Today, 8th August, is Severe M.E. Day. I have previously blogged on this date.
In 2022 about my social-care needs. Link.
In 2021 about my poëm “Missing” having been published. Link.
In 2018 I could not write much due to my condition, so posted a relaxing tune and accompanying video. Link.
In 2016 about Severe M.E. Day. Link.
In 2015 about why I could not post on actual date, but rather late. Link.
When I have not blogged it is due to being too ill to do so.
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In January this year I took the FUNCAP55 functionality-test. As I understand it is a project instigated by the Norwegian M.E. Association & Prof. K. Sommerfelt in 2022. He presented the details at the 15th Invest in M.E. Research [IIMER] International M.E. Conference 2023. This link takes one to YouTube to a twenty-two minute video.
A pre-print paper was published in September 2023. This link takes one to preprints.org.
In late 2023 or very early 2024, Raff Benato turned the questionnaire into an easy-to-use mobile app. This is the link for the app.
In June 2024 the paper was published in “Journal of Clinical Medicine”. This link takes one to the US National Library of Medicine, where one may read the full paper.
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The results of my first attempt can be seen in the image above. Over all, I came out as mostly “severe” with some “very severe” areas.
A few days ago I took the test a second time (image above), that is approximately six months after the first. I was not anticipating much change - how wrong could I have been! Remember, this is based on typical not best/worst days. I had not reälised I had deteriorated so much. The vast majority of my results now place me in the “very severe” category on the majority of my days. Heigh-ho! I suppose I ought to have expected same, as the past three months I have been almost totally bedridden and unable to do much more than eat, drink and use the w.c. Whilst most days I can spend some time on-line, I have to limit what I do to prevent migraines. Much of the time I lie abed, blind-folded (to avoid photophobia) and with noise-reducing headphones (to avoid hyperacusis). It is not much of a life, but there are people with M.E. (PwME) who are fed & watered intravenously, who cannot even use a urine-bottle without assistance.
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Severe M.E. is a hellish life……
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