Jacure

Programador y jugón desde hace un porrón de años.

[k3bone @k3bone]

¿Cansado de copiar y pegar código del chat al servidor? 💻 A partir de hoy, todos los planes de hosting de https://t.co/NSk2ZGKnMc integran gratis #codewithia de #Softaculous. 🤖 Un asistente que edita, crea y repara archivos directamente en tu cuenta: https://t.co/fr0kHba6O7
#ia

[rbenlg @rbenLG]

Ayer dijo @NunezFeijoo q no se puede mantener más de 1 millón de bajas al día y tiene razón.
Pero en vez de buscar la raíz pagarán justos por pecadores.
Ahora pasan de nosotros, pronto lo mismo y cobrando menos.
Vienen mal dadas.
#longcovid #covidpersistente.
(Y yo trabajo 🤞)

[🔬 Guty Schnauzer @guty2370]

¿Y si aumentar la disponibilidad de oxígeno pudiera ayudar a "reconfigurar" circuitos cerebrales alterados en la EM/SFC?

Nuevo estudio de la Dra. Carmen Scheibenbogen (@C_Scheibenbogen ) y colegas:

Abro hilo 🧵

[k3bone @k3bone]

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🤖 Te lo contamos todo aquí: https://t.co/leQNLNlrLo
#seo #geo

[rbenlg @rbenLG]

-Una enfermedad discapacitante crónica
-Siempre estás enfermo
-Ademas cursa en brotes que la acentúan aún +
-Fatiga física y mental, dolor, migrañas y trastornos digestivos los cabeza de cartel
-No hay cura
-LDN es d lo poco que ayuda
-Falta formación e información
#longcovid

[rbenlg @rbenLG]

Vuelve el verano.
Vuelve volver a ver gente que no ves hace tiempo.
Vuelve el tener que hacer feedback con la gente de que el #covidpersistente es crónico
-Como estás
-Pues hoy me duelen hasta el blanco de los ojos
-Otra vez estás mal?
-Son todos los días.
Un año más.
#longcovid

[Manuel Ruiz @manruipa]

‼️⚠️Please read this until the end.

A widely shared article has presented a deeply misleading view of Long COVID, suggesting once again that cognitive behavioral therapy, exercise, and “mind-body” approaches may be the uncomfortable truth patients refuse to accept.

This needs to be challenged.

Not because the nervous system does not matter.
Not because psychological support cannot help.
But because confusing support with cure, physiology with psychology, and heterogeneity with “it might be in your head” is exactly how medicine has harmed post-infectious patients for decades.

There are articles about Long COVID that look like science journalism, but in reality they repackage, in modern language, a very old idea: if we do not fully understand a disease, maybe the problem is in the patient’s mind.

And that is not science. That is repeating history.

The article begins with a striking sentence:

“There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.”

This may sound forceful, but it is a very misleading way of presenting the problem.

The fact that there is still no drug specifically approved for Long COVID, or a single diagnostic test, does not mean that “nothing has been found.” It means that we are dealing with a heterogeneous disease, probably with several biological subgroups, and that medicine has not yet converted those findings into validated clinical tools.

“No single diagnostic biomarker” is not the same as “no biology.”

In just a few years, immunological, vascular, neurological, endocrine, and metabolic abnormalities have been described in subgroups of Long COVID patients: autonomic dysfunction, herpesvirus reactivations such as EBV/HHV-6, alterations in the cortisol axis, autoantibodies against GPCR receptors — including adrenergic and muscarinic receptors — persistent viral antigens, endothelial damage, muscle abnormalities after exertion, mitochondrial dysfunction, persistent inflammation, and differential immune changes.

Is everything settled? No.

Does that mean it is psychological? Also no.

Science does not work like that. Multiple sclerosis did not stop existing before we had MRI. Many autoimmune diseases do not show up in routine blood tests. If a complete blood count, a basic biochemistry panel, or an X-ray comes back “normal, normal, normal,” that does not prove the absence of disease. It only proves that you are looking with inadequate tools.

One of the article’s most serious mistakes is this: it confuses the absence of a simple clinical test with the absence of organic disease.

And that mistake has caused harm for decades.

The article also says:

“Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction.”

No. That is not correct.

A hypothesis is a provisional explanation. But when you compare patients and controls and find significant differences in muscle tissue, metabolism, response to exertion, immune biomarkers, viral antigens, autoantibodies, or vascular dysfunction, you are no longer talking about “little more than hypotheses.” You are talking about lines of biomedical evidence that still need to be organized, replicated, stratified, and translated into treatments.

That is not scientific failure. That is research into a complex and new disease.

🔵Continued in the next post.👇🏻
(1/6)

[rbenlg @rbenLG]

3 de junio de 2026.
5 años con #covidpersistente.
Miro hacia atrás y lo primero que pienso es que como he podido aguantar.
Y hacia delante si podré seguir haciéndolo.
Ojalá llegue el día que deje de NO celebrar este cumpleaños 🎂.
#longcovid

[Manuel Ruiz @manruipa]

💊‼️Long COVID could be, at least in some patients, an autoimmune disease occurring alongside chronic infection, antigenic persistence, or viral reactivations.

Okay.
So now what?

Are there treatments?
Can autoantibodies be removed?
Can this autoimmunity be “switched off”?
Are we close to a cure?

The honest answer is this: we are not facing an immediate cure , although possibly a future one, but we are facing a huge shift in how we think about the disease.

Because if part of Long COVID, and possibly also ME/CFS, has an autoimmune basis, then it would no longer make sense to treat it as a diffuse syndrome with no therapeutic direction. We would need to do the same thing we do in other autoimmune diseases: classify patients properly, identify biomarkers, and design a stepwise treatment approach.

Not all patients would have the same mechanism.
Not all patients would respond in the same way.
And not all patients would need the same level of treatment.

But for the first time, a more logical therapeutic map is starting to emerge.

A clearer logic is beginning to appear: identify which patients have a real autoimmune component and, from there, think about which therapies could make sense.

At present, what is accessible would not be a cure, but treatments already known from other autoimmune diseases that could help reduce autoantibody activity, modulate the immune response, or decrease part of the immunological damage.

In the best-case scenario, these would be treatments to improve, stabilize, or reduce autoimmunity. Not to completely “erase” the disease.

If I had to rank the options in an orientative way, thinking about potential usefulness and safety profile, I would do it like this:

1. IVIG

The most reasonable short-term option would probably be IVIG, meaning intravenous immunoglobulin.

IVIG does not directly eliminate all autoantibodies as such, but it can modulate the immune system, compete with pathogenic autoantibodies, block part of the inflammation, and dampen the immunological attack without requiring such intense immunosuppression.

In many autoimmune diseases, it is used precisely because of this immunomodulatory effect. Among this type of therapy, it is probably one of the options with the best balance between potential usefulness and safety profile.

That said, it is not free of side effects, it is expensive, and access is limited.

2. FcRn inhibitors

Next, I would place FcRn inhibitors.

These drugs are very interesting because they reduce the total amount of circulating IgG and, with it, they can also reduce the burden of pathogenic autoantibodies.

The advantage is that they are quite targeted toward the humoral component of autoimmunity, meaning the antibody-mediated part.

The disadvantage is that they are not yet truly established for Long COVID or ME/CFS, and it would still be necessary to demonstrate very clearly which subgroup of patients would benefit the most.

Even so, conceptually, if we are talking about an autoantibody-mediated disease, this is one of the most promising strategies.

3. Immunoadsorption

At the next level, I would place immunoadsorption.

This technique consists of filtering the blood to remove immunoglobulins, especially those that may be participating in the autoimmune process.

It is a more targeted strategy than systemic immunosuppression and, in diseases mediated by autoantibodies, it can make a lot of sense.

Its main limitation is logistical: it is not a simple therapy, it requires specialized centers, and its effects may not last if the immune system continues producing the same autoantibodies afterwards.

(1/3)

🔵Continued in the next post.👇🏻

[rbenlg @rbenLG]

Nos estamos consumiendo
Nos están consumiendo.
TIC TAC.
#longcovid
#covidpersistente
@LaRiojaPP
@PSOELaRioja
@iurioja
@javidearnedo

[rbenlg @rbenLG]

Pues esto es lo que dice la IA sobre el gobierno de España y el #longcovid
#covidpersistente
https://t.co/tw7kzJrqNp

[Long Covid Euskal Kolektiboa. @Euskalkolektibo]

Artículo de la Dra Brittani James sobre la #LongCovid
Opina que la atención médica moderna está mucho menos preparada para las enfermedades crónicas complejas de lo que mucha gente creía.

https://t.co/cSrNMR7aa7

[rbenlg @rbenLG]

Cuando existirá una o varias curas?
Necesitamos un horizonte temporal.
#longcovid #covidpersistente

[rbenlg @rbenLG]

6 años después vamos necesitando escuchar "Eureka"
#longcovid
#covidpersistente

[Long Covid Euskal Kolektiboa. @Euskalkolektibo]

"Soy incapaz de caminar más de 40 metros. Además de mi inmensa fatiga, sufro varios episodios diarios de malestar, dificultades cognitivas y dolor constante en todo el cuerpo..." Así se expresa Carla que antes era deportista y ahora padece #LongCovid

https://t.co/2lCkZhPB4h

[k3bone @k3bone]

WordPress 7.0 "Armstrong" ya es oficial y viene con IA integrada. Se acabaron los plugins pesados.
Analizamos todas las novedades (y por qué deberías tener cuidado al actualizar tu web hoy mismo) en nuestro blog:
https://t.co/uklblUzduf
#WordPress #WordPress7 #desarrolloweb

[rbenlg @rbenLG]

Premio al colegio de enfermería de la Rioja al mejor proyecto de investigación, con el tema #covidpersistente.
Enhorabuena!
https://t.co/NzKlcOPGrI

[rbenlg @rbenLG]

Siempre me he preguntado pq hay médicos, y son la mayoría,que en el contexto del #covidpersistente no te plasman en papel (ni pidiéndolo) lo q si te dicen de viva voz
Cosa que de cara a incapacidad y discapacidad por otro lado no tiene ningún valor al no estar escrito.
#longcovid

[rbenlg @rbenLG]

-Tengo migrañas desde el COVID hace 5 años.
-Neuróloga: no tiene q ver, es genético, tiene tú familia?
-Nadie, sin embargo los de la asociación de #covidpersistente casi todos.
-🫪
Ayer.
Así andamos
#longcovid

[rbenlg @rbenLG]

Más del triple de lo que te dijeron.
Echa cuentas entonces de la gente con #covidpersistente.
#longcovid
https://t.co/xuzezLkFMl