It’s Whitney Dafoe’s 37th birthday.
He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of netherworld for seven years. Except for brief arousals from Ativan, Whitney remained too ill to communicate other than through pantomining for years.
It doesn’t sound like there’s much to celebrate, but there is. For one, without speaking a word, Whitney Dafoe has made a profound difference in this field. Whitney’s illness brought his father, Ron Davis, one of the most highly acclaimed geneticists and inventors of his era, into this field. Ron Davis then brought Mark Davis, Robert Phair, Ron Tompkins and many others into the ME/CFS orbit. New technologies and hypotheses have appeared.
With the Open Medicine Foundation’s support, ME/CFS now has footholds – small ME/CFS Research Centers – at two of the top universities in the world (Stanford/Harvard) – and two more research centers in Canada and Sweden.
There’s no telling what impact his story – so vividly portrayed in media publications – has had. Francis Collins, the head of the NIH, has said how Whitney’s story has touched him. It goes on – a book charting Whitney and his family’s story, and ME/CFS, will come out early next year.
The nanoneedle, the Metabolic Hypothesis, the Severe ME/CFS study, the Stanford Working Group, the Symposiums, the research centers … none of it happens without Whitney. Without saying a word – just by being there – Whitney has made a huge difference.
Awakening
Recently, though, a remarkable thing – one of the most remarkable things I can remember -has happened – Whitney has awakened using a drug called Abilify.
Whitney, after a head shave in June.
Janet Dafoe, his mother, and Ron glommed onto Abilify after Hector Bonilla MD at Stanford learned that after one his ME/CFS patients took Abilify for something else, it improved her ME/CFS symptoms as well. Janet reported that Bonilla has found low doses of Abilify helpful in a number of patients. A placebo-controlled trial using low-dose Abilify is being planned at Stanford.
(Abilify increases dopamine, decreases serotonin, and is an anti-inflammatory. It’s categorized as an anti-psychotic, but so many drugs end up being used for purposes so different from their original purpose that categorizing a drug can seem like an exercise in futility. Abilify, for instance, improved cognitive functioning in people with ADHD who were not depressed. Given how little we know about how drugs operate in the body there’s no telling what it’s actually doing with Whitney and other ME/CFS patients.)
They started about the smallest dose possible (.25 mg), worked their way up to 2 mg, and then waited several weeks. They were about to call the experiment a failure when Whitney pantomimed using objects in his room (they have created their own language using small objects) to stick with the drug. Then, a couple of days later, they got a big surprise – a text from Whitney with a small video in it.
Whitney had been unable to touch or even have an iPhone in his sight – without crashing – for years. Now, to their astonishment, he was using an iPhone to send them a text – plus he had made a video to boot. Something had clearly happened. Abilify had kicked in.
In a Facebook post, Whitney said it was like a small part of his brain waking up, leaving the rest of him as he was. Over time, he was able to add a keyboard to his computer and use that.
Most of the time he’s as sick as ever. He can’t talk, has lots of problems with stimuli, is still being fed by a J-tube, has lots of stomach pain and his care is the same. Being fed via the J-tube, he said, feels like “being injected with cement”. Visitors have to be very careful to be quiet in his room so as not to cause him to crash. His windows are blacked out. Wryly, he says he knows his ceiling very well. ME/CFS has been an incredible endurance test.
When he has the energy, though, he’s able to communicate. He has re-emerged. It’s how he’s emerged that is so striking.
His cognitive faculties appear to be completely intact. While his body remains very, very weak – his brain is clearly working very well. In fact, it doesn’t appear to have skipped a beat over the past five years. Articulate, discerning, poetic and sometimes provocative posts have flowed from his Facebook page over the past 6 months or so.
His mother, Janet, said that she wasn’t surprised by how thoughtful Whitney’s posts are. Even as a three year old, she said he was unusually thoughtful and empathetic. He’s always been focused on the big picture and always went his own way as well.
Still, it’s amazing that Whitney’s mind appears to be untouched after 7 years of almost complete isolation and debility, in which he’s been unable to speak or communicate, except for brief periods by pantomime. Even though he couldn’t communicate, he said he’s always been able to think clearly if he wasn’t in a “mental crash”.
Those mental crashes, though, were devastating. He described his mind being “wiped clean”, leaving him in a “thoughtless, feelingless void” which was worse than anything he could have imagined before. He was unable to access feelings or thoughts, but was still totally conscious. At other times, he felt he was able to think very clearly.
His re-emergence suggests that the research thus far is correct: the ME/CFS brain isn’t physically damaged – it “simply” needs to be reset or revived in some way. The cognition can come back. That’s good news given that most people with ME/CFS suffer from cognitive problems. Whitney’s ability to come back and communicate so effectively – via the computer at least – should provide hope.
Facebook Essays
Whitney’s essays on his Facebook site have touched upon a wide variety of themes. Below are snippets from some of them.
Supportive
Image from blog calling for the end to suicide from ME/CFS.
After a scary episode brought on by an infection that left him with night sweats, tremors, muscle convulsions and gasping for breath, he exhorted people with ME/CFS to:
“don’t forget the light. It’s there even when you can’t see it. I promise.”
“I want to be clear about something…..I’m never giving up.” (Sept 2nd)
“I hope you all know that your suffering, and you staying alive is making a difference. Every single person who has ME/CFS and stays alive is engaging in an act of protest against the fucked up “shitstym” (as Peter Tosh would call it) that has kept us sick for decades. I’m proud to be amongst so many heroes.” (Aug 13th)
“I call for an end to the age of suicide from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis…. You staying alive in the face of this is literally changing the world.” (Aug 8th)
“I think one important aspect of coping with ME/CFS is lowering our expectations, as sad as that is to do. But a discrepancy between expectations and reality is one of the biggest causes of unhappiness, even among healthy people. Everyone wants a Porsche and a big house and gorgeous significant other, etc and very rarely does it all come together. (And even when it does healthy people are still unhappy because those things can’t make them happy, happiness is a state of mind).” (Sept 7)
From a poem sent to him by a Buddhist master he studied with:
“When you stop thinking —
The twists and turns of thought stop,
You break free.” (July 2nd)
Evocative
Image from post on what severe ME/CFS is.
On August 7th, Whitney composed one of the most powerful statements I can remember. There’s no embellishment. No attempt to pull at the heartstrings. Just the facts… it just knocked me over…
“I haven’t left my room for 7 years except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time as well as Fentanyl during the procedure.
I haven’t been touched by another human being without it hurting me in 7 years.
I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years.
I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes.
I haven’t taken a shower in 7 years. I clean the most needed parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me.” (Aug 7th)
Check out 9 more stanzas on his Facebook site.
Provocative
“Please Stop Calling ME/CFS An “Invisible Illness”…”invisible” is way too close to saying “non-existent”. When you call ME/CFS “invisible” people will think something very close to “non-existent”. (Sept 29th)
“Awareness Starts with Us – “Remember – every person you don’t tell that you have ME/CFS is a person who doesn’t realize they personally know someone with the illness or worse doesn’t even know the illness exists. A huge part of the reason there’s so little awareness and funding is because patients so often hide their illness from the people in their lives. They do so because of the prejudice they experience but in the long term, it only perpetuates it. It’s time to stop the cycle. If you’re in a position where it’s physically possible, even if it’s uncomfortable, tell the people in your life.” (July 16th)
Poetic
“The crickets were having a full on love fest outside. Laying there listening (not too intently or it would overwhelm me; I was listening passively) I suddenly was flooded with memories of how I’d felt in the past hearing that same sound.”
“The light is gorgeous outside here in Palo Alto, CA as it filters through the thick haze of smoke overhead from all the wildfires. Everything is glowing yellow and soft. It’s quite magical.” (Sept 9th)
The Book!
A big opportunity to spread the word on ME/CFS has presented itself. Preorders of “The Puzzle-Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son“, by Tracie White (and Ron Davis), are now available. White wrote the award winning Stanford Medicine piece which introduced Whitney’s story to the broader world. Now she provides a fuller story of the hunt for the end of ME/CFS.
Once he learned Tracie was writing this book, Whitney reported that communicating with her became a top priority for him. Sensing the difference this book has the power to make, he said he spent hours communicating what his life was like, and what ME/CFS was like, in an effort to make sure it was accurately portrayed.
If you’re going to get this book, please preorder it now as the publishers look to preorders to determine how much they will promote a book. I just preordered mine.
Whitney’s birthday photo.
Birthday Wish
Whitney told me that he’s bypassed birthdays for years because of the painful reminders of how much he’s missed. This time he’s celebrating it – and looking forward to getting better. He has great confidence in his Dad’s ability to move mountains with this illness and said that no matter what’s been lost and cannot be regained, he’s “a creative spirit and will find happiness no matter the things I can’t do. I’ll be focused on all the things I am now ABLE to do with my life! Like go out into the world and photograph again…”
The day before his birthday, Whitney posted:
“It’s my 37th birthday tomorrow and for my birthday I would like donations to OMF to help my father’s research. He’s making HUGE headway right now, with some recent game changing discoveries that can’t be talked about publicly yet but trust me when I say things are MOVING. Please donate whatever you can to OMF to keep Superman’s work moving in honor of my birthday. You can donate here on Spot Fund and 100% of your donation goes to OMF.”
“I want to get better and see all of you rise from your beds, wheelchairs, and homes with me!”
This is great news! Thank you, for sharing this amazing story!!
Wow! Great news in a dark time for millions of people, including many of us with this illness.
I have noticed the same regarding time frames. If something works, it works about 6 months maximum and then it poops out
Please be careful with Abilify. I took it for a short time and I had a lot of trouble walking. It was very scary. I had never had that problem before. I quit taking Abilify and my walking returned to normal. My psychiatrist said he had seen that problem before.
Chelsea, a handy trick to extend the length of time a medication is effective for, is to slowly build up to a therapeutic level, wait for some improvement, then ever so slightly reduce the drug, so slow that if it’s a tablet you only remove a small shaving for a week or two. Taking the remaining tablet daily
Then start removing 2 small shavings off the tablet daily for a week or so.
Eventually you’ll notice the drug’s therapeutic affects reduce, so increase one step back up. Stay on that dose a while then see if you can step down slowly again.
I found this method gets maximum therapeutic use out of a medication longer than normal. The reason is usually the recommended therapeutic dosage is too high. So we are taking more than actually needed, and the body starts tolerating it too easily and soon the therapeutic aspect become ineffective.
It’s a case of less is more
What did Ron Davis do for ME people before his son got sick? Now he wants everyone to support him
Did he support ME before?
Glad that Whitney is better
https://drive.google.com/file/d/1BkEGcaBCmfaxQogRrp93wOXWoyyKvmMF/view?usp=sharing
As someone that goes to Stanford to deal with CFS (I think CFS… these things never seem 100% certain) I had fantastic results with micro doses of Abilify BUT after about 7 months it ceased to have any impact on me. The exhaustion, brain fog, and headaches all came back. I switched to Celebrex and that has also enabled me to really feel pretty normal but now 8 months into it, I feel myself having a few more bad days each week and the number of productive hours decreasing each day. I think there really is a neural inflammation problem to this disease. I’m hoping as the Celebrex also ceases to work that I can return to Ability and it will have the same impact again. The issue seems to be that there is no permanent solution, most drugs only seem to help for 6-8 months and then you have to move on to something else. Good luck to all of us out there!
Happy Birthday, Whitney! Your success is astounding! Congratulations and keep getting better, please.
Our son, Kevin Handler, also a patient of Dr. Bonilla has been sick for 7 years, too. Last year he started taking Abilify and one year later, he has moved to Galway, Ireland bought a house, begun studying Irish and producing and making music and fallen in love twice!! He was sick of the ceiling, too! I hope you get up and back to your life as you have dreamt it soon!!
Hi Claire, I am so happy to hear that after 7 years your son has his life back. My son has been sick for 8 years since he was 21. I was just wondering if your son is still taking Abilify or if it kind of reset things for him and he was able to discontinue? Can you tell me what his main symptoms were? Brain Fog and the inability to stand for long are big issues for my son. Learning to pace himself has really helped him to continue to work on goals and feel like he is making progress. If he could get rid of the brain fog, that would be very helpful. Thank you and I hope your son continues to be able to follow his dreams!
I am not questioning your conclusions about the waning efficacy of the drugs, Mark, but I wonder if you ramped up your physical and cognitive activities once you began to feel better. Is it possible you pushed yourself beyond a reasonable limit … reasonable in a ME/CFS world … and that might have affected the gains you had made? Even at the best times of my remission from CFS, I pushed too hard and lost energy, etc. Now in my second bout with this illness, I am trying to learn both gradual reasonable output of energy plus rest. It’s a lesson I am doomed to keep relearning. Good luck to you.
Linda – you might be right that I start feeling better and do push myself. I tend to start exercising and push myself there coupled with working longer hours. I try to listen to my body and give it the rest I believe it needs, However, I also live with a sense or urgency for getting things accomplished because I never know if I can keep doing them later. There are personal goals and simply just the need to make a living, put kids through college, etc. The world doesn’t stop just because I sometimes need to.
I’m sorry to hear that ability didn’t last long but nice to have even a small break while the med worked. I’m not surprised to hear this as I have all sorts of problems with meds including ultra rapid metabolism so the meds are in and out in half the time. It is frustrating. I’m happy for Whitney and hope ability continues to work for him.
Kathryn – don’t feel sorry for me. I’m actually super lucky. I think my symptoms are mild compared to many and I’ve organized my life in a way that really still allows me to thrive personally and professionally. I’m really happy for Whitney and hope he has far greater long term success with Ability than I experienced.
Hi Mark Martinho
Do you use only Celebrex or another drug also?
What´s the dosage you use?
Mark be careful of ulcerative colitis and internal bleeding with Celebrex. Keep watching for blood in your stools.
Good for you that at least something helped, if only for a few months, but I would be celebrating a glorious 6-8 months of recovery! Nothing has worked for me, and actually made the symptoms worse. I’m eager to try the Abilify. A friend also suggested Milk Thistle to help with liver function.
Thanks for the encouraging info on Abilify and Celebrex, Mark. I have had CFS since 1985, and now at 76, am despairing with constant fatigue even though I get 10 hours of sleep. I have tried to get an appointment at Stanford for years but am told the waiting list is 2 or 3 years. Do your have any suggestions to be seen or recommend someone who is prescribing treating CFS with Abilify or Celebrex? Thanks. John.
What is the standford dose or your dose for celebrex? Im on 100 a day and dont feel any different.
Im .5 abilify which had a small but notable difference, but has been hard to increase due to side effects.
I have read other comments similar to yours regarding the limited amount of time that different ‘successful solutions’ work. It makes me think of the wonderful (and heartbreaking!) Robert De Niro movie, “Awakenings” in which a doctor was able to bring catatonic patients back to life with a new treatment drug. Unfortunately, it only lasted for a certain amount of time (I don’t remember the exact duration) before it lost its efficacy and they all returned to their previous condition.
Whitney, you are our ROCK STAR! ❤️
Best news in a long long time.
Thanks for you being you Whitney!
You’ve been doing more laying there then most people do in an entire lifetime of activity.
Sorry for you having to be you Whitney!
It takes courage beyond what the bravest warrior ever had to have to just keep being you, alive.
Wow! first, a few improved on Ritixumab (I will leave Ampligen out of this); then the Jen Brea story, and a couple more rather like it, and now Abilify–any news on the Naviaux / Suramin story? There is hope…. And many thanks for sharing this–and best wishes to Whitney for further improvement….
This is outstanding news. I am so happy for the whole Dafoe/Davis family, and most especially Whitney. Congratulations and my very, very best wishes to you. Certainly this will bring lots of joy to the ME/CFS community as Whitney has been such an integral spirit in the whole movement toward a treatment. Whoopee!
I was one of the patients (possibly the patient) that Dr. Bonilla got great results from Abilify from. The one thing about Abilify from my personal experience (and this may not be for everyone) is that I seemed to need to increase it to keep the effect and then go off it for a while because my body seemed to get used to it. BUT when I combined it with Low Dose Naltrexone I no longer needed to do that and so I didn’t go through the periods of having to go off it and so am much more stable. But even with just the Abilify, to have months of feeling better after years of being bed bound, even if I did have to go off it for a period of time, was a welcome relief. Again, this may be a totally different experience than others have and they may find they don’t need to go on and off like I did.
Jeannie – I too was given Abilify by Dr Bonilla and had a very similar positive experience. As I wrote before, I switched to Celebrex when it stopped working with very good results too. Really glad to hear that you found the combination of Abilify and LDN effective. I think I might give that a try soon as I seem to be building a resistance to Celebrex.
Do you take anything for energy? I just had RFA on my neck and when the pain goes away my legs get stronger. When the pain comes back they get weaker almost rubbery. I was on Ampligen for a year in 2011 and was 70% better but ran out of money. I just started Celebrex for arthritis I’m 51 and was diagnosed in 2008. Ability with Celebrex?
Have any of you had echocardiograms? I have CFS and over the years I developed Left Bundle Branch Block (LBBB) and cardiomyopathy (low ejection fraction)! I cannot exert myself whatsoever. I’m up for about half a day. Look into Dr. Selye – and the Stress Response. We might have problems with the Hypothalamus etc. axis. Impaired stress response!! I take meds for my GAD ( Generalized Anxiety Disorder)..without anti anxiety meds I couldn’t exist. At this point I wouldn’t worry about getting addicted! So what? They make me able to function. I take Percocet ( narcotic) for pain..great improvement in my mood and stress tolerance. I’ve been suffering all my adult life from severe anxiety, panic disorder, extreme fatigue.. this is a state of exhaustion..thanks, Marta
How long did it take for the Abilify to start to improve your fatigue. We’re you already on LSM?
Hello, I’m Freda: I’m so happy for you Whitney. As for the comments regarding ambilify, I have not tried it, but the antivirals worked for a shot time and when so stopped taking it my symptoms came roaring back. It has been a rough journey, but I’m blessed to be here.
Diane Steinberg
I sit here with tears of joy in my eyes. What a brave man you are and you have given me hope after having ME/CFS for 32 years. Of course I’ll pre-order your book and I encourage all our supporters to do the same. Happy Birthday dear friend!
I don’t want to be the barer of bad tidings, but I was a part of the Abilify study at Stanford and I had to stop taking it because it affected my mental functioning. I would do things like go to the store and leave my purchases on the counter (more than once), sometimes I could barely form thoughts and my parter told me I was always ‘spaced out.’
Mind you, this all happened at the tiny dose of 1mg. For psychiatric patients it is usually around 10 mg. and can go as high as 30 but can lead to uncontrolled facial jerks and other undesirable side effects. I tried it for many months, slowly titrating from .25 to 2mg. Abilify is usually used for conditions like bi-polar or schizophrenia and, depending on what type of metabolizer a person is, the half life can range from 75 to 150 hours! That’s a long time!
Perhaps I needed to only take a tiny bit once a week. After reading this post, maybe I’ll go back and try that.
People who recognize my posts know that I am also pursuing thyroid medication as a possible treatment (I have Hashimotos but am euthyroid). I do notice some positive changes in my energy levels, but also got the news that NP thyroid has had several recalls for sub potency. I’m waiting for a replacement batch after a poor TSH result.
My autonomic testing was a wash.
One final thought; given that Trump has Covid, if he experiences (or if any of his top officials experience) post viral fatigue, I do hope that experience will put our plight into their consciousness, and then maybe they can lend a legislative hand!
First, let me just say that I am so happy for Whitney, I could cry. What I am about to say is not meant to be negative. This is wonderful news and my heart is full of joy.
However, why is this article about Abilify? When reading the actual words by Whitney, I don’t see anything where he says that Abilify has resulted in these amazing improvements.
Whitney said that it gave him a small part of his brain back (or something like that) and his body remained the same. Whitney’s mom tweeted in July that Abilify made only a tiny difference (and that Whitney has started it in February).
I‘m glad Abilify helps some people, but let’s not make Whitney’s improvements about Abilify when that doesn’t seem to be what he has indicated himself. Was there an interview with Whitney about this? Where did this information come from besides his own posts, which I don’t think portray Abilify as making a huge difference.
There are exciting things on the horizon. I know that. There are breakthroughs being made. We have so much to be hopeful about. When reading this article, and then the actual words by Whitney, I’m not sure why It was written in such a way that implies Abilify did some grand thing for Whitney. I think that’s a stretch. Yes, Whitney is improving and I am so happy for him I could cry. However, to make it seem like it’s because of Abilify is a stretch. Whitney said that it gave him a small part of his brain back (something like that) and his body remained the same. Whitney’s mom tweeted one July that Abilify made only a tiny difference. I‘m glad Abilify helps some people, but let’s not make Whitney’s improvements about Abilify when that doesn’t seem to be what he has indicated himself.
We have a lot of reason for hope. There are wonderful things on the horizon. There are big breakthroughs being made.
However… I don’t think it’s Abilify.
Rhonda – I’m told body weight has nothing to do with dosage, but at 170lbs, I was taking 0.25mg/day and it was very effective. I find that upping the dosages for most drugs I try after I build an initial resistance doesn’t seem to work. Maybe 1mg was just too much?
Happy Birthday Whitney! You inspire us and give us hope. I am so happy for you and wish you all the best.
Thank you, Cort, for always keeping us informed! -D
Happy Birthday Whitney! I’ve been hanging in there with ME/CFS since 2011 – for me your strength and spirit are inspiring. For your birthday I’m going to share your story with 37 people and ask them to contribute what they can to the OMF. Stay strong!
God bless you Whitney for your courage and very intelligent words. I could not agree with you more. Your words echo my feelings and thoughts. Yes I know there is a big picture both here now and in the future now. When we find God in ourselves we will know that we are God playing this drama for a bigger reason. In the mean time let’s be positive warriors and fight the good fight!! God bless you brother
Just made a donation in honor of your improvement.
I am lucky, my family has always believed in and supported me through my battles with ME, as yours has.
All best wishes,Rudy
Whitney I am so overjoyed for you to have found a way to communicate and express yourself better. My husband, David Maughan, a researcher, has met with your father several times and has been trying to help me get better for over two decades. I respect your courage and strength of character in the face of this devastating disease.
Tears of hope. Thank you. Happy Birthday!
This is grand good news! Happy Birthday to Whitney Dafoe! It is wonderful to hear of the least improvement in his life, and I count sending messages to people as an improvement in his life.
Happy Dance of smiles for Whitney❣️
may you, Whitney, be able to dance happily one day— and millions more with you!
Ok
Whitney, you are an inspiration. I will be donating to OMF in honor of your grace and your transcendent hopefulness. Wishing you continued improvement and peace of mind.
Reading this piece about Whitney – his thoughts and message of hope and the courage to continue, just makes me feel like crying – in a good way.
Happy Birthday Whitney!
Tracey 🙂
Oh My Goodness! I have read of you through the years! I am so thrilled for you! What a journey you have been on! I was first struck down at age 15 –I am now 66 years old. And still my physician is the only person except family that has ever even heard of this illness that STRIPS AWAY WHO WE ARE AND WHO WE WERE MEANT TO BE. Oh, Whitney…how I needed to hear of your awakening!! My Very Best Wishes to you
This is a MIRACLE!!! its incredible. I have known of this family since I worked at Stanf Med Center and got CFS myself 20 yrs ago. (and I met Whitney about 10 years ago) This is really exciting. Of course, everyone responds differently to treatments, but I salute Whitney and his family for their tireless*** work. What a very happy story to encourage us all to keep going on!
Tears of joy and sadness reading this. So so happy for Whitney and the improvements he’s seen and for the news that good things are coming our way from Ron. Sadness reading Whitney’s posts about suicide as I lost an amazing young man with ME this year to suicide. Sending love and all good things to you, Whitney. You are one of the most inspiring people I know.
Happy Birthday! I was diagnosed in 2000. Over the years ME/CFS has attacked multiple body systems. Early on my brain was severely affected but I always felt I could understand ideas much better than I could express them. I still struggle with expression but over the years went from a near total inability to speak to varying degrees of word retrieval problems. I have never been close to your level of illness but I do see some of my symptoms in your story.
I am looking forward to reading the book and just preordered it. Your father’s work has been a great comfort to me the past few years and I thank both of you for giving me hope. I can offer you hope in that my experience with ME/CFS has been gradual improvement over the years. It seems to be a combination of managing my expectations and managing my activity. My hope for you is that you will continue to improve and learn to live with this illness until your father and his associates figure out the cure.
Whitney, your strength and bravery and will have totally amazed me this morning.
There is much I could say, but I will just say this. I’ve had CFS/ME for 22 years, since
I was 54…you have made me realise how lucky I am, although I know that won’t last for long; pain and disability makes you forget…… but mainly your advice to tell as
many people as possible that you have CFS/ME and not stay quiet and ashamed.
I tried to explain it to my new grand daughter in law, who had stupidly told me my
depression and anxiety was caused by my age… now she doesn’t talk to me because I called her out….. but I will continue…. you have inspired me. And for all this who are growing into older age, don’t be put down and told it’s just because you are old.
Even my GP does that, here in Australia….
Whitney, good luck, dear person….. dear inspiration.
Billie, Whitney, thanks always for your ability to speak out to abled bullies re: their ignorance and prejudice. And thanks to all those who act as true family, blood relations or not, who continue to advocate for you and therefore all of us. Support and speaking out repeatedly to the clueless invigorates our winning strategies for wellness.
Beca, thankyou for you thoughts…. I often lose confidence with this, and I
often feel ashamed for not to be well; so your support regarding speaking
out (as suggested by Whitney) has helped me today, and I will try to
remember the word “repeatedly”….. many thanks
Lyrica completely solved my sensory issues. I spent 7 months mostly in a dark room because lights, dishwasher noise, etc, was too much for my system to handle. Lyrica solved that for me. It helps decrease glutamate.
Dear Nina, what dosage of Lyrica do you take? Thanks
WONDERFUL NEWS!!!!!
Whitney has one of his “purple bandaids”?.
Yayyyyyyyyyyy! Hoping for you to find many more! So very happy for you!
Issie
such wonderful news, love his thoughts
Whitney, I forgot to add, “Happy Birthday!”
I am so very glad that Abilify is working for you! I hope you continue to make progress and have more of the life you deserve! Blessings! Kind thoughts! Progress!
OXOX, Nancy B.
This stunning report makes my heart race and floods my eyes with tears. It has been a long journey for everyone affected by this mysterious disease.
Happy Birthday Whitney. Many thanks to your wonderful Father and the research team working so hard to help us all. I am severe and bedbound /housebound but not quite as severe as you. I am mainly confined to bed but can still eat and watch a movie. I really hope you continue to improve, you are an inspiration to us all. You are such a strong person – you carry the torch for us all. Thank you so much as reading your blogs helps me to carry on. Sending Hugs and Love to you and your family. xxx
I will definitely be buying the book 🙂
I will definitely buy the book as sounds like a fascinating read and will give me hope
Happy, happy birthday Whitney. You bring me hope for a brighter future for my teenage daughter.
Happy birthday Whitney! I am so thankful to hear you are showing improvement and can express yourself again thanks to the new medication. I am so happy to hear this news. I have had severe CFS, although am much better than I was, although I was very severe for the first seven years. I am so grateful for your father’s work too, and I hope and pray for better days to continue!!
Hi Lisa! Glad you are improving! I’m very severe as well. You helped me, I’m so scared. YOu gave mr hope. What was your very severe symptoms?
Thank you for sharing this beacon of hope with us, Whitney. You continue to be an inspiration to so many.
Whitney ~ This is what I call a Happy birthday indeed.!. It is so great to see your face and beautiful smile and to know that your brain fog seems to have vanished.
You are such a wonderful soul with a strong desire to live and regain your life back. Kuddos to you – You are quite an inspiration and your dad a phenomenal man. You are truly blessed to have such support and people that surrounds you, respect and understand your illness. I am truly happy for you. We started to get ill about the same time in 2004 prior to being ill, I was teaching scuba diving and trying to finish a degree. Everything came to a halt – as I was trying to push through it, rather than listening to my body. Unlike you though, I am able to feed myself but it has to be quick and simple, like a salmon sandwich or just plain toast. Like you, I don’t have it in me to take a bath or wash my hair. When I do, which can be after two – three months – I get major crash. If you know any clinician in Canada that sees patients, I would love to know. I know of Dr. Alain Moreau at Ste. Justine but he’s in research not a clinician. I already participated in his research. Or if you know of anyone on the east coast – I would come back to the States. I don’t have family or support here in Canada. I came back to Canada when my husband asked for a divorce but I should’ve stayed in the States. I had no idea that Canada was so far behind in being able to care for ME patients. I am tickled pink for you Whitney and again, thank you for sharing this wonderful news and what a sweet birthday present. Enjoy.!.
Happy birthday Whitney! So pleased to hear this news and am happy to contribute to your fundraising.
Unfortunately the book is not available for preorder in the UK yet.
Thanks for all your work Cort, much appreciated.
Apologies, my mistake re availability in UK, I’ve found the book and have pre-ordered. ?
Such wonderful news Whitney and a very happy and special birthday to you. This blog made me so happy for you when I read it this morning. I truly hope that you will continue to improve. Thank you also Cort for posting this blog. We need to keep hope alive!
I am so happy for Whitney. This just goes to show that we still don’t have one single cure that will work across the board, though.
I had TERRIBLE side effects from Abilify. I had facial contortions, hand tremors, and muscle spasms. I could barely get a fork to my mouth, and I couldn’t manage soup on a spoon without spilling all of it. If I held a plate or cup, I would suddenly flip it across the room, with absolutely no warning or way of stopping it. My muscles had minds of their own. My mental state had improved a bit, but the physical changes were just not worth it.
I did amazingly well on Latuda, but when I moved to a different country I couldn’t get it anymore, and I’ve had some regression. Wellbutrin is helping a little, but not nearly enough. Keep searching until you find what works best for you!
Whitney you are so brave and positive! I am so sorry for your suffering but so grateful that you brought your dad and many other extremely clever people into this field.
I am having a ‘crash’ time right now with vision problems and a e livery stiff aching body. Your story and your comment have lifted my spirits so much. Thank you with all my heart. We all think of you- you are a hero.
I have prayed for him everyday for the last many years. I am so moved by this. Happy 37th…the year I became chronically ill…’may it be the year Whitney begins his journey toward healing!!
I’ve never tried Abilify but every other atypical antipsychotic as well as buspar all make my muscles wrench up so hard and painful, they get so rigid and stiff I can barely move and walk around. I don’t know why this happens, even at very low doses. They do improve other things but I just can’t handle the physical pain I’m in on them which would make me scared of trying it
It is wonderful indeed to learn about your tremendous improvements, Whitney.
The fact that you continue to think about other patients, all while you are severely ill yourself, is a testament to your strong empathy.
And there’s a lesson there for all of us in our trial and error treatments — to hang in there and give it enough time (I think Cort has relayed Dr. Klimas’s advice to give treatments 3 months (unless adverse effects) before determining they are ineffective??).
I will definitely preorder this book – it makes sense that preorders are important indicators for the publisher but I didn’t know this before! Thanks for making that clear, Cort. I hope they get a lot of preorders so they then promote it to the greatest extent possible. The book will be an important advocacy tool.
Has any researcher looked into using Ivermectin to treat CFS?
Ivermectin is antiviral and anti parasitic and is being used along with doxycycline and zinc to treat Covid-19. Ivermectin is said to be effective in killing RNA viruses.
I know my CFS started with a viral flu infection (H1N1 I think). Other antivirals are being tried on CFS. Why not Ivermectin? It’s a very safe cheap drug that’s been around for 45 years. Ivermection is being used all over the world for many kinds of infections.
Using Ivermectin could reduce our total viral load from other RNA viral infections we have picked up over the years.
I pray everyday for everyone who’s suffering from CFS. Everyday I get up and pray for a cure for us all.
God Bless everyone.
Whitney, I have been asking our Pappa God and our Lord Jesus for a long time now when I saw your case to at least make you much better if not totally well. I want to thank Him now and cannot tell you the joy that filled my heart when I read this post. I also suffer from ME and Fibromyalgia and this is my fifteenth year. May God continue to bless you, your family and your Dad’s research
What a miracle! I’m so happy you can again communicate, Whitney. Happy Birthday indeed! We’ve all been following your story, your dad’s essential work, and your family’s journey through this no-man’s land. Thank you for your unfailing grace and amazing attitude. You inspire me. I’m filled with gratitude. Thank you.
Thank you everyone for the Birthday wishes! It’s been so long since I celebrated a birthday this is all such a change, but I’m rocking this one for all of you! And double thank you to everyone who donated to my fundraiser. Please keep the donations coming!
http://spot.fund/FindaCureForMEcfs
I also want to emphasize the importance of pre-ordering the book. The publishers decide how many copies to print based on pre-orders, and this then determines the impression that is made on the New York Times. Our goal is to make this a New York Times best seller so that ME/CFS is in the shadows no longer.
I hope I did you all justice in the book. I tried so hard to communicate to Tracie, the author, everything I possibly could about not just my journey, but the hardships and near unsurmountable challenges we go through with ME/CFS and prejudice we face from all aspects of government and society. I made it my number one priority and was only stopped by Tracie needing to get home to Santa Cruz before she fell asleep which is an hour’s drive on a dangerous curvy road. I made myself worse doing this, but knew it was worth it. And Tracie White deserves a lot of credit for making sure she was here every time I took Ativan for months.
So everyone, please pre-order the book for the sake of public awareness about ME/CFS, even if you can’t read. This is really an opportunity we’ve never had before and I’m so humbled to be a part of it.
Here’s a link to the book again
https://www.amazon.com/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507
Here’s a link to the book in the UK
https://www.amazon.co.uk/Puzzle-Solver-Scientists-Desperate-Illness/dp/0316492507/ref=sr_1_1?crid=1U3IIDKPFPIZL&dchild=1&keywords=the+puzzle+solver+tracie+white&qid=1601853956&sprefix=the+puzzle+solver%2Caps%2C274&sr=8-1
Let’s all do everything we can to make this a best seller!
That’s a really good point Whitney – that people could pre-order the book in a bid to raise the book’s profile and as a consequence – public awareness, even if they’re unable to read it themselves. Maybe the book will be able to explain the illness and its effect on someone’s life (what many people with ME/CFS are understandably unable to do) especially if they’re severely affected.
For me, apart from the very frightening and debilitating symptoms I’ve experienced over the years, some of the worst aspects of this illness has been unwittingly going through some sort of non-return valve into an inhospitable world, where no one speaks my language.
What is internally known by those within the ME/CFS community, needs to be externally acknowledged and understood by their wider community of family, friends, neighbours and the medical profession.
I will definitely pre-order the book and make a donation, in a few days time, when I get paid!
Have been paid and have pre-ordered your book. 🙂
I’ve pre-ordered the book Whitney. There are so many levels of ME but very severe sufferers get ignored because we are too ill to get to a doctor and they don’t come to see us. And no one sees us ‘out there’: more often than not, family and friends abandon us.
I was in your state for 3 years and another 6 years inching my way to my current (mostly housebound) level. I got ill at 24. I’m now 55. Again – and this is an important point – getting ill as a young person is very different to getting ill in your 50s when you’ve lived half of more of your life and have life skills to help you cope. How does someone in their 20s at the start of their life cope with this level of disability with no support and the world telling them that they don’t need to be bedridden and live in the dark?
People have NO IDEA of the physical agonies of being this ill. This kind of severity is VERY different to more moderate ME (as I am now). For a long time the severely affected were ignored in the UK by the ME Association which is why I set up the 25% group (now the 25% ME group which has grown exponentially with recognition that the mostly severely affected need the most help and get the least).
It may seem when you are bedridden and acutely suffering that you are doing nothing, living a kind of living death, just existing. But actually you are not. As you say yourself: by keeping going, by existing, you are giving strength to every other person in the same situation.
We will NOT GIVE UP. We will not be defeated and we will endure. This is not anything against people who have committed suicide (most people who can carry on will have one person in their life who helps them. Those that sadly commit suicide may not have had that support).
I just hope that all this money and attention going to Long-Covid sufferers somehow rubs off on us the neglected millions.
It is inconceivable that one can be SO disabled for SO long and be SO ignored, discredited and so underfunded.
Let’s hope this changes…
Thanks Min.
Being a “mild” (that term does not suffice) to moderate person with ME/CFS I have long thought this too
“It is inconceivable that one can be SO disabled for SO long and be SO ignored, discredited and so underfunded.”
And how much more so for the severely ill. So glad you started that group so that every person with ME/CFS be acknowledged and represented.
The severely ill are hugely important for ME/CFS because they more than anyone demonstrate just how damaging this illness can be.
‘SO disabled for SO long and be SO ignored, discredited’…
And at some point in the future people will be saying we had no idea things were so bad for you, we’re so sorry…
I am horribly fascinated by this phenomenon. Having worked with adolescents and adults, who have experienced a multitude of abuses, I have been struck by the fact that other people invariably knew this abuse was going on. Some of them even tried to raise their concerns, with varying levels of success.
But it seems to me that various factors play a part: how much power, resources and influence does the suffering individual have? How much effective support do they have? And are there negative consequences for those in a position to help, if they choose not to step in and assist the vulnerable person?
I can go demented thinking about these issues.
I pre-ordered. I wonder if it is a good idea to request your local library to pre-order too.
I agree. That’s another good way to get the book out into the public. Thanks for the idea.
Quoting Jay A.Goldstein’s book Betrayal by the Brain: “Treating neurosomatic disorders seems to be a matter of pushing the right neurochemical button. Patients who have been sick for twenty years can feel normal in a few minutes. Patients who have been completely refractory to fifthy medications can feel better with a fifty-first”. Only shame his theories and findings did not get explored and tried by more medical practitioners. Hopefully now it might be.
Happy Birthday Whitney!
As well as not calling cfs me an invisible illness, another step imo is to answer the question:
“Do you have any serious illness?
by answering:
yes, i have a serious illness.
I have re read so much of these comments, and cried, once again, for Whitney, for
everyone…….especially for those who became ill in younger years, and have not
recovered, if but a small amount. Yes, the unspeakable pain of a young life with
so much ahead of you……. once again it makes me grateful that I at least got to 58
before I was struck down and have had this for 22 years now…. it makes me an
Elder of the Tribe…. I almost got well in 2005, but then got a frozen should, and
down I went again. And so the story goes, as life happens to you as well, your loved
ones, die, you grieve, you get worse, you get older, and your hope fades…. but I
am grateful to have been able to have grandchildren, even though I rarely see them
now, and to have lived some of the life, you younger ones feel you won’t ever.
Inside me I feel there will be a breakthrough soon…. with people like Whitney
showing the way. So many aspects to this illness, as we all know. I have pre-ordered the book, and send thanks to Whitney and his father, and Blessing to everyone.
I’m glad Abilify worked for Whitney. It’s bad enough to be sick and couch-bound day in day out, I can’t imagine what it would be like to be bed-ridden with feeding tubes. I hope the Stanford trial works out and all severely ill patients get some relief.
This also points to the importance of trying out all different medication without prejudice. Most won’t have effect, but one that works can bring so much relief. Even 10% relief can mean a measure of freedom.
I’m so thankful that Whitney has experienced some improvement, I think of him every day. I know what it means to be severely ill with this disease. I became ill at age 15, am now 49 years old. It appears that the trajectory of this disease is towards improvement, however at a glacial pace. With endurance and time there may be an occasional break through, a medication, that helps in some way. Thank you Whitney for sharing your story, for giving voice to those who have not been heard. I preordered the book…
I got M.E in 1999. Unfortunately that has mental repercussions in the sens that there are no efforts to define or mend what you have.; Thus at the moment I believe what i had was Encephalitis induced by repetitive shingles….(20 odd times since 1993. ) and more recently once a year. Despite nothing in the form of assitance and tired of nothing I created an auto immune cure, which took a while to work out. Then took said regime which included natural interferons. The issues around theses illnesses are many fold but everyone suffers total neglect, due to wrong classification..WHO..halfwits. It took 6 qweeeks to improve my condition and a further 2 years to return myself to normal homeostasis . I had help from nowhere, thats what happens and the worst of this is, the sooner the issues are adressed the more can be done the quicker a recovery is possible,…In reality folk try too hard and go the wrong way.
PaulScoffield, that sounds amazing?! Any info on your protocol?
Thanks 🙂
Hi Paul. Can you share your regimen? I agree, if you can address things right away, the better.
I just shared this link and another from the OMF / Ron Davis / Stanford site with a study of covid long haulers happening in Toronto soon. I hope it helps them in some way, especially if it’s found that there’s a connection between the two and/or if some covid long haulers end up with ME. It doesn’t appear that I’ve posted a comment on this page but I have done so on many of posts on Facebook. I just want to say again that you are an inspiration to all of use who have ME and we are grateful for your father’s tireless efforts in trying to find a cure. Wishing you better days Whitney!
What our family experienced is an exposure to mold in our home for years and unknown to us. During that duration both of our young sons became ill but at different times.
Brought on by a suppressed immune system, genetics… who knows, came a Bartonella infection in one son. This included scary symptoms, for it must have entered his nervous system – this was his 5th grade year.
For our other son, a severe reaction to a pre-7th grade vaccination. He did fine with the tetanus/pertussis vaccination but 2 weeks later the meningitis vaccination stopped him in his tracks. CFS ?… yes.
It is now almost 6 years later, he will be a senior next year. He skipped his entire 7th grade year because of illness and is currently taught one-on-one at a private school. His symptoms have lessened some but any extended period of time with a lot of physical or mental activity and he must rest – alas, but with unrestored sleep.
He is chemically sensitive and we can’t use any perfumed soaps, clothes detergents, if we buy any new rugs or furniture, etc… it must go through an airing out phase before bringing it in our home. Headaches, numbness, sometimes tingling in his forehead area/temples. He is very sensitive to noises, bright lights, and in the past even showers hurt.
My mom also suffered with CFS, Fibro and chemical sensitivity for years. She is better now.
This has been very trying for everyone in the family, but my son is resilient and has taught me so very much about life – what is important and what isn’t. We all must slow down. Think before we speak. We spend a lot of time at home together as a family. He wants very little. He is content.
Bless everyone with any chronic illness and prayers for a cure for CFS/ME.
Good luck with your son and thanks for the wonderful share.
Oh, So Happy for your improvement Whitney! We all sort of dream of a day when we can cross a bride that says…Enough!!
I got mono at age 15 in 1969, was never the same after that. Then fell off the edge of the world from another infection in 1985. Mostly homebound/bedbound for 37 years. As a Christian I know that someday my Savior will say, “Show Me Your Scars.” I’m not alone.
Happy Happy Birthday!, (You can hear me singing, right?!”
Thank you, also to Whitney’s Dad!!
See you only allow comments that agree with you .
Thank you for the inspiration and hope! You are a brave and courageous man!! A Hero! I will tell others I have cfs so they will know someone who has it and so they will never be able to say they never heard of it again!
The beauty of your spirit and tenacity of your soul are themselves poetic.
All one has to do is look at your brilliant, empathic eyes and your impish, expressive eyebrows want to know you.
This is a hideous disease, as we all know, (at either end of the spectrum) but the beauty of recovery, no matter how fleeting, is always an inspiration to me.
It’s been said that when we hear of a number of people suffering versus witnessing a story like yours, Whitney, it is the difference between statistics and a tragedy.
But your “tragedy” shows triumph so poignantly.
Thank you for sharing your vulnerability, and your victory. With love and shared HOPE,
Susan
A fellow traveler