@criquaer@mstdn.social
@criquaer@mstdn.social avatar

criquaer

@criquaer@mstdn.social

Happy pantheistic #Quaker, despite being #disabled by & sufferer from #SevereME #MyalgicEncephalomyelitis. Always follow back #pwME. I sleep up to 22/24 & am brain-fogged for days/weeks. English, Scottish & Welsh per #genealogy. My surname is Scots & my forenames in Gælic mean young red wolf. Most of my life I have been #asexual. With #QueerTheory I started using the term #queer. Now I describe myself as queer #demisexual. #Demisexuality was coined in noughties. I am #political but non-partisan.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

criquaer, to Eurovision
@criquaer@mstdn.social avatar

1/2

You all know I love .

However their stance on is immoral, unethical & hypocritical. Russia was excluded for invading Ukraine. Not to expel Israel from the seems irrational - but then again the big powers in Europe are currently backing (tacitly or with arms or with other support) this uncivilised and failing state. NB without US funding Israel would have had to negotiate many years ago.

https://action.eko.org/a/suspend-israel-from-eurovision-now?akid=133190.698477.NBMRkh&rd=1&source=fwd&t=10

criquaer, to mecfs
@criquaer@mstdn.social avatar

with the ex-health-minister MP have, at very-short notice, arranged a UK parliamentary debate in on . It commences, I believe, at 16.30 BST. Hopefully the link to the UK’s follows:

https://www.parliamentlive.tv/Event/Index/0c36b6f9-7b6b-4607-8219-24b6db5bc132

criquaer, to Israel
@criquaer@mstdn.social avatar

Whilst the US is providing $Ms, will make no effort to behave like a civilised country. But the UK is just as shamed and inveigled by knowingly selling/providing arms to Israel. The governments of many Western powers are standing behind Israel. It is up to consumers/tourists to the country & its products.

Link to my blog on :

https://crippledqueeranglo-europeanranter.blogspot.com/2014/07/boycotting-israeli-products-moral.html

criquaer,
@criquaer@mstdn.social avatar

“The responsibility for this of children, women and noncombatant males lies squarely with Israel, which is obstructing food aid deliveries.”

https://www.juancole.com/2024/04/unavoidable-exponential-outpacing.html

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

WE&ME Foundation:

We are excited to show you the first video of our campaign. This video will air on Austrian television over the next few weeks.

Please help us raise awareness by sharing this tweet.
More info: https://weandmecfs.org/awareness

Donations help us liberate those affected. 🙏
💙

@mecfs

video/mp4

criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs is a small country with a small pop of cf. to UK or Germany, but their charities have stepped up to the plate. UK M.E. charities still drastically fail those of us with . They seem scared of appearing too radical to the Establishment. Too much done behind closed doors. Too little involvement with our ground-up causes, needs & wishes. Dare I say perhaps UK charities seem too complacent? I love this ad: herrlich!

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Extracts from Irish Daily Mail (and probably UK Daily Mail) April 23, 2024:

@mecfs

criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs The first book I purchased on moving into my own home was “Superwoman“ by Shirley. Great tips on how not to waste energy on unnecessary household chores.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

Full text published today:

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Free:
https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1369295/full

Funded by the Open Medicine Foundation

@mecfs

1/

criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs Looking at the severe categories I can do some activities in each and cannot do some in each. My condition is highly fluctuating. I can be totally bedbound, unable to sit up, unable to view tv or listen to radio/music nor cope with social interaction, struggling to speak or eat, … to occasionally able to leave the house. In 2022 I went outside six times; in 2023 nine times; so far in 2024 ten times - but currently just coming out of a crash period (the price to be paid).

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Does anyone have experience with Buprenorphine?

I’m told it’s a painkiller used to wean off opiates but not for longterm use because it’s addictive in itself & has side effects.
(Must stop fentanyl. Govt policy.)

Never tried it before hoping I could use it with low dose naltrexone if I wasn’t getting enough pain control. The pain specialist wasn’t sure.

is one of the few things I haven’t tried & works wonders for some people.

@chronicpain
@mecfs
@longcovid

criquaer,
@criquaer@mstdn.social avatar

@halcionandon @chronicpain @mecfs @longcovid I take this drug via transdermal patches. The pain-patches are for acute & chronic pain in my crumbling lower-spine. For that they do the job. Don’t help the -related pain though. I have been using for several years. Only issue is my skin-sensitivity to adhesives. Doc agreed a rolling 5-day rather than 7-day programme. Rarely get skin-burns now. If I forget to use, after 24-hrs I experience nasty withdrawal symptoms. Hope this helps.

criquaer,
@criquaer@mstdn.social avatar

@halcionandon @chronicpain @mecfs

Per website, “Transdermal patches are available in strengths of 5, 10, 15 and 20 micrograms/hour as 7-day formulations” ( https://bnf.nice.org.uk/drugs/buprenorphine/ )

I strongly recommend that as , one starts on the lowest dose and only increases if necessary, as we tend to be more med-sensitive than the gen pop.

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

PhD thesis (sociology)

Exploring the contested diagnosis of /

Free fulltext:
https://etheses.whiterose.ac.uk/30227/

@mecfs

criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs Not an especially empathetic nor aware sociologist if they do not even use the community’s current preferred terminology of rather than that of the disreputable psycho-cabal!

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

🧵
I think it's great that health and medical professionals are reading this patient perspective on / (ME/CFS).

Thanks to Wilhelmina D Jenkins
for telling her story so well. 👍

https://uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome

@mecfs

1/

criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs I am finding it increasingly difficult to want to stay. I know I donæ have , but for the past decade is draining my life-force… I am saving this as a boost to my psyche… 🙏🏻

Private
criquaer,
@criquaer@mstdn.social avatar

@tomkindlon @mecfs I know of four of us from my uni friendship circle who have confirmed diagnoses. Makes me wonder whether we all had the same viral infection whilst there (1990-93) and then all developed in late C20th/earlyC21st?

Private
criquaer,
@criquaer@mstdn.social avatar

@IrishMECFSAssociation @severeme @mecfs I so wish this with all my heart, soul & spirit! 🙏🏻💙🩵

bananabob, (edited ) to random
@bananabob@mastodon.nz avatar

Scientists discover brain signals for chronic pain | Health

https://www.theguardian.com/society/2023/may/22/scientists-discover-brain-signals-for-chronic-pain

Discovery of ‘objective biomarker’ raises hopes for new treatments for people living with intractable pain

Brain signals that reveal how much pain a person is in have been discovered by scientists who say the work is a step towards radical new treatments for people living with debilitating chronic pain.

criquaer,
@criquaer@mstdn.social avatar

@bananabob I should like to read the item, but the link is not functioning. If you can fix it, I should also like to retoot. Cheers!

criquaer, to random
@criquaer@mstdn.social avatar

Disappointed with the performance from 🇭🇷 in the semi-final, the official video is much better. It has nearly 2M views. Probably problematic video for those with visual/balance issues.

Link to YouTube:

https://youtu.be/AyKj8jA0Qoc

criquaer,
@criquaer@mstdn.social avatar

@podkaynelives Agreed! 🇪🇺🌈💕🇪🇺

Private
criquaer,
@criquaer@mstdn.social avatar

@ailbhe @GwenfarsGarden @mecfs I have had three showers so far in 2023, all this past month.

criquaer, to random
@criquaer@mstdn.social avatar

@kevinteljeur I should very much like to have followed your posts, but for some reason - hope I havenæ done something untoward - I am not permitted to do so. Nevertheless, I have read your witty long essay “On moving…” and have shared on my f/b, in the hopes of encouraging more of my chums to come on over. 🙏🏻🌈💕🤓

criquaer,
@criquaer@mstdn.social avatar

@kevinteljeur Cheers! Now I am advised I am following you! Oy veh! I am no techie… ha ha ha

lucyweirphd, to fediverse

I don't know how to use and I really want to move here instead of being on . The thing is, if I want to feel the pulse of reaction to something that's happened, I get zilch on here and lots over there. Any advice on how I can use this better?

criquaer,
@criquaer@mstdn.social avatar

@MarkMaguire @kevinteljeur @SarahDelahunty @lucyweirphd I am still on Twitter because more & & and 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 & : SM is my only social-life, or help-point. Unless matters deteriorate drastically it is unlikely that many groups will move elsewhere.

EwanCroft, to fediverse

looks like .lol is no more

criquaer,
@criquaer@mstdn.social avatar

@EwanCroft My first instance here. The lesson I learned: join an instance with multiple administrators - at some point someone will die, go on sick-leave, take maternity-leave, or (as in this instance!) simply give up.

criquaer, to random
@criquaer@mstdn.social avatar

Puts paid to the / crass thinking!

“No significant differences of clinical pattern were observed between primary infection and reinfection. No significant differences in the severity of infection were observed between primary infection and reinfection. … Reinfection with SARS-CoV-2 suggests that natural immunity is not long-lasting in COVID-19 patients.”

GwenfarsGarden, to chronicillness

I forgot it's . Too tired to write a new blog. Here's one from a couple of years ago, about Slow-onset ME https://www.gwenfarsgarden.info/2021/03/slow-onset-me.html. Because not everyone who gets ME, gets it from a virus.

@mecfs @chronicillness

criquaer, (edited )
@criquaer@mstdn.social avatar

@GwenfarsGarden @mecfs @chronicillness Reboosted and shared to Twitter & Facebook. 💙

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