Author | Lightnews

Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 1d

#AwindowforME
#UnaVentanaParaME
#MyalgicEncephalomyelitis
#EncefalomielitisMiálgica

Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 1d

#AwindowforME
#UnaVentanaParaME
#MyalgicEncephalomyelitis
#EncefalomielitisMiálgica
Los gigantes, Mota del Cuervo, La Mancha.

Gracias a una amiga que me ha cedido la foto

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Reposted by Ona Albizu - PhD MSc BD

European ME Alliance @europeanmealliance.bsky.social · 4d

European ME Alliance statements at the 75th session of the World Health Organisation Committee for Europe in Copenhagen

www.europeanmealliance.org/emea-news-wh...
#rc75cph #mecfs #EuropeanMEalliance

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Reposted by Ona Albizu - PhD MSc BD

Eric Topol @erictopol.bsky.social · 3d

We've just launched the first large, site-less (home, direct to participant) randomized trial for treatment of #LongCovid, testing tirzepatide (a GLP-1 drug) vs placebo. Please help spread the word
www.scripps.edu/news-and-eve...

Scripps Research scientists launch new digital clinical trial to test repurposed drug for long COVID symptom relief

www.scripps.edu

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 2d

"ME is devastating. It affects people of all ages, including older adults, who face even greater vulnerability.
()Life is so limited that requests for euthanasia are far higher than the general population."
#EuropeanMEAlliance Ageing is living. WHO
#RC75CPH
www.europeanmealliance.org/emea-news-wh...

www.europeanmealliance.org

Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 2d

"The European ME Alliance will be pleased to work with WHO Europe Member States in establishing collaborative Centres of Excellence for ME throughout Europe."

EMEA #EuropeanMEAlliance at WHO #RC75CPH
#MyalgicEncephalomyelitis
www.europeanmealliance.org/emea-news-wh...

www.europeanmealliance.org

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 2d

"We call on WHO for investment in a coordinated, collaborative European strategy of biomedical research to produce an infrastructure with the capacity to understand the disease, support patients, and develop effective treatments."

EMEA #EuropeanMEAlliance at WHO #RC75CPH
#MyalgicEncephalomyelitis

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 2d

"We call on WHO and its Member States to ensure early recognition, home-based care, tailored education, family-centred support, and legal protection for children and adolescents with ME."
#EuropeanMEAlliance
#RC75CPH
#MyalgicEncephalomyelitis
www.europeanmealliance.org/emea-news-wh...

www.europeanmealliance.org

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 2d

Totalmente de acuerdo.
Hay enfermedades en las que es incluso peor porque es el propio médico el que ejerce la violencia -sicaria, epistémica, etc-

Suelen ser enfermedades graves poco o nada investigadas porque sale más barato culpar al paciente, y tienen tasas elevadas de suicidio y eutanasia.

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 5d

Tomorrow will be an important day for #MyalgicEncephalomyelitis at #WHOEUROPE #RC75CPH

#EuropeanMEAlliance will be there talking about ME at Ageing, Child and adolescents, and Innovation.

To follow on line
www.who.int/europe/about...

75th session of the WHO Regional Committee for Europe

28–30 October 2025, Copenhagen, Denmark

www.who.int

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Reposted by Ona Albizu - PhD MSc BD

Petra Hongell @petrajoel.bsky.social · 6d

We have kicked off #RC75CPH - the 75th session of the WHO Regional Committee for Europe - which will determine health priorities for the region for the next five years.

Tune in and follow the discussions live here 🎥 bit.ly/3J17zWV

@who.int

75th session of the WHO Regional Committee for Europe

28–30 October 2025, Copenhagen, Denmark

bit.ly

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 5d

Vamos!!!
#EncefalomielitisMiálgica tiene voz está semana en la OMS.
DIFUNDE!!

#MyalgicEncephalomyelitis is been heard at WHO EUROPE #RC75CPH by #EuropeanMEalliance

European ME Alliance @europeanmealliance.bsky.social · 6d

This week EMEA is participating in 𝟳𝟱𝘁𝗵 𝘀𝗲𝘀𝘀𝗶𝗼𝗻 𝗼𝗳 𝗪𝗛𝗢 𝗥𝗲𝗴𝗶𝗼𝗻𝗮𝗹 𝗖𝗼𝗺𝗺𝗶𝘁𝘁𝗲𝗲 𝗳𝗼𝗿 𝗘𝘂𝗿𝗼𝗽𝗲 in Copenhagen with ‘ official Non-State Actor accredited’ status
Last year EMEA met with Dr Hans Kluge WHO Regional Director for Europe, to discuss ME and EMEA's plans and strategy euro-me.org/emea-news-wh...
#mecfs

#mecfs | European ME Alliance

𝗧𝗵𝗶𝘀 𝘄𝗲𝗲𝗸 𝗘𝗠𝗘𝗔 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗽𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗶𝗻𝗴 𝗶𝗻 𝘁𝗵𝗲 𝟳𝟱𝘁𝗵 𝘀𝗲𝘀𝘀𝗶𝗼𝗻 𝗼𝗳 𝘁𝗵𝗲 𝗪𝗛𝗢 𝗥𝗲𝗴𝗶𝗼𝗻𝗮𝗹 𝗖𝗼𝗺𝗺𝗶𝘁𝘁𝗲𝗲 𝗳𝗼𝗿 𝗘𝘂𝗿𝗼𝗽𝗲 Organised for 28–30 October 2025 in Copenhagen, Denmark EMEA will be putting forward statements to th...

www.linkedin.com

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Reposted by Ona Albizu - PhD MSc BD

European ME Alliance @europeanmealliance.bsky.social · 6d

This week EMEA is participating in 𝟳𝟱𝘁𝗵 𝘀𝗲𝘀𝘀𝗶𝗼𝗻 𝗼𝗳 𝗪𝗛𝗢 𝗥𝗲𝗴𝗶𝗼𝗻𝗮𝗹 𝗖𝗼𝗺𝗺𝗶𝘁𝘁𝗲𝗲 𝗳𝗼𝗿 𝗘𝘂𝗿𝗼𝗽𝗲 in Copenhagen with ‘ official Non-State Actor accredited’ status
Last year EMEA met with Dr Hans Kluge WHO Regional Director for Europe, to discuss ME and EMEA's plans and strategy euro-me.org/emea-news-wh...
#mecfs

#mecfs | European ME Alliance

𝗧𝗵𝗶𝘀 𝘄𝗲𝗲𝗸 𝗘𝗠𝗘𝗔 𝘄𝗶𝗹𝗹 𝗯𝗲 𝗽𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗶𝗻𝗴 𝗶𝗻 𝘁𝗵𝗲 𝟳𝟱𝘁𝗵 𝘀𝗲𝘀𝘀𝗶𝗼𝗻 𝗼𝗳 𝘁𝗵𝗲 𝗪𝗛𝗢 𝗥𝗲𝗴𝗶𝗼𝗻𝗮𝗹 𝗖𝗼𝗺𝗺𝗶𝘁𝘁𝗲𝗲 𝗳𝗼𝗿 𝗘𝘂𝗿𝗼𝗽𝗲 Organised for 28–30 October 2025 in Copenhagen, Denmark EMEA will be putting forward statements to th...

www.linkedin.com

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 10d

It could be my case.
I improved first with adalimumab, and now with ixekizumab. (+LDN)

Sadly this is not over, but it's not a living hell anymore. At least not for a pwME. If a healthy person suddenly felt ill with our moderate version of the illness, they would panic.

Reposted by Ona Albizu - PhD MSc BD

valebodi.bsky.social @valebodi.bsky.social · 10d

Fresh of publication
Sex-related cardiometabolic differences in #ME/CFS patients

Francisco Westermeier et al.

Highlights

In ME/CFS patients, cardiovascular differences are more pronounced during standing in both sexes.

Male ME/CFS patients show higher levels of AOPP, a marker of oxidative

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating, and multisystem disease that affects more females than males. …

www.sciencedirect.com

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Reposted by Ona Albizu - PhD MSc BD

ME Foggy Dog @mefoggydog.bsky.social · 11d

SAVE THE DATE!

Mark your calendar! 29th October is BED for Severe M.E. Day. Let’s raise awareness, show solidarity, and support those who often live life from bed.

Campaign info - www.mefoggydog.org/bed-for-seve...

#BEDforSevereME #pwME

BED for Severe M.E. | ME Foggy Dog

8th August 2024 will mark the first annual BED for Severe M.E. Campaign! 25% of people living with Myalgic Encephalomyelitis are severely affected. Those living with Severe M.E are either bedbound…

www.mefoggydog.org

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Reposted by Ona Albizu - PhD MSc BD

Emerge Australia @emergeaustralia.bsky.social · 10d

Healthy volunteers signing up to the #AusMERegistry & donating blood to the #ausmebiobank give researchers the vital comparison data they need to uncover the biology behind #mecfs & #longcovid and discover effective treatments
👉 zurl.co/YEf22

A male in a navy t-shirt sitting in a chair with a woman in a pale t-shirt with her arms around him. The woman has a bandage on her arm showing how she just donated blood. Text "Join the AusME today: From one small act comes big hope." The AusME and Emerge Australia logos are on the tile.

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Reposted by Ona Albizu - PhD MSc BD

David García-Asenjo @dgllana.bsky.social · 10d

“Es evidente el paralelismo con la sanidad cuando los servicios saturados alientan a la ciudadanía a lograr el equivalente a ese «coche propio», es decir, el seguro privado, para sus problemas de salud cotidianos.”

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 10d

Los británicos afectados por Encefalomielitis miálgica estarán en shock 🫨

Esa mujer debería sentarse en el banquillo de los acusados por maltrato institucional, no en un palco de honor.

Mis condolencias a las pwME

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Reposted by Ona Albizu - PhD MSc BD

ME/CFS Science @mecfsskeptic.bsky.social · 17d

1) Remember the intramural NIH study about effort preference in ME/CFS?

Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 15d

It's got a get better Katha

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 15d

Marian Lozano hablará de (sobre)vivir con #EncefalomielitisMiálgica en Conil de la Frontera

@asociacionpem.bsky.social

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Reposted by Ona Albizu - PhD MSc BD

ME/CFS Science @mecfsskeptic.bsky.social · 17d

1) Not new, but only learned about it today:

The group of Prof. Simon Carding at the Quadram Institute is doing a small trial of Photobiomodulation (PBM) for ME/CFS, called 'LightMEup'.

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Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 17d

I bought the lights and use them since last April or so.
I think it's helping me with cognitive impairment.
A friend uses it, only a few secs per exposure, and says also to see improvement

Ona Albizu - PhD MSc BD @onaalbizu.bsky.social · 22d

I know and it's my plan.
I've gone through this before and the learned lesson was not to look back with anger or grief for the loss, but to look ahead with hope.
Still, it's hard.
Thanks Simon

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