ME Vereniging Nederland
@meverenigingnl.bsky.social
De nationale patiëntenvereniging voor myalgische encefalomyelitis.
www.mevereniging.nl
www.mevereniging.nl
Blijft vreemd dat rechters het bij dit onderwerp wel kunnen, terwijl ze bij ME volledig door het ijs zakken.
January 28, 2026 at 10:32 PM
Blijft vreemd dat rechters het bij dit onderwerp wel kunnen, terwijl ze bij ME volledig door het ijs zakken.
Het is Jenga, niet Jinga.
January 23, 2026 at 1:29 PM
Het is Jenga, niet Jinga.
That ship has sailed. It is now up to the people to rise up and overthrow the dictatorship.
January 21, 2026 at 10:00 AM
That ship has sailed. It is now up to the people to rise up and overthrow the dictatorship.
You are still under the illusion that the US is a democracy? That ended the minute that Trump got elected.
January 21, 2026 at 9:57 AM
You are still under the illusion that the US is a democracy? That ended the minute that Trump got elected.
Het is dan ook niet waar. Maar gaat mogelijk wel gebeuren.
January 11, 2026 at 10:52 AM
Het is dan ook niet waar. Maar gaat mogelijk wel gebeuren.
The result of continuously inventing fake diagnoses (like CFS and ME/CFS) and not learning the lessons. There exists no disease named longcovid. One can have post-covid symptoms, or one can have a chronic corona disease like CAME (encephalitis).
January 7, 2026 at 12:52 AM
The result of continuously inventing fake diagnoses (like CFS and ME/CFS) and not learning the lessons. There exists no disease named longcovid. One can have post-covid symptoms, or one can have a chronic corona disease like CAME (encephalitis).
Lastig, want wat als gezond of ongezond geldt verandert met de dag.
January 5, 2026 at 1:28 PM
Lastig, want wat als gezond of ongezond geldt verandert met de dag.
With regard to your classes: no ME patient will be able to take them, and none should even try.
January 5, 2026 at 1:04 PM
With regard to your classes: no ME patient will be able to take them, and none should even try.
Note that a delayed response is not part of the definition of PEM.
January 5, 2026 at 12:50 PM
Note that a delayed response is not part of the definition of PEM.
A worsening of symptoms upon exertion is called PESE. This is near omnipresent in disease and even without disease, and defines nothing. You still want to take it into account in the management of any condition.
January 5, 2026 at 12:45 PM
A worsening of symptoms upon exertion is called PESE. This is near omnipresent in disease and even without disease, and defines nothing. You still want to take it into account in the management of any condition.
Your survey is not about ME, but about 'ME/CFS' which misleadingly stands for CFS with PEM. 'ME/CFS' is unrelated to ME.
January 5, 2026 at 12:39 PM
Your survey is not about ME, but about 'ME/CFS' which misleadingly stands for CFS with PEM. 'ME/CFS' is unrelated to ME.
ME is not a spectrum, nor on a spectrum. It is a single specific disease, and the diagnosis is straightforward. You either have it or you don't.
January 5, 2026 at 12:36 PM
ME is not a spectrum, nor on a spectrum. It is a single specific disease, and the diagnosis is straightforward. You either have it or you don't.
PEM was introduced in Fukuda (1994) as a symptom of CFS (not ME) but without a definition, except that it lasts more than 24 hours. Now, malaise is defined as a general feeling of discomfort. So PEM, in CFS, is a general feeling of discomfort occuring after exertion, lasting more than a day.
January 5, 2026 at 12:13 PM
PEM was introduced in Fukuda (1994) as a symptom of CFS (not ME) but without a definition, except that it lasts more than 24 hours. Now, malaise is defined as a general feeling of discomfort. So PEM, in CFS, is a general feeling of discomfort occuring after exertion, lasting more than a day.
There is nothing helpful about providing false information.
January 5, 2026 at 12:04 PM
There is nothing helpful about providing false information.
PEM is not a symptom of ME. A 'post viral infection' is a contradictio in terminis. Not sure what you intended to say instead.
January 5, 2026 at 12:02 PM
PEM is not a symptom of ME. A 'post viral infection' is a contradictio in terminis. Not sure what you intended to say instead.
PEM is not a symptom of ME. Also, there is no mild ME.
December 29, 2025 at 9:17 PM
PEM is not a symptom of ME. Also, there is no mild ME.
MEpedia contains many errors, a consequence of following a particular agenda.
December 9, 2025 at 3:37 PM
MEpedia contains many errors, a consequence of following a particular agenda.
'ME/CVS' heeft niets met ME te maken. ME is geen PAIS. Ja, hulp voor ME is dringend nodig; hulp voor CVS en post-covid is naar verhouding al ruim voorhanden. Maar deze demonstratie gaat die hulp dus niet opleveren, die zorgt alleen maar voor nog meer verwarring.
November 28, 2025 at 2:49 PM
'ME/CVS' heeft niets met ME te maken. ME is geen PAIS. Ja, hulp voor ME is dringend nodig; hulp voor CVS en post-covid is naar verhouding al ruim voorhanden. Maar deze demonstratie gaat die hulp dus niet opleveren, die zorgt alleen maar voor nog meer verwarring.
And we'll say it again: 'ME/CFS' is not ME. They are chasing a plantom.
November 27, 2025 at 7:44 AM
And we'll say it again: 'ME/CFS' is not ME. They are chasing a plantom.
Wel voor de mensen die nu niets hebben. Misschien toch even tellen hoeveel dat er zijn?
November 27, 2025 at 7:38 AM
Wel voor de mensen die nu niets hebben. Misschien toch even tellen hoeveel dat er zijn?
That would not be the severe patients. The severe patients are those with a chronic corona infection disease.
November 10, 2025 at 11:34 PM
That would not be the severe patients. The severe patients are those with a chronic corona infection disease.
But they won't know because they don't know what these patients have.
November 10, 2025 at 11:33 PM
But they won't know because they don't know what these patients have.
Excellent diagnostics for ME have been available for ages. There's no valid reason why they don't get used to select patients.
November 8, 2025 at 1:52 PM
Excellent diagnostics for ME have been available for ages. There's no valid reason why they don't get used to select patients.