Matahari
banner
mataharilm.bsky.social
Matahari
@mataharilm.bsky.social
#EncefalomielitisMialgica #ME #MEcfs #EMsfc #CIE10-G93.3 #MillonesAusentes #CIE11-8E49
Reposted by Matahari
🔴📢Los derechos humanos no deben ser únicamente palabras e ideales, sino la base para la dignidad, salud e inclusión, derechos que toda persona con #EncefalomielitisMiálgica merece.

europeanmealliance.org/humanrightsd...
December 10, 2025 at 8:39 AM
europeanmealliance.org
December 10, 2025 at 6:10 PM
'Documentos TV' estrena 'Crónicos ignorados' www.rtve.es/n/16789849/
'Documentos TV' estrena 'Crónicos ignorados'
'Documentos TV' estrena 'Crónicos ignorados'
www.rtve.es
October 28, 2025 at 5:47 PM
Reposted by Matahari
"Cualquier persona que sufra de #MECFS está gravemente enferma.

Describir esto como mero "agotamiento" no hace justicia a la característica principal del #PEM ni a la gravedad general del #MECFS, y es engañoso."
Wer an #MECFS leidet, ist schwer erkrankt.

Dies als bloße "Erschöpfung" darzustellen, wird weder dem Kernmerkmal #PEM noch der allgemeinen Schwere einer Erkrankung an #MECFS gerecht und führt in die Irre.

Bagatellisierungen dieser Art haben jahrzehntelange ermöglicht.
October 7, 2025 at 5:36 AM
Reposted by Matahari
Blood test for ME
96% accuracy
A method already in use for ALS and prostate cancer: EpiSwitch®

Looks to DNAs protein 3D structure: chromosome conformation.

translational-medicine.biomedcentral.com/articles/10....
Development and validation of blood-based diagnostic biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) using EpiSwitch® 3-dimensional genomic regulatory immuno-genetic profiling - Journal of Translational Medicine
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, multifactorial disorder characterised by profound fatigue, post-exertional malaise, cognitive impairments, and autonomic dysfunction. Despite its significant impact on quality of life, ME/CFS lacks definitive diagnostic biomarkers, complicating diagnosis and management. Recent evidence highlights potential blood tests for ME/CFS biomarkers in immunological, genetic, metabolic, and bioenergetic domains. Chromosome conformations (CCs) are potent epigenetic regulators of gene expression and cross-tissue exosome signalling. We have previously developed an epigenetic assay, EpiSwitch®, that employs an algorithm-based CCs analysis. Using EpiSwitch® technology, we have shown the presence of disease-specific CCs in peripheral blood mononuclear cells (PBMCs) of patients with amyotrophic lateral sclerosis (ALS), rheumatoid arthritis (RA), prostate and colorectal cancers, diffuse Large B-cell lymphoma and severe COVID-19. In a recent paper, we have identified a profile of systemic chromosome conformations in cancer patients reflective of the predisposition to respond to immune checkpoint inhibitors, PD-1/PD-L1 antagonists, with 85% accuracy. In this Retrospective case/control study (EPI-ME, Epigenetic Profiling Investigation in Myalgic Encephalomyelitis), we used whole blood samples retrospectively collected from n = 47 patients with severe ME/CFS and n = 61 age-matched healthy control patients to perform whole-genome 3D DNA screening for CCs correlating to ME/CFS diagnosis. We identified a 200-marker model for ME/CFS diagnosis (Episwitch®CFS test). First testing on the retrospective independent validation cohort demonstrated a strong systemic ME/CFS signal with a sensitivity of 92% and a specificity of 98%.Pathways analysis revealed several likely contributors to the pathology of ME/CFS, including interleukins, TNFα, neuroinflammatory pathways, toll-like receptor signalling and JAK/STAT. Comparison with pathways involved in the action of Rituximab and glatiramer acetate (Copaxone) (therapies with potential in ME/CFS treatment) identified IL2 as a shared pathway with clear patient clustering, indicating a possibility of a potential responder group for targeted treatment.
translational-medicine.biomedcentral.com
October 9, 2025 at 2:16 PM
Reposted by Matahari
"Añado que el #PEM puede parecer difícil de comprender/diferenciar en teoría, pero en la práctica es clarísimo. Creo que es imposible que alguien con #PEM lo confunda con la fatiga, ya que se siente totalmente diferente/nuevo a cualquier otra experiencia en la vida."
This thread is perfect.

I will add that #PEM might seem 'difficult' to grasp/differentiate in theory but in pratice it feels crystal clear. I think it is actually impossible for someone with #PEM to confuse it with fatigue as if feels 100% different/new of anything experienced in a lifetime.
#PEM is a very specific physiological abnormal reaction to exertion of any kind, not only physical. The difficulty in recognizing and defining it is due to a longstanding misconception that equals it to fatigue. The core difference between the two is qualitative & quantitative.
October 14, 2025 at 6:41 AM
Reposted by Matahari
"Resumamos de forma exagerada:

No hay fondos para la atención estándar para el #EM/SFC, y en algunos lugares la gente no está dispuesta a desviarse del dogma obsoleto de que el EM/SFC es una enfermedad psiquiátrica.

Es un espectáculo triste."
Fassen wir überspitzt zusammen:

Für normale Versorgung von #MECFS ist kein Geld da und man ist mancherorts nicht bereit, vom überholten Dogma von ME/CFS als psychiatrischer Erkrankung abzuweichen.

Es ist ein trauriges Schauspiel.

www.sn.at/panorama/wis...
Verzögerung bei Versorgungsplan zu ME/CFS und Post Covid
Die Umsetzung des "Aktionsplans" zu postakuten Infektionssyndromen (PAIS) dürfte sich weiter verzögern. Mit dem Plan soll die medizinische und soziale Versorgung etwa von Post Covid- oder ME/CFS-Patie...
www.sn.at
October 14, 2025 at 7:27 AM
Reposted by Matahari
Y así andamos desgraciadamente 😔 ocultando diagnóstico #EMsfc para que nos tomen en serio
Clip: BBC Radio Nottingham, Nyrobi Beckett-Messam from ALT BLK ERA says she hid her #MECFS diagnosis for the first few years, fearing stigma and discrimination.
October 15, 2025 at 8:49 AM
Reposted by Matahari
"¿Cómo podemos hacer que la gente tome conciencia de que existe una enfermedad que desconocen, que destruirá por completo su vida, que no hay ayuda y que si te derrota por pura suerte, estarás gritando en el abismo por el resto de tu tortuosa vida?"

#MEcfs
How can we get people to become conscious of the fact that

there is a disease that they don't know exists

that will absolutely destroy your life,

help is nonexistent and

you'll be screaming into an abyss for the rest of your torturous life if it takes you down

by a roll of the dice.

#MEcfs
There’s also #MECFS

1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.

Only 25% of us can work.
The severest are too sick to leave their house and/or bed.

The absolute worst are tube fed, unable to tolerate light, sound or touch.
October 15, 2025 at 8:51 AM
Reposted by Matahari
Marian Lozano hablará de (sobre)vivir con #EncefalomielitisMiálgica en Conil de la Frontera

@asociacionpem.bsky.social
October 19, 2025 at 10:07 AM
comunidad-biologica.com
October 19, 2025 at 10:50 AM
x.com
October 2, 2025 at 7:16 AM
Reposted by Matahari
Con el lema: “Recordar para reconocer: la Encefalomielitis Miálgica Grave sí existe”. Pasos sustanciales ante el ocultismo oficial, en la lucha de los enfermos para lograr el reconocimiento de su padecimiento

Leer en👉
orrantiadiez.wordpress.com/2025/08/09/c...
Con el lema: “Recordar para reconocer: la Encefalomielitis Miálgica Grave sí existe”. Pasos sustanciales ante el ocultismo oficial, en la lucha de los enfermos para lograr el reconocimiento de su pade...
Con el lema: “Recordar para reconocer: la Encefalomielitis Miálgica Grave sí existe”Pasos sustanciales ante el ocultismo oficial, en la lucha de los enfermos para lograr el reconocimiento de su pad…
orrantiadiez.wordpress.com
August 9, 2025 at 8:05 AM
Reposted by Matahari
Cette reconnaissance marque une étape majeure : le pacing n’est pas seulement une recommandation, mais une stratégie essentielle pour les patients.
Pour les personnes atteintes d’EM, le pacing est indispensable pour stabiliser leur état et surtout éviter une aggravation des symptômes.
October 1, 2025 at 9:04 AM
Reposted by Matahari
👉 Nous mettons à disposition plusieurs ressources pratiques pour comprendre et mettre en œuvre le pacing au quotidien : cloud.millionsmissing.fr/s/YSFKXFRA2B...
PACING
Millions missing France - Rendre visibles des millions d’oubliés
cloud.millionsmissing.fr
October 1, 2025 at 9:04 AM
Reposted by Matahari
You may also find the following MEA booklets helpful:

Hospital Support Pack: https://meassociation.org.uk/hsme
Anaesthesia and ME/CFS:
Anaesthesia and ME/CFS - The ME Association
What to expect at the different stages of a surgical journey. In association with the RCoA.
meassociation.org.uk
October 1, 2025 at 2:10 PM
Reposted by Matahari
"Play explores life with a hidden chronic illness [ME]"

www.bbc.com/news/article...

"This play is about raising awareness, but also making people with ME feel seen. If I can help someone feel understood, I've done my job."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
October 1, 2025 at 8:34 PM
Reposted by Matahari
In Good Health: How Chronic Illness Redefined My Relationship with Food - Rachel Riggs #MECFS and Complex Chronic Illness Cookbook has arrived! www.healthrising.org/blog/2025/10...
In Good Health: How Chronic Illness Redefined My Relationship with Food - Health Rising
In Good Health cookbook by Rachel Riggs
www.healthrising.org
October 1, 2025 at 11:58 PM
Reposted by Matahari
Pues eso 😅
September 15, 2025 at 10:01 AM
Reposted by Matahari
@europeanmealliance.bsky.social has presented it's Declaration for #MyalgicEncephalomyelitis at UN HLM4 about NTD

The @asociacionpem.bsky.social has knocked the door of the Spanish Health Ministry and all regional Counsellors.
Advocates have followed along sending emails to Counselors & politicians
September 26, 2025 at 5:55 PM
Reposted by Matahari
Ya tenemos la cuña. Ahora a empujar todos para abrir la puerta a una nueva estrategia de gestión de la #Encefalomielitismiálgica en España, más humana, porque hasta ahora ha sido el infierno.
Switzerland is putting in place one of Europe’s first national strategies specifically dedicated to improving care and research for ME/CFS and Long Covid
www.europeanmealliance.org/news-Q32025-...
#mecfs #Longcovid #EuropeanMEalliance
September 27, 2025 at 11:26 AM
Reposted by Matahari
Reposted by Matahari
Primera sentencia en España que habla de los sesgos en medicina hacia las mujeres.
La clínica tendrá que indemnizar a la paciente por ingreso psiquiátrico forzoso.
No era anorexia sino SIBO y otros problemas digestivos.

www.publico.es/politica/tri...
No era anorexia, sino un trastorno digestivo: por primera vez una sentencia se fija en los sesgos contra las mujeres en medicina
Una jueza condena a una clínica de Barcelona a pagar 73.000 euros a una mujer a la que diagnosticaron erróneamente un trastorno de la alimentación y fue internada contra su voluntad durante ocho meses...
www.publico.es
October 1, 2025 at 9:45 AM