Possible determinants of severe ME

T

thefreeprisoner

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Wow. This study is FASCINATING. Thanks for posting, Jenny.

I feel very lucky now, because when I was in hospital, the doctors apparently sent a physio to see me, and this was recorded in my notes, but I never saw one.
Then at a recent appointment with my neurologist, she recommended I see a physio too. However, my instinct told me this would not be a good idea. Now I know why.

Gerwyn, Garcia, Maarten, (and any other trained scientists / statisticians) are you able to have a look at this study and give it some deep criticism? I'd love to know how reliable it is if and when I need to take it to my neuro / GP.

Rachel xx
 

Jenny

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Wow. This study is FASCINATING. Thanks for posting, Jenny.

I feel very lucky now, because when I was in hospital, the doctors apparently sent a physio to see me, and this was recorded in my notes, but I never saw one.
Then at a recent appointment with my neurologist, she recommended I see a physio too. However, my instinct told me this would not be a good idea. Now I know why.

Gerwyn, Garcia, Maarten, (and any other trained scientists / statisticians) are you able to have a look at this study and give it some deep criticism? I'd love to know how reliable it is if and when I need to take it to my neuro / GP.

Rachel xx
I'm the Editor of a psychology journal and I review articles with this kind of methodology and make decisions on publication.

They've mentioned the main weaknesses in the study, the most important of which is that it's cross-sectional (at one point in time) rather than longitudinal (where there are several data collection points), so we can't conclude that poor early management led to more severe illness. Also, of course it's questionable how far you can rely on respondents' recall of how they were treated, which might have been some time ago (recall bias).

There was a possible response bias, which they discuss, and low response rate, so we don't know how far the findings can be generalised to the wider population of people with ME.

They mention the fact that the personality test used hasn't been validated on people with ME, but they should have included data on the internal consistency reliability of the personality sub-scales. A scale can't be valid if the items don't hang together to measure one specific construct. The logistic regression and chi-square stats are appropriate.

So it's a fairly sound study, we can't assume causality, but it is suggestive of damage from inappropriate early treatments and of most personality traits being unimportant in distinguishing between those mildly and more severely affected.

Jenny
 
T

thefreeprisoner

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Wow Jenny, I didn't know that. I assumed you were a campaigner at ME Association.
I am so glad that the methodology is for the most part sound.
I am truly not worthy... thanks again...

Rachel xx
 

Jenny

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No never had any connection with the ME Association! I joined Action for ME when it started in the early 80s, and it was much better than the ME Association then at campaigning. But in recent years Action for ME has been pretty pathetic to say the least, so I've left.

J
 

CJB

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I spent the first few years going to a physical therapist, trying to walk daily and trying to do the same yoga practice I was doing before I got sick. I was also ordered to see a raft of doctors for insurance purposes. Those were particularly brutal. I had to cancel about half of my phys ther appts and continued to get sicker and sicker. Makes me wonder if a doctor had told me to rest and take it seriously, if I would'nt have gotten so sick.

I don't know about the rest of the world, but here in the US, it's pretty much accepted as truth that you're killing yourself if you don't exercise. I certainly believed that when I got sick.
 

Tammie

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Interesting study, although the charts were a bit challenging for me to understand in my current foggy state....the summaries were quite helpful, though

one thing I wonder is how they determined severity - I mean I know that they said they used the Barthel scale, but when i looked up info about it, it only goes up to 20 points, and on the study they were talking about scores of up to 70 points.....anyone have an explanation for that?
 

Dolphin

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I spent the first few years going to a physical therapist, trying to walk daily and trying to do the same yoga practice I was doing before I got sick. I was also ordered to see a raft of doctors for insurance purposes. Those were particularly brutal. I had to cancel about half of my phys ther appts and continued to get sicker and sicker. Makes me wonder if a doctor had told me to rest and take it seriously, if I would'nt have gotten so sick.

I don't know about the rest of the world, but here in the US, it's pretty much accepted as truth that you're killing yourself if you don't exercise. I certainly believed that when I got sick.
Sounds a bit similar to me: over 100 physiotherapist (=physical therapist) appointments in the first 5 years (although I wasn't undiagnosed). I was mild for first 4.5 years (full-time education). Severe/very severe last 15 years.
 
T

thefreeprisoner

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We have to get this message out to anybody and everybody recently diagnosed with ME/CFIDS as a matter of urgency:
Do not get physio.
Listen to your body and only do 70% of what you think you can do.

I have read some heartbreaking stories on the internet of people who have been diagnosed with ME/CFIDS who just keep pushing themselves because they think 'use it or lose it'. It panics me every time I see that, because I know what's ahead for them.

Spread this message far and wide, folks...

Rachel xx
 
G

Gerwyn

Guest
Wow. This study is FASCINATING. Thanks for posting, Jenny.

I feel very lucky now, because when I was in hospital, the doctors apparently sent a physio to see me, and this was recorded in my notes, but I never saw one.
Then at a recent appointment with my neurologist, she recommended I see a physio too. However, my instinct told me this would not be a good idea. Now I know why.

Gerwyn, Garcia, Maarten, (and any other trained scientists / statisticians) are you able to have a look at this study and give it some deep criticism? I'd love to know how reliable it is if and when I need to take it to my



Rachel xx

There is more good than bad

The good bits are;

There is an inverse relationship between personality problems and severity of symptoms ---the less neurotic you are the better your symptoms----Now if wesselly's theory re chilhood abuse was correct the data would show the more neurotic you are the worse the symptoms -----this blows wesselly,s theory out of the water!

The strenght of the relationship ith ME patients who had a mother with ME is staggering this is entirely consistent with the theory of mitochondrial dysfunction as you get all your Mitos from mum.

Psychiatrists hardly ever see severe ME patients

persistence of ME proportional to the severity of the initial infection

neuroticism and perfectionism not related to severity or duration of illness

Depression is the consequence of medical treatment and not the illness

The Bad

Personality test not validated
Retrospective- memory is a construction how accurate is the recall

Doubt about diagnosis of mild cases

using stats on subjective parameters which may not be distributed in a population in a normal fashion this means the distribution pattern bell shaped - categorisation might not generally apply to a population in general no CI,s etc

overall very interesting and worthwhile

Rachel xx[/QUOTE]
 

Jenny

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There is more good than bad

The good bits are;

There is an inverse relationship between personality problems and severity of symptoms ---the less neurotic you are the better your symptoms----Now if wesselly's theory re chilhood abuse was correct the data would show the more neurotic you are the worse the symptoms -----this blows wesselly,s theory out of the water!

The strenght of the relationship ith ME patients who had a mother with ME is staggering this is entirely consistent with the theory of mitochondrial dysfunction as you get all your Mitos from mum.

Psychiatrists hardly ever see severe ME patients

persistence of ME proportional to the severity of the initial infection

neuroticism and perfectionism not related to severity or duration of illness

Depression is the consequence of medical treatment and not the illness

The Bad

Personality test not validated
Retrospective- memory is a construction how accurate is the recall

Doubt about diagnosis of mild cases

using stats on subjective parameters which may not be distributed in a population in a normal fashion this means the distribution pattern bell shaped - categorisation might not generally apply to a population in general no CI,s etc

overall very interesting and worthwhile

Rachel xx
[/QUOTE]

I'm afraid I have to disagree with some of this Gerwyn.

Significantly more psychiatrists were involved with severely affected patients as compared to the mildly affected.

They didn't ask about severity of initial infection so we don't know about the relationship between persistence and initial severity.

Their discussion of depression is based on their interpretation of others' findings - nothing in their study enabled them to look at how far depression was an outcome of the illness.

Some personality related attitudes - high self efficacy and high self discipline were related to severity.

Jenny
 

Dainty

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I spent the first few years going to a physical therapist, trying to walk daily and trying to do the same yoga practice I was doing before I got sick. I was also ordered to see a raft of doctors for insurance purposes. Those were particularly brutal. I had to cancel about half of my phys ther appts and continued to get sicker and sicker. Makes me wonder if a doctor had told me to rest and take it seriously, if I would'nt have gotten so sick.

I don't know about the rest of the world, but here in the US, it's pretty much accepted as truth that you're killing yourself if you don't exercise. I certainly believed that when I got sick.
We have to get this message out to anybody and everybody recently diagnosed with ME/CFIDS as a matter of urgency:
Do not get physio.
Listen to your body and only do 70% of what you think you can do.

I have read some heartbreaking stories on the internet of people who have been diagnosed with ME/CFIDS who just keep pushing themselves because they think 'use it or lose it'. It panics me every time I see that, because I know what's ahead for them.

Spread this message far and wide, folks...

Rachel xx
Agreed with both of you!

I still have to battle the "use it or lose it" mentality. For those like me here's a note of encouragement: before I became ill I was an athlete where 20 push-ups were no big deal. After 3 years of being mostly bedridden one day I impulsively decided to test my strength. Having no clue what to expect I dropped and did one, then two, then three perfect push-ups, arms shaking with effort on the last one. Sure, I was nowhere near my former glory, but my little test proved to me that if I was this strong after years of being bedridden then surely I have no lost anything that can't be regained on the return of my health.

Of course, I paid for that little experiment big time, but it was worth it.
 
G

Gerwyn

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hi jenny fewer patients were seen by psychiatrists in absolute terms than those with mild symptoms thats what I read--too quickly

They talk about severity of infection and duration of symptoms being consistent with their findings

they conclude that depression is more likely to be related to the treatment than the disease

The confidence intervals for the sub domains are far too wide to have any meaning The Ci,s in the main personalty headings are ok-ish

For me self efficacy and self discipline are a product of cultural display rules than personality but of course this is debatable----nice to talk to a fellow psychologist
 

Jenny

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hi jenny fewer patients were seen by psychiatrists in absolute terms than those with mild symptoms thats what I read--too quickly

They talk about severity of infection and duration of symptoms being consistent with their findings

they conclude that depression is more likely to be related to the treatment than the disease

The confidence intervals for the sub domains are far too wide to have any meaning The Ci,s in the main personalty headings are ok-ish

For me self efficacy and self discipline are a product of cultural display rules than personality but of course this is debatable----nice to talk to a fellow psychologist
Not sure I understand what you mean Gerwyn - 'fewer patients were seen by psychiatrists in absolute terms than those with mild symptoms'?

Anyway we can't conclude that psychiatrists see fewer severely ill patients - in this sample, 28% of the severe cases had seen a psychiatrist as compared to 13% of the mild cases.Nothing can be concluded about how many patients psychiatrists see from the absolute numbers.

'Severity of infection and duration of symptoms being consistent with their findings'? Sorry I don't understand.

None of the data they collected allowed them to conclude that depression is more likely to be related to treatment than the disease - no causal conclusions are possible from this design. This was their interpretation of other people's findings.

Yes, self-efficacy and self discipline are not usually seen as personality traits - that's why I called them personality-related attitudes.

I think this is an important study and we can use it in our advocacy etc, but it's important not to over-interpret the findings. There's plenty of good stuff here without going beyond the data.

Jenny
 
G

Gerwyn

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Not sure I understand what you mean Gerwyn - 'fewer patients were seen by psychiatrists in absolute terms than those with mild symptoms'?

Anyway we can't conclude that psychiatrists see fewer severely ill patients - in this sample, 28% of the severe cases had seen a psychiatrist as compared to 13% of the mild cases.Nothing can be concluded about how many patients psychiatrists see from the absolute numbers.

'Severity of infection and duration of symptoms being consistent with their findings'? Sorry I don't understand.

None of the data they collected allowed them to conclude that depression is more likely to be related to treatment than the disease - no causal conclusions are possible from this design. This was their interpretation of other people's findings.

Yes, self-efficacy and self discipline are not usually seen as personality traits - that's why I called them personality-related attitudes.

I think this is an important study and we can use it in our advocacy etc, but it's important not to over-interpret the findings. There's plenty of good stuff here without going beyond the data.

Jenny
I think 35 patients with severe symptoms seen by psychos compared with 70 odd with mild symptoms I initially read this too quickly perhaps because that is what i was expecting and didn,t spot the % figures

The parts re depression severity and duration are clearly stated in the study they are the authors opinion but everything in psych studies is an opinion! the study probably didn,t merit the conclusions but they did so conclude.In any objective terms the subdomain analysis is to uncertain to draw any conclusions from. Personality related attitude is at best debatable but in any event they arent personality traits and I specifically talked about personality.
 

Jenny

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I think 35 patients with severe symptoms seen by psychos compared with 70 odd with mild symptoms I initially read this too quickly perhaps because that is what i was expecting and didn,t spot the % figures

The parts re depression severity and duration are clearly stated in the study they are the authors opinion but everything in psych studies is an opinion! the study probably didn,t merit the conclusions but they did so conclude.In any objective terms the subdomain analysis is to uncertain to draw any conclusions from. Personality related attitude is at best debatable but in any event they arent personality traits and I specifically talked about personality.
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Hi again Gerwyn

I'm afraid I'm still not clear about what you are saying about depression severity and duration but it's important to be clear that this study does not enable conclusions to be drawn. I think we started out talking about Rachel showing these findings to her doc so we need to concentrate on the evidence from this study. I haven't read the other studies they discuss so can't say whether their view of them can be supported.

We can't read much into the self efficacy and self determination findings because of measurement issues, and we don't know how they defined self determination. It could be seen as similar to internal locus of control though (feeling that you has some influence on what happens to you), which some argue is related to conscientiousness - one of the Big Five personality traits. If this was a clear finding (which it isn't) it might suggest we'd all be better off resigning ourselves to whatever our illness brings rather than trying to find ways to get better!

It's good to have a chance to get your teeth into a study like this isn't it!

Jenny