Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study, 2019, Slomko et al

Andy

Andy

Retired committee member
Abstract
Objectives The aim of this study was to estimate the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and describe illness characteristics in a community population in Poland. Design: cross-sectional study.

Setting Poland.

Participants Of the cohort of 1400 who self-presented with fatigue only 69 subsequently were confirmed as having CFS/ME using the Fukuda criteria.

Main outcome measures Participants completed the following screening symptom assessment tools: Chalder Fatigue Scale, Hospital Anxiety and Depression Scale (HADS), Epworth Sleepiness Scale (ESS), Composite Autonomic Symptom Score 31 (COMPASS 31), Quality of Life Scale (QOLS). Haemodynamic and autonomic parameters were automatically measured at rest with a Task Force Monitor.

Results In 1308, from 1400 (93%) individuals who identified themselves as fatigued, recognised chronic conditions were identified, for example, neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders. The remaining 69 participants (mean age 38.3±8.5) met the Fukuda defintion for CFS/ME and had baseline objective assessment. The majority had experienced symptoms for over 2 years with 37% having symptoms for 2–5 years and 21.7% for more than 10 years. The COMPASS 31 indicated that 50% have symptoms consistent with orthostatic intolerance. About 43/69 (62%) had Epworth sleepiness scores ≥10, ie, consistent with excessive daytime sleepiness, 26/69 (38%) had significant anxiety and 22/69 (32%) depression measured by HADS A & D. Quality of life is significantly impaired in those with Fukuda criteria CFS (QLS score 64±11) with significant negative relationships between quality of life and fatigue (p<0.0001), anxiety (p=0.0009), depression (p<0.0001) and autonomic symptoms (p=0.04).

Conclusion This is the first study to summarise illness characteristics of Polish CFS/ME patients. Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population.
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Open access at https://bmjopen.bmj.com/content/9/3/e023955
 
Only 89% of those identified in this study as having "CFS/ME" had PEM. By my calculations then only 61.41 (?!) people had ME.
Symptom burden of a polish cohort of CFS/ME patients meeting the Fukuda criteria
The majority of those with CFS/ME had had symptoms for over 2 years with 37% having symptoms for 2–5 years and 21.7% having symptoms for more than 10 years. The vast majority described unrefreshing sleep with impaired short-term memory and concentration (91.3%), postexertional malaise 89%, multi-joint pain without swelling or redness 72.5%, headaches 62.3%, muscle pain 66.7%, sore throat 39.1% and tender cervical or axillary lymph nodes 30.4%.
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I think this is interesting:
Recruitment was based on self-identification in response to an advertisement in CFS/ME community support networks across Poland.
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when combined with this:
Of the cohort of 1400 who self-presented with fatigue only 69 subsequently were confirmed as having CFS/ME using the Fukuda criteria.
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So that seems to be saying that of the 1400 who self identified with fatigue sufficiently to have joined an ME/CFS support network, only 69 actually had ME as defined by the Fukuda criteria (and not all of those had PEM) and the rest had other identifiable disorders.

This suggests a major crisis of misdiagnosis - in either direction. Who knows whether this study is actually any better at diagnosing than their self diagnosis.

Edit: I should have read the full paper first. It says it was also widely advertised in the media. The 1400 were directed to a website to find out more, including what the Fukuda criteria are, and were cut down at this stage to 90.
 
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Trish said:
This suggests a major crisis of misdiagnosis - in either direction. Who knows whether this study is actually any better at diagnosing than their self diagnosis.
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My guess is that the HADS scale was inappropriately used, resulting in a large portion of patients being diagnosed with depression. Fukuda excludes psychiatric disorders. Therefore most of the 654 patients diagnosed with a psychiatric disorder could have something like POTS or CFS instead.

That was my my first thought upon reading the abstract, because something doesn't seem right here. Misdiagnosis is a problem but 93% is far higher than what others have found. Now a look at the study.
 
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Recruitment was based on self-identification in response to an advertisement in CFS/ME community support networks across Poland, as well as a general advertisement on local radio and social media.

Initially any individuals willing to participate were directed to a phone line. Within days of setting up the phone line, it became clear that this mechanism to identify and recruit potential participants would be overwhelmed. The team therefore directed all potential participants to a website where more information about the study was available and where individuals were invited to self-complete the Fukuda criteria online. If individuals, on completing the online scoring, felt that they met the Fukuda criteria4 within 7 days they were invited to attend the research facility.
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It sounds like the step were 93% of participants were considered to not have ME/CFS was this one.

That could indicate a problem with the exclusion criteria in Fukuda, or some hidden problem with the procedure. According to the paper, the patients excluded at this step had neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders.

What may have happened is that they asked about any other diagnosis that patients had, and excluded everyone with some other diagnosis. This is what should be done according to the Fukuda criteria, as they were created for research.
 
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In of itself, I'll need to be convinced that there is much value to this paper.

Conclusion This is the first study to summarise illness characteristics of Polish CFS/ME patients. Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population.
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This study has confirmed for the first time that chronic fatigue is a common symptom experienced by the Polish population and that CFS/ME is an under-recognised syndrome in this group. The key finding of this study is that prevalence is similar to reported data in the other countries and is associated with a large symptom burden and impaired quality of life.
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Can anybody spot anywhere in the paper where they justify these statements?
 
Functional assessment of the cardiac and autonomic nervous system
Cardiovascular and autonomic nervous system measurements were performed with a dedicated high-tech device—Task Force Monitor (TFM, CNSystems, Medizintechnik, Graz, Austria). The main area of TFM application is beat-to-beat analysis of heart rate (ECG) oscillometric and non-invasive continuous blood pressure measurements (oscBP, contBP) and impendance cardiography.15–22 A detailed of study protocol and its methodology have been presented in our previous articles.23 24

In all cases TFM measurements were performed during 10 min of supine rest (phase I) and subsequently asked to standing (phase II) during which changes in heart rate were assessed and where haemodynamic changes were consistent with recognised consensus criteria for a diagnosis of postural tachycardia syndrome (PoTS) made.25

We classified each individual’s autonomic function profile into sympathetic or parasympathetic dominant according to their sympathetico-vagal balance during 10 min of supine rest. This was based on previous studies and assessed using the LF/HF ratio which was considered to suggest a sympathetic dominant pattern if LF/HF was >1 and parasympathetic if the ratio was <1.26 27
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Has anyone here experienced this 'high tech device'?

Edit:

Autonomic function in a polish cohort of CFS/ME patients meeting the Fukuda criteria
When we classified the cohort according to predominance of sympathetic or parasympathetic function, 44/69 (64%) were found to be sympathetic predominant and 25 parasympathetic. When we considered symptom burden between these two phenotypes, there were no significant differences in symptoms or impact on quality of life between the groups (table 3). At rest, the sympathetic predominant group had significantly higher heart rate, ER and LF HRV and reduced LVET, PEP and HF HRV compared with the parasympathetic group. The total PSD was comparable between groups however sympatheticovagal balance was different between the phenotypes with increased LF BPV in both diastolic and systolic blood pressure, reduced baroreflex sensitivity in those with the sympathetic dominant phenotype (table 4).
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out of 1400 ppl feeling chronic fatigued only 69 met fukuda criteria.

some of the symptoms reported by these 69 polish mecfs were:

91.3% short-term memory and concentration
89% postexertional malaise
72.5% multi-joint pain without swelling or redness
66.7% muscle pain
65.2% Dryness eyes mouth (45/69)
62.3% headaches
62% epworth daytime sleepiness scores (43/69)
59.4% Dizziness/headaches (41/69)
50% orthostatic intolerance
42.0% Arrhythmia (29/69)
39.1% sore throat
38% significant anxiety HADS A & D (26/69)
36.2% Sudden paleness (25/69)
32% depression HADS A & D (22/69)
30.4% tender cervical or axillary lymph nodes
 
roller* said:
out of 1400 ppl feeling chronic fatigued only 69 met fukuda criteria.

some of the symptoms reported by these 69 polish mecfs were:

91.3% short-term memory and concentration
89% postexertional malaise
72.5% multi-joint pain without swelling or redness
66.7% muscle pain
65.2% Dryness eyes mouth (45/69)
62.3% headaches
62% epworth daytime sleepiness scores (43/69)
59.4% Dizziness/headaches (41/69)
50% orthostatic intolerance
42.0% Arrhythmia (29/69)
39.1% sore throat
38% significant anxiety HADS A & D (26/69)
36.2% Sudden paleness (25/69)
32% depression HADS A & D (22/69)
30.4% tender cervical or axillary lymph nodes
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I never really understand how one can use Fukuda when PEM, being a hallmark and cardinal symptom. But out of the 1400 participants, 69 Fukuda, and then again 61,5 Canada if 89% of the 69 experienced PEM.
 
Conclusion This is the first study to summarise illness characteristics of Polish CFS/ME patients. Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population.
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[my bold]

Not encouraging.
 
I have not read the paper beyond the abstract but is there any sign of a denominator here? What was the size of population from which this group of 69 people were drawn? Unless we know that I cannot see how anything can be said about prevalence. I also think that self-reporting in response to adverts distributed through healthcare webpages makes interpretation pretty impossible. I imagine that a very high proportion of people with ME do not look at such websites and that quite a lot of people without ME do.
 
Jonathan Edwards said:
I have not read the paper beyond the abstract but is there any sign of a denominator here? What was the size of population from which this group of 69 people were drawn? Unless we know that I cannot see how anything can be said about prevalence. I also think that self-reporting in response to adverts distributed through healthcare webpages makes interpretation pretty impossible. I imagine that a very high proportion of people with ME do not look at such websites and that quite a lot of people without ME do.
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1400 people who declared themselves chronically fatigued.
Recruitment was based on self-identification in response to an advertisement in CFS/ME community support networks across Poland, as well as a general advertisement on local radio and social media.
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Recruitment of the cohort—the prevalence of fatigue in a Polish population
During the media campaign, 1400 individuals identified themselves to the research team as fitting, they believed, the criteria for CFS/ME. One thousand and three hundred eight of those subsequently were found not to meet the Fukuda criteria for CFS/ME.

In the 1308 (93%) individuals who identified themselves as fatigued, recognised chronic conditions were identified. These were conditions associated with the symptom of fatigue and therefore could have been the attributable cause for their fatigue symptoms (and therefore not consistent with the Fukuda diagnostic criteria). These fatigue associated conditions were broadly classified into conditions that were: neurological (n=280, 21.5%), neurodegenerative (n=200, 15%), psychiatric (n=654, 50%) and immunologic (n=174, 13.5%) disorders.
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I'm going to point this out as well.
Contributors JS, DS, SM-G and PZ were involved in writing of the manuscript.
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JS is Joanna Slomko, and PZ is Pawel Zalewski - I know nothing of their previous output, if any. DS is Don Staines and SM-G is Sonya Marshall-Gradisnik who, in my opinion, hype any result they get and it appears they have done the same with this paper, in my opinion.
 
Yes, it's such a basic error and a fundamental one in a paper with 'prevalence' in the title.

It, and the other errors such as using HADS results to eliminate people supposedly with depression, reflect poorly on all of the authors and others involved.

There's an impact on the people who participated in the study to think about too. I imagine a lot of the people will be struggling to be believed and have little support. And this study comes along and says, of 1400 people who think they have ME/CFS, actually 654 of you have a psychiatric condition. I'm not sure how you identify a neurological or neurodegenerative condition with the tests used either.
 
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Exclusive diagnostic criteria cannot be used to establish the prevalence anyway. They will only give a minimum prevalence because in the real world people tend to have more than one health issue.

Neither can inclusive diagnostic criteria that are not tied to some reliable sign of the illness.
 
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