Help me find some facts! :)

[Scarecrow]

That "female and overweight" thing sounds like rubbish to me

I kid you not: when I was 21 or 22 and had my first referral to the Infectious Diseases Unit (who do their best to tolerate those with ME in my local area), I was 8 stone 3. I'm 5ft 2. The second, younger doctor I saw took a good look and me and told me I could do to lose a little weight.

My BMI was 20.8 and I don't have a slender frame.

I dread to think what he would say about me now.

 

[Sasha]

I kid you not: when I was 21 or 22 and had my first referral to the Infectious Diseases Unit (who do their best to tolerate those with ME in my local area), I was 8 stone 3. I'm 5ft 2. The second, younger doctor I saw took a good look and me and told me I could do to lose a little weight.

My BMI was 20.8 and I don't have a slender frame.

I dread to think what he would say about me now.

 

[JaimeS]

That "female and overweight" thing sounds like rubbish to me,

It's code for 'hysterical and lazy'.

-J

 

[Tony]

There's this from the CFIDS society in 2010 referring to a 2004 study:
http://webcache.googleusercontent.c...-chronicfatigue.pdf+&cd=8&hl=en&ct=clnk&gl=au

"For others, CFS has a profound impact, and they may be housebound or bedbound most of the time. About
25% of people with CFS are fully disabled by the illness (1)."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021257/

Though I can't find where in the study it actually says what is claimed...maybe someone could read it all the way through.

 

[Sasha]

There's this from the CFIDS society in 2010 referring to a 2004 study:
http://webcache.googleusercontent.com/search?q=cache:iVtBtWwSCkIJ:www.um.es/lafem/Actividades/CursoBiologia/Consultas/Actual-chronicfatigue.pdf &cd=8&hl=en&ct=clnk&gl=au

"For others, CFS has a profound impact, and they may be housebound or bedbound most of the time. About
25% of people with CFS are fully disabled by the illness (1)."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021257/

Though I can't find where in the study it actually says what is claimed...maybe someone could read it all the way through.

Thanks, Tony - that sounds promising!

 

[Valentijn]

It's code for 'hysterical and lazy'.

I always assumed hysteria would burn the calories ... sounds like a lot of running around and arm-flailing should be involved

 

[Scarecrow]

Crikey, they've got it in for old fat women haven't they. That "female and overweight" thing sounds like rubbish to me, something White's pulled out of the Wichita research or something.

I've only just realised the significance of your 'Wichita' comment. Maybe I don't want to get back to Kansas after all.............

 

[Scarecrow]

Though I can't find where in the study it actually says what is claimed...maybe someone could read it all the way through.

This is the link:
http://www.rds.hawaii.edu/ojs/index.php/journal/article/view/14
Disability in Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue
Adam W. Carrico, Leonard A. Jason, Ph.D., Susan R. Torres-Harding, Ph.D., and
Elizabeth A. Witter
Center for Community Research
DePaul University, Chicago, IL

I have to do this quickly because I'm short of time so would be good if someone checks:

The present investigation examined a group of persons with Chronic Fatigue
Syndrome, who fully met the US case definition for CFS (Fukuda et al., 1994), and a

group of persons with Idiopathic Chronic Fatigue (ICF), who met partial but not full
criteria for chronic fatigue syndrome. This larger sample of persons with chronic fatigue
syndrome and with idiopathic chronic fatigue was then classified into the functional
impairment categories proposed by Cox and Findley (2000) using self-reported disability.
It was expected that persons with CFS who fully met the criteria for CFS would be more
severely disabled than those only partially meeting CFS criteria. In addition, the
occurrence of symptoms, the severity of symptoms, and scores on other disability
measures were examined across the disability groups. It was expected that persons with
greater disability according to self-report would exhibit increased symptom occurrence,
more severe symptoms, and greater disability on other measures of functional status.

The data are derived from a larger community-based study of the prevalence of
Chronic Fatigue Syndrome (for more details of this study see Jason, Richman, et al.,

1999).
This larger study was carried out in three stages. Stage 1 involved administering
an initial telephone-screening questionnaire in order to identify the symptoms of Chronic
Fatigue Syndrome. Stage 2 consisted of the administration of a semi-structured
psychiatric interview. In Stage 3, participants underwent a complete physical
examination. Upon completion of the study, a team of four physicians and a psychiatrist
made the final diagnoses of CFS, ICF, or fatigue explained by medical or psychiatric
condition. These physicians were familiar with the CFS diagnostic criteria and did not
know the experimental status of the participant. Two physicians independently rated each
case to determine whether the participant met the CFS case definition (Fukuda et al.,

1994). If a disagreement occurred, a third physician rater was used to arrive at a
diagnostic consensus. Following this final stage, four physicians and a psychiatrist made
a final diagnosis.

18,765 people completed the screening questionnaire.

Participants were then classified by independent physician consensus. For
participants who reported chronic fatigue, physicians diagnosed 32 people with CFS, 45
people with idiopathic chronic fatigue, and 89 people with fatigue explained by a medical
or psychiatric illness.

Levels of Disability
As part of the Screening Questionnaire, participants were asked to describe the
impact of their fatigue during the last month on a seven point scale, with 1 being
bedridden and 7 being able to do all work or family responsibilities without any
problems. Responses to this question were then used to classify participants into the
groups proposed by Cox and Findley (2000). The mild group consisted of participants
who reported being able to work full time and on some family responsibilities, but who
had no energy left for anything else. The moderate category consisted of participants who
reported being able to do light housework or work part time or work on some family
responsibilities. The severe group comprised participants that reported being ambulatory,
but unable to do light housework. Finally, the very severe group reported being bedridden
and unable to work or do other activities. Only two persons were classified into the very
severe group. Therefore, the severe and very severe groups were combined and treated as
one group (severe/very severe) in the subsequent analyses.

This is the first part of a table which I think explains the numbers and this is the part that definitely needs to be verified by someone else.

Table 2
Comparison of Symptom Frequency, Symptom Severity,
and Functional Impairment for the
Mild, Moderate, and Severe/Very Severe Groups1
Mild (N=44)
Moderate (N=22)
Severe/Very Severe (N=9)

Total subjects are 75, which is very close to the combined CFS and idiopathic chronic fatigue groups (32 and 45). [Edited to add that the number of patients in this study was 31 of the original 33 and 44 of the original 45]

9 out of 32 is about 25%. [Edited to add: See post #36 below. 5 out of 31 people with 1994 Fukuda CFS were Severe/Very Severe. This is 16%. Is that 25% figure a misreport]

 

[Sasha]

Thanks, @Scarecrow - so this number that 's so widely used is based on 32 PWME!

 

[alex3619]

At your service. A statement from a health minister in the Lords from 2008:

This is an acknowledgement of a reporting code, and unexplained leaves open a psych diagnosis to the ill informed.

 

[Sasha]

OK, fact fans! New fact: I'm looking for an estimate of the number of PWME who have OI - and, if possible, the proportion that have POTS vs NMH.

Can anyone help?

 

[Valentijn]

OK, fact fans! New fact: I'm looking for an estimate of the number of PWME who have OI - and, if possible, the proportion that have POTS vs NMH.

Can anyone help?

I think Rowe did some papers in that area. More recently Newton did as well, but she might have been more limited in just looking for POTS or similar, not NMH.

 

[Scarecrow]

Thanks, @Scarecrow - so this number that 's so widely used is based on 32 PWME!

Yes. [Edited to add: Or possibly 31. It's difficult to imagine anyone with idiopathic chronic fatigue reporting that their fatigue is so severe that they are unable to do light housework. Who knows?] [Edited further: see post #36! I was in a hurry earlier and missed the data in Table 1. Therefore: the number of people in this study with 1994 Fukuda CFS was 31. The number of these with severe or very severe disability was 5. So not 25%.]

But what's quite neat is that 32/18,765 is 0.17%, which is pretty close to the minimum prevalence of 1994 CDC CFS found by Nacul et al. (post #2).

So a small number of people with Fukuda CFS but based on a large, presumably unbiased starting sample. Wonder if any stats experts could comment? Tagging @Simon, @Snow Leopard, @user9876.

 

[Scarecrow]

OK, fact fans! New fact: I'm looking for an estimate of the number of PWME who have OI - and, if possible, the proportion that have POTS vs NMH.

Can anyone help?

The IOM references might be a good starting point for the proportion with OI. I doubt that we'll find a breakdown between POTS and NMH but we can but look.

 

[Sasha]

The IOM references might be a good starting point for the proportion with OI. I doubt that we'll find a breakdown between POTS and NMH but we can but look.

Thanks - good thinking - found a top whack of 96%.

 

[Scarecrow]

I missed Table 1
http://www.rds.hawaii.edu/ojs/index.php/journal/article/view/14
Disability in Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue
Adam W. Carrico, Leonard A. Jason, Ph.D., Susan R. Torres-Harding, Ph.D., and
Elizabeth A. Witter
Center for Community Research
DePaul University, Chicago, IL

Table 1
Self-Reported Level of Ability
for the CFS and ICF Groups


CFS (N=31) ICF (N=44)
Level of Ability N N
Mild 14 30
Moderate 12 10
Severe/Very Severe 5 4

Therefore the % of people with Severe/Very Severe disability in CFS was 16%.

If this study was indeed the source of the 25% figure, then the percentage was miscalculated.

 

[Sasha]

Therefore the % of people with Severe/Very Severe disability in CFS was 16%.

If this study was indeed the source of the 25% figure, then the percentage was miscalculated.

The 25% figure refers to the % of PWME who are bedbound/housebound rather than "severe"/"very severe" (unless that's how they're defining it in this paper).

 

[Scarecrow]

@Sasha. About that 25% figure. Have you thought about contacting the 25% group?

 

[Sasha]

@Sasha. About that 25% figure. Have you thought about contacting the 25% group?

I've looked on their website and they make no reference to it. I think they would if they knew where it came from.

Ah well! Diminishing returns now, I think!

 

[Sasha]

Just goes to show we need some proper epidemiology...