Thread by @robwriting

An update as I never properly followed this up: My wife, Marjolein, won her benefits back after losing them last year. With amazing support from a kickass lawyer (who should wear a cape) we challenged @UWVnl & won. The judge found their medical assessment to be "unlawful". #mecfs

https://twitter.com/robwriting/status/1355117376308715520

And in July 2021, her basic sick pay benefits were restored. However, we decided we don't want to go through this humiliating/ exhausting/ inhumane process again & end up in court every year. We can't do it. So, we appealed for longer term support & go to court in May. Again.

My wife left home three times last year. Her life & its geography is now basically 2 rooms. I directly link the uncertainty, anxiety & stress of this sick pay benefits process to her health worsening. Let me put that another way: the Dutch govt & @UWVnl is harming her health.

When I posted about this last year I was learning about #MECFS & I now realise that this isn't just our fight. There is a massive constellation of chronic conditions all with patients who have similar shared experiences to us, #chroniclyme #fibromyalgia #POTS #LongCovid & more.

In search of answers, treatments & help many get the same institutional shakedown as we have had, whether from govt disability assessors like @UWVnl and its insurance doctors or from employers. You are made to feel like a cheat or a scammer. When u just want & need support.

This shouldn't need saying: patients don't belong in court, or in tribunals. It's a cowardly system that raises the bar for #MECFS patients to prove their condition is physically disabling, knowing full well that there are no diagnostic tests or treatments.

It harms people. It makes #MECFS patients feel like they aren't doing enough to get better & ignores how desperately they miss - and hugely pine for - their healthy lives. The days, weeks and months we have spent fighting you is sapping.

The @UWVnl has gone to great lengths to undermine the very few ME specialists in NL who can vouch that this condition is disabling. They ignore or nullify their tests, cast doubt on their research & force patients to look elsewhere for legitimacy. There are not many options.

No words will change this status quo in the Netherlands. Only action. Patients are still being pushed into court every day to beg for help during this pandemic. It is shocking & it is wrong. Those in positions of power have a duty of care. Stop talking & do something!