Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

[oceanblue]

Here are a few that occured to me *might* change because of somebody's ME/CFS

Good work. by my count that's 20 questions - is that out of 100?
As you suggest, the answers to many of these questions would probably be affected by any chronic illness, which presumably explains why the ISF group scored similarly to the CFS group.

INterestingly, some of the questions might detect changes in personality itself eg on mood (btrought about by the change in life circumstance), while other questions are simply 'confounded' by illness eg '7. Others have complained that I do not keep up with my work or commitments.' That question is presumably aimed at finding out something about personality from behaviour, but assumes that the responder is healthy.

 

[Dolphin]

Good work. by my count that's 20 questions - is that out of 100?

Yes. I don't claim that's them all.

As you suggest, the answers to many of these questions would probably be affected by any chronic illness, which presumably explains why the ISF group scored similarly to the CFS group.

Yes, although when I wrote illness a lot of the time I was thinking of ME/CFS specifically - probably could have been clearer.

 

[Sunshine]

Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study

Are the CDC doing this for HIV/AIDS also?

 

[Tammie]

Although that poster referenced research on version iii, which is interesting, the paper itself used version iv (ref 20) and part of iv-tr (ref 21):

I know that....I was simply responding to what the poster put on here

 

[Tammie]

Examples would be good for anyone trying to submit a letter (only person I heard of was CBS - don't know whether he has submitted anything, still seeing if he can see a particular questionnaire, decided not to do it, etc).

there have been a few exps on here, though there are definitely a lot more in the tests themselves.....however I am currently far too sick to try to dig up more

to give a very quick exp though, there are questions on there that say thigns like, "my health is not as good as that of most of my friends" or "I don't have the energy to get things done" - I am paraphraising so those aren't the exact way they are worded, but the general idea is that if a healthy person responds to those by saying that they don't have energy, etc, then there may be some persoanlity issues going on, but when someone who is sick answers, of course they are not going to have the energy - if they responded otherwise they woudl be deluding themselves.....so trying to give a test like this to a chronically ill person is inaccurate and is basically done deliberately to put them in a no-win situation (for purposes of "proving" their b/s "studies") - either the sick people lie or are in denial, or they tell the truth and it appears that they have some sort of personality disorder

......this has been shown with other chronic illnesses, too - MS for exp, and they made it very clear that the tests used for this so called "study" are not valid for use in chronic illness pateints

ETA: I wrote this before reading thru the rest of the responses, so I see that you have already done a good job of figuring this out.........sorry about that, but I didn't want to fail to answer your question & I wasn't sure if I was going to have the energy to finish reading

 

[*GG*]

Are the CDC doing this for HIV/AIDS also?

Good question! I doubt it, I think the activist would hang them!

 

[wisentime]

CDC at it again.
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowFulltext&ArtikelNr=319312&Ausgabe=254424&ProduktNr=223864#AC

I'm an Oncology Nurse (15 yrs) with CFS turned drug researcher now retired on disability. This theory makes me laugh. I'd like to meet these people who printed this garbage and ask them if they've ever spent significant time caring for extremely ill people. Chronic pain and fatigue can produce more than half the behaviors mentioned above. I do believe they have it backwards except they save their gluteous maximuses in the last sentence. That's called CYA. If this is who is doing research on CFS we're sunk. Perhaps they need to justify their employment.

 

[oceanblue]

I'm an Oncology Nurse (15 yrs) with CFS turned drug researcher now retired on disability... Chronic pain and fatigue can produce more than half the behaviors mentioned above. I do believe they have it backwards except they save their gluteous maximuses in the last sentence. /QUOTE]

Good to have your perspective given your experience of ill-health; I don't know why researchers don't consider really basic stuff like why ill-health would affect replies ot their questions regardless of personality issues. And you're right about CYA - it's pretty typical. A whole paper talking nonsense with a throwaway line at the end to acknowldege reality. In a more rigorous scientific field, they wouldn't get away with it.

 

[CFIDScandy]

If CSF, as recently proven by Alter and NIH studies has a retroviral component, the only possible personality trait I could justifiably agree with is depression. Depression lowers one's immune response, making one more susceptible to infections of any kind. Add that to people with Compromised Immune Systems from birth, and one almost wonders which came first? The expression of depression, especially in one coming from a family, most of whom have depression, or a Compromised Immune System allowing illness from both viral and bacterial sources wearing down the body to the point that depression is then expressed. If the MRV/XMRV is in the blood system at a rate of 7%, and can be quantified, why worry about personality types with the exception of: after positive diagnosis, the patient may then be non-compliant with a wellness regimen? Boo CDC on this one and shame on you for diverting millions of dollars of specified funds for CFS research in 1996!

 

[lancelot]

Wouldn't it be nice to do a study on personality features and personality disorders for the cohort that works in the CDC's CFS department. I don't think it would shock anyone to see what deviants are studying us.

 

[Sean]

If CSF, as recently proven by Alter and NIH studies has a retroviral component, the only possible personality trait I could justifiably agree with is depression. Depression lowers one's immune response, making one more susceptible to infections of any kind. Add that to people with Compromised Immune Systems from birth, and one almost wonders which came first? The expression of depression, especially in one coming from a family, most of whom have depression, or a Compromised Immune System allowing illness from both viral and bacterial sources wearing down the body to the point that depression is then expressed.

Exactly. Not to mention that depression is nowhere near universal in ME/CFS patients, so it cannot possibly be the primary cause.

Compare and contrast to near universal rates of MLVs (90%+) in ME/CFS patients. The specificity of the infection pattern in ME/CFS patients argues strongly against it being an opportunistic infection.

And why don't non-ME/CFS cases of depression get MLVs (or 'opportunistic' infections in general) at rates of 90%+?

Depression in ME/CFS is far more likely to be a direct physiological result of the infection, and/or an indirect secondary effect (ie reactive depression to the appalling social/financial/personal consequences, the real psycho-social burden component).

 

[lancelot]

Exactly. Not to mention that depression is nowhere near universal in ME/CFS patients, so it cannot possibly be the primary cause.

Compare and contrast to near universal rates of MLVs (90%+) in ME/CFS patients. The specificity of the infection pattern in ME/CFS patients argues strongly against it being an opportunistic infection.

And why don't non-ME/CFS cases of depression get MLVs (or 'opportunistic' infections in general) at rates of 90%+?

Depression in ME/CFS is far more likely to be a direct physiological result of the infection, and/or an indirect secondary effect (ie reactive depression to the appalling social/financial/personal consequences, the real psycho-social burden component).

Not just depression. ALL severely disabling and/or life threatening diseases that are 100% organic and physical such as heart failure, lyme disease, AIDS, Cancer, MS, Parkinson's, etc causes both physical symptoms AND mental symptoms way beyond depression such as anxiety, dementia, personality changes, anger issues, and dozens of neurological symptoms as well. This is a fact, but the mental symptoms are secondary to the physical diseases. But to blame a disabling physical disease as a mental disease because of the presentation of mental symptoms is just plain "bad" science done by someone with a "black" heart or "small" cranium.

 

[Dolphin]

This article is available for free at: http://content.karger.com/ProdukteD...ikelNr=319312&Ausgabe=254424&ProduktNr=223864 (not sure when it became free).

 

[Mithriel]

In the good old days, when they did studies like this, they always had a positive and a negative control the way scientific studies are mean to be done.

They usual had healthy controls and a control group with MS or RA.

ME/CFS was exactly the same as any other group with long term illness. That will be why they stopped.:Retro smile:

Mithriel

 

[Esther12]

I've just got my printer going, so have been marking some of this stuff out (so much easier to do it with a red pen then on a PC screen).

Here are a few that occured to me *might* change because of somebody's ME/CFS - there could be other ones and/or perhaps some of these wouldn't change anybody's answer for that question?

I just checked the distribution for the questions you think could have changed scores:

Paranoid: +1
Histrionic: n/a
Anti-social: n/a
OC: +2
Sc (schizoid or schizotypal): +2
Narcissistic: +3
Avoidant: +1
Negativistic: +3
Sch (schizoid or scizotypal): +1
Borderline: +2
Dependent: +3
Depressive: +2

I'm going to try to find my list of the questions I thought were suspect, and see how they compare.

The paper said: "The prevalence of paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders were significantly higher in CFS and ISF compared to the well controls."

Every one of those would have been affected by the questions dolphin picked out... but dependent, narcissistic and negativistic (the three +3s are not mentioned). Dolphin went for a loose range of questions, and picked out more than I had, but it will be interesting to see how they compare when I find my list.

It would be really great to be able to have a look at the NEO Five-Factor Inventory too.

 

[Esther12]

My tight list was: 7, 28, 57, 68:

Narcissistic: +2
Negativistic: +1
Depressed: + 1.

I've also done a looser list: 5, 7, 9, 12, 21, 22, 24, 27, 28, 34, 35, 39, 40, 41, 56, 57, 61, 63, 65, 68, 69, 71, 77, 81, 83, 86, 88, 97.

I picked out lots of ones related to social isolation that Dolphin did not (maybe that says more about me than the quiz!). These were distributed:

Paranoid: +1
Histrionic: n/a
Anti-social: n/a
OC: +2
Sc (schizoid or schizotypal): +4
Narcissistic: +3
Avoidant: +2
Negativistic: +5
Sch (schizoid or scizotypal): +2
Borderline: +1
Dependent: +4
Depressive: +3

There were lots of other questions where you'd expect CFS to influence your answer too... but a line had to be drawn somewhere. I'm sure that many people with CFS would not answer true to a lot of these questions (I know I wouldn't) - but you would expect someone suffering from CFS to be more likely to answer positively.

There's not a really clear correlation between those sections with many questions which we would expect to be influenced by CFS, although the two sections with no questions which would distort results were also two of the personality disorders which were not found to feature disproportionately with CFS patients.

With the Paranoid section we only marked 1 question as being possibly distorted, but really all but the question on your partner cheating could be affected by bad experiences with the way the medical community has treated CFS:

eg 37: Others will use what I tell them against me.

Seeing as the patients filling in this questionnaire had their answers rather misleadingly presented in a way that could create the impression that CFS is the result of personality disturbance, it may well be reasonable for them to have answered 'true' to that one. Did they know Reeves was involved when filling out the form?

I'm not sure much more can be gained from looking into this without knowing exactly which questions were answered positively for the study.

 

[Dolphin]

Well done, Esther12, on that.

There was a 14 difference on total score that the paper highlights (23.29 vs 9.3) so one can even pick up on that in a letter. A letter wouldn't have to deal with everything, just put doubt on the study's validity.

I would like to see any letter challenge the definition of CFS used (empiric criteria (Reeves et al., 2005)) but what people would put in would be up to themselves. I'm still willing to help but I have a letter in press for that journal, have had a letter published challenging the CDC on the definition earlier this year, etc so think it might be better coming from somebody else (as well as the fact that I've an article and another letter "on the go" i.e. not sent in yet).

 

[Esther12]

The study already puts doubts on it's own validity - surely we can do more than that. Did you write to Reeves about this paper? Do you think that there's any way we'd be able to get the full data they used eg: which patients answered which questions? Or which questions were more likely answered by CFS patients? I've no idea if it would be worth asking for something like that.

I've been planning to draft a letter for months, but things keep getting in the way (my partner's just come down with a migraine, which could mean the next few days are a write off).

Hopefully we'll get something done, and can then decide who should put their name to it. I'd feel a bit silly just writing in as a patient without any title or position to put after my name:

Yours sincerely,

Crazy patient who doesn't want to be told they're crazy.

 

[Dolphin]

The study already puts doubts on it's own validity

Ok, it's a good while since I read it.

- surely we can do more than that. Did you write to Reeves about this paper?

I wrote to him to ask for the table offered in the paper as he was the corresponding author. He wrote a grumpy reply to the acting head Elizabeth Unger and me saying he was no longer involved in the area - it would have been easier if he'd just attached the file. So don't see him being helpful for me anyway.

Do you think that there's any way we'd be able to get the full data they used eg: which patients answered which questions? Or which questions were more likely answered by CFS patients? I've no idea if it would be worth asking for something like that.

In the past, one probably wouldn't have much of a chance with getting such info. But the CDC is talking about sharing data, etc. so perhaps there is a way. Not a priority on my list I'm afraid but perhaps somebody else would push.

I've been planning to draft a letter for months, but things keep getting in the way (my partner's just come down with a migraine, which could mean the next few days are a write off).

Hopefully we'll get something done, and can then decide who should put their name to it. I'd feel a bit silly just writing in as a patient without any title or position to put after my name:

Yours sincerely,

Crazy patient who doesn't want to be told they're crazy.

Re: last point, I agree, we don't any false assumptions made about us.
Great you're thinking of writing a letter.
Word limit 500 but no real reference limit (I've had one accepted with 13 references - although the final version may have fewer) - some journals only allow you 5 references which is really 4 as you have to quote the paper you are replying to.

Have a qualification is possibly an issue. Letters can be co-signed. I became very ill when in college so have no degrees but have got by as hold a voluntary position in a patient organisation. There are people on this thread I'm sure with degrees or qualifications in psychology which might increase the chances a bit (for this journal) over somebody with none. Letters can be co-signed as I say.

 

[Esther12]

Thanks for all the tips.

I'll try to move on with it soon.