Kalliope
Senior Member (Voting Rights)
Description:
In this episode, Dr. Nina Muirhead, an Oxford-educated dermatologic surgeon and an ME patient, talks frankly with Llewellyn King about the diagnosis hole she fell into in Britain, how she coped with her deteriorated health, her wrenching private life (having to stay away from her two young children), and her demanding medical practice.
Her personal experience with ME led to her development of an online learning module for doctors, based on 10 ME patients' cases, “tackling some of the most common misperceptions of the disease.” ME patients, she says, "have a wealth of knowledge.
We are one of the best-educated patient groups there is." Dr. Muirhead says doctors and researchers on Long Covid “should stand on the shoulders of their peers, and learn from the ME/CFS research done today.”
She is a member of Forward-ME, the British ME/CFS advocacy group. Considering the cluster outbreaks of ME, Dr. Muirhead said there is concern about the disease "being passed on through patients giving blood -- passed on through plasma," and that there may be some environmental or genetic component.
There is where her ME story takes a terrible twist: one of her grandmothers, who was diagnosed as having Multiple Sclerosis and “hysteria” in the 1950s, died of ME at the age of 42, in a British mental asylum “with bedsores.”
Dr. Muirhead says without bitterness and with wisdom, “There were five months of hospital notes from the 1950s. My mother witnessed my getting the same illness. …. The same ignorance we saw in the 1950s is still being seen today.”
In this episode, Dr. Nina Muirhead, an Oxford-educated dermatologic surgeon and an ME patient, talks frankly with Llewellyn King about the diagnosis hole she fell into in Britain, how she coped with her deteriorated health, her wrenching private life (having to stay away from her two young children), and her demanding medical practice.
Her personal experience with ME led to her development of an online learning module for doctors, based on 10 ME patients' cases, “tackling some of the most common misperceptions of the disease.” ME patients, she says, "have a wealth of knowledge.
We are one of the best-educated patient groups there is." Dr. Muirhead says doctors and researchers on Long Covid “should stand on the shoulders of their peers, and learn from the ME/CFS research done today.”
She is a member of Forward-ME, the British ME/CFS advocacy group. Considering the cluster outbreaks of ME, Dr. Muirhead said there is concern about the disease "being passed on through patients giving blood -- passed on through plasma," and that there may be some environmental or genetic component.
There is where her ME story takes a terrible twist: one of her grandmothers, who was diagnosed as having Multiple Sclerosis and “hysteria” in the 1950s, died of ME at the age of 42, in a British mental asylum “with bedsores.”
Dr. Muirhead says without bitterness and with wisdom, “There were five months of hospital notes from the 1950s. My mother witnessed my getting the same illness. …. The same ignorance we saw in the 1950s is still being seen today.”
