Designing a questionnaire on ME/CFS onset

Kitty said:
If we're only looking back in time, we know whether or not the person who experienced a remission became ill again; and if they did, it suggests that they had ME throughout. I'm not sure the question of whether or not they qualified for a diagnosis during remissions is all that relevant.
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I'm inclined to agree with you on that.
My concern about the wisdom or otherwise of disregarding the diagnostic criteria requirement for "significant" reduction in function was more technical. It was about getting Peter's questionnaire taken seriously and actually used in research. Would the chances of that happening be lower if the questionnaire definitions contradicted diagnostic criteria? I suppose one could argue it's justifiable to apply a different standard to initial diagnosis and to remissions, just like you need to have skin manifestations of psoriasis to be diagnosed but can have periods with clear skin during remissions without being considered cured.
 
Mij said:
Yep.



My definition of a relapse is when you experience an 'event' and never go back to your baseline. You might develop new symptoms.

My 'event' was from taking immune modulators in 2001. At the time I was feeling 90% improvement and become very ill one month after taking the medication. My baseline dropped to 30%, and I developed orthostatic intolerance/impairment. I've recovered somewhat over the years, but the OI remains.
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Thank you for your definition. I'm sorry to hear about your relapse. May I ask if you were taking immune modulators for ME or another condition?
 
Kitty said:
It usually means getting worse again, after experiencing (whether due to treatment or the natural course of an illness) an improvement in symptoms. I think it's generally taken to mean deteriorating due to the same condition, though I suspect it's often quite hard to know for sure, specially as illnesses can trigger chains of events.

Recovery is usually considered to be permanent, at least in as far as that's possible when you're talking about health. Many people recover from bone fractures, but it doesn't mean they never suffer any further consequences. It's more that the fracture isn't expected to recur in the absence of trauma, the failure of materials used in a repair, or some disease process.

They're slippery terms, but it's probably impossible to come up with anything more concrete?
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Thank you. I considered "deterioration" and "exacerbation" but I'm not sure that they are appropriate either. The term "escalation" was used in relation to COVID-19 in an article I read recently. I think I might look into the terms used for other diseases.
 
Ravn said:
I can't make up my mind about the "total remission" versus "almost complete remission" question. I've had two of the latter when I functioned at around 90% but still experienced PEM.

On the one hand I could argue I've had ME non-stop since 1977, just to varying degrees. I always feel a bit of a fraud doing that but if PEM defines ME and since I never recovered 100% it's a valid position.

On the other hand I wouldn't have qualified for an ME diagnosis during my almost complete remissions because my function wasn't "significantly" reduced then. So based on current diagnostic criteria I'm now having my third - separate - attack of ME.
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In the absence of a biomarker, we can only define remission on the basis of symptoms, and since PEM is the hallmark symptom, a total remission would require the absence of PEM. May I suggest that on that basis, when you were 90% but still had PEM, you were in "partial remission", or not in remission, but certainly not in "total remission".
 
Sorry I have not yet pulled these comments together. Have been trying to do some gardening this week, as have had more help available, but as always pacing issues.

I am also trying to get my head around my cognitive limitations in relation to collating and integrating information; when I started this thread I had a spell where I was unusually for me able to hold the relevant information in mind and organise it, but since then I have reverted to my more normal being able respond to individual points but unable to collate ideas. Is this a specific deficit of being able to organise information or a reduced processing capacity? It has long puzzled me whether ME involves specific cognitive deficits or a generalised limit in band width or processing capacity.

In relation to this thread, I think I have the headings I need to respond to the comments and am writing it here to make sure I don’t forget, as I am hoping breaking things into small enough subsections will help me respond.

- defining onset options to include the observed variation and allow everyone to answer easily
- edit and refine list of possible triggers
- rewrite diagnosis question to allow for recording misdiagnoses, masking diagnoses and no diagnosis
- rewrite subsequent further onset question to allow those that perceive they have had multiple onsets to record this without getting drawn into detail of relapse/remission cycles most people experience as part of their ongoing condition
- consider question about factors triggering deterioration, in order to distinguish this from people who feel they have had more than one onset
 
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