Ik krijg straks euthanasie vanwege ernstige ME, na een al 14 jaar durende strijd met de ziekte. Vaarwel 💖

Vanmiddag hebben Lou, Lisette en Imre de Enquete kinderen en ME en het Zwartboek CGT/GET aangeboden aan @JulianBushoff in de gebouw van de Tweede Kamer. Het gesprek heeft ongeveer 45 min geduurd en we waren blij dat Julian bereid was te luisteren naar ons verhaal.

Nieuwe video! Met veel dank aan het journalistieke werk van @Zurhake (@NOS), @AnilvanderZee en Anja de Loos. Nederland faalt op preventie én behandeling van chronische post-infectieziekte. Amper druk op vaccineren, veel druk op gevaarlijke therapie.

My father-in-law is a builder. He is insanely gifted. We were in a cathedral together years ago and I asked him what it would cost to build it today. I will never forget his answer… “We can’t, we don’t know how to do it.”

1) Very preliminary data but Dutch researchers report that antibodies of Long Covid patients caused more cultured muscles cells to die.

1) In a new pre-print, the lab of Bhupesh Prusty reports that antibodies (IgG) from ME/CFS patients cause mitochondrial fragmentation in endothelial cells. This was not seen in antibodies from MS patients or healthy controls.

Top associated genes in #pwME according to #DecodeME in their role Chromosome: 1q25.1 Gene(s): RABGAP1L Proposed Role: Intracellular response to infection Chromosome: 6p22.2 Gene(s): BTN2A2 Proposed Role: T-cell mediated immunity Chromosome: 6q16.1 Gene(s): FBXL4

"This smothering even extends to advocacy by some organisations representing #ME patients, some of which do not actively represent those who are severely affected. One charity, when asked about this, stated to me that they didn’t want to scare people" @LongCovidAdvoc #pwME

The single most important question in all of science: "What if I'm wrong?"

💔 Warum versagen wir so? Sarah stirbt - obwohl sie leben will. Weil es keine einzige Therapie und skandalös wenig medizin. Versorgung und Forschung gibt. Eine humanitäre Katastrophe. Historisches Versagen der Medizin. Aber auch von Politik, Ethik, Zivilgesellschaft. #MECFS

Doctors as Patients (with subtitles) https://t.co/2PkW8SPke6 via @YouTube

Hubble’s photo for reference. Hubble is still way better, but the gap has been closed significantly in the last 10 years with advancements in backyard astronomy.

The reality of very severe #MECFS : No treatment, no practical help or care, too ill for euthanasia if unable to talk much/at all. Left to slowly starve and dehydrate, without palliative care.

I feel like I’ve seen this headline pop up every month for the past 14 years I’ve been sick. How much more confirmation do we need?

1) These markers did not change according to how active the patients were, consistent with the view that graded exercise therapy, which aims to gradually increase activity levels, is unlikely to be helpful. "Dr Sjoerd Beentjes, of the university’s School of Mathematics, said:

In Hongarije is homoseksualiteit (gelukkig) gewoon legaal. Ze zijn slechts streng met bepaalde openbare uitingen, niet het einde van de wereld. Ga anders lekker actie voeren in Pakistan of Iran.

Zorgcollega's roepen kinderartsen tot de orde over uitputtingsziekte ME/CVS

Does walking more make you live longer? Or do healthy people naturally both walk more and also live longer?

ME is a neurological illness that affects tens of millions of people worldwide. Severe cases may be bedridden, unable to care for their basic needs, and sensitive to sound, light, and touch. Despite its severe nature, patients are often dismissed. #MEAwarenessHour

@useless_priest And the 20th century. ME was being taken seriously by some researchers as a physical illness in the 1980s when I got ill. Wessely’s takeover stopped funding and made anyone saying it had physical causes pariahs in the medical and research fields.