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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Suggestions please. I am working on videos 6 and 7 on recovery and the PACE trial, and am looking for labels to put at the top and bottom of the fatigue and the sf-36 scales. Obviously, "Healthy" can be put at the top, but what could be clear and unambiguous for the bottom. I tried "Housebound" but it isn't right. An additional problem is that the fatigue level clumps at the bottom, in other words it doesn't register the true severity of a bad patch, whereas at the bottom of the sf-36 scale it does represent someone who has severe difficulties in washing and dressing.
Ah! Esther triggers a thought. If I label it "worst score" it won't convey how ill that is, but if I can label the entry level score (6 bimodal for fatigue and 65 for sf-36) then it will automatically convey that the bottom of the scale is much worse. I know (recent reminder from Bob) that 65 or less is "severely impaired physical function" and 70 is "substantial physical function", but is there a similar expression used officially for a bimodal fatigue score of 6 or more?