that there isn't a more important organic cause or causes. He really is looking for answers.

I totally agree. Certainly stress and/or anxiety etc., may not have played a role in certain subsets, but in others it definitely did and does. Even Dr. Cheney and Dr. Mikovits discussed this during their talk last week:

(Cheney): "One of the variables that seems to also be in play in prognosis and in how severe the illness is, is the degree of stress in ones life and the chaos, the psychosocial chaos one is in and I just wanted to ask Judy if stress, and specifically the accompanying steroid hormone response such as cortisol during stress.

Q. Paul Cheney: Does cortisol, which is activated in the stress response system, could it play a role in activating XMRV?

A. Judy Mikovits: Yes, part of that switch I mentioned at the beginning of the talk there is a cortisol responsive on-switch for the virus. Every time cortisol is present in the cells when the virus is present, it can turn it on, so youre spreading the virus ever so slowly throughout your healthy immune cells and the idea is the more cells that get sick, the more clinical symptoms you see. "

http://forums.aboutmecfs.org/content.php?62-Mikovits-Cheney-on-XMRV-and-CFS-Pt-II

 

[Orla]

I don't think Kerr has ever pointed to childhood trauma as a cause of CFS. He seems to be talking about sress just before the condition. Personally I am a bit skeptical about it, but maybe it is the case for some a lot of stress adds to the likelihood of them getting ME/CFS, but is not enough on its own?

Orla

 

[oerganix]

I can't find it right now, but there was a video posted on this forum of an interview with Dr Kerr from Nov 2009 and I was completely convinced that he is 'on our side' and he 'gets it'. The interview was done in Sweden and the site was posted along with a video interview with Dr Kenny deMeirleir and I can't find either of them here.

I think we may be overly sensitive to any mention of stress, depression or anxiety in relation to CFS/ME because of how the psychs have tried to characterize this as nothing more than those symptoms. Any debilitating illness may cause or contribute to these symptoms, so it is no surprise that some of us may have some of these conditions, even if temporarily, or intermittantly. But there are other diseases, such as syphilis and Lyme disease, that have neuro symptoms as a part of the illness. I think Dr Kerr's recognition of the mental aspects of disabling disease are justified. He doesn't claim that's all there is to it, nor that there isn't a more important organic cause or causes. He really is looking for answers.

OOOPS! It wasn't Kerr. It was Dr Hyde in the video. I no longer have an opinion of Kerr.

But I still think the rest of what I said is ok....going back to sleep...

 

[muffin]

Stress

Find me ONE SINGLE PERSON in this entire world that has NOT had stress throughout their entire life. One single person. Everyone has stressful periods from early childhood onwards. Even the very wealthy and healthy have stress and wind up self-medicating themselves or outright killing themselves. I don't need to go through the list on the uber wealthy and celebs, you all can think of at least five in two seconds who have major problems and it appears that their lives are care free and no real worries. No worries about jobs, money, status, etc. Yet they too have "stress".

My father used to say that even being "happy" is stressful. Sounded odd to me at the time, but he had something there.

The point is ALL humans live in a stressful environment no matter where they live, how much they have, and even the ones that seem "to have it all". So, stress causing CFIDS? If stress caused CFIDS then everyone in the world for centuries would have CFIDS. Or at least many millions more people would have CFIDS. So that fails the common sense test right there.

Stress does exacerbate disease and illness. We KNOW that. It may even kick off some diseases/illnesses off because of a weakend immune system. But that means all other disease and illnesses and not just CFIDS.

Anyone following where I am trying to go with the above chatter???