Symptom frequency & development of a generic functional disorder symptom scale suitable for use in studies of patients w/IBS, FM and CFS, 2019, Hyland

Andy

Retired committee member
Full title: Symptom frequency and development of a generic functional disorder symptom scale suitable for use in studies of patients with irritable bowel syndrome, fibromyalgia syndrome or chronic fatigue syndrome
Abstract
Objectives
To describe the extent to which irritable bowel syndrome (IBS), fibromyalgia syndrome (FMS), and chronic fatigue syndrome (CFS) exhibit symptom overlap, and to validate a patient-derived, generic symptom questionnaire.

Methods
A patient-derived 61-item symptom-frequency questionnaire was completed by participants recruited through IBS, FMS and CFS self-help websites. Principal axis factor analysis with oblimin rotation was performed separately for those reporting an IBS, FMS or CFS diagnosis.

Results
Questionnaires were completed by 1751 participants of whom 851 reported more than one of the three diagnoses. Stomach pain on at least a weekly basis was reported by 79% of IBS, 52% of FMS, and 43% of CFS single diagnosis participants. Pain increasing the day after activity was reported by 32% of IBS, 94% of FMS, and 85% of CFS single diagnosis participants. Waking still tired at least once weekly was reported by 75% of IBS, 97% of FMS, and 95% of CFS single diagnosis participants. Exploratory factor analysis produced consistent results across all three diagnostic groups, the 61 items loading on 12 correlated factors with a single higher order factor on which all items loaded. Frequency analysis led to the rejection of one item (cold sores on or near lips), and freeform reporting by participants of additional symptoms identified an additional five, namely, restless legs, hair loss/brittle hair/thinning, dizziness/balance problems, blurred vision and urination problems.

Conclusions
IBS, FMS and CFS are polysymptomatic spectrum disorders with a wide range of overlapping symptoms, many of which are unrelated to diagnostic criteria. Frequency analysis and factor analysis confirm the validity of using the same questionnaire across different diagnostic categories. The 65-item general symptom questionnaire (GSQ-65) is a valid generic symptom scale suitable for assessing the many different symptoms of people with IBS, FMS and CFS.
Open access at https://www.sciencedirect.com/science/article/pii/S2095882X18300987
 
I haven’t read beyond the post. But...

To me this is the entirely wrong approach and shows the weakness of the bps approach to these illness . CFS or at least ME is not waking up a bit tired sometimes and It’s irrelevant If once per week people with ibs do. MECFS is a complex, systemic potentially crippling illness with catastrophic impact on all aspects of life across the physical, cognitive, social and sensory domains. IBS isnt. To me the only way you can lump them is by chopping off the more severe ME Presentations and diluting CFS usually to “fatigue plus” which is why I say they have Cinderella bias syndrome.
It’s entirely unhelpful for me seriously ill in bed to have my illness lumped in with ibs.
 
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So what?
What does a scale like this tells about "functional" symptoms? Nothing, as long as it has not been tested against non "functional" symptoms, to see if there is a different pattern or not.
This won't be done, because many times, when a comparison with other diseases is done, it shows millimetric differences and undermines their beautifully crafted theories.
As long as these people will refuse to refute their own ideas, and try to get free of any bias, their field will remain a pseudo-scientific field.

They're delusional in thinking they are scientists.
 
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Exactly. Their aim is to produce a "generic functional disorder questionnaire suitable for patients with a diagnosis of IBS, FMS, and CFS".

Without a comparison to similar organic conditions like multiple sclerosis and diabetes they do not know if the result might just be a questionnaire that measures commonly occurring symptoms in a population with chronic illness.

Scoring high on a "functional disorder symptom" questionnaire will probably be used to argue that the symptoms are not organic in origin. Or at least reinforce the perception that these illneses are somehow different other than currently being largely unexplained.
 
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These two items on the questionnaire are the closest to PEM: "Pain increasing the day after you are active" and "Fatigue increasing the day after you are active".

The latter apparently was included when patients were asked about symptoms that were missing from the questionnaire.

In this study, "fatigue increasing the day after you are active" at least weekly is reported by 84.1% of IBS, 95.7% of FM and 97.3% of CFS patients.

For "Pain increasing the day after you are active" the distribution and percentages are similar but a little lower.

The authors also seem to think that it is sensible to ask patients if they experience this weekly. They might not be experiencing it weekly because they have reduced their activities to avoid it. If they aren't trying to avoid it maybe this symptom isn't that bad.
 
Note how patients were not asked about:
- understandability
- relevance to their personal experience
- whether they believe change on a particular item is representative of their illness improving
- comparability/linearity/weighting of measures eg. is one point of change on one question equal to a similar movement on another question.
- whether this measure is valid in the absence of objective outcome measures.
 
This is a great example of "garbage in, garbage out", as my old statistics teacher would say.

They've taken 3 different conditions, and run a factor analysis on reported "symptoms". In my opinion this does not show anything useful. It's just a bit of playing with a statistics program.

You could (and I'm drawing heavily here on Trish's post in the thread that I've linked above) take any 3 conditions (let's say for example, multiple sclerosis, depression, and glandular fever), run a nice little factor analysis, and it'd probably show something. But it wouldn't MEAN anything.
 
They appear to be badly misusing statistics here.

Like the Chalder Fatigue scale, they seem to think that if you count how many symptoms from a list someone suffers from that gives a meaningful measure of how sick they are.

And I suspect their 'scale' equates, for example, my tinnitus, which I can live with without disabling me, and my PEM which completely floors me when it happens, as scoring equally. In fact because I have tinnitus all the time, and am able to pace carefully and don't have PEM often, the tinnitus would add more to my score than the PEM. Have I got that right?

I admit I've only skimmed the paper. Is there anything included in the score about how severe or disabling each symptom is for the individual?
 
So more than 600 CFS patients participated in this trial and they were recruited from self help groups online in the UK and Canada. Anyone remember their advertisement?

Would be weird if they managed to reach such a large group of online patients without us hearing about it...
 
The 65-item general symptom questionnaire (GSQ-65) is a valid generic symptom scale suitable for assessing the many different symptoms of people with IBS, FMS and CFS.
It's valid because they say it is. Hmmm. SCIENCE! Also: JAZZ HANDS!

I love how the main (legitimate) criticism of the nanoneedle is whether it differentiate other diseases. And then vague hand-wavy stuff like this is taken seriously.

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Um, don't most people suffer fatigue and pain after being active it goes beyond a certain level? We have had it used against us that the PEM we claim is just the normal effects of exercise if you are deconditioned.

There is a chance that people with IBS feel being active is different from people with FM or especially CFS who my feel they are being especially active if they walk to the garden.
 
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