High Net Worth Individuals with ME/CFS/LC connection?

[crussher]

If, in a hypothetical scenario , there were a drug that could dramatically improve QoL for ME/CFS patients but funding to trial it was hard to come by from governments/politicians, who would you approach?

Put another way, do you know of any potentially very wealthy (multi, multi-millionaire / billionaire) individuals with a personal connection to ME/CFS, LC, POTS, etc? Perhaps who have the illness themselves, have done charity work related to it or have a family member who is affected by it?

I’m aware of Justin Bieber (who has chronic Lyme) and also John Caudwell - a UK billionaire who has set up a charity for Lyme disease research (https://caudwelllyme.com).

Does anyone else come to mind?

Thanks very much.

 

[Treeman]

Recently the UK conservative MP Sajid Khan said he had a family member who did. He then went on to focus further attention to the illness from a strategic point as he was health minister. But shortly after left the post. I think there is still the group ongoing but not sure were they are?

 

[Treeman]

https://www.gov.uk/government/news/government-announces-new-plan-to-help-those-impacted-by-mecfs

Government announces new plan to help those impacted by ME/CFS

Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with myalgic encephalomyelitis/chronic fatigue syndrome.

 

[lenora]

A number of years ago it was widely rumored that Cher had ME. There are also other stars, of course, and we did raise $ to help with research. I know she has had a show since that time, but what her condition is....I couldn't tell you.

I wish I could provide you with other names, but.....!

 

[crussher]

https://www.gov.uk/government/news/government-announces-new-plan-to-help-those-impacted-by-mecfs

Government announces new plan to help those impacted by ME/CFS

Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with myalgic encephalomyelitis/chronic fatigue syndrome.

Thanks so much. I knew about Sajid's efforts - indeed I found them very encouraging - but didn't know they might have been motivated by a family member's struggles with the illness.

 

[Rufous McKinney]

I know somebody who was once the nanny for somebody famous's offspring.

Ideally somebody famous and well, but they have a family member or loved one, afflicted.