An Investigation into the Relationship Between ME(CFS) and Obsessive-Compulsive Disorder

[lauluce]

Indeed, re OCD, it's a meaningful 'label' when obsessions and compulsions have a significant and detrimental effect on your life.

I agree on this, mental diseases as isolated an well defined entities clearly exists it´s not just "labels", OCD, bipolar disorder, depression, are as real as diabetes and ME. We should not do with others what we don´t like others do with us, we must keep an open mind

 

[JayS]

I just put "obsessive-compulsive" and "chronic fatigue syndrome" into Google (here), and the second hit was a study that found a much higher prevalence of OCD in ME/CFS patients. That took me 60 seconds.

I think that's the first time I've ever seen a fellow patient use this

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939994/

to try to make any point (other than 'can you believe this crap'). Sorry, I know it's a bit off-topic, but I find it to be kind of a weird choice. In my experience this is one of the most notoriously awful papers that we've ever seen about CFS. ME? With that cohort? Reeves had been removed by the time this was published, which was a year after it was submitted. It's been cited by publications with titles like "Perfectionism, Health, and Wellbeing," "Psychiatric Care of the Medical Patient," and "The Psychosomatic Assessment." It's everything Reeves, Christine Heim, and their pals at Emory ever wanted people to think about this disease, and us, and it's flat-out wrong.

Maybe taking longer than 60 seconds to find research that supports your position might make sense. Just saying. I wouldn't have weighed in on this, not because I don't have an opinion, but because I didn't think I had much that was useful to add. But then I remember that there are people who weren't even sick yet at the time this came out, and I think it's important to call this out for what it is. If you support it or its conclusions, and if you feel it supports your argument in this thread, great. I think it's a poor choice, sorry.

 

[Hip]

@JayS
Like many ME/CFS patients criticizing the somatoform etiologies of ME/CFS, you are not distinguishing between the psychogenic theories of ME/CFS devised by psychologists (which I tend not to agree with), and the empirical data obtained by experiment by psychologists (which provided the experiments are performed properly should be perfectly valid).

Your argument seems to be that because you don't like the psychogenic theories and you think they are wrong, then the empirical data gathered by psychologists by must also be invalid. But as an argument that is a non sequitur; the theories and the data are independent.


I am not coming to ME/CFS from a psychogenic perspective; I tend to see the mental and cognitive symptoms that ME/CFS patients have as caused by an organic physical biochemical dysfunction in the brain. So for me, if some psychologists have found a link between ME/CFS and OCD, then I start to think: what kind of underlying biochemical dysfunction in the brain could give rise to both ME/CFS and OCD.

This is just to give you an example of how you can make use of the empirical data gathered by psychologists, even psychologists who favor psychogenic theories, and analyze it from a biochemical perspective.

I hope you can understand what I am getting at here (I am sure lots of people won't understand it).

 

[JayS]

@JayS
Like many ME/CFS patients criticizing the somatoform etiologies of ME/CFS, you are not distinguishing between the psychogenic theories of ME/CFS devised by psychologists (which I tend not to agree with), and the empirical data obtained by experiment by psychologists (which provided the experiments are performed properly should be perfectly valid).

Your argument seems to be that because you don't like the psychogenic theories and you think they are wrong, then the empirical data gathered by psychologists by must also be invalid. But as an argument that is a non sequitur; the theories and the data are independent.


I am not coming to ME/CFS from a psychogenic perspective; I tend to see the mental and cognitive symptoms that ME/CFS patients have as caused by an organic physical biochemical dysfunction in the brain. So for me, if some psychologists have found a link between ME/CFS and OCD, then I start to think: what kind of underlying biochemical dysfunction in the brain could give rise to both ME/CFS and OCD.

This is just to give you an example of how you can make use of the empirical data gathered by psychologists, even psychologists who favor psychogenic theories, and analyze it from a biochemical perspective.

I hope you can understand what I am getting at here (I am sure lots of people won't understand it).

Wrong, wrong, and...no.

I don't pretend to try to understand or interpret most research papers because I usually can't get through them. But I know this: the Empirical Criteria cohort put together by the CDC allowed proponents of psychogenic theories to produce data that has zero bearing on Ramsay ME (yet is associated, and applied, almost unquestioningly, by medical science, and society at large). The amount of work for a professional in the field, let alone a layperson, to understand how that could possibly be, and the open-mindedness needed to view this 'data' from the 'experts' as wrong in any way, is rare.

The distinction you are drawing here would be valid if it were ME patients being studied (in which case I have grave doubts those numbers would hold up, which is the whole point). If you believe, however, that that study (or any other using the 'Empirical' cohorts) was undertaken by means of properly performed experiments, I have no idea what to say.

 

[Cheshire]

@JayS
Like many ME/CFS patients criticizing the somatoform etiologies of ME/CFS, you are not distinguishing between the psychogenic theories of ME/CFS devised by psychologists (which I tend not to agree with), and the empirical data obtained by experiment by psychologists (which provided the experiments are performed properly should be perfectly valid).

Your argument seems to be that because you don't like the psychogenic theories and you think they are wrong, then the empirical data gathered by psychologists by must also be invalid. But as an argument that is a non sequitur; the theories and the data are independent.


I am not coming to ME/CFS from a psychogenic perspective; I tend to see the mental and cognitive symptoms that ME/CFS patients have as caused by an organic physical biochemical dysfunction in the brain. So for me, if some psychologists have found a link between ME/CFS and OCD, then I start to think: what kind of underlying biochemical dysfunction in the brain could give rise to both ME/CFS and OCD.

This is just to give you an example of how you can make use of the empirical data gathered by psychologists, even psychologists who favor psychogenic theories, and analyze it from a biochemical perspective.

I hope you can understand what I am getting at here (I am sure lots of people won't understand it).

Most of these papers on "cfs personality" are wrong not because we want them to be wrong but because their methodology is just poor. In the case of this study:

- the cohort: they used a cohort of people "diagnosed" in a previous study on the basis of a telephone conversation. http://archinte.jamanetwork.com/article.aspx?articleid=215827
- comparison group: no comparison with cohort of people suffering from other comparable diseases to see if the mental states they study are the result of living with a debilitating disease. They only used healthy and ill defined fatigued controls. They even allude to it in their abstract: "Since maladaptive personality is not specific to CFS, it might be associated with illness per se rather than with a specific condition." but nevertheless go on.

So these results are useless and you can't draw any conclusion on them.

 

[Forbin]

chipmunk1 said: ↑
The solution is CBT. Now let's figure out what your problem is.

If you can't figure out what your problem is then CBT can help you there too.

And - if CBT doesn't help - consider CBT.

 

[Hip]

The distinction you are drawing here would be valid if it were ME patients being studied (in which case I have grave doubts those numbers would hold up, which is the whole point). If you believe, however, that that study (or any other using the 'Empirical' cohorts) was undertaken by means of properly performed experiments, I have no idea what to say.

This study used the CDC Symptom Inventory to define their ME/CFS cohort, which I presume is based on the CDC Fukuda criteria (though I am not entirely sure of this).

So their cohort selection looks fine, unless you can find some flaws in it.

And note that I have seen studies which found a higher prevalence of psychiatric disorders among CCC-defined ME/CFS compared to CDC Fukuda-defined ME/CFS. So had the authors of this present study used a CCC-defined cohort, the incidence of personality disorders might have been higher still.

- the cohort: they used a cohort of people "diagnosed" in a previous study on the basis of a telephone conversation. http://archinte.jamanetwork.com/article.aspx?articleid=215827

Telephone questionnaires were used in the early stages of gathering a cohort, but the ME/CFS patients used in this study were defined by the CDC Symptom Inventory.

- comparison group: no comparison with cohort of people suffering from other comparable diseases to see if the mental states they study are the result of living with a debilitating disease. They only used healthy and ill defined fatigued controls.

I am not sure if comparing to comparable diseases would allow you to determine whether the mental states / personality disorders are the result of living with a debilitating disease, or the result of the disease process itself.

If we choose another neurological disease like say multiple sclerosis for comparison, the neurological dysfunction in this disease might cause of the mood disorders found in MS (which include depression and generalized anxiety disorder according to this study on MS); so it would not be possible to say whether the depression / anxiety found in MS is due to a biochemical cause, due to living with MS, or a combination of both.

 

[Scarecrow]

This study used the CDC Symptom Inventory to define their ME/CFS cohort, which I presume is based on the CDC Fukuda criteria (though I am not entirely sure of this).

So their cohort selection looks fine, unless you can find some flaws in it.

I don't like it much. It seems a bit sketchy and we don't know how many potential subjects were lost, which means that we don't know what the actual prevalence rate is, which I would regard as a relative sense check. Based on what we are told the prevalence rate of CFS seems unreasonably high, around 2%.


12,000 households were screened. A household informant identified household members as 'well', 'unwell without fatigue' or 'unwell with fatigue' but we don't know how many informants refused to provide information on household members (or gave incorrect information).

5,623 detailed telephone interviews with household members in the 18-59 age category were completed. The response rates were 56% of well, 67% of unwell without fatigue and 71% of unwell with fatigue, based on the initial categorisation of the household informants. Unhelpfully, we are not told the actual breakdown at the informant stage or interview stage.

From the telephone interviews, people are classed as CFS-like, well or chronically unwell.

Of the people who were CFS-like, 469 volunteered and were eligible to participate. 292 of them completed the clinical assessment. 113 were identified as having CFS


So at least 113 of the 5623 telephone interviewees met Fukuda empiric case definition CFS. That's 2.01% of that particular 18-59 age group sample. We know that people who were unwell with fatigue had a higher response rate than either the well or the unwell without fatigue, so that may have skewed the prevalence upwards but anything close to 2% just seems unfeasibly high.

THE ME Association states that an estimated 250,000 people in the UK have ME, roughly 0.38%. The IOM report stated that anywhere from 836,000 to 2.5 million Americans are affected, which is from about 0.26% to 0.78%.

From what I recall, the Reeves studies consistently found high prevalence rates for CFS. Why are they more inclusive than best estimates indicate they should be?

 

[alex3619]

And note that I have seen studies which found a higher prevalence of psychiatric disorders among CCC-defined ME/CFS compared to CDC Fukuda-defined ME/CFS. So had the authors of this present study used a CCC-defined cohort, the incidence of personality disorders might have been higher still.

My best guess is this is simply because they have more symptoms. More symptoms equals more ticks on psych diagnosis checklists, equals more presumed psych disorders. I think in many cases these are simply reflective of the issue that ME and CFS symptoms appear on many psych checklists. Its one of the problems with most psych diagnoses. CFS and ME diagnoses would have the same issue except they allow for exclusions (except SEID, which presumes doctors will apply exclusions without needing to list them).

In other words, there are double standards involved. Psychiatry is, to a large extent, out of control. We need psychiatry, or something like it, but psychiatry is in danger of doing more harm than good if it continues to expand diagnostic coverage. Its already been claimed that nearly everyone can now be diagnosed with a psych disorder due to the expansion of coverage, though I am not aware this has been formally proved.

 

[Hip]

My best guess is this is simply because they have more symptoms.

I would think it is probably more related to the fact that the CCC tends to select more severely ill ME/CFS patients than the CDC criteria. Thus the brain will be more out of whack in a CCC cohort, which may also increase the severity of any psychiatric comorbidities.

In my own case, I have several psychiatric comorbidities (generalized anxiety disorder, social anxiety, depression, anhedonia, blunted affect, and some mild psychosis). All of these appeared to be triggered by the same virus that precipitated my ME/CFS.

I have found that as I tried out various drugs and supplements in order to try to improve my ME/CFS, some leading to some significant ameliorations in my ME/CFS, I also found that most of my psychiatric comorbidities improved also.

It would be interesting to poll other members on this forum who have one or more psychiatric comorbidities, and ask them whether these improved / got worse as their ME/CFS improved / got worse.



My only gripe with psychologists is not the mental and personality parameters they measure, but their bias towards searching for psychogenic (ie, a psychological cause) for mental health symptoms, rather than an organic biochemical cause in the brain.

And my gripe does not just apply to ME/CFS, but all of abnormal psychology. I strongly suspect that most mental health conditions will have a biochemical basis.

By contrast, in normal psychology (the study of normal mental health), I think there personality and behavioral parameters do likely have more of a psychogenic basis. This is why I think psychologists are better at understanding the cause and effect of normal psychology than they are abnormal psychology.

Psychologists needs to get to grips with neurology and immunology (since the immune system strongly affects the brain) in order to study the cause and effect of abnormal psychology.

I don't like it much. It seems a bit sketchy and we don't know how many potential subjects were lost, which means that we don't know what the actual prevalence rate is, which I would regard as a relative sense check. Based on what we are told the prevalence rate of CFS seems unreasonably high, around 2%.

I agree that the way the study narrowed down to their ME/CFS patients using the automatic telephone questionnaire is a bad method to determine prevalence rate, and that's why I think the prevalence rate they arrived at was 6 to 10 times higher than the rates found by other studies.

 

[JayS]

This study used the CDC Symptom Inventory to define their ME/CFS cohort, which I presume is based on the CDC Fukuda criteria (though I am not entirely sure of this).

So their cohort selection looks fine, unless you can find some flaws in it.

I agree that the way the study narrowed down to their ME/CFS patients using the automatic telephone questionnaire is a bad method to determine prevalence rate, and that's why I think the prevalence rate they arrived at was 6 to 10 times higher than the rates found by other studies.

So do you still feel that your invoking this study in this thread as you do represents your position accurately, as valid research based on data derived from properly executed experiments. Or not.

Keeping in mind that the CDC specifically said that ME had a case definition different from that of CFS, and that the presence of certain symptoms as defined by CCC (such as lymphadenopathy) was indicative of neurological dysfunction that may have resulted in a condition considered exclusionary for a CFS diagnosis (even though one of the Fukuda symptoms was swollen lymph nodes).

 

[Scarecrow]

I agree that the way the study narrowed down to their ME/CFS patients using the automatic telephone questionnaire is a bad method to determine prevalence rate, and that's why I think the prevalence rate they arriIved at was 6 to 10 times higher than the rates found by other studies.

So how many of the 113 CFS subjects didn't actually have CFS? What did they have instead? Can we trust the statement that 29% of CFS patients have at least one co-morbid personality disorder?

FWIW, I'm in broad agreement with you about a relationship between ME and some mental health symptoms, although I wouldn't be surprised if a large part of it is connected to poor sleep quality or quantity. I had physical symptoms of anxiety (easily startled) that cleared up almost overnight when I took my first sublingual B12 and finally got some half decent sleep. Within a week, the symptoms were almost completely resolved. If I had been less self-aware about the cause, the physical symptoms could easily have tripped over into emotional anxiety, i.e. becoming upset and anxious through misinterpreting the physical symptoms.

And that's quite apart from your point about abnormal physiological processes directly causing mental health problems. The most psychologically disturbed, for want of a better word, I've ever felt was after taking 5HTP. It had a truly horrible effect on me. Never again.

 

[Hip]

So do you still feel that your invoking this study in this thread as you do represents your position accurately, as valid research based on data derived from properly executed experiments. Or not.

My position on what?

Certainly I think there is enough data to show that ME/CFS patients have higher rates of psychiatric comorbidities than healthy controls. This is not the first study to find increased rates of psychiatric comorbidities in ME/CFS; another is here. And ME/CFS is not the only neurological disease to have psychiatric comorbidities. And what's more, the CCC itself details psychiatric symptoms found in ME/CFS.

As to whether this study specifically shows that ME/CFS patients have higher rates of OCD, well one study like this is not enough to draw a definitive conclusion on this matter, but it is a start.

Anatomically an OCD comorbidity it makes sense, because OCD is an organic disorder linked to damage or dysfunction of the basal ganglia, which is also one of the brain areas implicated in ME/CFS. That may be the link. So here in an example where psychological research might potentially provide insight into the neurological pathologies of ME/CFS (although sadly the Wessely School are not using their psychological research for that purpose).

So how many of the 113 CFS subjects didn't actually have CFS? What did they have instead? Can we trust the statement that 29% of CFS patients have at least one co-morbid personality disorder?

The study said they all had ME/CFS as measured by the CDC Symptom Inventory.

I don't know why they got such a high a prevalence figure though. I'd have to carefully read the methodology to figure out why (but I have little interest in doing this). It probably relates to the telephone questionnaire setup.

 

[JayS]

The study said they all had ME/CFS as measured by the CDC Symptom Inventory.

No, it didn't. This is a CDC paper, and the CDC has always maintained ME and CFS are distinct, and has never published on ME/CFS.

This is a waste of time. Your acceptance of this research is bizarre. It's a long way from a good-faith effort to study psychiatric comorbidities in ME, examining empirical data derived from properly performed experiments on well-defined cohorts.

In my opinion this only ever existed to perpetuate the psychogenic theories that always seem to hold up when examining cohorts defined by overly broad criteria, that have caused so many problems. And yes, I know the difference.

 

[Hip]

Your acceptance of this research is bizarre.

Not as bizarre as the irrational fear of psychology and psychologists that so many ME/CFS patients seem to manifest.

As I already said, you need to carefully distinguish between the psychogenic theories of ME/CFS devised by certain psychologists, and the empirical data obtained by experiment by psychologists.

In my case, I tend to think more scientifically than politically, so I am quite capable of accepting the empirical data without accepting the psychogenic theory. It is not that difficult to do!

 

[jimells]

Not as bizarre as the irrational fear of psychology and psychologists that so many ME/CFS patients seem to manifest.

Fear of psychology, psychologists, and psychiatrists seems pretty sensible to me, considering the harm caused to so many patients. Both my neurologist and my primary care provider believe that my illness is "primarily psychological", even as they are recording my physical symptoms in their notes and considering whether or not I am developing Parkinson's disease.

The PCP has refused to write an order for regular IV saline so that I can maybe stand up longer (I have POTS), and she won't even help me get an assessment for home care (home care perpetuates the illness, I suppose).

I am being harmed every freakin day by the psychobabblers.

 

[Scarecrow]

The study said they all had ME/CFS as measured by the CDC Symptom Inventory.

I don't know why they got such a high a prevalence figure though. I'd have to carefully read the methodology to figure out why (but I have little interest in doing this). It probably relates to the telephone questionnaire setup.

I think it's a combination of the unquantified non-responses and that they used the empiric CFS case definition, which has been criticised for misdiagnosis rates:

http://dsq-sds.org/article/view/1375/1540
For example, a person would meet the fatigue criterion if they stated that the following two items were entirely true: "I get little done," and "I think I do very little in a day." It is likely that most individuals with major depressive disorder (MDD) would meet this reduced activity criterion. Jason, Najar, Porter, and Reh (2009) found that 38% of those with a diagnosis of MDD were misclassified as having CFS using the CDC empiric CFS case definition (Reeves et al.). With the Reeves et al. empiric case definition criteria, the estimated rates of CFS in the US have increased to 2.54% (Reeves et al., 2007), rates that are about ten times higher than prior CDC prevalence estimates (Reyes et al., 2003) and estimates of other investigators (Jason, Richman, et al., 1999). It is plausible that this inflated CFS prevalence estimate in the U.S. is due to an inappropriate broadening of the case definition, and this might very well be related to specificity problems in the measures and cutoffs selected for this case definition.

 

[Hip]

I think it's a combination of the unquantified non-responses and that they used the empiric CFS case definition, which has been criticised for misdiagnosis rates:

http://dsq-sds.org/article/view/1375/1540
For example, a person would meet the fatigue criterion if they stated that the following two items were entirely true: "I get little done," and "I think I do very little in a day." It is likely that most individuals with major depressive disorder (MDD) would meet this reduced activity criterion.

But were these CFS empiric case definition criteria used in the OCD etc study in question? In this OCD study they say they used the CDC Symptom Inventory, whose questions can be seen in this questionnaire. I can't see any questions in that questionnaire like "I get little done."




Those here who are denying the validity of studies that show psychiatric comorbidity in ME/CFS: I am curious, are you also denying the psychiatric ME/CFS symptoms listed in the Canadian Consensus Criteria document, which are as follows:

Canadian Consensus Criteria ME/CFS Psychiatric Symptoms:

• Emotional lability (pseudobulbar affect) = unstable or exaggerated emotion
• Emotional unpredictability, emotional disability, emotional disturbances
• Hypersensitivity to emotional overload
• Emotional flattening
• Personality change
• Anxiety
• Panic attacks
• Reactive depression = depression that is caused in reaction to an external event or circumstance

• Regular depression is also listed as a comorbidity of ME/CFS in the CCC.

Just curious to know whether you think the CCC is also bunk when it comes to saying that these psychiatric symptoms appear in ME/CFS.

 

[Snow Leopard]

I just put "obsessive-compulsive" and "chronic fatigue syndrome" into Google (here), and the second hit was a study that found a much higher prevalence of OCD in ME/CFS patients. That took me 60 seconds.

Yes, it's pretty clear you didn't read the study in much depth. It's the infamous Georgia cohort eg the CDC 'empirical' criteria that claimed that 2.5% of the population had CFS.
With a sample like that, who knows what you are really measuring (to be specific, if only 14.5% of their sample had OCD and only 20-40% of their sample had true CFS, then it is possible that none of the true cases had OCD).
They discuss 'perfectionism' being strongly associated - this may partly be a self fullfilling prophecy as it is part of the CFS social narrative - patients want to show that they were diligent hard working etc. before becoming ill. Many normal people have 'perfectionistic' tendencies. That doesn't mean they have OCD. Poor specificity of measures of OCD doesn't mean 'Everybody has OCD, but its level is different for everyone.'

Previous studies had different conclusions to the CDC study, despite how they were cited in the above paper:

http://www.ncbi.nlm.nih.gov/pubmed/12726901/
http://www.ncbi.nlm.nih.gov/pubmed/8736462/

 

[Hip]

Yes, it's pretty clear you didn't read the study in much depth.

Actually I remember the discussions of this study when it first came out.

They discuss 'perfectionism' being strongly associated - this may partly be a self fullfilling prophecy as it is part of the CFS social narrative - patients want to show that they were diligent hard working etc. before becoming ill.

Sounds a bit implausible.



What is your view on the above-detailed psychiatric symptoms found in the CCC?