Burulina

Feminismo, Buruli, cooperación internacional, Salud Pública, psiquiatría, diversidad funcional, investigacion

[Manuel Ruiz @manruipa]

⚠️💊 Long COVID and ME/CFS: a layered strategy, not a single treatment for everyone

One of the mistakes when talking about Long COVID and ME/CFS is looking for “the treatment”, as if all patients had exactly the same mechanism.

They do not.

But that does not mean there is no common logic.

The model I propose is to think of these diseases as post-infectious processes maintained by layers:

A persistent pathogen or a sustained antigenic source.
Chronic immune hyperactivation.
Immune exhaustion and poorer control of latent pathogens.
Secondary reactivations that add more antigenic load.
Systemic consequences: inflammation, mast cells/histamine, oxidative stress, barrier dysfunction, autoimmunity, dysautonomia, neuroinflammation, endocrine alterations or vascular involvement.
Baseline treatments and then treatments directed according to the dominant mechanism.

The key is not to place all layers at the same level.

Not everything is a primary cause.

Some things are consequences.

And some consequences, once they appear, can become amplifiers that maintain the vicious cycle.

Long COVID and ME/CFS: same model, different degree of classification

For me, Long COVID and ME/CFS are not opposite processes.

They may follow the same post-infectious model.

The main difference is that Long COVID is better classified by its initial pathogen: SARS-CoV-2.

By contrast, ME/CFS is a more heterogeneous label where post-infectious patients initiated or maintained by different pathogens may be grouped together: EBV, HHV-6, CMV, enteroviruses, parvovirus B19, Borrelia, Toxoplasma or other persistent, latent or intracellular pathogens.

In other words:

Long COVID would be a post-infectious disease defined by SARS-CoV-2.

ME/CFS could include several similar post-infectious subtypes, but initiated by different pathogens.

The underlying logic would be the same:

persistent pathogen or antigenic reservoir
→ continuous immune stimulation
→ chronic immune hyperactivation
→ sustained inflammation
→ T/NK cell exhaustion
→ poorer control of latent pathogens
→ new reactivations
→ more antigenic load
→ more inflammation.

Therefore, the problem would not be that Long COVID and ME/CFS have nothing to do with each other.

The problem is that ME/CFS probably mixes post-infectious patients of different origins under the same clinical label.

▪️Long COVID: SARS-CoV-2 as the initial persistent source

In Long COVID, the initial axis would be the persistence of SARS-CoV-2 in tissue or cellular reservoirs, with sustained or intermittent production of viral antigens.

There does not necessarily have to be detectable viremia in blood.

But if the immune system keeps seeing viral antigens months or years later, those antigens are not well explained as simple passive “remnants” from the initial infection.

The body degrades proteins and RNA through proteases, nucleases, autophagy, the proteasome, cellular turnover and immune clearance.

For this reason, prolonged presence of viral antigen points to a sustained source:

tissue reservoirs;
infected cells;
low-level persistent infection;
abortive or incomplete infection;
intermittent production of viral material;
local reactivation;
or cellular persistence in tissues where the immune system does not properly eliminate the stimulus.

In other words:

if there is persistent antigen for months or years, we need to think of some type of reservoir or biological source that renews it.

That stimulus keeps the immune system chronically activated.

And that chronic activation can lead to persistent inflammation, immune exhaustion and poorer control of other latent pathogens.

[DENTRO_MADRID🥑🥝🍌🥦🥬🍇 @CER_OF_AUT]

👉Si tienes #covidpersistente o cualquier otra enfermedad crónica, y has tenido que sufrir al INSS en tus valoraciones para pedir la incapacidad, y te la han denegado aludiendo que estás sano porque todavía tienes piernas, ojos y brazos en el lugar correspondiente en tu cuerpo, firma y difunde la petición adjunta que va dirigida @DefensorPuebloE

👉Si no sufres covid persistente ni ninguna enfermedad crónica, pero tienes amigos o conocidos que ´si, ayúdanos a recoger firmas y difunde. No te llevará más de un minuto. Gracias!

🚨Por si no lo sabes, el INSS, como protocolo, está denegando cualquier petición de incapacidad, perjudicando la salud de las personas con covid persistente , haciéndoles incorporarse al puesto de trabajo, promoviendo el empeoramiento de los síntomas de esos enfermos.
Esta actitud desde la administración es negligente y se está mirando para otro lado, haciendo que miles de pacientes se encuentren en un limbo social, por la mala praxis del inss, sin recursos y sin ayudas.

https://t.co/k8F8cv49k4

[Prof. Akiko Iwasaki @VirusesImmunity]

Our study enrolled 45 participants with LC and 45 age-sex-matched controls. Surveys and health questionnaires were used to collect symptom profiles. Note the intense levels of fatigue, pain, and other symptoms in our LC group (bottom half) throughout the days 😱 (2/)

[PolyBio @polybioRF]

Exciting news—we’re hosting Marc Elia at PolyBio’s Spring 2026 Symposium, who will be presenting on Invivyd’s collaboration with the SPEAR working group to develop monoclonal antibody therapies for Long COVID and post-COVID vaccination syndrome. This is one of the key presentations on May 22 addressing biomarker-guided clinical trials in the Long COVID field.

Register for the symposium here: https://t.co/pWwNZ8R9VD

[AMACOP | Asociación Madrileña de Covid Persistente @covid_madrid]

Hoy pintamos de colores para dar voz a lo invisible

​En este Día Mundial de la Fibromialgia y Encefalomielitis Miálgica, nos unimos para reconocer las batallas diarias de millones de personas

Cada color tiene un significado vital:

🩷 Rosa: Por quienes enfrentamos el Long COVID (COVID Persistente)

💙 Azul: Por los que arrastramos la Encefalomielitis Miálgica

💜 Morado: Por la fuerza de quienes vivimos con Fibromialgia

​No son solo síntomas; son vidas transformadas que buscan investigación, empatía y validación

Juntos somos más fuertes que el dolor y la fatiga extrema

​¿Te unes? Comparte este post o comenta con un corazón de tu color para mostrar tu apoyo
​#DíaMundialEncefalomielitisMiálgica #Fibromialgia #LongCovid #CovidPersistente #EndTheSilence

[Anil van der Zee © @AnilvanderZee]

Join us in Amsterdam, 26–29 Aug, for the leading global conference on Post‑Acute Infection Syndromes, featuring new science, ISLC‑#PAIS launch, Summer School, Early‑Career Symposium & Patient Recap.
Register + submit abstracts (until 15 May): https://t.co/SfAhyhF3sv @RobWust

[Harry Spoelstra @HarrySpoelstra]

Overview and Pathophysiology of Long COVID

🚨200–400 MILLION people worldwide are crippled by Long COVID. That's not a 'mild' virus aftermath, it's multi-organ destruction that persists for years. Wake up. #LongC0vid

➡️Authored by @elisaperego78 , a Long COVID patient-researcher and advocate (with lived experience of chronic illness), it brings authenticity and depth rarely found in traditional academic reviews, blending rigorous synthesis with real-world urgency.💪👏

➡️Summary:
1. Long COVID affects an estimated 200–409 million people globally, with pooled prevalence around 36% across studies. Risks persist across all ages, even in mild/asymptomatic or vaccinated/Omicron cases, though attenuated by vaccination,

2. It is a heterogeneous, multi-system condition involving dozens of symptoms (e.g, fatigue, brain fog, dyspnea, pain) that evolve over time, often relapsing, with potential for subclinical damage, disability, and increased mortality,

3. Major pathophysiological mechanisms include viral persistence in tissues, immune dysregulation (e.g, lymphopenia, T-cell exhaustion, autoantibodies, complement issues, mast cell activation), autoimmunity, endothelial dysfunction, micro/macro-thrombosis (including fibrinolysis-resistant microclots), chronic inflammation, microbiome dysbiosis, and reactivation of latent pathogens,

4. Organ-specific involvement is widespread: cardiovascular/endothelial (e.g, vasculopathy, accelerated aging, perfusion defects), heart (myocarditis, arrhythmias, ischemia), lungs (fibrosis, thrombosis, perfusion abnormalities), CNS (neuroinflammation, Gray matter loss, BBB disruption), PNS (neuropathy, dysautonomia/POTS-like), GI (dysbiosis, barrier impairment), hepatobiliary/pancreas (injury, new-onset diabetes), kidney (progression to CKD, thrombotic microangiopathy),

5. Evidence draws from imaging (e.g, CMR showing up to 78% cardiac involvement post-mild infection), histology/autopsy (viral presence, thrombi, NETs), and large meta-analyses (e.g, 97 million people showing elevated autoimmune disease risk),

6. Challenges include heterogeneous case definitions (WHO, NICE, etc.), limited biomarker access, surveillance gaps post-2022, and reinfection contributions.

➡️‼️In short, this isn't just another review, it's a patient-powered wake-up call exposing Long COVID as one of the most complex, widespread, and under-addressed biological crises of our era.

‼️So, Long COVID represents a profound, enduring public health crisis driven by persistent viral and immune-mediated multi-organ destruction, with no resolution in sight without urgent, scaled-up research and intervention. #WAKEUP #AvoidSars2 #AvoidReinfections

[Dr Ricardo Gil @dricardogil]

2020. 🤔💭 Seguro que tienes en mente 😷💉 la pandemia y lo que supuso a nivel mundial. 👉 Pero hay una realidad invisibilizada para la que es necesario seguir concienciando: el COVID Persistente. 🧑‍⚕️💬 Hoy no podía dejar de hablar del tema y unirme a @covid_madrid 👌👌👌

[Association Winslow Santé Publique @winslow_la]

Les conditions météorologiques étant difficiles, nous avons hésité à maintenir ; mais de courageux•ses #CovidLong avec de beaux 😷 se sont déplacé•es malgré la pluie pour marquer ce #LongCovidAwereness!
#LongCovidHeartbeats

[Danilo.Buonsenso_Surf4Children @surf4children]

https://t.co/htIWu2NXpU

[AMACOP | Asociación Madrileña de Covid Persistente @covid_madrid]

Carles , con 21 patologías por #covidpersistente, destapa la desprotección de los afectados

Hoy #15M las voces de los + de 300.000 afectados en Cataluña resuenan con fuerza para recordar el profundo impacto que esta enf. multisistémica sigue generando https://t.co/YFUeYZsLhj

[Madres por el 12 de Mayo @Madres12Mayo]

Me uno a la conmemoracion del #DiaInternacionaldelCP
Recordar que màs del 50% cumple criterios de #EncefalomielitisMialgica reconocida por la OMS desde 1969.
Est@s enferm@s siguen olvidados e incluso "maltratados" por médicos que no reconocen su enfermedad.

[Michael R Scoma MD @DrMichaelScoma]

Long COVID and vaccine injury are diseases of autonomic dysfunction superimposed upon a likely backdrop of underlying hEDS or some spectrum of connective tissue laxity.

What separates the affected from the unaffected? What separates the mild from the severe? 🤔

[💜 Ruth Lobo @RuthLobo9]

Una científica hasta la médula hasta el último momento, resiliente, solidaria e inteligente y con unas ganas de vivir que contagiaban a todo el q se acercase
Una estrella de luz infinita que iluminó nuestra vida y nuestros corazones con su presencia
Te echo de menos, peque 💫💫💫

[International Long Covid Awareness @LCawarenessInt]

International Long Covid Memorial Day

💔

#LongCovid #COVID
#LongCovidAwareness
#LongCovidKills
#LongCovidMemorialDay

[covidpersistenteclm @covidpersisten]

“Sobrevivimos al virus, no al abandono médico.”

#COVIDPersistente #LongCovid #15Marzo #LoInvisibleDuele #MillonesPersistimos
@sanidadgob
@gobjccm
@Monica_Garcia_G

[AMACOP | Asociación Madrileña de Covid Persistente @covid_madrid]

📆 Mañana 15 de marzo, coincidiendo con el Día Internacional de la Covid Persistente se llevará a cabo el Congreso Online Internacional en Long COVID y Enfermedades Debilitantes (LCDD – Long COVID and Debilitating Diseases)

Este congreso se celebrará de forma online y gratuita, y este año, al menos en esta edición, se realizará en español, lo que facilitará el acceso y la participación de muchas personas de nuestra comunidad

🎤 El evento contará con la participación de profesionales y ponentes comprometidos con la investigación y la visibilización de estas enfermedades, entre ellos:
Paula Sánchez Diz, Dra. Patricia Puiggròs, Silvia Arroyo-Romero, Israel Pichardo-Casas (PhD), Manuel Ruiz Pablos, Gustavo Aguirre Chang (MD), Niah Stewartson, y Marta Belenguer / Celia Piquer de ATEAVA, etc

Además de AMACOP, el congreso cuenta con el apoyo de organizaciones relevantes como:

SEMG – Sociedad Española de Médicos Generales y de Familia @SEMG_ES

REiCOP – Red Española de Investigadores de COVID Persistente @_REiCOP

Y otras asociaciones y colectivos de España

➡️ El congreso es online, abierto y gratuito. Compártelo con todas las personas que creas que le puedan venir bien

🔗 Más información: https://t.co/pVqJyw21kp

⚠️ Recuerda también que el 15 de marzo es nuestro día clave para compartir información y visibilización de nuestra patología para que seamos cada vez más visibles

Usa los hashtags:

#LongCovidAwareness #LongCovidAwarenessMonth #LongCovidAwarenessDay #CureLongCovidNow #LongCovidMakesUsOne

@LCawarenessInt

[rbenlg @rbenLG]

Gracias por la entrevista a La Rioja.
Estupendo trabajo.
#longcovid
#covidpersistente

[ARIOCOP (ASOC. RIOJANA DE COVID PERSISTENTE) @covid_larioja]

Hoy 15 M día internacional del #covidpersistente.
Ayúdanos a difundir por el bien de todos 🫂🫂

[💜 Ruth Lobo @RuthLobo9]

🖤En este día, recordamos a los ausentes, a tod@s l@s q fallecieron por #CovidPersistente
💔Mi recuerdo especial va para María Frías, nuestra peque, q falleció el 15 de febrero, ya casi hace un mes
🧘‍♀️Era un alma sabia en un cuerpo de 22 primaveras
#LaVidaEsHoy
#LongCovidAwareness