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

[lauluce]

I don´t want to fill this questionnaire because I think It might be incorrectly used by its author. However, I must point out that I suffer OCD alongside ME, the first diagnosis is as confirmed as it can, I have not only visited one of the best specialist in the disease but also found relief in the two most effective treatments to the disease, namely exposure and response prevention therapy and the medication clomipramine, when the enormous amount of other treatments I tried failed miserably. I also have ME, with hallmark symptoms as postexcertional malaise, which was objectively confirmed by to excercice test with O2 measurement separated by 24 hs, the first having normal results and the second showing a marked decreased in cardiovascular and muscular capacity. My OCD started 2 years after the onset of ME, and I´m sure I developed it in response to the overwhelming fear that memory impairment caused by ME provoked in me. Any toughs about this?

 

[A.B.]

Another thing is that asking CFS patients on social media to participate in a study on OCD is guaranteed to give a biased sample since patients with OCD are much more likely to participate when they see that this is about OCD.

The stated goal of this study is to find out if patients with CFS are more likely to have OCD. The study design is likely to exaggerate the prevalence of OCD.

 

[sarah darwins]

This particular research study is part of an undergraduate degree and is not going to be published. I know this for a fact.

Sorry, but the research element of it already has been published. It's on the internet, and publicised through social media networks with global reach.

I feel a lot of sympathy for the student, who has been badly advised and let down. I think it's irresponsible for university departments, in whatever discipline, to encourage or sanction students to approach patient groups in such a public way. It's likely to make waves, and university departments have a responsibility to ensure that their students are aware of this.

If I made any comment critical of this individual student, please delete it. We definitely should tread lightly there. But not where university faculties with supervisory responsibilities are concerned.

The internet has changed things. Going online with research is not the same thing at all as approaching individuals one to one in real life. The very act of putting the research survey out there contributes to the public discourse on a disease, in however small a way. I get the feeling students are not being made aware of this.

As we know all too well, ME isn't a lifestyle curiosity. It isn't an interesting behavioural quirk. It's a serious illness. Any student at any level proposing to run a publicly available research survey touching on the illness should be made fully aware of this and their activities carefully supervised.

 

[barbc56]

Point taken! @Kina
I think the saying about what assumptions mean applies here.

Thanks!

Barb

 

[TiredSam]

When you respond here, please consider that the student might be reading this and then consider if you were this student, how some of these comments would make you feel.

I hope she finds it educational and informative.

By filling out this questionnaire does not mean to say that you have OCD.

What? Why would it? Why would anyone think it did?

Everybody has OCD, but its level is different for everyone.

Nonsense.

it could just be that they like to order their clothes in their wardrobe.

Just because you friend says "that's a bit OCD" when you rearrange your wardrobe doesn't mean either of you have a clue about real OCD.

Some of the research I have read suggests to me that there could be a link between OCD and M.E

Oh really. What research?
Did this student consider the feelings of M.E. sufferers or OCD sufferers when she chose those conditions as her playground without bothering to find out anything about either of them? And if she is engaged in a scientific search for the truth, what on earth have her supposed feelings got to do with anything?

 

[barbc56]

Hopefully the paper will be a learning experience for this student.

I think I will take a step back and chill a bit and look at this later. It was just too easy to get caught up in all this. Understandable with our history and we are only human. However,in the great scheme of things, at least in this particular case, maybe discretion is the better part of valor?

Barb

 

[SOC]

This student needs to understand how badly taught and badly misled she is by her university -- or at least that particular department of her university. I don't blame an undergraduate for not knowing how to construct a well-designed research project if they have never been taught how to do it. Although I must say some of the basic principles of polling -- such as properly identifying your sample set -- she should have been taught at about 12yo. The professor should have warned the students about the dangers of using social media as a way of collecting scientific data... if it can even be called that.

While I think it's important not to heap the kind of scorn on an undergraduate that we would on a professional researcher for very poor quality research, it's equally important not to leave the student with the impression that what her instructors are allowing as 'research' is anywhere near acceptable in any other scientific framework, including that of undergraduates in other fields.

She should also realize that her very public and highly inaccurate declarations about the nature of OCD do not make her look good, nor will they reflect well on her in the future when potential employers are digging into her public history. It's never good to make a big spectacle of your ignorance.

This kind of naive (putting the best spin on it) undergraduate work shouldn't be this public; it can be embarrassing in the future when one is trying to build a professional reputation. I would never have put my undergraduates in this position. Polling your fellow students in the dorms about their sexual proclivities and writing it up as an undergraduate paper may produce something foolish and nonsensical (or not ), but it won't make it past your professor's file cabinet. That's where undergraduate projects belong, not in the wide public where they likely to insult or harm other people, leave the students open to major (and often justified) criticism, and proclaim the ignorance (which all undergrads have) of the author for all eternity.

Shame on this university for putting it's students in this position.

 

[Hip]

This psychology student must have been asleep in the OCD lecture, because the way she writes about it in the above excerpt shows she doesn't really have a clue about it.

To make a statement like that, presumably you must be pretty knowledgable about OCD yourself; can you then please explain exactly why you think this student lacks the knowledge of OCD that you apparently possess?

A little bit OCD? The student seems to be confusing the everyday slangy meaning OCD has been given with the life-consuming condition she claims to be studying.

Hold on, I presumed you had some knowledge of OCD! But you seem to be unaware of some very basic facts: that obsessive-compulsive is a personality trait, and like all personality traits in psychology, is measured on a continuous scale, not a yes / no scale.

So the student knows her stuff: everyone does indeed have a bit of OCD.

Whereas you don't seem to (know your stuff, that is).

Some of the research I have read suggests to me that there could be a link between OCD and M.E

Oh really. What research?

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.

At my CFS self-help group there are 3 psychologists who are vociferous in their condemnation of how some of their colleagues have psychologised our physical illness. In the UK there should be a professional body that is equally disgusted with how some of their members are abusing a whole patient population. In any other profession a group of idiots causing so much damage would have been called to account long ago.

I agree with you that ME/CFS has be woefully over-psychologized — though not with respect to its symptoms, since quite a few ME/CFS symptoms are indeed psychological/mental (eg: brain fog, sound sensitivity, emotional lability, stress or discord sensitivity), but rather that ME/CFS has been wrongly psychologized in the sense of having been assumed to have psychological causes.

This idea that ME/CFS might be caused purely by psychological factors (an "all in the mind" disease) has been great disaster that tragically befell the world of ME/CFS research, and has probably set back the search for a cure or effective treatment for ME/CFS by 20 or 30 years. This is indeed a terrible thing that psychologists have done to ME/CFS patients.

However, there is no need to work out your anger by wantonly criticizing this young student (especially since your criticisms are not even correct).

Of course, if the student were to go off and use the questionnaire results to suggest that ME/CFS had a purely psychological cause, then yes, a few explanatory word to put her straight on that matter would be in order. But that would be a different situation.

There is so much contrary to basic science and research principles here that it almost looks like some kind of joke

Are you just attacking psychology because you don't like it, or is there some logic to your assertion that this questionnaire is contrary to basic science and research principles? If so, please explain your criticism (and without the weasel words please). The OCD questionnaire being used here is the Obsessive-Compulsive Inventory Revised (OCI-R). It looks like the standard sort of questionnaire used throughout psychological research. So please explain what specifically you think is wrong.

She should also realize that her very public and highly inaccurate declarations about the nature of OCD do not make her look good, nor will they reflect well on her in the future when potential employers are digging into her public history. It's never good to make a big spectacle of your ignorance.

As mentioned above, the psychology student is right regarding her description of OCD, and those here criticizing this description are wrong.

So it turns out that your own very public and highly inaccurate declarations do not make you look good, nor do they reflect well on the ME/CFS community. And as you said to the student: it is never good to make a big spectacle of your ignorance.

 

[alex3619]

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.

 

[TiredSam]

To make a statement like that, presumably you must be pretty knowledgable about OCD yourself; can you then please explain exactly why you think this student lacks the knowledge of OCD that you apparently possess?

Seeing as you're so fond of googling, why don't you start with Wikepedia:

Obsessive–compulsive disorder affects about 2.3% of people at some point in their life.[7] Rates during a given year are about 1.2% and it occurs worldwide.[2] It is unusual for symptoms to begin after the age of thirty-five and half of people develop problems before twenty.[1][2] Males and females are affected about equally.[1] In English the phrase obsessive–compulsive is often used in an informal manner unrelated to OCD to describe someone who is excessively meticulous, perfectionistic, absorbed, or otherwise fixated.[8][

This accords with what I've been saying, ie it's not everybody, but 2.3%, and the current slangy meaning has nothing to do with the real condition.

OCD is a mental disorder, not a personality trait. I'm not really into trait theory, but even if you accept it, it's a bit of a leap to say that because obsessionality appears on some lists of personality traits, then everyone must have OCD to some extent.

The fact that there are scales to measure severity of symptoms does not mean that everybody has it because we must all be somewhere on a scale. You could make that argument about anything.

Someone exhibiting OCD signs does not necessarily have OCD. Behaviors that present as (or seem to be) obsessive or compulsive can also be found in a number of other conditions as well, including obsessive–compulsive personality disorder (OCPD), autism, disorders where perseveration is a possible feature (ADHD, PTSD, bodily disorders or habit problems),[32] or sub-clinically.

I hope you are not confusing OCD with obsessive compulsive personality disorder?

And yes, I am "pretty knowledgable" about OCD thanks.

 

[Woolie]

Once again, some academically bankrupt university psych dept is teaching undergraduates that research involves poorly constructed questionnaires asking questions of a completely uncontrolled and therefore unidentifiable population.

I've heard that in the UK, all accredited Psychology programmes have to include an undergraduate research project at third year. Each academic staff member can have dozens to supervise at any time, and they just churn 'em out.

 

[TiredSam]

I should probably leave this alone, but I can't help wondering whether swapping the terms OCD and ME might help to demonstrate how offensive it is:

I am asking diagnosed OCD patients to fill out this questionnaire, to find out if OCD sufferers are more likely to have ME tendencies, than healthy people. By filling out this questionnaire does not mean to say that you have ME. Everybody has ME, but its level is different for everyone. Some people like to a bit of a snooze in the afternoon, some people like to sit down and have a rest at certain times in the day. ME can be a really debilitating illness to have for some people and to other people it could just be that they feel a bit drowsy after a large meal.

If anyone said ME was just a trait, and everyone has it to some extent because we can all be placed on a scale of tiredness, it would be pretty annoying.

I would welcome research into a link between OCD and ME if it was done properly by someone who had an understanding of both conditions, respect for both patient populations, and an idea how to do research. Anything less than that is harmful, as the last 30 years have shown in the case of ME.

As far as I'm concerned there is already a link between OCD and ME - both are serious illnesses which have had their names hijacked, leading to misunderstanding and down-playing of their severity and the life-destroying affect they have on patients.

 

[adreno]

Everybody has OCD

No, they don't. OCD is a diagnostic code, it's not a disease, or even a trait. It's a label that a psych can slab on you, if it pleases him. DSM junk.

 

[lauluce]

Sorry, but the research element of it already has been published. It's on the internet, and publicised through social media networks with global reach.

I feel a lot of sympathy for the student, who has been badly advised and let down. I think it's irresponsible for university departments, in whatever discipline, to encourage or sanction students to approach patient groups in such a public way. It's likely to make waves, and university departments have a responsibility to ensure that their students are aware of this.

If I made any comment critical of this individual student, please delete it. We definitely should tread lightly there. But not where university faculties with supervisory responsibilities are concerned.

The internet has changed things. Going online with research is not the same thing at all as approaching individuals one to one in real life. The very act of putting the research survey out there contributes to the public discourse on a disease, in however small a way. I get the feeling students are not being made aware of this.

As we know all too well, ME isn't a lifestyle curiosity. It isn't an interesting behavioural quirk. It's a serious illness. Any student at any level proposing to run a publicly available research survey touching on the illness should be made fully aware of this and their activities carefully supervised.

I can absolutely assure you and everybody that at its peak, OCD can be as disabling as middle to late stage Alzheimer for example... I personally, before finding the right treatment, was unable to study, work, and found difficult even the most basic tasks as making the bed or tiding my shoes for example... should I have received the right treatment right after the onset, I´m completly sure I had never go trhough such things, It would have resolved in one or two months, since at least in my case, the disease was progressive. Ten years after the offset, when I finaly received the treatment, I was able to improve, and regain my ability to work and study but there are still remmants of the symtoms and I have to use a lot of willpower to keep them at bay, not to mention taking 3 expensive and full of side effects meds every day. If you know somebody with OCD, tell him to research, clearly the mos helpul treament is "exposure and response prevention technique" not alone but combined witch serotonin reuptake inhibitors and some drug who blocks glutamate activity. There´s also tryptophan, vitamin b6 and b3 t increase serotonin production, but as you might guess, since selling that is not proffitable, I don´t know any doctor who prescribes such things (nutrients)

 

[Hip]

I hope you are not confusing OCD with obsessive compulsive personality disorder?

If you read the Wikipedia article on obsessive compulsive personality disorder (OCPD), you see that there is a high degree of comorbidity between OCD and OCPD, and very hard to distinguish one from the other. So it is not clear whether these are separate conditions, or whether OCD is just a more severe form of OCPD.

Similarly with something like anxiety. You find that even among what we consider mentally normal people, some individuals are naturally of a more anxious disposition than others. There is a whole spectrum of anxiety levels in normal people, from the super-laid back, to the people who tend to be always a bit tense or worried.

At what point to you start calling anxiety a mental disorder? Clearly, the degree of anxiety an individual may have is on a continuum, starting with normal variations of personality, and ending up with mental disorder.

What is classed as a mental disorder depends where you draw you dividing line.



Even for something like psychosis, there is a continuum. There may be no clear dividing line between normal and psychotic. Normal people can have psychotic traits. For example: Comedians have high levels of psychotic traits.

 

[SOC]

Some psychologists like to pathologize normal behavior. That doesn't make it true or real.

Plenty of sensible psychologists understand the difference between normal and pathological behavior and don't claim everyone has OCD, MDD, autism, blah, blah, blah, spectrum blah blah.

The point of defining an illness/disease is to distinguish something that's pathological from what is not. Everyone is not given a tachycardia diagnosis just because sometimes their heart beats fast. Yes, there's a continuum in just about everything. Lots of people drink alcohol. Some are alcoholics. That doesn't mean everyone has alcoholism but its level is different in everyone. It's only a defined pathology, like OCD, when it becomes.... get this... pathological.

 

[Hip]

Some psychologists like to pathologize normal behavior.

I think you may have misunderstood this concept of personality traits. Psychologists are not pathologizing a mental trait just because they define and measure it.

Some personality traits do not even have a pathological end to their spectrum. For example, on the introvert—extravert dimension, neither extreme introverts nor extreme extraverts are considered to be pathological.

It's only a defined pathology, like OCD, when it becomes.... get this... pathological.

You seem to think that there is some kind of marker that distinguishes between normal and pathological levels of a trait or behavior. But I am not aware of any.

A lot of the time, the difference between normal and pathological is determined by the society we live in. Homosexuality was considered a pathological trait and behavior not so long ago; but now it is viewed as perfectly normal. In the past, people who saw angels played a role in religious life in many religious traditions; now we class this as a symptom of schizophrenia.

Saying that it is "only a defined pathology when it gets pathological" is tautological, and says nothing.

 

[SOC]

Saying that it is "only a defined pathology when it gets pathological" is tautological,

No shit, Sherlock. That was the point.

 

[Hip]

No shit, Sherlock. That was the point.

What exactly was your point? I can't follow your argument because you seem to be making contradictory statements.

 

[EllenGB]

Some psychologists like to pathologize normal behavior. That doesn't make it true or real.

Plenty of sensible psychologists understand the difference between normal and pathological behavior and don't claim everyone has OCD, MDD, autism, blah, blah, blah, spectrum blah blah.

The point of defining an illness/disease is to distinguish something that's pathological from what is not. Everyone is not given a tachycardia diagnosis just because sometimes their heart beats fast. Yes, there's a continuum in just about everything. Lots of people drink alcohol. Some are alcoholics. That doesn't mean everyone has alcoholism but its level is different in everyone. It's only a defined pathology, like OCD, when it becomes.... get this... pathological.

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