Llama Zoo

Project Pure Hope fundraiser with University College London Hospitals Charity UK Help Omar Din raise money to support University College London Hospitals Charity UK

Set up by a friend of a friend to bring Palestinian children to London for treatment.
www.justgiving.com/page/project...

Highlights from Prof Chris Ponting’s presentation to the joint APPG on ME & Long Covid: He made clear that graded exercise is harmful, and warned that despite rising numbers, there’s still no research strategy, no effective treatments, and almost no funding. #MECFS #LongCovid

Journal of Neuroscience Research Executive Function Decline and Its Association With TNF-α in the Later Stages of Post-Acute Sequelae of COVID — Aditi Varenya et al. "EF decline in PASC also showed a significant, moderate, inverse relationship with serum TNF- α levels. No such correlations were observed in the HC group. Furthermore, serum TNF- α levels were significantly predictive of the variance in EF decline, after controlling for the impact of age and education" "Notably, serum TNF- α concentrations were significantly higher in females, relative to males, in the PASC group."

From India:

Executive Function Decline and Its Association With TNF-α in the Later Stages of Post-Acute Sequelae of COVID

onlinelibrary.wiley.com/doi/abs/10.1...

Image is from the latest Science for ME weekly update

#NeuroPASC #LongCovid #COVIDBrain #novid #PASC

We are involved in supporting the charity ‘LightAware’ with a lightbulb exemption campaign. The campaign is for light sensitive people with chronic conditions including MCS, M.E, long term skin conditions, neurological disorders, autism, and lupus.It aims to address the need to be able to access old fashioned non-LED lightbulbs, that have been banned in the UK. It is thought that around 60,000 people are effected and have severe and painful reactions to LED lights. Alongside Action for M.E and the National Migrane centre, we have supported a letter from LightAware to Ed Milliband (Secretary of State for Energy Security and Net Zero). We will update you further once we hear more.

(UK) “Light-sensitive people need safe non-LED lightbulbs, say health charities”

lightaware.org/lightaware-u...

Image is screenshot from the MCS-Aware June email bulletin

British people tell their MPs why they've joined the Global Match to Gaza As the Global March to Gaza begins, British people taking part have condemned their MPs and government inaction over Israel

British people tell their MPs why they've joined the Global Match to Gaza

As the Global March to Gaza begins, British people taking part have condemned their MPs and government inaction over Israel
www.thecanary.co/global/world...

Medscape Medical News > Features ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms Tara Haelle June 03, 2025

🧵
Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms
www.medscape.com/viewarticle/...
(may require free registration)

Thought this was good & interesting.

#lupus #chronicillness #MEcfs #IBS #POTS #FMS

1/

Earth is likely to cross a key climate threshold in two years A new World Meteorological Organization report spells the end of the world’s most famous climate goal.

Irreversible tipping points in the climate system — like the melting of Arctic ice sheets or the wide-scale collapse of coral reefs — are closer than scientists previously believed.

Abstract Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where symptoms worsen with cognitive or physical exertion. PEM often results in avoidance of physical activity, resulting in a lower aerobic fitness, which may contribute to skeletal muscle abnormalities. Here, we compared whole-body exercise responses and skeletal muscle adaptations after strict 60-day bed rest in healthy people with those in patients with long COVID and ME/CFS, and healthy age- and sex-matched controls. Bed rest altered the respiratory and cardiovascular responses to (sub)maximal exercise, while patients exhibited respiratory alterations only at submaximal exercise. Bed rest caused muscle atrophy, and the reduced oxidative phosphorylation related to reductions in maximal oxygen uptake. Patients with long COVID and ME/CFS did not have muscle atrophy, but had less capillaries and a more glycolytic fibers, none of which were associated with maximal oxygen uptake. While the whole-body aerobic capacity is similar following bed rest compared to patients, the skeletal muscle characteristics differed, suggesting that physical inactivity alone does not explain the lower exercise capacity in long COVID and ME/CFS

Important new research from the Netherlands:

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest

www.medrxiv.org/content/10.1...

#LongCovid #MEcfs

#MillionsMissing 2025: Sending Out An SOS For #MillionsMissing 2024, #MEAction is sending out an SOS.

Announcing #MillionsMissing 2025 on May 12th!

#MEAction is organizing a community-wide protest to send out an SOS to our elected officials: Save our Support Systems. Save our Science. Save Our Society. Learn more here: www.meaction.net/2025/04/02/m...

#pwME #MECFS #LongCovid #disability

Picture of young Rosemary with placard “Honk if you think Nixon should go to jail”. And picture of old Rosemary with same sign but for Trump.

Good old Rosemary! This one’s doing the rounds and (soz) I’ve lost whom to credit.

YouTube video by RHINO Buffalo Springfield - For What It's Worth (Official Audio)

Today's anthem:
youtu.be/80_39eAx3z8?...
#handsoff

La chat tra JD Vance e Pete Hegseth:

#Vance: "Odio dover aiutare l'Europa".

#Hegseth: "Condivido, è disgustoso".

Cosa dicono #Meloni, #Salvini, #Tajani che fanno a gara tra di loro per aggiudicarsi la leadership nei rapporti con la presidenza #Trump? Muti e a capo chino come sempre?

Millions of lives on hold around the world with this dreadful illness. Decades of neglect. The UK has the opportunity to be a leader.
Please #FundThePlan

Word of the day is ‘huff-snuff’ (16th century): a hectoring bully or braggart.

100%. We're looking down the barrel of the Fourth Reich.

Are you bored tonight? Send your five accomplishments, maybe your shopping list, or your five thoughts on Elon from the past week to OPM at HR@opm.gov.

🦠The full text of the #LongCovid roadmap:
'Targeting the SARS-CoV-2 reservoir in Long Covid' in The Lancet

Written by 36 global experts incl: Ely, Pretorius, Proal, Yonker, Griffin, Van Elzakker, Putrino, Iwsaki

A chart titled 'Replicated Findings in ME/CFS and Long Covid from the German Association for ME/CFS that lists studies that found: reduced cerebral blood flow, endothelial dysfunction, autoantibodies, regional hypometabolism in CNS, decreased systemic oxygen supply, lactate levels, arterial stiffness, platelets and blood clots, etc.

I finally found a chart I'd been looking for in prep for @johnvsjonvsme.bsky.social Scary Science!
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal

“Globally, accepted estimates have suggested between 65m & 200m people have #LongCovid… between 19.5m & 60m people face years of impairment”

Let’s compare with recent global figures from the WHO:

🟠 Dementia: 55m+
🟠 Rheumatoid arthritis: 18m
🟠 Parkinson’s disease: 8.5m+
🟠 MS: 1.8m+

#CureLongCovid

🥡Long Covid Takeaways
- Quality of life same as those with advanced cancers
-46% had mod severe or worse function at 6m
- cost 🇬🇧 £5.7 Billion 2022-23
-£931 lost through work

The cost is likely to be much higher & QoL lower as this was people who could get to clinic & were still able to work 😕

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.