If 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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#pwFM
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
#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/
@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/
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.
If one has #MyalgicEncephalomyelitis #pwME &/or #Fibromyalgia #pwFM, then you may wish to read #CortJohnson ’s latest article on #HealthRising for some positive news…
Lack of services provided by #NHS for #pwFM i.e. #Fibromyalgia (another of my conditions). I can honestly say that other than an ill-fitting (thus useless and so did not help!) neck-brace, I have received no specific treatment or medication for my illness from primary- or secondary-care.
Link to UK’s #NHE website:
@jlthoughts I am inter alia a #pwME #SevereME & #pwFM and I have a blog. I try to publish several blog-posts each year as energy & cognition permit. Please share the link to your blog - once published - as I am happy to share. 🙏🏻🌈💕🤓💙
Obviously, my #disabilities as inter alia a #pwME, #pwFM & #pwOA mean it may take me some time to transfer lists of followers, etc. In the meantime, feel free to follow me at @criquaer@mstdn.social For the time being, I shall cross-post toots until I have fully moved over to my new instance. Hopefully I shall not break the rules too often - it won’t be deliberate if I do! 🙏🏻🌈💕🤓💙
As inter alia a #pwME, #pwFM & #pwOA apart from physical issues my cognitive abilities are severely impaired. #Dyscognition aka #BrainFog or #FibroFog means I cannot consistently act as might be expected. It transpires I am too #disabled for disabled.social, as their list of rules & regs is rather large, and I have no hope of fulfilling their requirements on a regular basis. I have opted for mstdn.social which has a much shorter list of required behaviours. Now @criquaer@mstdn.social
Over several weeks I composed a letter to the social-worker who has taken over my case, as they wanted to know about my abilities to communicate. I have now published the (redacted) letter on my blog, entitled “Communications Difficulties with Severe #MyalgicEncephalomyelitis” as it may be useful to other #pwME / #pwFM. #SevereME
Link to my blog on #Blogger :
This item will be of interest to those suffering from #MyalgicEncephalomyelitis ( #pwME ), #Fibromyalgia ( #pwFM ) or both, as in my case.
“In this study, the discovery of differential circulating #miRNA expression signatures associated with #MECFS, FM and ME/CFS + FM groups further supports that ME/CFS and FM are two distinct related illnesses.”
@tacosubpizza I have never seen the perm previously, but have every intention of using it in the future - #painsomnia ! Brilliant!
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