Colin-Roy Hunter · @criquaer
381 followers · 2179 posts · Server mstdn.socialPerhaps 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. 🙏🏻🌈💕
#controls #pvfs #postviralfatiguesyndrome #pwLC #LongCovid #pwfm #fibromyalgia #pwme
Colin-Roy Hunter · @criquaer
380 followers · 2153 posts · Server mstdn.social
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
#postviralfatiguesyndrome #pvfs #fibromyalgia #pwfm #mecfs #myalgicencephalomyelitis #pwme #MEAwarenessMonth #internationalmeawarenessmonth #SevereME #studyme #openmedicinefoundation
Colin-Roy Hunter · @criquaer
380 followers · 2153 posts · Server mstdn.social
“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/
#pwfm #fibromyalgia #pwme #myalgicencephalomyelitis #LongCovid #mecfs #cortisol #Dysautonomia #Neuropathy #cpet #ebvreactivation #brainstem
Colin-Roy Hunter · @criquaer
361 followers · 1613 posts · Server mstdn.socialRemembering 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
#pwoa #osteoarthritis #pwfm #fibromyalgia #pwme #myalgicencephalomyelitis
Colin-Roy Hunter · @criquaer
361 followers · 1613 posts · Server mstdn.social
Colin-Roy Hunter · @criquaer
361 followers · 1613 posts · Server mstdn.socialFor 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.
Colin-Roy Hunter · @criquaer
357 followers · 1438 posts · Server mstdn.social
If one has #MyalgicEncephalomyelitis #pwME &/or #Fibromyalgia #pwFM, then you may wish to read #CortJohnson ’s latest article on #HealthRising for some positive news…
#healthrising #cortjohnson #pwfm #fibromyalgia #pwme #myalgicencephalomyelitis
Colin-Roy Hunter · @criquaer
351 followers · 1153 posts · Server mstdn.social@Splodgenoodles I also am officially diagnosed as a #pwME, a #pwFM & a #pwOA inter alia other maladies. I both hear & feel you. {{{gentle}}}
Colin-Roy Hunter · @criquaer
336 followers · 468 posts · Server mstdn.social
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:
Colin-Roy Hunter · @criquaer
320 followers · 289 posts · Server mstdn.social@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. 🙏🏻🌈💕🤓💙
Colin-Roy Hunter · @criquaer
264 followers · 2691 posts · Server mastodon.lol
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.”
#MyalgicEncephalomyelitis #pwme #fibromyalgia #pwfm #Mirna #mecfs
Colin-Roy Hunter · @criquaer
264 followers · 2688 posts · Server mastodon.lol@tacosubpizza I have never seen the perm previously, but have every intention of using it in the future - #painsomnia ! Brilliant!
#painsomnia #pwme #pwfm #pwoa #chronicillness #chronicpain
Colin-Roy Hunter · @criquaer
255 followers · 2477 posts · Server mastodon.lol
Colin-Roy Hunter · @criquaer
247 followers · 2366 posts · Server mastodon.lolSince #carers stopped coming in early Dec., I leave my bed even more rarely as donæ feel safe if no-one around or due to be. Had my first #fall of 2023 en route to wc. No damage done. Just a tad shaken. 🙏🏻
#pwME #pwFM #pwOA
#MyalgicEncephalomyelitis #SevereME
#Fibromyalgia
#OsteoArthritis
#carers #fall #pwme #pwfm #pwoa #MyalgicEncephalomyelitis #SevereME #fibromyalgia #osteoarthritis #socialcare #socialcarecrisis
Colin-Roy Hunter · @criquaer
242 followers · 2191 posts · Server mastodon.lolSee my previous post for the context for posting this piece of #poetry. My second #dance #poem is entitled “Bruised Reed”:
https://crippledqueeranglo-europeanranter.blogspot.com/2012/08/bruised-reed.html
#poetry #dance #poem #chronicillness #disability #pwme #pwfm #pwoa
Colin-Roy Hunter · @criquaer
242 followers · 2191 posts · Server mastodon.lol
I have not long since finished viewing a film (see previous post) which included #dance as a driving-force. It reminded me of how much I adored #dancing, of moving rhythmically, of meeting, discovering & partnering space. I remembered that I had written a couple of #poems about what dance meant to me & my life. Herewith “All Back”:
https://crippledqueeranglo-europeanranter.blogspot.com/2013/05/all-back.html
#dance #dancing #poems #chronicillness #disability #pwme #pwfm #pwoa
Colin-Roy Hunter · @criquaer
240 followers · 2160 posts · Server mastodon.lolA question for #pwME &/or #pwFM : do you suffer from ultra cold, icy eye-balls or is it just me? Couldnæ find anything on an internet-search, so if anyone with #MyalgicEncephalomyelitis &/or #Fibromyalgia knows of any research, I’d love you to share a link. Thx 🙏🏻🌈💕🤓💙
#pwme #pwfm #MyalgicEncephalomyelitis #fibromyalgia
Colin-Roy Hunter · @criquaer
47 followers · 314 posts · Server mastodon.lol@TheBalance Thx for following. I have gladly reciprocated. I am one of the majority of #pwME who is also a #pwFM, so we do have things in common. 🙏🏻
Colin-Roy Hunter · @criquaer
24 followers · 140 posts · Server mastodon.lol
#Pain #ChronicPain #ChronicIllness
#pwME #MyalgicEncephalomyelitis #SevereME
#pwFM #Fibromyalgia
#pwOA #OsteoArthritis #Arthritis
[Sorry due to #Disabilities, incl. above, I cannæ type text from meme.]
#pain #chronicpain #chronicillness #pwme #MyalgicEncephalomyelitis #SevereME #pwfm #fibromyalgia #pwoa #osteoarthritis #Arthritis #disabilities
Colin-Roy Hunter · @criquaer
24 followers · 141 posts · Server mastodon.lol
Before becoming so badly #bedridden, I used to regularly sort and tidy my cupboards & drawers. This drawer had not been done for several years. A good friend sat next to me and helped me with the task. I had to throw away a green-refuse bag full of decaying comestibles! But look at it now - the order, the beauty….!!! #pwME #pwFM #pwOA