Author | Lightnews

Lydia, 33 @lydiafd.bsky.social · 16d

@longcovidadvoc.com @remissionbiome.bsky.social @meassociation.org.uk @longcovidkids.bsky.social @longcovidfam.bsky.social @longcovidjustice.org @meactionuk.bsky.social @meactionscotland.bsky.social @berlin-buyers-club.bsky.social

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Lydia, 33 @lydiafd.bsky.social · 16d

Poor research article based on self-reported phone interviews and discussing the pandemic in the past tense. Do these types of articles do more harm or add to the understanding of the ongoing COVID-19 pandemic? @frontiersin.bsky.social

@meactnet.bsky.social @longcovidsos.bsky.social

Frontiers | Prevalence of post COVID-19 condition and associations with risk factors among U.S. adults: 2023 Behavioral Risk Factor Surveillance System

IntroductionDuring the COVID-19 pandemic, between 12 and 20% of US adults were identified as having post-COVID-19 condition, commonly referred to as ‘Long CO...

www.frontiersin.org

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Lydia, 33 @lydiafd.bsky.social · Sep 8

Nevras gofundme attached for ease of access - please consider donating any pennies you might have! 🙏

Liz Nevra A. @nlizaki.bsky.social · Aug 28

The same post exists on FB, Twitter, Instagram, B$ky, and TikTok, so please consider boosting there so we can get out of the echo chamber! All hands on deck! #pwME
www.gofundme.com/f/save-nevra

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Lydia, 33 @lydiafd.bsky.social · Sep 8

As support for Severe ME continues to be dire globally, please consider donating to Nevra's support fund.

Nevra is a polyglot, inquisitive, and creative young woman.

Due to DV risks at home and lack of state support in Pakistan, she needs our support to keep her safe whilst living with Severe ME ❤️

Liz Nevra A. @nlizaki.bsky.social · Aug 30

gofundme.com/f/save-nevra

The same post exists on FB, Twitter, Instagram, B$ky, and TikTok, so please consider boosting there so we can get out of the echo chamber! All hands on deck! #pwME #MutualAid #DisabilityJustice
#SevereME #VerySevereME #DomesticViolence

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Lydia, 33 @lydiafd.bsky.social · Aug 2

I am a living example of this!

Completely fine with my first infection, recovered and back to normal.

Second infection led to long term illness and disability.

The literature repeatedly backs this trend up: reinfections are a detriment to our health!

NSJosi @nsjosi.bsky.social · Jul 14

“Although your immune system can take on [a COVID] infection, you want to avoid testing it as much as possible because your body is sustaining damage with each infection that it survives.”

The Biggest Mood (KC Simpkins) @kelcsimpkins.bsky.social · Jul 14

This is one of the BEST short, sweet, and straightforward interviews I have ever heard about the consequences of covid infections and long covid.

Featuring @putrinolab.bsky.social obviously!!

If you need one radio interview to share with friends, family, etc. this is 💯

www.cbc.ca/radio/quirks...

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Lydia, 33 @lydiafd.bsky.social · Jul 22

It's alright Mairead but thank you! It's me and millions of others!

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Lydia, 33 @lydiafd.bsky.social · Jul 21

And I am one of them!

2019 fully healthy and working.

2025 chronically ill, disabled and not able to work.

My last healthy year I was 29 years old. A second covid infection got me.

The question is, how many more will continue to fall ill?

Mairéad @drmaireaddb.bsky.social · Jul 20

Just look at how our health has changed in Ireland since COVID began to infect us.
The highlighted data is particularly alarming.

www.cso.ie/en/releasesa...

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Lydia, 33 @lydiafd.bsky.social · Jun 29

Interesting research outcomes - I wonder how this will impact treatment development?

Jack - amatica health @jackamatica.bsky.social · Jun 24

3 Biological Neuroimmune Subtypes in Post-COVID & ME/CFS 🔬❕

We mapped our @amaticahealth post-COVID + ME patients into three distinct biological clusters using Neuroimmune markers

Cluster 1; mitochondrial stress
Cluster 2; Non inflammatory
Cluster 3; Neuro inflammatory

🧵 👇🏻

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Lydia, 33 @lydiafd.bsky.social · Jun 21

Yes, it's very frustrating, I wish we would move away from a predominantly psychological model to a biomedical one!

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Lydia, 33 @lydiafd.bsky.social · Jun 14

Honestly the ME/CFS community has been so kind to me and guided me so well. I'm sorry you've had to fight so long and so hard! I have joined the fight too and I just hope some day future ME/CFSers will be treated better - because your actions have paved the path for better treatment for me! Thank u

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Lydia, 33 @lydiafd.bsky.social · Jun 14

Wilhelmina, I hope it's OK to say, but I checked your page and want to thank you for your ongoing advocacy. Falling ill with ME myself in 2022, I was shocked by the history of the condition and am so thankful to my ME/CFS elders who have campaigned endlessly. Thank you!

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Lydia, 33 @lydiafd.bsky.social · Jun 12

Very frustrating and completely unhelpful. All this effort should be put into biomedical research, not psychosocial pontification!

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Lydia, 33 @lydiafd.bsky.social · Jun 12

Pop science articles like this do little to further the understanding of ME/CFS. The old adage that correlation is does not mean causation comes to mind.

#me/cfs #longcovid #biopsychosocial #postviralfatigue

ME/CFS, Long Covid, and Disconnection From the Self

Clinicians and researchers have observed certain personality traits in many people living with ME/CFS and long Covid. Could they help some people to unravel their illness?

www.psychologytoday.com

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Lydia, 33 @lydiafd.bsky.social · Jun 4

Great article in the @irishtimes.com about upcoming drug Mitodicure for ME/CFS, which aims to stop PEM! Investors needed!

@meactnet.bsky.social @meassociation.bsky.social @longcovidadvoc.com @remissionbiome.bsky.social @openmedf.bsky.social @longcovidkids.bsky.social @longcovidjustice.org

Image of newspaper article/interview including description of Mitodicure and picture of patient advocate Patrick Ussher.

Lydia, 33 @lydiafd.bsky.social · Jun 4

It's factors like this that need indepth analysis - and when unclean air has been proven to lead to the spread of pathogens, why do we expose our schools to that?
@intonews.bsky.social @earlychildhoodireland.ie @childreninhospital.bsky.social @thejournal.ie @irishexaminer.bsky.social

Clean Air Advocacy Ireland @cleanairie.bsky.social · Jun 4

Two weeks ago, when reacting to the 2022/23 school attendance report, the Minister for Education was dismissive of illness as being a factor.

Today, a separate report shows that child admissions to adult ICU *more than doubled* in 2023.

Links in next post.

Headline from the Irish Independent reads, "Hugely alarming levels of school absences prompts Minister Helen McEntee to announce measures to tackle problem."

Headline from the Journal newspaper: " Admissions of children to adult intensive care units in ireland more than doubled in a year [2023]."

Lydia, 33 @lydiafd.bsky.social · Jun 3

Clean Air protects both employees and their organisations! @hselive.bsky.social @intonews.bsky.social @roinnslainte.bsky.social @oireachtasnews.bsky.social @cleanairie.bsky.social @independent.ie @newstalkfm.bsky.social @rte.ie @thejournal.ie

Smart Air UK @smartairuk.bsky.social · Jun 3

Is your employer addressing clean air in the workspace?

If not, we are capturing details for air quality audits in the UK:

docs.google.com/forms/d/e/1F...

Image shows the Blast Air Purifier from Smart Air in a workspace, posted by Snap Air NZ on Instagram

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Lydia, 33 @lydiafd.bsky.social · Jun 2

Wow this is shocking

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Lydia, 33 @lydiafd.bsky.social · Jun 1

Good advice on how to avoid covid during the upcoming surge - predicted to peak the end of June! @cleanairie.bsky.social @hselive.bsky.social @oireachtasnews.bsky.social @irishexaminer.bsky.social @irishtimes.com @intonews.bsky.social @lcaireland.bsky.social @meactnet.bsky.social

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Lydia, 33 @lydiafd.bsky.social · May 28

Should I directly get in contact with the NIAC to flag the issues with their criteria? Not including Long Covid patients seems illogical as they are at increased risk already. It does not make sense to exclude this population?

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Lydia, 33 @lydiafd.bsky.social · May 28

Why does the criteria for the covid booster change so arbitrarily @hselive.bsky.social ? I have Long Covid and am being denied everywhere because I am under 80. My neighbour who is 79 was denied. There is a big covid wave coming this summer with children already in hospital with it. Logic?

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Lydia, 33 @lydiafd.bsky.social · May 25

Excellent interview on the dire need for #cleanairstrategies at schools by @cleanairie.bsky.social - and how this can reduce absences!

@hselive.bsky.social @childreninhospital.bsky.social @intonews.bsky.social @astiunion.bsky.social @roinnslainte.bsky.social @irishexaminer.bsky.social

Clean Air Advocacy Ireland on Highland Radio, May 21st 2025

YouTube video by Clean Air Advocacy Ireland

www.youtube.com

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Lydia, 33 @lydiafd.bsky.social · May 20

Thank you @putrinolab.bsky.social for your work and continued advocacy 👏

Boo-trino Lab @putrinolab.bsky.social · May 15

Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has

www.bmj.com/content/389/...

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Patients with severe ME/CFS need hope and expert multidisciplinary care

Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen Myalgic...

www.bmj.com

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Lydia, 33 @lydiafd.bsky.social · May 19

Thank you to everyone at @bihatcharite.bsky.social who campaign for us, believe us and are researching to help us!

@paulgarnerwoof.bsky.social and the recent opinion piece publication by @bmj.com would benefit from taking a few lessons from contemporary pioneers in the ME/CFS field.

Bettina Grande @bettinagrande.bsky.social · May 9

Wir sehen Euch.
Wir hören Euch.
Wir kämpfen mit Euch.
Wir kämpfen für Euch!

#MECFS #MillionsMissing #MEAwarenessMonth
#MEAwareness
#PEM #PACING
#NoGET
#PEMistnichtverhandelbar
#LiegendDemo #MEAwareness
#Stigmatisierung
#AufklärungJetzt #ForschungJetzt #VersorgungJetzt

Zwei Frauen (Bettina Grande und Carmen Scheibenbogen) bei der #LiegendDemo 2024 stehen zwischen Plakaten, die auf das schwere Schicksal von ME/CFS-Erkrankten aufmerksam machen. Sie blicken ernst, die Plakate fordern Aufklärung, Forschung und Versorgung. Das Bild ist in Schwarz-Weiß gehalten.

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