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

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

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.

 

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.

 

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.

 

I wonder whether by 'stomach pain' they meant 'gut pain'? The stomach is above the waist, whereas the part of the gut which is mostly affected in IBS in me is mostly below.

 

They're from Plymouth... So relatively close to other homes of junk science.

 

I think this thread is rather relevant here. https://s4me.info/threads/a-thought-experiment-how-to-create-a-syndrome.10594/

 

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.

 

That's a ludicrously poor measure.
I'd imagine that waking still tired at least once weekly would be reported by the majority of teenagers, university students, and people working long hours.

 

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.

 

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...

 

Oh, you're just trying to make them look bad by being accurate.

 

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.

 

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.

 

The lead author's work (Hyland) has been discussed on this thread:

https://www.s4me.info/threads/body-...very-using-the-hyland-model.8037/#post-142011