UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

[V.R.T.]

In Germany there was also a football team whose fans showed pro MECFS advocacy messages during games.

Something like this would boost visibility and public awareness.

 

[BrightCandle]

A senior politician's child, spouse or sibling getting very severe ME/CFS.

The more you learn a researchers story the more you realise their relationship with the disease is personal and a close relationship has ME/CFS. It is what worked in Germany recently to get funding, its why Sajid Javid did what he did to push the DHSC process to start. They need to be in the right position (Head of health) for it to work so far but I guess a Prime minister would likely set policy too but most other positions would not help.

Given the prevalence of the disease the chance a minister for health has a close personal relationship with the disease is quite small, something like 1 in 25 to 1 in 50. Then there is the chance they accept the disease is real as a cofounding factor. We get a new health minister every few years on average. So ~50-100 years from Savid to the next one on average but with the prime minister as a second potential source maybe 25-50 ish.

 

[OrganicChilli]

In Germany there was also a football team whose fans showed pro MECFS advocacy messages during games.

Something like this would boost visibility and public awareness.

Empty Stands are collaborating with English teams, too.

Empty Stands – Fans with ME/CFS, Long COVID & Post-Vac

emptystands.me