Designing a questionnaire on ME/CFS onset

Should add “medication” or “iatrogenic” to the list e.g. cipro, etc.

 

Thank you for all the comments, hopefully I will be up to having a go at incorporating them all in a redraft over the next few days.

 

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.

 

Gastro-intestinal event does not appear either in trigger or pre-onset trigger that may be associated. Giardia could be one example, or travel-related sickness.

 

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?

 

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.

 

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".

 

It was prescribed to me by a virologist who did a small study on the medication for pwME.

 

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