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11 Celebrities with ME/CFS

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Of the 17 to 24 million people worldwide who have ME/CFS (chronic fatigue syndrome), a number are bound to be celebrities. Some have made their struggles with ME/CFS known to the public, while others – usually for the sake of their careers – have preferred to keep quiet.

Here are 11 contemporary celebrities with ME/CFS who have stepped forward and not only spoken about the illness, but raised funds for research, started forums, written books, made films, and done their best to dispel the notion that ME/CFS is “all in their heads.”

We applaud the efforts of these courageous individuals.

11 Celebrities with ME/CFS

Laura Hillenbrand, Author – “Living vicariously”

Laura Hillenbrand is the author of the best-selling books Seabiscuit and Unbroken. She contracted ME/CFS while she was a student at Kenyon College in Gambier, Ohio. (She was forced to leave school before graduation.) Hillenbrand described the onset and early years of her illness in an essay, A Sudden Illness, published in the New Yorker. Hillenbrand freely acknowledged the irony of writing about feats of physical prowess while being unable to leave her house. In an interview by the Washington Post, Hillenbrand said, “I’m looking for a way out of here. I can’t have it physically, so I’m going to have it intellectually. It was a beautiful thing to ride Seabiscuit in my imagination. And it’s just fantastic to be there alongside Louie as he’s breaking the NCAA mile record. People at these vigorous moments in their lives – it’s my way of living vicariously.”

Keith Jarrett, Musician – “Playing the heart of things”

Keith Jarrett is one of America’s most famed jazz musicians. Although he is best known as a pianist, he also plays harpsichord, clavichord, organ, soprano saxophone, drums, and a number of other instruments. Jarrett also composes classical music, and in 2004, was awarded the Léonie Sonning Music Prize, an award which has been given to only one other jazz musician – Miles Davis. Jarrett contracted ME/CFS in 1996, and for a few years he could not even listen to music, let alone play it. In an interview with NPR’s Terry Gross, Jarrett said, “I didn’t know if I would ever play again. So when I was able to sit at the piano without being sick and play a little bit, there was a way of dealing with economy that is way past anything I can imagine doing when I’m well. It’s hard to describe. It’s almost like the disease made it possible to deal with the skeleton instead of the surface, you know – just the heart of things, because there was no energy for more than that.”

Michelle Akers, Athlete – “Fought to the very end”

Michelle Akers is a former Olympic soccer star who played in over 130 international matches spanning15 years. She played in the 1991 and 1999 Women’s World Cup for the United States, and won the Golden Boot as the top scorer in the 1991 tournament. She is a member of the National Soccer Hall of Fame and was named FIFA Female Player of the Century. Akers played until ME/CFS symptoms left her “at the end – physically and mentally – with a body ready for a M*A*S*H unit … but,” she said, “ I have huge peace in knowing I fought to the very end and have nothing else to give.” (Soccer Times)

Blake Edwards, Film Producer/Director/Screenwriter – “Comedy saved me”

Blake Edwards started his career as an actor in silent films. He is best known for the Pink Panther movie series, Breakfast at Tiffany’s, and Days of Wine and Roses. In 2004, he received an Honorary Academy Award in recognition of his writing and directing. Edwards described his 15-year struggle with ME/CFS in the documentary, I Remember Me (2000). In the film, he described the onset of ME/CFS as the flu that never went away. “What the hell is this?” Edwards asked. “The desperation was enormous.” Edwards eventually turned to writing. “[comedy] saved me from this damn thing.” Blake Edwards died of complications of pneumonia on December 15, 2010.

Randy Newman, Composer/Singer/Pianist – “The worst part is in your brain”

Randy Newman has earned 17 Oscar nominations, and won an Oscar in 2002 for the song “If I Didn’t Have You” from Monster’s, Inc. He is best known for his film scores, which include Ragtime, Awakenings, The Natural, James and the Giant Peach, Cats Don’t Dance, Meet the Parents, Cold Turkey, Seabiscuit and The Princess and the Frog. Newman contracted ME/CFS in the 1980s. “I couldn’t get up a couple of steps without getting out of breath,” he said, in a People interview. “But the worst part is in your brain. You just can’t think of anything that you look forward to doing. Nothing looks good.”

Mama Chill, Rap Artist – “Focusing on what I can do”

Mama Chill (born Stacy Hart) is a British rap artist influenced by “80’s Old school American Rap/Hip hop with every other genre mixed in.” She has composed songs about ME, and donates all profits from her “Runnin on Empty” store to the British charity, Invest in ME. In an interview with the Watford Observer, she talks about her 22-year struggle with ME. “I am limited by my illness. I can’t gig and I get exhausted going to the studio. But I try to focus on what I can do, rather than what I can’t,” she said. “I wrote my songs when I was bed bound. I thought if I’m going to come back from my illness, I’m going to come back with rap music, something that I always wanted to do.”

Cher, Actress/Singer – “Devastating for me”

Cher (born Cherilyn Sarkisian) is an American singer and actress nicknamed the “Goddess of Pop.” Cher became famous in the 1960s as half of the duo Sonny & Cher. Later she proved her acting talent in Moonstruck, Mask, Suspect, and Silkwood. Cher has won an Academy Award, a Grammy Award, an Emmy Award, three Golden Globe Awards, and the Best Actress Award at the Cannes Film Festival. Cher was diagnosed with CEBV (chronic Epstein-Barr virus) and reputedly went to Brussels, Belgium for treatment and recovered. When asked in a BBC interview if she thought the illness was psychosomatic, Cher replied, “My experience was that it was really a physical illness — but it does make you depressed as well … Boy, it was devastating for me.”

John Rutter, Composer – “This was real”

John Rutter is a British composer of choral works. His compositions include Christmas carols, anthems, and larger works such as Gloria, Requiem, Magnificat and Mass for the Children. NBC’s Today Show called him “the world’s greatest living composer and conductor of choral music.” From 1985 to 1992, Rutter suffered from severe ME and stopped taking on commissions, as he could not meet deadlines. Rutter has been outspoken about his experience with ME, and does not hesitate to write letters countering the notion that the disease is “all in your head.” In a letter to the Daily Mail he says, “Like malaria, it cycles on and off, and after an attack, which might last a few days, I felt terrible. I would have a week or two feeling OK, then the cycle would begin again. I’m a professional musician, and we tend not to advertise our ailments any more than journalists do, but this was real.”

Michael Crawford, Actor/Singer – “Smelling the Roses”

British actor Michael Crawford has received great critical acclaim and won numerous awards during his career, which covers radio, television, film, and stagework on both London’s West End and on Broadway in New York City. He is best known for playing the hapless Frank Spencer in the popular 1970s British sitcom, Some Mothers Do ‘Ave ‘Em. He played the title role in The Phantom of the Opera. Crawford contracted ME in 2004. “I’d be totally exhausted by mid-afternoon, and I could barely climb the stairs at home, ” he said. “I knew something was wrong, but I had no idea what. What I thought had been flu turned into a physical meltdown. I went for all sorts of brain and body scans until ME was finally diagnosed.” After seven years, Crawford returned to the stage. “If anyone had told me one day I’d be back in London’s West End I wouldn’t have thought it possible. I thought my career had come to an end.” Crawford attributes his recovery to his move to New Zealand. “I decided to relocate from Britain to get healthy and smell the roses.”

Leigh Hatcher, Journalist/Author – “Not crazy”

Leigh Hatcher is one of Australia’s best-known television journalists. He was bureau chief for the Macquarie Radio Network in the Canberra Press Gallery, and has worked at various radio stations including 2CA in Canberra and 5DN in Adelaide. He was forced out of work for more than two years after his ME/CFS diagnosis. Hatcher wrote about the experience in his best-selling book, I’m Not Crazy, I’m Just A Little Unwell. He also founded the online forum, Not Crazy, which was intended to help ME/CFS sufferers to come together to share and encourage each other. “People [with ME],” Hatcher says, “are not crazy.”

Jennifer Brea, Filmmaker/Activist – “I can’t tell you how helpless it feels”

Jennifer Brea’s story is a little different than other celebrities with ME/CFS in that she was not a celebrity prior to contracting the disease. Instead, her celebrity status came about because of ME/CFS.

With her own dreams sidelined and doctors telling her it was “all in her head,” Brea felt compelled to document her experiences and those of others with ME/CFS in the form of a documentary film to be shared with the world. In an interview with the LA Times, Brea explained, “I can’t tell you how helpless it feels to not be able to move and cry for help. Those are the moments where you turn on the camera, because on top of everything, if this moment is unseen, this is just stupid, useless pain and it has no meaning.” Brea’s film, Unrest, has been widely acclaimed. In 2017, it received the Sundance Film Festival’s US Documentary Special Jury Award for Editing and made the shortlist for an Academy Award for Best Documentary Feature. It aired on PBS’s Independent Lens in early 2018. Amazingly, Brea produced and directed most of the film from her bed.

This article was first published on ProHealth.com on July 16, 2014 and was updated on April 12, 2019.

Erica Verrillo is the author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. She founded the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society, a (501)(c)(3) national nonprofit in 2016. She has been ill with ME for twenty-seven years. Please feel free to visit the AMMES website at https://ammes.org/

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14 thoughts on “11 Celebrities with ME/CFS”

  1. joanambers says:

    Dear Fellow CFS/ME-ers,
    I’m brand new, just discovered “what I have” yesterday while searching something else.
    I feel happy to see what’s wrong, and that it’s not in my head(altho I feel some of it DOES have to do w/my mental condition.)I’m a 10 year chemo-for breast cancer survivor, and am still having “chemo-brain”–only it’s getting worse, not better.My memory, mental retention, and cognition are for the BIRDS.
    I completely feel that my condition has to do with a serious life change–I lost all my $ in the crash of 08.Been losing more&more as I paid my rent.And now live in a senior HUD-supported building for seniors.Uh–talk about depression.I can barely get out of bed each morning, and drag myself out later and later.Which makes life hard since HUD is CONSTANTLY performing INSPECTIONS.Nightmare! “You must be dressed in street clothes”(Achtung?)
    As I waited for my place in here, I started being sick: SUPREME fatigue.For “no reason.” And as I could no longer take my half-mile walk for my exercize, I grew weaker & weaker.I have to walk on a cane, my balance is bad.Even my appetite, usually TEEN-AGED, is poor.Too weak to scarf food away as I did.And the buying, preparing, cleaning up is more&more like work.
    I have studied many alternative suppliments, and take numerous ones, especially anti-oxidents, and global healers like turmeric.
    Right now I’ve been having severe allergies since March.”Tree pollen”?Hmph.I dont think it goes on thru summer.Around 3AM, after I’ve completed my day, I sit and read before sleep.And the sneezing starts.It goes on, loudly and uncomfortably, for about 15 minutes.And there is PLENTY of coughing& hacking from post-nasal drip.
    I’m starting to look at Pinocchio, my sweet cat, w/suspicion.And this cant be, because since my children grew up, my companion animals have been my best pals and comfort.Dogs they were, but in HERE dogs must be no more than 25 lbs.(Pinoch =36 lbs himself.My Labs were..much bigger.)
    Not only are my pets theraputic for me, but having a dog to walk is…very good for the health in itself.
    I’m an artist, and great reader, and enjoy solitude very much.As long as I have a 4-footed pal to converse with.
    The solitude in here is…very poor quality.It sounds a lot like an asylum going on outside my door, especially mornings.Which is big reason I’ve become more nocturnal than ever.
    I was a “perfectly normal” girl, good in school, bright, healthy.I had college, married, had 2 kids, a happy, useful, very self-sufficient life.It’s a good thing was not wealthy because now I know how to survive poor.
    After my chemo, things started getting bad.Chemo brain leaves one very STUPID, w/great memory lapses.I have lots of joint pain, where I had some gently arthritis before, AFTER I was pretty RIDDLED-not just my knee, but most of my joints, and my arms&shoulders from side-sleeping.So there I was growing more&more vapid, more&more pained, more & m ore fatigued.The chemo was a sort which ix KNOWN to ruin heart function.So hello edema, and life in Crocs.Also worse & worse.
    Next came the loss of my savings and the move here.I brought a lot of my things myself & became so exhausted I just couldnt do any more.I still cry for things I just walked away from(my KNITTING NEEDLES, hand-carved!My old dolls that my father brought me from Europe after WW2, and etc)And I still go to my huge closets to look for something I keep in there, to realize all that is gone-in my OTHER(real) life.
    All this makes me very very tired(depression), and makes my back & joints hurt.My FINGERS drop things, just open unbidden.It kills my back just to pick up Pinoch’s bowl.

    And the fear & nervousness of my situation gave me IBS.I felt sure that after having diarrhea for many months, I was very short of nutriants.I lived on Immodium, the only med I took.It let me keep my food, but after some time totally dried me up.I felt I was dying of thirst always.

    And each “morning” when I woke up, I truely felt I was sick & dying(and would rather than face another day here.)I went from a very healthy, happy person w/a touch of arthritis, to a crippled, miserable, exhausted old woman.

    Since having cancer, I refused ever to eat meat or dairy that isnt organic.I shun GMO food.I (didnt) eat sugar, altho now I crave ice cream.I drink a good amount of water-need it to wash all these suppliments down.
    I do VERY badly if I dont get 8 hours sleep.My sleep is of poor quality-bad dreams, pain..
    If anyone cares to discuss herbal suppliments, I’d love to.If anyone has any advice, I’d love to read it.I have NO IDEA how to manage this sickness and would welcome hearing from you.
    I have a very wonderful doctor, who HEARS and CARES and doesnt force me to take meds or psychotropics.(I havent seen her for over a year–too “weak” to go there.)All my bloodwork is always very good.I have no idea WHY-I sure feel ANYTHING but healthy.If only there was a REASON, something that could be treated…
    Thank you, it is VERY good to be among you.I wish everyone health and happiness(or maybe they’re one&the same.)

    1. spiketheartist says:

      I found this article extremely annoying.
      1.Several of these people claim that they had CFS/ME and recovered. Recovery after having this disease for more than 5 years is so very unusual that it raises doubts that what they had was indeed CFS/ME. Even if they did, their stories raise false hopes in the majority of people who have CFS/ME and false expectations in the rest of the population.
      2.All of these people were successful enough to afford treatments that are not available to the rest of us. Michelle Akers, for whom I have the greatest respect, managed to keep on playing soccer because she could get intravenous fluids in the clubhouse during breaks in the action. The only way I can get even a saline drip is by waiting until I am in such bad shape that someone has to drive me to an emergency room. I can’t afford experimental drugs and consider myself lucky to be able to afford essential pharmaceutical and natural remedies – many others with this disease cannot.
      Celebrities can afford to hire people to handle cleaning their house, keeping them fed nutritiously, paying their bills, etc. These mundane but necessary tasks take a huge toll on the energy of normal people with CFS/ME who cannot afford that level of care.
      3.Celebrities walk into a doctor’s office and get attention paid to them. Normal people walk into a doctor’s office complaining of fatigue and get told that reduced energy is a normal effect of aging, or are advised to get some outside interests to take our mind off our self-preoccupation, etc. None of them had to wait 10 or more years before getting a correct diagnosis as so many of the rest of us do.
      4. Some of these people are not very well known, but some are. They have been blessed enough to have rewarding careers that they can pursue from bed or have recovered sufficiently to have a halfway normal life or at least have had a very rewarding life before getting sick. WHY THE HELL DO WE NOT HEAR MORE FROM THEM AS ADVOCATES FOR RESEARCH AND EDUCATION FOR CFS/ME SO MORE OF US MIGHT RECOVER SOMEWHAT TOO?
      These days, if one thinks of Parkinson’s Disease, Michael J. Fox comes to mind immediately. Why is that not true of CFS/ME and someone like CHER, for example?

    2. UPSman54 says:

      I must say I pretty much agree with all the points you made with respect to the celebrities. Though I’ve never wished this disease on anyone – but, if you’re nationally, or worldly, and you’re at a point where you’re not taxed economically you should speak out about this horrible disease.

      I get Google News Alerts emailed to me on a daily basis and it seems that at least every 2 months there is a soccer player being diagnosed, rested, and back on the field all too soon. With that said – I do not include soccer players that seem to always get the disease diagnosed and after less than a year they’re back and able to play. To me that doesn’t qualify. People that recover from this disease in a relatively short timeframe I would think they were missed diagnosed.

      Frustrated – oh yeah! I just turned 60 a few weeks ago and I’ve had this disease for the past 16 years. What really gripes me is I read that it is estimated that CFS and HIV afflict around the same number of people – yet one of the two gets 300 times more research dollars that the other. I’ll leave you to guess which one falls on the short end.

      So hopes for a cure in my lifetime are all but gone. This is supposed to be my “retirement” years – yet I’m left with a body that gets worse every day, and a mind whose capacity keeps slipping right along with it.

      So please if you have a “big microphone” in front of your face all the time – speak out. You may be able to cope much better than most with your popularity/prosperity – but there are a whole slew of others out there truly suffering and probably desperate.

      Other than the word “annoying” in the title – you’ve outlined the thoughts of many I’m sure. And though I don’t feel “annoyed” at anyone who is afflicted with this nasty illness – everyone has their own comfort level with speaking out about their illness.

      And me personally, I dread even making phone calls that need to be made and I probably shouldn’t have even wrote this response as I’m certain I used up far too much energy in doing so. It’s just a shame NOBODY takes ownership of this disease for some reason.

    3. IVANDESANTIS says:

      …AGREED; and I’m “sickntired” of seeing the words …so n so says”it’s not in your head”; This has been proven so a long time ago….repeating it is in itself INSULTING!

    4. phone says:

      I had my doctor write a letter saying that I needed my dog for my health and well being. Now, I actually have a service dog who is a seizure alert dog. Now, no one can question. Of course, you can’t just say your dog is a Service Dog, it really needs to be one. Hope this helps.

    5. mschutz says:

      Please help us!!! All of the people who live with these dibilitating illnesses desperately need a well known spokes person. The CDC allotted ZERO dollars for 2014 for research!!!
      We need to have our voices heard. Please speak out to inform the public how devestating these illnesses are and help us raise money for research. Thank you all.
      Myra Schutz mschutz@bellsouth.net

    6. IVANDESANTIS says:

      dear friend; your letter brought me to tears (altho this is not too difficult)…living with this MONSTER for over 30yrs and I really cant add anything useful, except that morphine does work on the PAIN; Side effect is constipation; and this may actually be a plus for you; Goes without saying that I do not eat red meat ;I take supplements I need; and I keep searching for “THE CURE”…I shared a following with a Joan on twitter 2 yrs ago , but she gave up posting….perhaps it was you…oh, yes….my dogs n cats are a blessing and the best medicine for my sanity ; living so intimately with my “critters” I am amazed at their intelligence,and their ability to demonstrate compassion, and yes, concern and even LOVE…..HUMANITY in general is in ignorance of the creatures we share this planet with; and continues to exploit and torture….or ignore and condone through indifference….the abuse.I do not think I would have reached this level of compassion or “understanding” of other “LIVES” were it not for my own personal suffering this disease has wrought….perhaps the only “plus” M.E.(CFS) has delivered. I do not pray, because I stopped “believing”, but I keep hoping for a cure.You are in my thoughts , my friend.

    7. i-want-to-help-my-dad says:

      i so applaude your comment of celebs could be better advocate to helping out other m.e. sufferers who are not in a position financially to help make their lives easier to cope with , wether it be the special medical costly treatments down to paying for someone to come help care of everyday ordinary tasks we take for granted , exactly as what you described above with you comments. you my friend are an excellent advocate for all m.e. sufferers.
      I am so trying and in the very early stages at the moment of trying to think of idea’s in which I myself can raise money for my dad to have lipo suction… your probably thinking what !!!! and no it would not be to look cosmetically appealing but for none other than shear health reasons, and to hopefully aid in a reduction of severity in pain he endures 24/7. My dad, the kindess soul ive ever met who over his lifetime would give anyone, anykind of help, not just especially if they were in desperate need but if he heard of someones problem or misfortune even if he personally didn’t know them, he would always try think of a way no matter how little or large the help he could offer them and give it even to a stranger and provide that help sincerely from the heart. my dad was so sincere in helping others out he would do it even when he would unwell himself , he was selfless and always has put others needs , hopes , happiness and dreams before his own. my dad only got diagnosed say 8yrs ago but believe from knowing what we know now he’s had this illness for around 30yrs… stuggling undiagnosed…. with no support. which is why I am wanting to raise money to hopefully help him for all his good deeds he’s given to others his whole life, so ive thought it through and was struggling with ideas for how to raise the thousands of pounds needed for the much needed operation that could so help transform his quality of life he so whole heartedly deserves…
      he is a severe m.e. sufferer with very little time out of bed or his room on a whole due to his crippling physical and his deteriatingly state of mental health, as over the years the m.e. illness, effects the muscles , making you feel like you’ve been attacked by a mob daily…not sleeping well…making everyday living a struggle physically and then on top of that emotionally as you know what your shit life is going to be like from the minute you wake till the minute you eventually drift off to sleep…its really not a life at all, and you so want to try to exercise and or even go for a wee walk and that’s the very least you would love to be able to do , nevermind being active like you once were , but you know the strain and exhaustion that comes from just getting out of bed or trying to get dressed or walking to use the bathroom is like someone who’s just ran a marathon and their body is screaming at them to stop… I cant move another muscle, and knowing you have too shower or bath is a mammoth task due to the amount of time and shear effort it takes to keep using the arms and shoulders to wash everywhere when their so so weak along with and the length of time you have to stand to make sure your clean , because standing is so hurtfull and exhausting , everytime your standing you feel im going to end up collapsing the now cause your muscles cant take the weight even if you weren’t over weight to which sadly my dad is now severely overweight with not being able to exercise…for my dad and other m.e. sufferers its like their bodies are in shutting down mode … their body strength has wasted away and that even after rest they feel no better, so even if you were mentally coping which you don’t because you know your consistently fighting with yourself just to get up off the bed, as known sufferers would understand. which inturn causes another problem for any sufferer including my dad that overweight health risk factor, he now has heart disease and has alredy had endures painfull and frightening angina attacks to which the medication prescribed to help manage it comes with its side effects of the severest nightmares you could ever relate too, between 3 and 6 times a night, after one really bad dream im left feeling exhausted as it felt so real , cant imagine even trying to coping with that every night along with everything else he is going through…but yes he’s got a choice , take the medication to help try a prevent attacks and have no nightmares or don’t take it and run the risk of having a major heart attack…end of.
      you know to look at my dad , I know people would assume he is lazy, eats a terrible uncontrolled diet and must be in the pub a lot , just by looking at his physique, but I can tell you everyone of these 3 assumptions could be more wrong… yes he drank alcohol in the past and barely drinks alcohol 3 times a year, lazy he is not as he puts his heart and soul into every move he makes, and last but by no means the least his food intake is more healthy and less food consumed than other overweight people, so yeah he will have the odd biscuit with a coffee to which he would only have 2 of at the most daily or a packet of crisps in the evening, he will have a cereal breakfast in morning then normally a banana later at lunch time he very rarely will have a sandwich late afternoon and a medium , not oversized main meal portion, and he drinks a lot of water. and yes now again he will have a bar of chocolate and no that’s not a daily basis. but they few luxuries are his only self luxuries.
      M.E. also effects your state of mind as the more an M.E. sufferer tries to push themselves in anyway imaginable , the worse the condition has an effect on them . so if they give theirself a goal of saying right tomorrow am going to shower and go to doctors , some how the illness has that ability to prevents the sufferer from not just being able to complete the task in mind but it becomes an impossibility to even start the process task that he was either needed to be attended or wanted to attend, apart from the physical aspect preventing it can be the mind / brain that’s being effected and if the sufferer has any extra emotional anxiety, worry , stress , that just increases their illness and suffering 10 fold… depression too then settles in but people who don’t fully understand the condition would think their depressed more than the illness but that not the case , the illness have some similar symptoms to depression but they are the symptoms of me. then add depression into the equation and its a quietly horriblely lonely illness to be living with as you know theres no cure as its a physical and mental illness all rolled into one with profound sadness enduered. so making plans is a stressfull time as the sufferer is living a dreaded high anxiety constent countdown till that day.
      my dads a more or less keeps himself to himself he doesn’t like to ask for help but would give it if able unconditionally , he doesn’t have friends but looks at his relatives not just as family but as his close friends. these family members are his everything, these are the people for whom hehas shared his life with , and who when they visit or if they have blether on the phone provide my dad with the much needed and deserved of happy chatting they don’t realise the greatness in their being around him or that their small telephone call has provided so much of a realease of that depressing state of mind , I know cause ive seen and experienced it over the years , that visit or call was like a drop of medicine for my dad and even though sometimes he can struggle to be a good accommodatingly host due to his condition but when these family members are around they are without a doubt pushing all the right buttons and their unknowingly providing my dad the benefits that’s making a huge difference to his overall well being and to me its like a medicine , this is worth more than money itself or any medication that money could buy…. no amount of money can buy or give my dad this. although its not as often as would be great for all conscerned, what time is spent together is very precious to him I most certainly know, and can only hope and pray I find a way in which to raise the money needed to help make him lighter so in turn hopefully he can have that much needed and deserved boost he’s been secretly wishing for too…yours faithfully
      a caring daughter of an M.E sufferer x

    8. halfshellie says:

      @Joan…Idk if you’re still looking at this forum but I hope you are. My story w/ CFS is similar to yours. I work with a Naturopath in healing my CFS and have been successful so far. I have been working on healing for 6 months. I was very very sick with all of the CFS symptoms. I started my healing journey working with an alternative med doc who tried to heal my adrenal glands using naturally dissected thyroid and sex hormones. This treatment marginally helped my cognitive function and made my fatigue 100x’s worse. The results of this protocol were transient. After a year of following that protocol with the alternative med doc I started working with a Naturopath at Clymer Healing Center in Quakertown PA. All the center does is heal CFS/Adrenal Dysfunction. He started me on a supplement called Adrenal Cortex Extract – ACE. As soon as I started the ACE I felt it work in my muscles. As I said I was very sick although on paper I was “super healthy” (according to mainstream docs). My muscles felt paralyzed, I felt paralyzed and at one point I had to be hospitalized bc the left side of my body did become paralyzed. The 1st few weeks of using ACE my muscles hurt. It felt like I was lifting weights every day and my muscles were sore from it. Of course I wasn’t lifting any weights. I think the ACE somehow provided my muscles with what they needed. I had lost a lot of muscle mass bc of CFS/AD. After I had my ASI (adrenal stress index) test he added 1/4 tsp. licorice root. I never really felt much from this. None the less I continue to use it. I also eat a hypoglycemic diet. I’m really good about this. No sugar, caffeine or alcohol. In about 2 months of following this protocol my cognitive ability and memory improved dramatically. I had stopped dreaming several years prior and started again as well. I was glad that I was finally on the right track with healing. The only symptom that I wasn’t so successful with was the fatigue. I recently decided to add pregnenolone. I’ve only been taking it for a few days. I take it before bed and I feel very happy when I wake up. This is promising to me bc my adrenal dys was so advanced that I have/had anhedonia. Having anhedonia is worse than the fatigue as far as I’m concerned. Anyway waking up and feeling happy the way I used to is great! Although the ND didn’t tell me to take pregnenolone I am still going to continue on a 30 day therapeutic trial. I also started using a hydrocortisone cream. This really really helped my fatigue and it really really helps with the anhedonia, sleep, eyesight, muscles etc. too. I know the ND wouldn’t be happy that I was using these but I had to keep my recovery moving in a forward direction. For the record I have spent 6 months healing my adrenal glands and I think that’s why I have responded so well to pregnenolone. I had tried it several x’s in the past without any improvement. Healing from CFS takes the right supplements and medications at the right time.

    9. cfsishell.com says:

      There are millions of us.

  2. karenkb says:

    I so agree. It’s hard enough to get seen but then EVEN with the docs that know ME/CFS is REAL you can’t get an appointment. I saw Klimas in June. I was told they would call me for a follow up appointment to discuss bloodwork. No calls for 6 weeks so I called her office. The first they can talk to me is October—- for JUNE bloodwork!! No celebrity gets treated like that. AND this is for a doctor known for her work in this illness!
    It’s not realistic to think any of us “regular” people will be attended to and treated well. And seriously, how do we know these people did not just have adrenal exhaustion or something such as that? I have been ill 19 years and I don’t think it’s going to “go away” and I will become well again. Not that I am negative but I am realistic.

  3. phone says:

    I’m not sure about what you meant by annoying, but I think the point of the message is right on! I am 59 and have had Rheumatoid Arthritis for 42 years and Fibro, etc. for almost as long. Probably the hardest thing has been dealing with the medical field!!

  4. MamaChill says:

    Hi I just want start by correcting a few of the assumptions on this feed, the same kind of assumptions ignorant promotion seeking journalists make. Even though it’s undeniably wrong, I get why they do it,because they want to further their careers by whatever means and without conscience to what their often false and misleading words do to the M.E community as a group and more importantly as individuals. But I find it sad that there are those in the M.E community so quick to judge and make assumptions about another.
    I’m one of the more unknown ones in this article & certainly dont have the finance and glitz lifestyle that some of the others have, in fact I’m too sick with M.E to work. I get the anger and frustration that you feel, I feel it too, every single day just as i have for the last 24 yrs. But those not bed-bound still have choices,abeit limited but choices nonetheless. Whenever i have a glimpse of energy, wether it be 20 mins, an hour or a day,rather than use it to enjoy a rare cappuccino with friends,or a simple soak in the bath, I use it to publicise, & raise awareness of this devastating illness and funds for the M.E charity Invest In ME. via a music artist facade Mama Chill, thats my choice and how i choose to use whatever little energy i have as and when. By focusing that smidgen of energy its allowed me to achieve quite alot,Regular mainstream radio play. radio interviews, magazine & newspaper articles,etc all worked around my limitations, and for every platform i’m given, it allows more publicity to the cause. I get no special treatment as some of you refer, it took six years to get a diagnosis in which time was hell on earth as Doctors tried to make out I was going crazy. Once diagnosed nothing changed, I was, and still have been left to get on with it. I wait for doctors appointments just like you, I’m in the process of a two month wait on a hospital appointment, because the increasing exhaustion means i dont even have enough energy to breath half the time and my legs buckle. As for the Celebrities with M.E that you see all the time, it may not actually be their fault its not advertisesd everywhere. I manage myself and decided from the off to be honest and tell the world about it in the hope it would help, but these other people have large management teams and contracts might mean they are not allowed to talk about it. It;s sadly a fickle world and I’ve found the US worse than the UK for not wanting to talk about illness, its a big no no in the entertainment world, in most cases if it comes out that you’re ill, all work dries up and nobody wants to give you the time of day, it shouldn’t be like that but it is , I’ve done a number of US interviews, told them all about M.E the charity etc but when the articles printed theres absolutely nothing there, it’s as if they’ve completely wiped any sign of illness off the radar. That’s why educating and raising awareness is so important, we need the media to get it, the journalists, the producers, the directors then maybe “Celebrities” would feel safe about coming forward, but what we cant do is just tar everyone with the same brush with misjudgments and assumptions, those of us with M.E know only too well how that feels so the least we can do is give others benefit of the doubt no matter who they are. Stay Blessed XXX

  5. colin bath says:

    Ive suffered with ME/CFSfor 4 years with symptoms of Fatigue /Depression Aching Limbs /burning legs and arms plus after mild activity severe painfull fatigue plus a feeling of being ill after any activity or exersize of any kind .I was diagnosed by symptoms with a statement of ||No Cure or Medicationwill help!!As a last resort to see if it will help me i am doing aBody and Mind Course of Treatment to se if it will help as no indication of any treatment on the Medical front NHS/GPs. Has Destroyed my life Socially/physically and Mentally.LIfe is taken away from us with the added burden of no visual signs.I have named mine invisible TORTURE>

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