Preprint Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported CFS in BC, Canada, and their health-related quality of life, 2024,Nacul

Also we do not want to be labelled as catastrophising . the patient blaming in that choice of wording should be shamed

 

The real question is, do people who say they got diagnosed with ME/cfs (could have been decades ago) still meet the 2003 case definition at the one timestamp when they filled out the questionnaires. That was the purpose of this study.

The thing is, considering we still don’t have biomarkers nor can quantify biologically how sick people are, and whether people who can get out of their house and able to do activities, on the cusp of meeting and not meeting the 2003 criteria are or aren’t sick with ME.

It reminds me of the POTS criteria, which is an increase of 30 beats per minutes upon standing. I know this because it happened to me in participating in a study. in one dr’s office, I met the POTS criteria, it was clear. I qualified for the POTS study. Then I had a tilt table test for the study, and didn’t meet the POTS criteria.

Same happens for ME. It is entirely possible in my opinion to no longer meet the 2003 criteria but still be sick, still have PEM if not careful with activities, etc, and down the road re-enter the 2003 criteria. Until we have biomarkers the water is still clear as mud. People are still sick, and whether you are housebound or able to do light duty work, the spectrum of what we call ME and CFs is still abnormal and QOL for those living with it is still poor to very poor.

I would hate to be told I don’t have ME- considering that I have lost the life as I knew it some 15 years ago and yet it may well have been how I have been categorized based on my questionnaire answers.

The BC Generation study was enrolling a while back, and parts of it was to answer a very general questionnaire including a question such as. ‘Have you been diagnosed by a medical doctor with a chronic disease, and then asked which one?’ . The BC Generation study is following registrants over the long term; people give consent to have their medical records checked. In general, it is for the purpose of understanding cancer and its risk factors but researchers of all kind can apply to access the database for their purpose and contact patients for a study.