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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Messages
69
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

Senior Member
Messages
792
Location
York, England
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?
 

lenora

Senior Member
Messages
4,926
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.....!
 
Messages
69
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

Senior Member
Messages
13,394
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.