Colin-Roy HunterIf you have any kind of #neurological condition (e.g. #pwME, #pwFM, #pwMS, etc.) or are a #carer for someone with such a condition, please consider completing the anonymous 2024/5 survey.
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First time since my bout of ‘flu back in mid-Sept. that I have been able to complete a hard #sudoku (achievement confirmed in image). As a #pwME & a #pwFM, I use these puzzles to judge how my mind is on any given day: if I cannæ solve a hard one, then I know I am brain-fogged and thus am aware not to do anything too taxing mentally or that requires physical co-ordination (the #dysautonomia is worse when suffering #BrainFog). Feeling chipper! Ha ha ha
Kirsty's Old Account#fibromyalgia #PWFM leads to higher infection and death rates, using newer diagnostic criteria.
https://www.bmj.com/company/newsroom/fibromyalgia-linked-to-heightened-risk-of-death/
Fibromyalgia linked to heightened risk of death | BMJ
…From accidents, infections, and especially suicide, pooled data analysis suggests Regular physical and mental health monitoring warranted to minimise these risks Fibromyalgia, a condition that causes persistent widespread pain and fatigue, may be linked to a heightened risk of death as a result of vulnerability to accidents, infections, and especially suicide, suggests a pooled data
@MarkMaguire @kevinteljeur @SarahDelahunty @lucyweirphd I am still on Twitter because more #pwME & #pwFM & #pwLC and #disabilities in general are over there. I have been connecting slowly with folk here, but, with one or two wonderful exceptions, there is almost no interaction here. I am #housebound & #bedridden: SM is my only social-life, or help-point. Unless matters deteriorate drastically it is unlikely that many #disabled groups will move elsewhere.
Perhaps I ought to have elucidated that this is not solely for #pwME, but also those with #Fibromyalgia #pwFM, #LongCovid #pwLC, #PostViralFatigueSyndrome #PVFS, etc. as well as healthy folk to act as #controls. Please consider signing up. There is no guarantee one will be selected, but the act of volunteering lends support to this much-needed effort. 🙏🏻🌈💕
I have signed up to #OpenMedicineFoundation‘s volunteer research-participant register, #StudyME , whereby scientists can locate potential contributors. The sign-up takes approximately five minutes.
I have #SevereME and the last page of text was the most difficult & time-consuming section for me to follow.
#InternationalMEAwarenessMonth #MEAwarenessMonth
#pwME #MyalgicEncephalomyelitis #MECFS
#pwFM #Fibromyalgia
#PVFS #PostViralFatigueSyndrome
“Welcome to the club! #Brainstem abnormalities now join the list of other issues ( #EBVReactivation, #CPET abnormalities, small fiber #neuropathy, #dysautonomia, low #cortisol, symptoms, etc.) that are linking #MECFS and #LongCovid together ever more tightly.”
#MyalgicEncephalomyelitis #pwME #Fibromyalgia #pwFM #
https://www.healthrising.org/blog/2023/04/20/chronic-fatigue-syndrome-long-covid-brainstem/
ME/CFS and Long COVID Meet Again - At the Brainstem - Health Rising
Lots of areas of the brain (prefrontal cortex, anterior cingulate cortex, insula, amygdala, motor cortex, and more) have been implicated in chronic fatigue syndrome (ME/CFS), but somehow it fits that the most difficult-to-reach and hard-to-study part of the brain – the brainstem – might just be the cat’s meow. As […]
Remembering twelve years ago today being able to read not one but two books in the same day! Now I am limited to reading webcomics and small snippets of text. As dancing was my favourite physical activity, reading was my fave cerebral pastime. This malfunctioning body has taken too much joy from my existence.
#MyalgicEncephalomyelitis #pwME
#Fibromyalgia #pwFM
#Osteoarthritis #pwOA
For the first time in a couple of weeks or so I managed to make myself a hot-drink via the Senseo in housemate’s room. It requires:
a return hobble of no more than 10 metres;
selecting drink;
selecting cup;
loading machine;
selecting programme;
instigating drink-making;
trying not to fall down whilst waiting;
switching off Senseo;
opening lid to air;
picking up cup;
then transferring back to my room without spilling.
Plus getting back into bed.