Pinned
Joneki
@joneki.bsky.social
· Jan 27
Posters y dípticos recibidos de la @AsociacionPEM,
𝐀𝐬𝐨𝐜𝐢𝐚𝐜𝐢𝐨́𝐧 𝐝𝐞 𝐄𝐧𝐟𝐞𝐫𝐦𝐨𝐬 𝐝𝐞 𝐄𝐧𝐜𝐞𝐟𝐚𝐥𝐨𝐦𝐢𝐞𝐥𝐢𝐭𝐢𝐬 𝐌𝐢𝐚́𝐥𝐠𝐢𝐜𝐚
Gracias
𝐀𝐬𝐨𝐜𝐢𝐚𝐜𝐢𝐨́𝐧 𝐝𝐞 𝐄𝐧𝐟𝐞𝐫𝐦𝐨𝐬 𝐝𝐞 𝐄𝐧𝐜𝐞𝐟𝐚𝐥𝐨𝐦𝐢𝐞𝐥𝐢𝐭𝐢𝐬 𝐌𝐢𝐚́𝐥𝐠𝐢𝐜𝐚
Gracias
Reposted by Joneki
Dice: "mejorar la calidad d vida d las personas con fibromialgia, SFC/EM y SQM mediante 1 programa estructurado de ejercicio terapéutico"
@Afibro.bsky.social y @COCEMFEnacional.bsky.social deberían saber q el ejercicio está contraindicado para #EncefalomielitisMiálgica
Estas acciones son negligentes
@Afibro.bsky.social y @COCEMFEnacional.bsky.social deberían saber q el ejercicio está contraindicado para #EncefalomielitisMiálgica
Estas acciones son negligentes
December 14, 2025 at 2:42 PM
Dice: "mejorar la calidad d vida d las personas con fibromialgia, SFC/EM y SQM mediante 1 programa estructurado de ejercicio terapéutico"
@Afibro.bsky.social y @COCEMFEnacional.bsky.social deberían saber q el ejercicio está contraindicado para #EncefalomielitisMiálgica
Estas acciones son negligentes
@Afibro.bsky.social y @COCEMFEnacional.bsky.social deberían saber q el ejercicio está contraindicado para #EncefalomielitisMiálgica
Estas acciones son negligentes
Reposted by Joneki
50.000 manifestantes hoy en Iruña en solidaridad con el pueblo de Palestina. Grandes.
October 4, 2025 at 12:51 PM
50.000 manifestantes hoy en Iruña en solidaridad con el pueblo de Palestina. Grandes.
Reposted by Joneki
Athletic Club Bilbao hosted Palestinian refugees at San Mames Stadium in a moving tribute followed by a standing ovation.
October 4, 2025 at 5:49 PM
Athletic Club Bilbao hosted Palestinian refugees at San Mames Stadium in a moving tribute followed by a standing ovation.
Reposted by Joneki
Reposted by Joneki
It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS.
There have never been so many advocacy orgs and quality resources available to inform on MECFS.
And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect.
#pwME
There have never been so many advocacy orgs and quality resources available to inform on MECFS.
And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect.
#pwME
September 29, 2025 at 9:12 AM
Reposted by Joneki
Lately it feels like media went straight from "ME doesn't exist" to "ME is a poor umbrella term".
A bit like the move from "this is not ME, is LC" in 2022 to "not all LC is ME" in 2025.
The mind and language gymnastics society is coming up just to keep minimising this illness is astonishing.
A bit like the move from "this is not ME, is LC" in 2022 to "not all LC is ME" in 2025.
The mind and language gymnastics society is coming up just to keep minimising this illness is astonishing.
Whether it's using the term "Chronic Fatigue Syndrome", describing the illness as due to fatigue or tiredness, propagating wellness cures, or making passive aggressive swipes at the patient community - it is extremely rare to come across a mainstream media piece that gets it right.
September 29, 2025 at 7:27 AM
Lately it feels like media went straight from "ME doesn't exist" to "ME is a poor umbrella term".
A bit like the move from "this is not ME, is LC" in 2022 to "not all LC is ME" in 2025.
The mind and language gymnastics society is coming up just to keep minimising this illness is astonishing.
A bit like the move from "this is not ME, is LC" in 2022 to "not all LC is ME" in 2025.
The mind and language gymnastics society is coming up just to keep minimising this illness is astonishing.
Reposted by Joneki
El Athletic de Bilbao se ha convertido en el primer equipo de la Liga en denunciar expresamente el genocidio perpetrado por Israel. Hoy se ha solidarizado con el pueblo de Palestina en San Mamés. El pueblo vasco es extraordinario. Enormes.
October 4, 2025 at 10:23 PM
El Athletic de Bilbao se ha convertido en el primer equipo de la Liga en denunciar expresamente el genocidio perpetrado por Israel. Hoy se ha solidarizado con el pueblo de Palestina en San Mamés. El pueblo vasco es extraordinario. Enormes.
Reposted by Joneki
Esta imagen ha sido censurada por la Liga del ultraderechista Javier Tebas, que no ha emitido ninguna del apoyo y la solidaridad del Athletic de Bilbao con el pueblo de Palestina. El futbolista vasco y antifascista Iñaki Williams choca la mano a un niño refugiado palestino en San Mamés. Grande.
October 4, 2025 at 11:56 PM
Esta imagen ha sido censurada por la Liga del ultraderechista Javier Tebas, que no ha emitido ninguna del apoyo y la solidaridad del Athletic de Bilbao con el pueblo de Palestina. El futbolista vasco y antifascista Iñaki Williams choca la mano a un niño refugiado palestino en San Mamés. Grande.
Reposted by Joneki
El presupuesto para bomberos forestales de las Comunidades Autónomas del PP yendo a apagar incendios.
August 18, 2025 at 10:48 PM
El presupuesto para bomberos forestales de las Comunidades Autónomas del PP yendo a apagar incendios.
Reposted by Joneki
El incendio de Aliseda (Cáceres) ha sido provocado por cazadores, pero en España son intocables y tienen barra libre. Han arrasado 4.000 hectáreas para ahuyentar fauna y sacar beneficios económicos. Aquí podemos ver a un cervatillo huyendo para que entre en los cotos de caza. Miserables.
August 19, 2025 at 8:32 AM
El incendio de Aliseda (Cáceres) ha sido provocado por cazadores, pero en España son intocables y tienen barra libre. Han arrasado 4.000 hectáreas para ahuyentar fauna y sacar beneficios económicos. Aquí podemos ver a un cervatillo huyendo para que entre en los cotos de caza. Miserables.
Reposted by Joneki
Full Article - The Times
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
August 10, 2025 at 7:10 AM
Full Article - The Times
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
As my daughter died of ME, the state met in secret to blame me
Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27
archive.ph/2025.08.09-2...
Reposted by Joneki
A nurse who worked with #MECFS patients commented on my Facebook post calling it a mental health issue. She dismissed the CDC, NICE & the IOM report because it didn’t match her and her colleagues’ views.
Outdated beliefs override evidence.
Outdated beliefs override evidence.
August 18, 2025 at 6:33 PM
A nurse who worked with #MECFS patients commented on my Facebook post calling it a mental health issue. She dismissed the CDC, NICE & the IOM report because it didn’t match her and her colleagues’ views.
Outdated beliefs override evidence.
Outdated beliefs override evidence.
Reposted by Joneki
Situaciones terribles y abandono incomprensible 📣
#SevereMe
#EncefalomielitisMiálgica
#MEcfs
#pwME
youtu.be/qVDwvthD3F0?...
#SevereMe
#EncefalomielitisMiálgica
#MEcfs
#pwME
youtu.be/qVDwvthD3F0?...
Health(s)care *** Severe ME Day 2025
YouTube video by Anil about ME
youtu.be
August 8, 2025 at 8:30 AM
Situaciones terribles y abandono incomprensible 📣
#SevereMe
#EncefalomielitisMiálgica
#MEcfs
#pwME
youtu.be/qVDwvthD3F0?...
#SevereMe
#EncefalomielitisMiálgica
#MEcfs
#pwME
youtu.be/qVDwvthD3F0?...
Reposted by Joneki
„Hab mir versprochen, bis zum Schluss aufzuklären, zumindest aufmerksam zu machen.“ - Sarah Buckel (31)
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es …
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es …
May 25, 2025 at 12:26 PM
„Hab mir versprochen, bis zum Schluss aufzuklären, zumindest aufmerksam zu machen.“ - Sarah Buckel (31)
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es …
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es …
Reposted by Joneki
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es wird immer noch so vieles psychologisiert. Die ganzen Symptome und wie man qualvoll dahin stirbt, das will keiner
July 5, 2025 at 1:01 PM
„Ich möchte, dass die Gesellschaft versteht, dass schwere ME/CFS noch nicht heilbar ist. Es gibt kein einziges zugelassenes, nachweislich wirksames Medikament. Es wird immer noch so vieles psychologisiert. Die ganzen Symptome und wie man qualvoll dahin stirbt, das will keiner
“”Me prometí a mí misma que me educaría hasta el final, o al menos que crearía conciencia””
“"Por favor, no dejen de educar a la gente, o por favor, empiecen a hacerlo".”
“"Quiero que algo finalmente suceda, aunque ya no sea para mí".”- 💙 Sarah Buckel
“"Por favor, no dejen de educar a la gente, o por favor, empiecen a hacerlo".”
“"Quiero que algo finalmente suceda, aunque ya no sea para mí".”- 💙 Sarah Buckel
„Hab mir versprochen, bis zum Schluss aufzuklären, zumindest aufmerksam zu machen.“
„Bitte hört nicht auf mit aufklären, oder fangt bitte damit an.“
„Ich möchte, dass sich endlich was tut, wenn auch nicht mehr für mich." - 💙 Sarah Buckel
„Bitte hört nicht auf mit aufklären, oder fangt bitte damit an.“
„Ich möchte, dass sich endlich was tut, wenn auch nicht mehr für mich." - 💙 Sarah Buckel
July 7, 2025 at 5:44 PM
“”Me prometí a mí misma que me educaría hasta el final, o al menos que crearía conciencia””
“"Por favor, no dejen de educar a la gente, o por favor, empiecen a hacerlo".”
“"Quiero que algo finalmente suceda, aunque ya no sea para mí".”- 💙 Sarah Buckel
“"Por favor, no dejen de educar a la gente, o por favor, empiecen a hacerlo".”
“"Quiero que algo finalmente suceda, aunque ya no sea para mí".”- 💙 Sarah Buckel
Reposted by Joneki
Reposted by Joneki
#MECFSAwarenessMonth – Day 22: Conclusion
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
May 22, 2025 at 5:17 AM
#MECFSAwarenessMonth – Day 22: Conclusion
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
Reposted by Joneki
The BMJ's recent propaganda piece about severe ME/CFS hijacked Maeve Boothby O'Neill's death to bolster its arguments. The lead author of the piece did that last summer as well: virology.ws/2025/05/21/t...
Trial By Error: BMJ Publishes New Propaganda Piece on Severe ME/CFS | Virology Blog
By David Tuller, DrPH Last week, The BMJ published a commissioned propaganda piece—er, “opinion”—written by confirmed members of the cognitive behavior ther ...
virology.ws
May 21, 2025 at 5:37 PM
The BMJ's recent propaganda piece about severe ME/CFS hijacked Maeve Boothby O'Neill's death to bolster its arguments. The lead author of the piece did that last summer as well: virology.ws/2025/05/21/t...
“Un estudio financiado por PolyBio y WE&ME identifica dos subtipos distintos de EM/SFC”
“La investigación colaborativa descubre patrones inmunes y de biomarcadores que podrían ayudar a subclasificar EM/SFC y guiar tratamientos futuros”
polybio.org/polybio-and-...
“La investigación colaborativa descubre patrones inmunes y de biomarcadores que podrían ayudar a subclasificar EM/SFC y guiar tratamientos futuros”
polybio.org/polybio-and-...
PolyBio and WE&ME supported study identifies two distinct ME/CFS subtypes - PolyBio Research Foundation
Collaborative research uncovers immune and biomarker patterns that could help subclassify ME/CFS and guide future treatments. Medford MA – May 16,...
polybio.org
May 24, 2025 at 6:46 PM
“Un estudio financiado por PolyBio y WE&ME identifica dos subtipos distintos de EM/SFC”
“La investigación colaborativa descubre patrones inmunes y de biomarcadores que podrían ayudar a subclasificar EM/SFC y guiar tratamientos futuros”
polybio.org/polybio-and-...
“La investigación colaborativa descubre patrones inmunes y de biomarcadores que podrían ayudar a subclasificar EM/SFC y guiar tratamientos futuros”
polybio.org/polybio-and-...
Reposted by Joneki
Y eso lo dices tu que te niegas a defenderles de los aranceles americanos ERES UN MISERABLE Y UN SINVERGÜENZA
May 15, 2025 at 3:50 PM
Y eso lo dices tu que te niegas a defenderles de los aranceles americanos ERES UN MISERABLE Y UN SINVERGÜENZA
Reposted by Joneki
Alastair Miller is lead author of this frustrating new piece in the BMJ: “Patients with severe ME/CFS need hope & expert multidisciplinary care”
www.bmj.com/content/389/...
It mentions recovery.Here’s my post showing the real evidence that he again ignores:
www.s4me.info/threads/dr-a...
#MEcfs #PwME
www.bmj.com/content/389/...
It mentions recovery.Here’s my post showing the real evidence that he again ignores:
www.s4me.info/threads/dr-a...
#MEcfs #PwME
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
May 14, 2025 at 4:52 PM
Alastair Miller is lead author of this frustrating new piece in the BMJ: “Patients with severe ME/CFS need hope & expert multidisciplinary care”
www.bmj.com/content/389/...
It mentions recovery.Here’s my post showing the real evidence that he again ignores:
www.s4me.info/threads/dr-a...
#MEcfs #PwME
www.bmj.com/content/389/...
It mentions recovery.Here’s my post showing the real evidence that he again ignores:
www.s4me.info/threads/dr-a...
#MEcfs #PwME
Reposted by Joneki
🔵 👉🏻 ¿QUÉ ES LA ENCEFALOMIELITIS MIÁLGICA?
#EncefalomielitisMiálgica #MyalgicEncephalomyelitis
👉🏻 ETIOPATOGENIA
👉🏻 DIAGNÓSTICO
👉🏻 CARACTERÍSTICA CARDINAL Y PRINCIPALES SÍNTOMAS
👉🏻 PREVALENCIA
👉🏻 TRATAMIENTO
...
www.ongpem.org/encefalomiel...
#EncefalomielitisMiálgica #MyalgicEncephalomyelitis
👉🏻 ETIOPATOGENIA
👉🏻 DIAGNÓSTICO
👉🏻 CARACTERÍSTICA CARDINAL Y PRINCIPALES SÍNTOMAS
👉🏻 PREVALENCIA
👉🏻 TRATAMIENTO
...
www.ongpem.org/encefalomiel...
ONG PEM - Encefalomielitis Miálgica
La Encefalomielitis Miálgica, también conocida como Síndrome de Fatiga Crónica (EM/SFC) es una enfermedad multisistémica, crónica y debilitante de etiología desconocida, que causa disfunción de los si...
www.ongpem.org
April 1, 2025 at 1:25 PM
🔵 👉🏻 ¿QUÉ ES LA ENCEFALOMIELITIS MIÁLGICA?
#EncefalomielitisMiálgica #MyalgicEncephalomyelitis
👉🏻 ETIOPATOGENIA
👉🏻 DIAGNÓSTICO
👉🏻 CARACTERÍSTICA CARDINAL Y PRINCIPALES SÍNTOMAS
👉🏻 PREVALENCIA
👉🏻 TRATAMIENTO
...
www.ongpem.org/encefalomiel...
#EncefalomielitisMiálgica #MyalgicEncephalomyelitis
👉🏻 ETIOPATOGENIA
👉🏻 DIAGNÓSTICO
👉🏻 CARACTERÍSTICA CARDINAL Y PRINCIPALES SÍNTOMAS
👉🏻 PREVALENCIA
👉🏻 TRATAMIENTO
...
www.ongpem.org/encefalomiel...
Reposted by Joneki
🟦La #EncefalomielitisMiálgica es una ENFERMEDAD NEURO-INMUNO-ENDOCRINO-METABÓLICA.
May 12, 2025 at 3:27 PM
🟦La #EncefalomielitisMiálgica es una ENFERMEDAD NEURO-INMUNO-ENDOCRINO-METABÓLICA.