Der Gerichtsmediziner fordert dringende Maßnahmen, um weitere Todesfälle durch ME zu verhindern

Fundamentally what the coroner is going to ask for in this Regulation 28 prevention of Future Deaths report when we see it is

1. Healthcare provision, beds, wards and specialists because it doesn’t currently exist.
2. Research into the disease so real treatments for the core of the disease can be found but also symptom relief drugs validated.
3. Guidance on how to treat the disease and especially severe ME to avoid deaths
4. Training for doctors so they know how to diagnose it and treat it.

Its going to require some fundamental changes because patients will often need to be treated at home and special quiet/dark beds and horizontal transport provided for hospital trips when necessary. The usual hospital treatment doesn’t just hurt ME patients it can kill them as it did in Maeve’s case.

This is what almost every other disease (and what every other disease should) gets as part of the NHS but its got a few unique challenges. We are talking about healthcare provision for what is now 750k – 1.2 million patients, we don’t know the true number because right now the NHS refuses to even count the number of patients! 85% of GP offices in the country have no patients diagnosed at all and its not because they don’t have any.

This impacts the entire NHS and its been too long coming.

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There’s a british-russian political philosopher on YouTube (Vlad Vexler) who I consider an extraordinary communicator, who happens to have ME and his videos on how to approach the NHS with a chronic auto-immune disorder are absolutely shocking. Essentially he dryly advises to pretend you have gone back in time to a medieval physician and assume no one you talk to will believe you have a real illness – so the strategy is to specify distinct symptoms (I experience paralysis, I can’t lower my heart rate, etc.) rather than ever mention the name of your illness (as this is highly likely to result in your symptoms being dismissed as all in your head).