Purple_Shaman @purple_shaman@qoto.org

#NewZealand (Aotearoa):

Post-Viral Research Aotearoa

Founded in 2022. Lead researcher immunologist @DrAnnaNZ

Crowd-Funded Research into #LongCovid, ME/#CFS & Other Post-Viral Illnesses

Hosted at Univ of Auckland

https://www.pvra.nz

Best of luck 👍
@mecfs @cfs @longcovid

Happy St Patrick's Day! 💚 ☘️

The Emerald Isle as seen from the International Space Station:

#StPatricksDay #Ireland #ISS

photo courtesy NASA

“Trial By Error: GET/CBT Ideologues Revive 1991 Oxford Criteria as Core Definition for #LongCovid Research” (12 March 2023) by Dr David Tuller

https://www.virology.ws/2023/03/12/

“When it comes to “post-infective fatigue syndrome,” the GET/CBT ideologues already had their big chance to prove their case. It was called the PACE trial, and it bombed. Enough already.”

@longcovid @mecfs @cfs #myalgicencephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwLC #PwME #CFSME

"All right, I've gotten off my bicycle. Now where's the old person I'm allowed to beat up?"

Why returning to work (or any activity) post Long Covid needs to be slow and careful. https://www.ft.com/content/fb77b3ef-0ad6-4bc6-a44b-fd6e0bdfe846?shareType=nongift

New from Moreau team in Canada:

"Circulating microRNA expression signatures accurately discriminate #myalgicencephalomyelitis from #fibromyalgia and comorbid conditions"

Free:
https://www.nature.com/articles/s41598-023-28955-9

"The results of this study demonstrate that ME/#CFS & #FM are two distinct illnesses"

#MEcfs #ChronicFatigueSyndrome #Fibro #FMS #PwME @mecfs

#Gratitude Day 22

#Today I’m grateful for resilience.

Resilience isn’t sexy. There are no great outcomes, and no prizes for resilience. Resilience doesn’t mean being okay all the time. I love that one definition of resilience is the ability of a substance or object to spring back into shape. Allowing yourself to fall apart and not cope is part of resilience too. Giving yourself that space and trusting that you will come out the other side. #mecfs

What are you grateful for today?

This from @SivaAnandaciva@twitter.com is worth repeating from this piece by @Ben_Spencer@twitter.com which looked in-depth at charging in Ireland and why it isn't the best of ideas: https://www.thetimes.co.uk/article/nhs-charge-fee-reform-patients-pay-gp-health-service-uk-zknv7l0ff

Sure, Twitter’s taken a 40-percent revenue hit — but it’s nothing that can’t be fixed with the sale of $8 blue checks to the Taliban, hm?

It was an absolute pleasure speaking with Prof Chris Ponting & Andy Devereux-Cooke about @DecodeMEstudy@twitter.com

Full episode wherever you get your podcasts, at http://www.LongCovidPodcast.com

or direct link: https://www.buzzsprout.com/1835170/11825155

#LongCovid #MECFS

Emeritus Professor Warren Talks gives a talk at the ANZMES 42nd Annual General Meeting on Saturday 19th November 2022 about his latest research into ME/CFS and #LongCovid

https://www.youtube.com/watch?v=weQ0kK0Fgrs

@longcovid @mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME

Hey everyone. Just wanted to eliminate the confusion and let you know that this is actually me. 😂 Hope you are having an awesome Thursday!

£3.7 billion - that was our estimate of the yearly cost of #LongCovid to the Exchequer in our submission to the Health & Social Care select committee
inquiry

This didn't include healthcare costs or loss of productivity

What IS the plan Rishi Sunak?

https://www.independent.co.uk/news/uk/politics/sunak-long-covid-benefits-work-b2251905.html

What will happen if we’ll RETHINK our street corners?

We'll realize that until now, we've made them too car-centric. Street corners are designed for fast driving, which means pedestrians have to risk their safety just to cross the street.

But if we’ll rethink our street corners we’ll get

■ More space for pedestrians
■ Shorter crossing distance and time
■ Greener spaces
■ Safer Streets
■ Beautiful street corners

A great example from PGAA Creative Design in Manila

I don't think this is getting the coverage it needs. Scottish government to require passivhaus standard for all new build homes. This is big. Really big. Growing out of lessons from the 70's oil crisis. Passivhaus buildings use very little energy to heat, or to cool. We've known how to do this for decades. It's gross negligence from all western governments that the same is not true of all new builds in the developed world.

https://www.thenational.scot/news/23197204.government-announces-passivhaus-standards-adopted-scotland/

this must be the first time I've seen the word #aptamer on the front page of the guardian website: 

https://www.theguardian.com/business/2022/dec/25/aptamer-york-biotech-cancer-treatments    

From ME Research UK:

Cort Johnson from the Health Rising blog looks at the potential links between long COVID and ME/CFS, and whether the massive surge of interest in the former will ultimately benefit people with ME/CFS. #LongCovid #MECFS

https://www.meresearch.org.uk/what-can-long-covid-research-tell-us-about-me-cfs/
@mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome

🚨The attached slide, presented at EU-US Conference, says NIH RECOVER initiative is planning on clinical trials for long Covid that focus on rehabilitation (code for graded exercise?) and CBT.

GET and CBT have been shown to be ineffective for patients with post exertional malaise - why repeat past mistakes?

➡️ Tell RECOVER to stop! Send email using this template:
https://docs.google.com/document/d/1OVj_2BBnQSY19VGEDAAleihdqlsT-Ax6-yIpoUvkLNE/edit

🔁 Please boost

#LongCovid #MEcfs #POTS #NEISvoid #ChronicIllness #Disability
#NIH #RECOVER #Research