Last year I came across a story about Laura Hillenbrand, the well-known author of Seabiscuit: An American Legend, which later was turned into the movie Seabiscuit. Laura has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since she was 19.
In her very moving essay A Sudden Illness (New Yorker, July 7, 2003) Laura Hillenbrand recalls the earliest manifestations of ME/CFS while
she was a student and the long process of receiving an accurate diagnosis.
This story made me wonder how many more celebrities there are out there suffering from ME/CFS. I started searching and it seems there are actually quite a number of well known individuals. Many of these people have been willing to raise awareness for this devastating illness by speaking out about how it has affected their lives and careers.
Below is a list of a few well-known individuals whose lives were affected by ME/CFS. For a more comprehensive list click the link at the bottom of this page.
•Florence Nightingale – English Nurse – Her illness began in 1896 after she returned from the Crimean War and spent years housebound, too fatigued to talk to more than one visitor at a time. Her birthday –May 12 1820- is celebrated as International ME/CFS and Fibromyalgia Awareness Day.
•Charles Darwin – English Naturalist- When he arrived back in England after travels to South America and Pacific Islands, he started suffering from what has been described as fatigue, pains, abdominal troubles, headaches, insomnia, anxiety, etc. Medical journals suggest that he may have had ME/CFS.
•Marie Curie – Polish-born French Physicist and Chemist- At the age of 15 she suffered from what has been described as fatigue, exhaustion and nervous troubles, after graduating with honours from high school. The illness left her feeling extremely lethargic and she spent a year recuperating in the Polish countryside.
• Cher – singer songwriter – In 1992, Cher took some time off from her career. She was reported as saying that she caught a virus, the Epstein Barr virus, which later turned out to be ME/CFS.
“Boy, it was devastating for me…I wasn’t able to work for almost three years,” the singer added.
• Pema Chödrön – Author & Tibetan Buddhist nun – In 1994, after experiencing years of undiagnosable symptoms, she was found to be suffering from Chronic Fatigue and Immune Dysfunction Syndrome. Her discomfort became a source of compassion, “a heartfelt connection with all those unknown people” suffering similarly or much more than her.
• Peter Marshall – The former world No 2 squash player was at his peak when hit by ME/CFS. He was given the choice between a £250,000 insurance payout or a comeback. He chose the latter and made it back into the world’s top ten.
• Michelle Akers – Former Olympic soccer player, who starred in the1991 and 1999 Women’s World Cup victory by the U.S. She is a member of the National Soccer Hall of Fame. In 1991, Michelle Akers was named the best woman soccer player in the world and had become the first woman player to have a paid endorsement.
After leading her team to victory for the first FIFA Women’s Soccer World Championship in China, she returned home completely exhausted. She rested. Two years after the initial symptoms began, Michelle collapsed during a game at the Olympic Sports Festival in San Antonio, Texas.
She was diagnosed with mononucleosis, then Epstein-Barr virus (EBV) and finally, in the spring of 1994, Chronic Fatigue Immune Deficiency Syndrome (CFIDS).
• Flea –Musician, Red Hot Chili Peppers – In 1993 he was diagnosed with ME/CFS.
• Stevie Nicks – Singer/ Songwriter, Fleetwood Mac – Diagnosed with ME/CFS in 1987.
For a more comprehensive list of well known personalities with ME/CFS, please click the link below: http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome
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Raising Awareness for ME/CFS 
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My wee bro Andrew aged 11 was diagnosed 3 yrs ago with ME. He’s the youngest person in Northern Ireland and England to be diagnosed. There has been hope for him with treatment in America, with a downfall of it costing £30,000. We are tryin our best to get him tis treatment, and a trust fund has been setup to help not only andrew receive treatment bt for others with tis terrible disease that has no cure. If you have any fundraising ideas or donations pls email me for info. If u check Facebook n search for Little Acorns you wil find out more.
Info : shineen925@gmail.com
Hi Danny,
So sorry to hear that your little brother has ME. I hope he is coping well. Treatment is indeed very expensive. I will post your message on my blog to help with your fundraising efforts.
Good luck!
Fatima
Thank you for posting this article. Also film director Blake Edwards, husband of Julie Andrews, suffered from ME/CFS.
Hi Cynthia,
Yes. Blake Edwards’ name appears in the Wikipedia list of people with ME/CFS. I did not know he’s Julie Andrews’ husband, though. Thanks for your comment.
Fatima
My 26 year old son has been, finally, diagnosed with CFS…can someone please tell us how he can get his life back. How do these people regain control of their lives? Are there medications? Are there lifestyle changes? I’m reading there is no cure and the prognosis is poor. But these celebrities seem to have been able to do better. What kind of doctor should he see? He was first diagnosed with vestibular neuronitis, then Epstein-Barr and Mono, and has now been told he has CFS but the doctor, an ENT, gave us no direction. Any comments would be appreciated. Thank you
Evelyn
Hi Evelyn,
You asked how your son can get his life back … He will be able to, eventually. But keep in mind that there is no cure for CFS right now. I too had a life before CFS and now I have a new life, after CFS. After the shock sank in- of realizing what I had- I made some major adjustments and now it’s all about setting limits and living within those limits.
Actually, your son’s quality of life depends on how serious his condition is. From what I’ve read, approximately 25% of people with CFS suffer from a very severe form of it and are either homebound or bedbound. The rest, approx 70%, is a little more functional and can have a good quality of life depending on how he/she is able to manage his/her symptoms.
A really good website that helped me understand my limits and this illness a little better is Bruce Campbell’s story: Recovery from Chronic Fatigue Syndrome ( http://www.recoveryfromcfs.org/ )
Good luck to your son on his journey to good health!
Fatima
Thank you, Fatima, for responding. A question I have is how you ended up with CFS. Did you begin with something else first? In my son’s case, it seems he has been diagnosed after battling a virus for 6 months and spiraling into CFS…that’s what the doctors have said. But I read everything I can and apparently the Epstein-Barr virus (which he has) also has a fatigue syndrome attached. I don’t suppose you know what kind of physician may specialize in these syndromes? Whatever you have that you can tell me would be appreciated. Thanks again. Evelyn
Hi Evelyn,
I also got CFS or ME after having battling a virus. My doctor kept telling me “It’s a virus, it’ll go away.” Many CFS sufferers have a similar story. I am a college teacher and most likely contracted it at my workplace. Many of my students- and a few co-workers- got ill that term, and two of my students actually got mono. I too have read about the connection between CFS and viruses like mono/Epstein-Barr.
As for physicians who specialize in CFS, below is a short list of well-known CFS specialists- assuming you live either in Canada or the U.S. I have also included a link to a database of CFS and FM doctors in 80 countries worldwide.
Good luck!
Fatima
Dr. Alison Bested, Toronto, ON- http://www.drbested.ca/index.php
Dr. Eleanor Stein, Calgary, AB-
http://eleanorsteinmd.ca/
Dr. Derek Enlander, New York, NY- http://www.enlander.com/
Dr. Nancy Klimas in Miami, FL- http://www.cfsclinic.com/index.html
Dr. Daniel Peterson, Incline Village, NV (a pionneer researcher and doctor): http://mecfs.wikkii.com/wiki/Dr.Daniel_Peterson
http://cfinitiative.org/lead-researchers/daniel-peterson/
Dr. Paul Cheney, Asheville, NC- (also a pionneer): http://www.cheneyclinic.com/
Doctor database (5974 doctors in 80 countries worldwide that specialize in helping people with CFS/ME or FM):
http://fmcfsme.com/doctor_database.php?c=Canada&s=Alberta&i=Calgary#doctor
I’ve had M.E/CFS for nearly 3 years now, and, i don’t know if anyone else feels this, but, im kinda happy that these celebrities, have m.e, yes it is unfortunate, but, it shows, if they can do it, so can we, there is always a light at the end of the tunnel.
Hi Rachel,
ME/CFS crosses all social and cultural boundaries, affects men and women of different racial, and economic backgrounds and of course, does not discriminate on the basis of celebrity status. And I agree, there is hope for us all. Thanks for visiting!
Best,
Fatima
Hi all I was told I had ME, i have been ill on and off for the past 6 years, I then came across a private clinic in Halifax that has helped I am on the road to recovery, it has not been easy and people have been sceptical, however I know what I feel and I am starting to get my life back which is amazing.
Please try this clinic I know it can help.
Conscious Health: 01422 363899 Email: info@health.co.uk
Hi Shezza,
Really happy to hear you’re on the mend. Thanks for the information on the clinic.
Cheers,
Fatima
Interesting read, some of those I knew about already. I have M.E. myself and have done since I was eleven back in 2000. I have recently started a forum for people, careers, friends and family of people suffering with Chronic Fatigue Syndrome, also known as M.E. It’s free to join, there’s only myself and three others so far but am trying to tell everyone on the internet about it. People on Twitter, Facebook, YourTube, Tumblr, Pinterest. Please help me spread the word so people like us don’t feel so alone and know there is somewhere they can come to talk to others like themselves. Thank you in advance.
Hi Emz,
I’d love to help spread the word about your forum. I believe the address is http://cfsme.freeforum.me.uk/
Thanks for sharing!
Fatima
Yes it is and thank you!
“PEOPLE ONLY KNOW; WHAT YOU LET THEM SEE”
FDA give CFS/ME patients treatment after decades
of suffering! Sign + Send = Simple! Thank you!
http://www.ipetitions.com/petition/ampligen/
Hi. My son was diagnosed in 2009 with CFS he was just 8 years old. He was recorded as the youngest patient diagnosed with CFS in England. He is now 12 and is condition is at its worst: since his flu jab actually in October 2012! He is in constant pain, doesn’t sleep has continual viral infections, now has a peanut allergy! He hasn’t been to school for 4 and half years now and is fed up with living. His bedroom is his whole world. I have found a protocol by a Dr Petrovic that may help so I am going to set up some fund-raising activities I think to help pay for the treatment. If anyone has any suggestions I would be very grateful. We are now desperate!
Hi Joy,
Really sorry to hear about your son.
All the best,
Fatima
Hello Joy,
I hate to see someone so young losing out on life, i feel for you and this young man. There are many CFS or ME sufferers who either got the FS after a flu shot, or had it before and gotten even worse after receiving a Flu shot. As you may guess I am a fellow CFS sufferer, about 20 yrs, since year 1993 but finally cured. I came a long way since then and studied Natural Medicine for 16 years just to cure myself….an entirely selfish endeavor if i may add….but it worked :). In a nutshell: I had HHV-6, Epstein Barr, CMV & Mycoplasma Bacterial infections, a horrible cocktail of infections that both drag your body down and attack your immune system.
I don’t have too much time to expalin all the details, but for example:
1- The flu shot may have transmitted to your son a virulent strain of Mycoplasma Bacteria [ such as Mycoplasma Pnuemonia] which frequently infects the laboratories that manufacture such anti-viral vaccines. You can ask for a PCR test to confirm the Mycoplasma diagnosis at a high quality testing laboratory.
How to cure this bacteria in 21 days: Purchase Klacid XL Antibiotic [ Clarithromycin] and take 2 x 500 mg tablets per day for 21 days. Its a high dose but if not taken at these high serum concentrations and for this period of time, the bacteria is only weakened, not eradicated. Only main important point is that whenever taking antibiotics make sure to drink fresh fruit or vetable juices and water during the day to flush out the Kidneys.
2- For the viral infections: EBV, CMV, HHV-6, again your son should make viral blood testing at a clinic specialised in Chronic Fatigue or ME patients. How do you eradicate and cure these very difficult strains of viruses: There is no majic bullet so please forget about any idea of a doctor prescribing him a magic pill. The child should be placed on an all-natural diet very high in fresh organic grown vegetables particularly: Cabbage, Red Beet, Broccoli, Onion, Tomato, Cold and Hot peppers, Koream Kimshi if available, hot vegetable soups twice x daily with Indian spices. Nuts and seeds of all types should form one meal daily also. Fresh lemon juice mixed with fresh Mint and Sage juice is another strong antiviral I used, two glasses per day, you can add pure honey for taste but not sugar. One meal a day can be of his favorite foods as long as you choose healthy versions.
3- Four Supplements are critically needed to kill the viruses directly [ by poisoning the virus at various stages of its lifespan] and by boosting the CFS patient’s immune system: ******* Colustrom is very critical as a supercharger of the immune system. An excellent quality version is sold by Kordells in New Zealand, but you can try other sources. ******** Transfer Factor is another supplement needed, take 6 capsules daily. ******** Red Algae Extract is another proven ant-viral, this is also needed. ******** Lauricidin, which is a US made extract taken from Cocunut oil and is highly antiviral.
4- Do one hour of suntanning daily at least to get Vitamin-D, and also purchase Vitamin-D-3 at GNC store 5000 IU size tablets, take two daily for six montths.
5- Sinus Problems encourage growth of viruses: Take your son to an Ear Nose Throat specialist who is also a Sinus Surgoen and ask him to make an MRI image of your son’s Sinus passages to search for blockages and structural deformities. If found, then perform Laproscopic surgery to open the sinus drainage holes, remove polyps and fix any deviated septum. Ask your son to perform salt water irrigation of his nasal passages twice daily. If you can, purchase a nose irrigation machine called SinuPulse Advanced Sinus System or from other manufacturers its low priced at USD. 79.00.
Improve your son’s digestion by purchasing non-alcoholic Digestive Bitters [which have Gentian herb as a base extract] liquid extracts to be taken before or after each meal
I know that this list sounds like a lot of work, but this program will not only treat but also cure your son when followed faithfully. best of luck to you and your son.
Abdulrahman
Thank you so much for taking the time to respond. I promise I will have a good look at all your suggestions. We are definitely not getting the flu jab this year!
Enlander treats every single patient exactly the same, like a production line, makes people that can hardly sit wait hours, that’s how I know he treats every one the same. I saw the nurses prepare the same exact shots and saw him dispense the same exact pills and bottles of salt water while I fell over in my chair each time for three hours waiting for my appointment. He also ignored completely treating M pneumonia and chlamidial pnemonia or Epstein Barr or Herpes as well as Hormonal probs. Granted i knew nothing then and looking back the blood work he did was, thorough with what i know now, I am astounded these were just noted but treatment was ignored intirely in favor of his extremely expensive cocktails and injections, which did nothing. Now I have chronic horrible sinus infections on top of pain so bad in my leg i can hardly lay except one way and walking is difficult…am basically bed bound or just st staring at tv except for going to the doc or getting food or out once a few months. Just saying talk with lots of other patients who have recovered (and not just ones a doctor has on their website) before you spend your life savings trying to help your kid.