Living with severe ME/CFS

Thank you again to everyone who has signed this petition and  continues to support it.

My daughter continues to suffer at the severest end of ME/CFS existing in bed in a darkened quiet room unable to have visitors and be largely removed from her family. In a BBC interview below Beth Dobbin an athlete has shared her experiences of living with severe ME/CFS feeling "you are a few days from death." Thank you to Beth for bravely speaking out:

https://www.bbc.co.uk/sport/athletics/articles/crd6dj26v4e4o

It has also been shown on ThereforME online community voices with comments from Dr Shepherd who advises ME Association:

https://emea01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fsubstack.com%2Fredirect%2F2%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.iLq6YZfNTNusv8BihR1VU1d9ZBxcK9yVL3gnUonUehE%3F&data=05%7C02%7C%7Ca7211cfd8dcc44c9a82a08df2e81096a%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C639280803883708174%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=fvuyEgYS4LBfeNLejKLyzAbXlN%2Bn3xtmuoesV0YuQzE%3D&reserved=0