Lurdes ME 🍉

#EncefalomielitisMialgica #POTS #SPI
11 de marzo trastocó mi vida.

[Lurdes ME 🍉 @LurdesME_]

Recibido ayer de @AsociacionPEM,
𝐀𝐬𝐨𝐜𝐢𝐚𝐜𝐢𝐨́𝐧 𝐝𝐞 𝐄𝐧𝐟𝐞𝐫𝐦𝐨𝐬 𝐝𝐞 𝐄𝐧𝐜𝐞𝐟𝐚𝐥𝐨𝐦𝐢𝐞𝐥𝐢𝐭𝐢𝐬 𝐌𝐢𝐚́𝐥𝐠𝐢𝐜𝐚

Gracias

[Lurdes ME 🍉 @LurdesME_]

@ahmetgemici2990 .🍉

[Mª José Mas Salguero @MasTwitts]

Las pseudoterapias ni se crean ni se destruyen, sólo se transforman.

De la homeopatía ya casi no se habla. Ahora es el turno de la psico-neuro-inmunología. Muchas afirmaciones, poca evidencia clínica sólida, pero el palabro suena a ciencia.

#MedicinaBasadaEnLaEvidencia
#PensamientoCrítico

[Lurdes ME 🍉 @LurdesME_]

@CER_OF_AUT Esa señora dice tonterias, pero por lo menos no habla de "fatiga crónica" algo que tú, por lo que sea, así llamas al sfc.

Por lo que sea 🤷‍♀️

[PwME 4 bioMEdical research @ValeBodi]

Mapping cerebral blood flow in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and orthostatic intolerance: insights from a systematic review
Armstrong et al.

#MECFS #CBF #OI

https://t.co/inJHYoB2eb

[Adam @ABrokenBattery]

During Ean’s time in hospital, he was subjected to mistreatment, including being dropped into a swimming pool when he was paralysed, to see whether he would save himself.

Here is a clip of Ean talking about his experience.

[Lurdes ME 🍉 @LurdesME_]

“Durante la estancia de Ean en el hospital, fue sometido a malos tratos, incluyendo ser arrojado a una piscina cuando estaba paralizado, para ver si se salvaría él mismo”

“Aquí hay un clip de Ean hablando sobre su experiencia”

#EncefalomielitisMialgica
#pwME

[Adam @ABrokenBattery]

During Ean’s time in hospital, he was subjected to mistreatment, including being dropped into a swimming pool when he was paralysed, to see whether he would save himself.

Here is a clip of Ean talking about his experience.

[Adam @ABrokenBattery]

“Perhaps the most damaging experience of all though is not simply the illness itself. It is not being believed.”

MSP Morven-May MacCallum speaking about her experience of Lyme disease and other chronic illnesses, including #MECFS, in the Scottish Parliament.

[Lurdes ME 🍉 @LurdesME_]

@yousef_ki1 🍉💔

[LUCIΞN | DARKTIMES @LucienDorman]

Hi Hannah,

Your comment is not just wrong. It is deeply disrespectful and genuinely inhumane.

Please, before speaking with such certainty, look at the recent medical literature on ME/CFS. This disease is not psychological. It is a serious, multi-system biological illness involving the immune system, nervous system, autonomic function, metabolism, circulation, and energy production.

I’m university educated. I was a tech founder and CEO. I had a beautiful girlfriend, a full life, ambition, independence, and every reason to want to be out in the world.

I snowboarded, fly-fished, hiked, travelled the world, worked relentlessly, and lived in the mountains because being outdoors was one of the great loves of my life. From my bedroom window, I can still see the peaks I would give almost anything to hike again.

I would cut off my arms and legs if it meant having the physical capacity to live normally again.

I now have very severe ME/CFS with extreme physical, cognitive, and sensory disability.

I lost my work. I lost my partner of seven years. I lost my ability to have sex. My ability to speak is greatly diminished. I cannot tolerate light, sound, television, podcasts, reading, touch, human presence, or even emotional expression. Crying, laughing, or pushing slightly too hard can leave me with severe physical symptom exacerbation for days. Sometimes, if I push too far, the worsening is permanent.

This is not anxiety. This is not deconditioning. This is not a lack of motivation. This is not a belief system.

Yes, the CNS and autonomic nervous system are profoundly dysfunctional, but that is only part of the picture. The depth of biological disruption in ME/CFS is staggering.

The suffering is almost impossible to describe. It is not tiredness. It is not burnout. It is a state of being trapped inside a body that punishes basic human activity.

Words like yours are not harmless. They contribute to the stigma that leaves severely ill people dismissed, neglected, and abandoned while they are already living through something close to hell.

Please open your eyes. Read the science. Listen to patients. This disease is real, and the people suffering from it deserve basic human respect.

The opinion you have is outdated and lacking any serious scientific basis.

Please, just for a moment, imagine that you might be wrong.

Imagine that the people living with this disease are not lazy, anxious, deconditioned, or mistaken about their own bodies. Imagine that they are describing a real biological illness that medicine has failed to properly understand for decades.

Because that is the reality.

[Memorial ME Victims R.I.P. @MemorialME]

🕯️#RIP Mirjam Knapp
* 08.12.1999 - † 28.04.2026

Mirjam wurde mit 14 zwangseingewiesen, auf grausamste Weise aktiviert u. misshandelt, nur durch die Hilfe von Dr. Speight durfte sie nach 20 Mon. wieder heim.
Sie starb an #VerySevereME.🖤

In Gedanken bei ihrer Familie.💔

[Lurdes ME 🍉 @LurdesME_]

"La gente con #EncefalomielitisMialgica tristemente ha tenido que soportar demasiada incredulidad y demora".

Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.

[Adam @ABrokenBattery]

“People with ME have sadly had to endure far too much disbelief and delay.”

Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.

[Lurdes ME 🍉 @LurdesME_]

No podemos seguir así. Es imperdonable la actuación de ciertos- muchos iluminados
Hay mucha información como para que sigan ignorando la #EncefalomielitisMialgica.

Que podemos hacer para que esto no ocurra?
Era una niña y le quitaron la protección de su madre.
Malditos sean.

[Lurdes ME 🍉 @LurdesME_]

Mirjam Knapp de Alemania

Un fuerte abrazo a la familia y mi sentimiento profundo para Mirjan (26 años) 💔😘

Por estos jóvenes debemos seguir activos en lo que podamos para que la #EncefalomielitisMialgica sea vista como una enfermedad grave.

🕊️

https://t.co/0CmjWMJJ7j?

[Lurdes ME 🍉 @LurdesME_]

Mirjam Knapp de Alemania

Un fuerte abrazo a la familia y mi sentimiento profundo para Mirjan (26 años) 💔😘

Por estos jóvenes debemos seguir activos en lo que podamos para que la #EncefalomielitisMialgica sea vista como una enfermedad grave.

🕊️

https://t.co/0CmjWMJJ7j?

[Lurdes ME 🍉 @LurdesME_]

@CK65375 @karlander_ 😞

[Koral_ME @koral_becker]

#EncefalomielitisMiálgica

[Lurdes ME 🍉 @LurdesME_]

@OSIArabaESI
@DonostiakoOsp
@OSIEECruces
@osakidetzaEJGV @Gob_eus
Director Regional de la OMS, Europa, inauguró #IIMEC18 afirmando:
«#EncefalomielitisesMialgica es 1enfermedad física grave, compleja y multisistémica. Implica disfunción neurológica, inmunológica y metabólica»

[Dr. Markus Fraczek @MarekSJF]

I do not know of many other illnesses in which patients spend significant time and energy identifying, implementing, and adapting therapeutic interventions, often without the guidance of a medical practitioner. Patients are absolutely desperate to "move forward".

[Todd Davenport @sunsopeningband]

I know people who have been let go from their faculty positions for researching ME/CFS. And the people whose funding dried up and they had to find something better resourced to do. Or the talented folks we couldn’t persuade to work on ME/CFS because we can’t afford to pay them.

[Anil van der Zee © @AnilvanderZee]

@subversivepsych @cfs_research @Fionas_Story Again no objective evidence for these claims...

Short summary of a reanalysis by @Huisarts_Vink of a review by Kuut et al. showing that the claim that CBT is effective for patients with different presentations, including PEM is not supported by the data.

https://t.co/r7nYq6fQ9k

[Lurdes ME 🍉 @LurdesME_]

“Este video muestra 1 unidad de cuidados única en Noruega llamada Røysumtunet para personas con #severeME y ME muy grave

Es 1 de los pocos lugares donde los pacientes más graves pueden recibir cuidados especializados”
¡Necesitamos esto en todas partes!

#pwME #myalgicE #severeME

[Anil van der Zee © @AnilvanderZee]

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.

It is one of the only places where the sickest patients can receive specialised care.

We need this everywhere!!

#pwme #myalgicE #millionsmissing #severeME