ME/CFS is so different from a lot of chronic illnesses. With most chronic illnesses people think life is miserable, but they actually still live a happy life. With ME/CFS, thats often not the case. Too many ME/CFS suffers are house or bed bound and have a poor quality of life (this includes me, I'm only 18 years old). That's what makes ME/CFS such a devestating illness
@@santella.story.healing good actually, since 3 months. I got sedation for a verry standard procedure, and miraculously got a lot better. Went from, why am i even here to having dreams and goals again. What exactly happened is still unknown and it's a verry rare thing, but an opportunity I'm not gonna miss. So I'm living my life to the fullest while working together with my doctors to figure out how to keel thid improvement going😁
@@meenik6489 "ME/CFS is so different from a lot of chronic illnesses....I got sedation for a very standard procedure, and miraculously got a lot better" Is it any wonder this "disease" is met with a lot of skepticism? And some people here wish for cancer/HIV/Parkinson's, how often do you hear of cancer being gone after sedation??
@@SelfReflective I don't think it's strange ME/CFS is met with skepticism, as it's not an illness you can easily prove. This also caused me to continuesly doubt the own extent of my illness and disability, even tho I live with it and feel it. What happened to me is verry weird indeed, but it happened and I'm enjoying every second of it. The illnesses you mentioned are verry serious and illnesses that are visible on imagining and testing. Which makes diagnosing and believing it a lot easier. But the human body is verry complicated, and just because we can't prove something, doesn't mean it isn't real. I wouldn't wanna trade with any illness, because just like you don't understand the extent of my illness, I don't fully understand the extent of theirs. I don't exactly know how bad another illness is, and thus if it'd be easier. But I do understand why some people with ME/CFS wish they'd have something else. Because they think they'd be just as sick, but instead of being met with questions and skepticism, they'd be met with answers and often understanding. Me/CFS is not worse than most illnesses in the sense that it's physically worse, but all the doubt surrounding it makes it a hard illness to deal with. I hope you understand what I'm trying to say
Thank you, Davis/Dafoe family, for sharing your heartbreaking story with the world. When I speak out about ME/CFS, when I donate to the Open Medicine Foundation, when I share Forgotten Plague with someone - I think of Whitney every time. This can't be the end of his story. This can't be the end of our story.
The resilience demonstrated by patients like Whitney is truly awe-inspiring. It's difficult to fathom the strength required to navigate a brain and nervous system in such an extreme state of chaos. I can relate to some extent, having spent 14 years grappling with progressively worsening neurological symptoms impacting multiple systems in my body and left me paralyzed, overwhelmed, and confined to bed. Despite seeing numerous specialists and undergoing countless tests, the root cause of my decline remained elusive until I was fortunate enough to find a doctor that assessed and diagnosed me with CCI and AAI. By the time treatment began, I had unknowingly reached a critical state of dislocation and illness. I consider myself lucky to have received stabilization and am doing a lot better, though I still have a long journey ahead. I wanted to share my experience because of how little awareness there is about conditions like CCI and AAI. I just hope more people can get assessed, because if this is a root cause for even a small percentage of us with ME, POTS, ETC and opportunity for assessment and diagnosis could be the missing link people are needing to regain aspects of our health and function.
I have CFS 26 years fybromyalgia 6 pots in the middle now diagnosed heds autism ADHD ime looking at CCI but obviously ime hypermobile in CCI awaitng to go back to upper cervical what have you had done pain my worst symptom but there's also central sensitisation tthrew mcas
@@Truerealism747 Hey Tom, That's a long time you've been facing so much with your health. I relate to a lot of what you shared. I have only been facing this for the past almost 15 years. For years, I've had a lot of debilitating fatigue, especially cognitive, balance, and coordination issues, sensory overload, brain fog, insomnia, headaches, visual issues like oscillopsia and VVM, inflammatory issues, pain, digestive and immune dysfunction. In recent years, I've developed problems with speech production, tachycardia, POTS symptoms, urinary issues, and paralysis, as well as episodes of becoming locked in my body where I could not speak or move, and at its worst, unable to swallow. When I was working with the medical system, they seemed pretty unaware of CCI/AAI, let alone the link between neurological dysfunction and the neck. I had a lot of testing as my condition worsened, and they thought I had MS, but I didn't have lesions. I had a CT with contrast that showed some signs of RCVS, but nothing explained the multiple systems in my body being impacted. The MRI in supine showed clues but nothing significant. I got the most clear answers when I had DMX imaging that showed 9 significant findings, and followed up with rotational CT and flexion and extension showed subluxation. Over the years, I've worked with osteopaths, physiotherapists, acupuncturists, massage therapists, a vestibular therapist, visual rehabilitation specialist, naturopath, occupational therapist, and chiropractor. Everything that was helpful just gave me small amounts of management, but I was never able to gain and maintain progress. In the past 2 years, my health took a free fall that I couldn't slow or stop it. I ran out of time, and surgery was my only option as my condition became critical. Stabilization has so far helped me a lot, and I feel like I got very lucky with that because not everyone who has C1-C2 stabilization does as well. I do know of other people with CCI that, with daily management and an appropriate care plan, are able to gain more function back, especially if there is less permanent laxity and damage in their cervical spine. So although in the end I didn't have that option, it's good to hear others doing better with the right care and a diagnosis. I learned that there are a lot of things that are good for most conditions that are bad for CCI. Like massage can feel nice, but with CCI, it can pressure the brain stem if there is ligament laxity, and although it feels good at first, that can contribute to symptoms later that day or week. Or safe positional acupressure can help with lactic acid and blood flow. Just stuff I wish I knew to look into years ago.
@@Truerealism747 Hey Tom, sorry for the late response. I just realized I missed your reply. Regarding treatment, I ended up requiring stabilization surgery, specifically fusion of my C1-C2 vertebrae. Before the operation, my condition was rapidly deteriorating, and the therapies and coping mechanisms I’d relied on for years were no longer helping. Over the years, I had tried various treatments including PT, vision and vestibular therapy, massage, osteopathy, RMT, acupuncture, mobility care, home care, diet, and supplements. Despite all this helping some I still had consistent had pain, muscle tightening, vision issues, fatigue, balance problems, cognitive problems and more. In the last two years leading up to the surgery, my symptoms worsened significantly, with speech difficulties, limb control issues, swallowing problems, paralysis, and intermittent loss of sight. Despite efforts to manage my condition, I became increasingly housebound and eventually bedbound. I fit the criteria for various conditions like fibromyalgia, chronic pain, ME, POTS, and dysautonomia, but nothing that pinpointed the root cause of my multi-system symptoms. Although imaging revealed abnormalities like signs of RCVS and vasculitis and higher white matter, the exact cause of my symptoms remained unclear. I eventually had my C1-C2 fused due to severe instability and symptoms. While surgery was risky, it was necessary given the severity of my condition. Thankfully, I didn't experience any major complications post-surgery, but I'm still in the process of healing and rehabilitating. While surgery was the right choice for me, I'm aware that some individuals with CCI and AAI who manage their symptoms without surgery through daily care. I recognize that each person's situation is unique, and what works for one may not work for another. Rachel
I thank you for making people understand what life with ME is like, and how bad it can become. I hope it helps him but also for many others. I have ME and Fibromyalgia for 6 years and slowly my world is crumbling, not been able to do the things I use to do and my cognitive function are messing up. Lights, noise, smells, weather, talking and my surrounding are affected me. making me so weak, sick and so much pain from head to toe, I spend more than 20 hours in bed. I cannot enjoy life with my son can only move around in a powerchair less than an hour when possible if I can get out of bed. But every form of small activity make me so sick and severe pain then i go into paralysis even talking is so draining. It's horrible when people don't understand and medical doctors cannot help, so lonely and scary. I feel like I am dying every day to try and live a little. we will pray for him and us.
Exactly, same for me. Here’s just a little that I can manage to write. I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome! agree with you how horrible it is when people around us and drs don’t understand!!! It’s absolutely scary. Worst still , my specialist of 10 years abandoned my care by going on long leave, then indefinite leave , then resigned. She was open to me/cfs although not familiar!!! They replaced her with someone from a different speciality who supposedly went through 2 years of pain medicine training but knows nuts about me/cfs. Thinks we should do more exercise and activity , meditation. CBT , get etc etc. scolded me for using term me/cfs because she’s not familiar with it, and later realised she knew it as cfs and insists she wants to refer to it as cfs!!! She’s out of date and not current in her knowledge. She created more trauma for me.
Such a lovely family 💜 healing thoughts and prayers to Whitney . 🙏🙏 I have so much faith in professor Ron Davis . Thank you all for all your hard work that goes into ME/CFS . Forgotten plague is a very moving and interesting watch . X💙💜💙
Rolling tears..... Absolutely heartbreaking. I wish that one of the wealthiest people could see this and provide significant research funds to progress the very good work being done by OMF and Nancy Klimas and find solutions more quickly
- I've Suffered Over 32 YEARS Absolute HELL with "Chronic Fatigue Syndrome"/ME/Fibromyalgia/"Severe Mental Impairment" here in Hull,UK;& I'll be Bloody GLAD/Relieved When the Scientist's find a PROPER CURE for it!!!! - I Can't find a girlfriend/wife Because of having them!!.... :( - Am Always falling asleep,etc,etc!!
I too suffer from this and like many, gardening is my main source of therapy, yet I weaken as time passes. I fear I soon won't be able to engage in my only outlet to maintain my sanity. This illness, it makes me question God's existence. Why would he create such an evil thing, and inflict it upon so many good people, with no known way out? I would take cancer, HIV, or Parkinson's over this. Even a terminal illness is preferable to this indefinite stasis of sickness and accompanying feelings of utter hopelessness and despair. I often wonder if it's even worth it.
Steve. I've had CFS for 15 years & somehow pushed myself to work full time until 2 years ago when I could not continue. Just got worse when I left workforce. It's sad to say, but I get jealous when I hear about someone getting a cancer diagnosis, at least they'll be cured, or they'll be out of their misery! This disease is torture! If not for my kids, not sure where I'd be. Please find your reason or purpose to keep going! You're not alone! ☺
I know 100% what you mean about your reaction to people's diagnosis of other, more common illnesses that have a certain outcome, usually with an A or B result, not stagnation and suffering like this bizarre mother-nature created torture chamber. I take solace in hearing your words and that someone else truly understands. It's impossible for even the 'expert' doctors - or 𝗮𝗻𝘆𝗼𝗻𝗲 for that matter - who doesn't have the illness, to understand.
s37d. You've got that right! There's no visible sign of illness! I had a SS hearing last week & was petrified that the judge wouldn't believe me, even with a 5" stack of records over 15 years. I really just want to go live alone in the woods for a month, do nothing & speak to no one, maybe that would help. Probably not! I know of no one personally who has this so no one really to talk to.
Wow, amazing how similar you story is to mine. Jerk judge here in Boston denied my claim outright (in appeal process now), despite having, like you said, stacks of evidence from top notch doctors from hospitals strewn all over Boston, such as MGH, Beth Israel Deaconess, Mass Eye&Ear and Brigham and Women's. He just rudely and condescendingly denied me due to the bogus claim that he used of a tiny shred of evidence from when i was FIRST diagnosed with the illness and had the fortitude to SIT on a lawn tractor - mind you not push a lawn mower, but sit and steer it - and he made it seem like I was farmer Joe, when in reality I was pushing myself just to do something, anything, order to feel alive. By the time I saw this judge my illness had degraded so significantly that I wouldn't even have been able to sit on a tractor and operate it, something he didn't even bother to ask me. I could barely even make it into the ODAR office. He was rude, ignorant, patronizing and cared not one shred about my health or my future, and he certainly didn't spend even one minute researching this illness or reading the 5 doctor's notes saying "this man is disabled". I felt truly humiliated and disgraced, in addition to the wasted time, money and precious little effort I can afford to expend. I'm sure, though, if I was a welfare leech with 5 kids and an ankle that didn't heal right, or some other fake disability, I'd be approved for everything and then some. I also completely relate to your yearning to live alone in the woods with no one around; that would be ideal, even if I was healthy. Something like Jeremiah Johnson, even, where I'm being hunted by natives and my life's at risk - at least I'd have a chance - at least I'd have my health. I don't know of anyone else who has this debilitating illness it either. If you want to talk some more feel free to email me cyrax38@comcast.net (𝒃𝒕𝒘 𝑰 𝒂𝒎 𝒃𝒐𝒕𝒉 𝑺𝒕𝒆𝒗𝒆 & 𝒔37𝒅, 𝒋𝒖𝒔𝒕 𝒕𝒘𝒐 𝒔𝒆𝒑𝒂𝒓𝒂𝒕𝒆 𝒂𝒄𝒄𝒐𝒖𝒏𝒕𝒔 𝒖𝒏𝒅𝒆𝒓 𝒔𝒂𝒎𝒆 𝒆𝒎𝒂𝒊𝒍 𝒐𝒏 𝒚𝒐𝒖𝒕𝒖𝒃𝒆)
I have severe CFS for three years. I live alone 😔 on disability in a nice apartment. I'm going to have to move to assisted living soon. I can't do this much longer. At least I would be around other people.
If it helps Dr Davies, you are a really brave and driven man. I think about you most days at some point. The hope you are giving us..but at the same time i hope you don't drive yourself into the ground. Best wishes from england
This made me weep, for your family and mine. All I have left is my gardening, but I keep cutting back and returning beds to grass, because I can't take care of my garden. I used to travel and I'm an artist (paper, costuming, embroidery). When I moved closer to home, I always said that it wasn't over and I'm going to complete the other half of the Appalachian Trail...but most days are spent in bed, in silence. I can only tolerate touch because of prescription medications, hugs hurt; doctors don't help, or say they don't treat it. I fear I will lose my home, that I worked so hard for, but then again...I go through stretches when I can't get out or feed myself. So, this story scares me...
junaidesse yes I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome!
@@leasalonga2473 sorry ur struggling so much. Its easier said than done when ur abused, but you maybe stuck with ur mother and the only thing u maybe can do is ignore her. Try Seeking small pleasures like A book, movie, online friends. Don' t lose hope that maybe u feel better or find support or even that ur mother has a change of heart.
I was finally told by my doctor I have this condition. I’m happy that I finally found a good doctor , but in a way . There’s no cure as of today . I’m so sorry that he is going through this to that extreme. I’m lucky in a sense that my condition is not at that point yet . I struggle everyday with aches and pains and insomnia. It’s a disease that tears you from a good life and you can feel so isolated and alone . I really pray and hope that one day we find a cure . A miracle pill or something. I’m so saddened for this poor young man . If I could give him the rest of my energy . I would .
I have fibro and Lupus I know what that feels like. I have been feeling guilty because some time I can't lisend to my husband because it hurt and I have no ide what to say back. and when he talk it hurt my skin. I love him so much. The guilty of no working feel so useless. I use to love ti dance music lights. all my dreams are gone. When I feel ok I try to fine work but I can only do it for a week then I get very sick. I don't look sick but there are days that I feel I will not make it. If you have Cancer people do anything if you have fibro people think you are lazy. I have been sick for over 10 years. So lonely.
Anng G if you need to talk I've been thru similar - 10 yrs I've been ill. It's stolen my joy, friends life future everything. I'm still hoping to get better ... But - it's like trying to climb out of a 20ft deep muddy hole.... Anyway my heart broke for you cos I could've written it. Just know someone probably 10000s of miles away is thinking of you & praying for you....
Ємрrєѕѕ here’s a bit of my story and there’s more that I wrote to another comment.....I’m very unwell at the moment so cannot write much but would like to have you as a friend to talk with. I’m so sorry that you are suffering with this too. Me too - about 10 plus years. I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome!
I relate a lot to what you shared. Being so debilitated and the isolation of people not understanding the severity and that mind over matter won’t fix us. Mind over matter is just how we continue to cope with so much life and function ripped away from us. People with MS were treated like their illness wasn’t real until the imaging for it was discovered. CTE doesn’t show up on imaging at all. All to say that folks with ME and autoimmune dysfunction, we deserve to be believed and understood. We aren’t lazy or weak. We are fighting and this is us doing our best.
So sorry for your family. Son if he has major depression. He can be helped!!! It's intense. I PROMISE it will help. The CFS IS TERRIBLE. GOD BLESS HIM. ALL YOUR FAMILY
I once read a girl with CFS being asked what it felt like to have CFS and she said it’s like being buried alive. I’ve been diagnosed with ME/CFS. I’m not as severe and I think I’ve had it at least 20 years, I’m limited to work at a computer and laying around. Your vibrant self is sucked away. I’m so sad to see Whitney and I can only imagine having all the Knowledge Ron has it’s frustrating to not fix him right now. My heart goes out to your family. I’ve been listening to all of his dad’s lectures and info and I’m thinking of you and hoping you find something to help him with his future. My son is ill, with a brain disorder, seeing your child ill, and not being able to fix it is an awful sadness❤️❤️
Thank you all for commenting . I’ve had cfs for 10 yrs now. Cannot even believe it’s been that long. I’ve tried everything but cbd. I need to educate myself ASAP on this
Lovely family, but what if you only have an elderly mother 20 miles away and the UK state doing their best to harass you, remove benefit and support. The sub-text in the UK to which they would never admit to I'd to try to force me/CFS victims into suicide.
What a touching tribute to your son. I sent him some heart energy for him to use as needed. I am a healing touch practitioner and have had me/cfs, fibromyalgia for 12 years. Mine is not as severe as Whitneys. I have a question. Would be be open to receiving healing touch? There is no need to touch him and the different techniques can be done above his body silently. I worked at hospice doing healing touch on my patients for over 2 years plus I worked on the staff. I live in Florida near Daytona beach but there are ht practitioners everywhere. May God bless him and all who care about and for him.
As hard as it is Whitney try & keep your chin up, I will not say I was the same as you as everyone is different but I was originally in a similar state to you. I was 36, 2 daughters who were early teenagers & fortunately a very loving, caring wife. Your family looks very caring & that's what you need around you. The first few years were the worst, 21 years on it's better but each day is a challenge not to exceed your limitations. An interest of some sort is helpful, I've found while my ability to travel is limited photography provides a form of beneficial therapy for me. Rejoice with the small daily accomplishments, no matter how small and try to stay positive as hard as that is. Cheers.
Ms. Dafoe says he got worse (paraphrasing) "two Christmases ago". She would need to confirm this, but I believe that's when he started Rituximab, and declined markedly after that. The drug may work for a percentage, but it clearly made him worse.
I too am in this condition and searching for a good video to show family to understand.. I want to point out that high-pitched music - like the piano you are using for a soundtrack - is absolutely horrible for us.. I could hardly listen, please consider swapping a much softer soundtrack.. high pitches like piano, bells, violin, flute etc are absolute torture. I have to stop watching a lot of films due to this, just fyi.. now you know why you are hearing less music.. it gets too much.. I can rec a few that are truly soothing and calm the nervous system: Deva Premal, Snatum Kaur, mantras and chanting are largely great overall, but some do use bells or other piercing sounds.. I have had the single biggest help by going strick keto in-out a lot, but no sugar (must incl all grains) pufa's, or stimulants. I also am greatly assisted doing colemas to implant probiotics, kefir, gcmaf yogurt, restore, and other soil organisms I get in clays and shilajit etc.. I have found the gut is where to work.. and fasting is not always a choice but seems to boost immunity, then I have to start all over eating again.. collagen-rich bone broth I have going as my staple always, blueberries in yogurt and cream (im ok w/non-milk dairy), and absolutely do best on good fats whenever I can get food down, ghee and coconut oil in hot blended tea is wonderful and easy to get down.. cannabis is imo crucial and ought to be in every cancer ward, it works amazingly to stop nauseau, stimulate appetite, hold food down, calm nervous system, calm ibs, repair gut, alter pain much better than any nsaid, sleep, joint and muscle pain.. what else comes close to all that? I just take a nightly capsule, and vape from an epen but I only intake clean concentrates, never smoke plant material although do vape it. Thanks very much for putting this video together, how I would like to be in touch with all of you..
I have CFS (since age 19 & am now 36) & have been on Lamotrigine for the past 10 years, but that's to help boost the effect of an antidepressant I'm on for depression. When the depression lifts (it comes in waves) & I am feeling hopeful & positive, there is still no change to the CFS symptoms. The type of tiredness & mindset that comes with depression goes away but the actual physical & mental exhaustion (a whole other level to the depression heaviness), extensive pain, difficulty sleeping, cognitive issues, noise intolerance etc remain just as strong as ever. After time I find it hard to remain positive as I realise how limited I might be for life. Have you found anti-epileptic meds helpful for CFS symptoms? Or is it someone else who's found them helpful?
Hi I’m sorry that Whitney is in so much pain. I’m as sick of not worse than him. At least, Whitney still has parents and family who still love him! I’m worse and I have no One! I live with my mum who does help out begrudgingly with some basic stuff but she’s extremely abusive towards me. I have to listen to daily berating and nagging from her. She’s even told me to kill myself! She thinks I’m lazy. Won’t accept how sick I am. Won’t watch videos or read articles on me/cfs. I have useless ignorant drs. My room and home has become cluttered due to my lack of energy just as in this video but my mum won’t accept that it’s due to pain & fatigue. I now have a gastric ulcer so can only eat or drink in small amounts. My mum is continually focused on why I leave part of my drink and food in the fridge! If it’s too painful to drink a certain drink for that day or days, then I have to find something else but she will nag me and try to control what I eat or drink because it takes space in the fridge. She’s a pig and will eat everything up even if she’s not hungry. I often have to beg her to make me something to eat. Often if she’s not in a good mood, she will deny me food! She would never ever serve it to me in the bedroom, so Whitney, as bad as your situation is, know that you are fortunate to still have parents and a sister who stand by you and support you. I have no one!!! At most my mum will sometimes cook and i will have to force myself to get to the kitchen to get it! You know how all of you with me/cfs know how little energy you have? Well now my mum has gone deaf but she won’t accept it. She’ll say it’s my speech that’s bad and that I mumble. She won’t accept that I have no energy to shout out to her repeatedly because she can’t hear me - she expects me to shout out from bedroom to kitchen and then curses me. A loving family member, knowing they are deaf will at least come close to the bedroom. When I wake up really sick, I ask her make soft eggs for me. I still have to get up to make my own toast and seasonings on it. She will shout at me, Fuckwit, your eggs are ready; come and get it! When I’m in severe pain and survival mode ( cos I’m not hungry but have burning ulcer pain and nausea from meds, have to force self to eat.) Am buttering my toast and carrying it and eggs to front room, she will scream at me to put soya sauce in cupboard and create a fight then and there. She will continually make demands on me!!! She knows that I’ve got an injured R shoulder girdle and neck pain but still make demands on me to carry things! I’m sitting on the corner of my bed in severe pain and it’s so incredibly bad, I feel like dying. I’m not sure what to do and feel that maybe vomiting it up may make me feel better. Am sitting dizzly on the edge of my bed, waiting for the vomiting to start. She comes in and shouts at me, whether I switched the heater on. I reply No, but the deaf woman can’t hear and asks again and I reply no. Me/cfs sufferers, you know how you don’t have much energy but how bad it is when you are having a flare up episode. She makes sarcastic comments at how sweet and soft my voice is! When you come in from the garden on a hot summer’s day, having stayed there until the sun has gone down, of course, it’s commonsense that the house will be hotter but her first question to me upon coming in, is did you switch on the heater!!! Eventually, I run to the bathroom and start vomiting and wretching! It was difficult to vomit! No care, empathy or apology from her.
Hi! I'm really sorry to hear about your horrible situation :( As a patient who's had ME for 13 years, 7 of which housebound, I understand... Many people (including most doctors I've seen, almost all of my old friends and sometimes even my own family) often don't believe me, mistreat me and belittle all of my diseases, going as far as saying that I'm pretending, that I'm lazy, that I'm crazy or other absurdities, instead of realizing I'm actually very sick. Please consider joining the MEAction page on facebook or other ME communities; they are very friendly and you'll feel accepted and understood. Know that you are not alone in this! We are all by your side :)
That is so sad your mother calls you names and isn’t kind to you. I am so sorry. I have severe ME too. I will pray for you. God says... “when your mother and father forsake you, I will take care of you”.... Psalm 27:10... I pray your mother’s heart will become softer towards you and God will provide a way for better care for you.... 🍃💜🍃🙏🌸
Alecia Bjorlie Thank you so much. I’m going through an extremely hard time at present. My ME is so severe that no one really understands. Worst still, I have an injury to my R side and too much typing makes my arm seize up and then I can’t type. Is there a way we can msg privately on here or FB? I have had a huge exposed cavity in my mouth for 3 months now and am being denied care and pain relief. I’m concerned I’m going to end up with sepsis. On top of this, I have a gastric ulcer and my dog has a growing tumour on her neck. The vet I took her to last year, took me for a ride saying that it’s an infection from her teeth. He extracted a lot of her teeth against my wishes and I had to borrow $2000 for her care. She was misdiagnosed by 2 vets. Then in April, he did another FNA biopsy, charged me another $300 and wants another $2200 or more to remove the lump. He has never done this surgery before and it’s a complicated one. I took her to specialist vets and they estimated it will cost $6000, just an estimate and not a quote.They told me the 2nd FNA was inconclusive and it might be cancer! My dog is my best pal and reason for living. It will cost me in the region of $6000 or more for myself to get my tooth fixed and the same for my dog. So I need anywhere from $12000 to $15000 for myself and my dog and I have so many other ongoing health issues. My mum continues to bully me. Due to my stomach pain and now dental, I can barely eat/chew so I have to eat in small amounts and I can’t finish my food and drinks. My mum will keep nagging, throwing my food/fruits and drinks out or breaking containers or stacking a cup into a cup which contains drink. She’s so unhygienic with my food. I would really appreciate prayers.
Alecia Bjorlie Hi again, I have useless Gps, sad to say. I’m housebound and bedridden and this GP just can’t get it!!! He’s worse than a non - educated professional. He’s so annoying and frustrating. Early in the year , I found some literature on the cdc website explaining that Drs often do t realise how sick some patients with me/cfs are as it may not be visible . Eventually such patients start to drop off from visiting drs because they become too ill to travel. He says, yeah, yeah, yeah as though he knows it all. Thank goodness for Covid 19 because it allows telephone consultations which the gp would not agree to previously. My last consult was 35 seconds just to get a monthly script but without Covid, I’d be forced to travel and be exposed to viruses and bacteria. They get paid for a 15 minute consult when it was only 35 secs. Back to original topic, I suffer from severe nausea daily and one of the triggers is the cold and public transport especially the bumpiness of the train. I have explained to them numerous times that I cannot travel on public transport ( travelling in the car is already bad enough). After having a conversation with him explaining all this for the 100th thousand time, he asks can you just show up at xyz hospital? I ask which one and he’s still talking about the one that will take me 3-4 hours of travel via public transport with multiple changes. I’m so lethargic with this dental infection that I can barely sit up. I don’t know how to get through to such drs without being rude and there are so many of them!!! Have you encountered this? How do you answer them? Someone suggested I say, which part of bedridden do you not understand, but that’s rude and you know drs and their big ego!!!
When trying to explain this to family definitive medical research is sometimes helpful. Since there is so little of that available right now here is a link that might help. workwellfoundation.org/resources/#videolinks When dealing with disability Claims The Work well foundation has one of the only real tests for CFS. It’s not cheap but it was one of the best things I have done to improve my quality of life. workwellfoundation.org/testing-for-disability/ The work they do is only on moderate cases since they can not do a stress test for someone that can not stand up. But the information is still true just more extreme.
Stumbled onto this again.. that piano is just horrible for we with ME.. could not endure such noise pollution. Please folks making films for ME - just dont put any other noises that our brain cannot stand. It is extra exertional load so very harmful. Only soft, slower than voices like gentls guitar, harp, gamalon.
Gardening is a mistake when you have CFS. It will just make you worse. You first have to learn to do nothing till you feel OK doing nothing. Only then can you do more.
I cry for you, and I have it too. family, thanks for reaching out, but I can say honestly that life doesn't mean anything anymore. you should allow him to go back to God, my opinion only.
Leah DiGiallonardo I've thought about it too for myself. Though that line of thought does not come from extreme grief of loss. I've been like this long enough to understand that there is nothing that makes me want to live. I want to gooooo.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven. To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
He has completely held his family as hostages, as if he is the most important one in the family. Tragic for them. I hope they can find their own happiness.
What a repugnant thing to think, let alone say. Family care for people severely debilitated by this devastating illness through love. The tragedy is seeing someone you deeply love endure such illness, as well as the loved family member suffering.
@@fozzybear8878 If you don't have lived experience of severe ME, or have not seen and know the multiple symptoms this devastating illness causes (through being a carer) I can understand how difficult it may be to appreciate that people endure this for years. Living in one room, isolated from all that you wish to do, be, and were. Perspective of the sign becomes pretty insignificant. The family and carers obviously are aware of this requirement. Sick people are extremely grateful for having such loving families. That much I do know.
@@Lchristyhastings Well, it seems he does write great big long essays, a la this: facebook.com/whitneydafoe/posts/264068101797556?__tn__=K-R But it seems like he says he is not eating, so I guess he lives on air.
I'm 45 years into this. I got it at age 21. I just turned 67. Where did my life go? I sure can't remember it.
😞❤
💜
I’m 61 this year (2022) and got this in 1990…
Same. 66 and well over 40 years.
ME/CFS is so different from a lot of chronic illnesses. With most chronic illnesses people think life is miserable, but they actually still live a happy life. With ME/CFS, thats often not the case. Too many ME/CFS suffers are house or bed bound and have a poor quality of life (this includes me, I'm only 18 years old). That's what makes ME/CFS such a devestating illness
How r u now??
@@santella.story.healing good actually, since 3 months. I got sedation for a verry standard procedure, and miraculously got a lot better. Went from, why am i even here to having dreams and goals again. What exactly happened is still unknown and it's a verry rare thing, but an opportunity I'm not gonna miss. So I'm living my life to the fullest while working together with my doctors to figure out how to keel thid improvement going😁
@@meenik6489 "ME/CFS is so different from a lot of chronic illnesses....I got sedation for a very standard procedure, and miraculously got a lot better"
Is it any wonder this "disease" is met with a lot of skepticism? And some people here wish for cancer/HIV/Parkinson's, how often do you hear of cancer being gone after sedation??
@@SelfReflective I don't think it's strange ME/CFS is met with skepticism, as it's not an illness you can easily prove. This also caused me to continuesly doubt the own extent of my illness and disability, even tho I live with it and feel it. What happened to me is verry weird indeed, but it happened and I'm enjoying every second of it. The illnesses you mentioned are verry serious and illnesses that are visible on imagining and testing. Which makes diagnosing and believing it a lot easier. But the human body is verry complicated, and just because we can't prove something, doesn't mean it isn't real.
I wouldn't wanna trade with any illness, because just like you don't understand the extent of my illness, I don't fully understand the extent of theirs. I don't exactly know how bad another illness is, and thus if it'd be easier. But I do understand why some people with ME/CFS wish they'd have something else. Because they think they'd be just as sick, but instead of being met with questions and skepticism, they'd be met with answers and often understanding. Me/CFS is not worse than most illnesses in the sense that it's physically worse, but all the doubt surrounding it makes it a hard illness to deal with. I hope you understand what I'm trying to say
@@meenik6489 Yes, yes I do. Nice answer, and I wish you all the best in the days ahead.
44 years into CFS. I used to climb mountains and backcountry ski. I crawl around the house some days.
This is the Reality of what I am facing. I am wasting away. I feel for your pain not in vain. Bless you for your love of your son
Thank you, Davis/Dafoe family, for sharing your heartbreaking story with the world. When I speak out about ME/CFS, when I donate to the Open Medicine Foundation, when I share Forgotten Plague with someone - I think of Whitney every time. This can't be the end of his story. This can't be the end of our story.
The resilience demonstrated by patients like Whitney is truly awe-inspiring. It's difficult to fathom the strength required to navigate a brain and nervous system in such an extreme state of chaos.
I can relate to some extent, having spent 14 years grappling with progressively worsening neurological symptoms impacting multiple systems in my body and left me paralyzed, overwhelmed, and confined to bed. Despite seeing numerous specialists and undergoing countless tests, the root cause of my decline remained elusive until I was fortunate enough to find a doctor that assessed and diagnosed me with CCI and AAI. By the time treatment began, I had unknowingly reached a critical state of dislocation and illness. I consider myself lucky to have received stabilization and am doing a lot better, though I still have a long journey ahead.
I wanted to share my experience because of how little awareness there is about conditions like CCI and AAI. I just hope more people can get assessed, because if this is a root cause for even a small percentage of us with ME, POTS, ETC and opportunity for assessment and diagnosis could be the missing link people are needing to regain aspects of our health and function.
I have CFS 26 years fybromyalgia 6 pots in the middle now diagnosed heds autism ADHD ime looking at CCI but obviously ime hypermobile in CCI awaitng to go back to upper cervical what have you had done pain my worst symptom but there's also central sensitisation tthrew mcas
@@Truerealism747 Hey Tom,
That's a long time you've been facing so much with your health. I relate to a lot of what you shared. I have only been facing this for the past almost 15 years. For years, I've had a lot of debilitating fatigue, especially cognitive, balance, and coordination issues, sensory overload, brain fog, insomnia, headaches, visual issues like oscillopsia and VVM, inflammatory issues, pain, digestive and immune dysfunction. In recent years, I've developed problems with speech production, tachycardia, POTS symptoms, urinary issues, and paralysis, as well as episodes of becoming locked in my body where I could not speak or move, and at its worst, unable to swallow.
When I was working with the medical system, they seemed pretty unaware of CCI/AAI, let alone the link between neurological dysfunction and the neck. I had a lot of testing as my condition worsened, and they thought I had MS, but I didn't have lesions. I had a CT with contrast that showed some signs of RCVS, but nothing explained the multiple systems in my body being impacted. The MRI in supine showed clues but nothing significant. I got the most clear answers when I had DMX imaging that showed 9 significant findings, and followed up with rotational CT and flexion and extension showed subluxation.
Over the years, I've worked with osteopaths, physiotherapists, acupuncturists, massage therapists, a vestibular therapist, visual rehabilitation specialist, naturopath, occupational therapist, and chiropractor. Everything that was helpful just gave me small amounts of management, but I was never able to gain and maintain progress. In the past 2 years, my health took a free fall that I couldn't slow or stop it. I ran out of time, and surgery was my only option as my condition became critical. Stabilization has so far helped me a lot, and I feel like I got very lucky with that because not everyone who has C1-C2 stabilization does as well.
I do know of other people with CCI that, with daily management and an appropriate care plan, are able to gain more function back, especially if there is less permanent laxity and damage in their cervical spine. So although in the end I didn't have that option, it's good to hear others doing better with the right care and a diagnosis. I learned that there are a lot of things that are good for most conditions that are bad for CCI. Like massage can feel nice, but with CCI, it can pressure the brain stem if there is ligament laxity, and although it feels good at first, that can contribute to symptoms later that day or week. Or safe positional acupressure can help with lactic acid and blood flow. Just stuff I wish I knew to look into years ago.
@@Truerealism747
Hey Tom, sorry for the late response. I just realized I missed your reply.
Regarding treatment, I ended up requiring stabilization surgery, specifically fusion of my C1-C2 vertebrae. Before the operation, my condition was rapidly deteriorating, and the therapies and coping mechanisms I’d relied on for years were no longer helping. Over the years, I had tried various treatments including PT, vision and vestibular therapy, massage, osteopathy, RMT, acupuncture, mobility care, home care, diet, and supplements. Despite all this helping some I still had consistent had pain, muscle tightening, vision issues, fatigue, balance problems, cognitive problems and more.
In the last two years leading up to the surgery, my symptoms worsened significantly, with speech difficulties, limb control issues, swallowing problems, paralysis, and intermittent loss of sight. Despite efforts to manage my condition, I became increasingly housebound and eventually bedbound. I fit the criteria for various conditions like fibromyalgia, chronic pain, ME, POTS, and dysautonomia, but nothing that pinpointed the root cause of my multi-system symptoms.
Although imaging revealed abnormalities like signs of RCVS and vasculitis and higher white matter, the exact cause of my symptoms remained unclear. I eventually had my C1-C2 fused due to severe instability and symptoms. While surgery was risky, it was necessary given the severity of my condition. Thankfully, I didn't experience any major complications post-surgery, but I'm still in the process of healing and rehabilitating.
While surgery was the right choice for me, I'm aware that some individuals with CCI and AAI who manage their symptoms without surgery through daily care. I recognize that each person's situation is unique, and what works for one may not work for another.
Rachel
I thank you for making people understand what life with ME is like,
and how bad it can become.
I hope it helps him but also for many others.
I have ME and Fibromyalgia for 6 years and slowly my world is crumbling,
not been able to do the things I use to do and my cognitive function are messing up.
Lights, noise, smells, weather, talking and my surrounding are affected me.
making me so weak, sick and so much pain from head to toe, I spend more than 20 hours in bed.
I cannot enjoy life with my son can only move around in a powerchair less than an hour when possible if I can get out of bed.
But every form of small activity make me so sick and severe pain then i go into paralysis even talking is so draining.
It's horrible when people don't understand and medical doctors cannot help, so lonely and scary.
I feel like I am dying every day to try and live a little.
we will pray for him and us.
Exactly, same for me. Here’s just a little that I can manage to write. I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome! agree with you how horrible it is when people around us and drs don’t understand!!! It’s absolutely scary. Worst still , my specialist of 10 years abandoned my care by going on long leave, then indefinite leave , then resigned. She was open to me/cfs although not familiar!!! They replaced her with someone from a different speciality who supposedly went through 2 years of pain medicine training but knows nuts about me/cfs. Thinks we should do more exercise and activity , meditation. CBT , get etc etc. scolded me for using term me/cfs because she’s not familiar with it, and later realised she knew it as cfs and insists she wants to refer to it as cfs!!! She’s out of date and not current in her knowledge. She created more trauma for me.
Such a lovely family 💜 healing thoughts and prayers to Whitney . 🙏🙏 I have so much faith in professor Ron Davis . Thank you all for all your hard work that goes into ME/CFS . Forgotten plague is a very moving and interesting watch . X💙💜💙
Rolling tears..... Absolutely heartbreaking. I wish that one of the wealthiest people could see this and provide significant research funds to progress the very good work being done by OMF and Nancy Klimas and find solutions more quickly
- I've Suffered Over 32 YEARS Absolute HELL with "Chronic Fatigue Syndrome"/ME/Fibromyalgia/"Severe Mental Impairment" here in Hull,UK;& I'll be Bloody GLAD/Relieved When the Scientist's find a PROPER CURE for it!!!! - I Can't find a girlfriend/wife Because of having them!!.... :( - Am Always falling asleep,etc,etc!!
Do you get benefits
I too suffer from this and like many, gardening is my main source of therapy, yet I weaken as time passes. I fear I soon won't be able to engage in my only outlet to maintain my sanity. This illness, it makes me question God's existence. Why would he create such an evil thing, and inflict it upon so many good people, with no known way out? I would take cancer, HIV, or Parkinson's over this. Even a terminal illness is preferable to this indefinite stasis of sickness and accompanying feelings of utter hopelessness and despair. I often wonder if it's even worth it.
Steve. I've had CFS for 15 years & somehow pushed myself to work full time until 2 years ago when I could not continue. Just got worse when I left workforce. It's sad to say, but I get jealous when I hear about someone getting a cancer diagnosis, at least they'll be cured, or they'll be out of their misery! This disease is torture! If not for my kids, not sure where I'd be. Please find your reason or purpose to keep going! You're not alone! ☺
I know 100% what you mean about your reaction to people's diagnosis of other, more common illnesses that have a certain outcome, usually with an A or B result, not stagnation and suffering like this bizarre mother-nature created torture chamber. I take solace in hearing your words and that someone else truly understands. It's impossible for even the 'expert' doctors - or 𝗮𝗻𝘆𝗼𝗻𝗲 for that matter - who doesn't have the illness, to understand.
s37d. You've got that right! There's no visible sign of illness! I had a SS hearing last week & was petrified that the judge wouldn't believe me, even with a 5" stack of records over 15 years. I really just want to go live alone in the woods for a month, do nothing & speak to no one, maybe that would help. Probably not! I know of no one personally who has this so no one really to talk to.
Wow, amazing how similar you story is to mine. Jerk judge here in Boston denied my claim outright (in appeal process now), despite having, like you said, stacks of evidence from top notch doctors from hospitals strewn all over Boston, such as MGH, Beth Israel Deaconess, Mass Eye&Ear and Brigham and Women's. He just rudely and condescendingly denied me due to the bogus claim that he used of a tiny shred of evidence from when i was FIRST diagnosed with the illness and had the fortitude to SIT on a lawn tractor - mind you not push a lawn mower, but sit and steer it - and he made it seem like I was farmer Joe, when in reality I was pushing myself just to do something, anything, order to feel alive. By the time I saw this judge my illness had degraded so significantly that I wouldn't even have been able to sit on a tractor and operate it, something he didn't even bother to ask me. I could barely even make it into the ODAR office. He was rude, ignorant, patronizing and cared not one shred about my health or my future, and he certainly didn't spend even one minute researching this illness or reading the 5 doctor's notes saying "this man is disabled". I felt truly humiliated and disgraced, in addition to the wasted time, money and precious little effort I can afford to expend.
I'm sure, though, if I was a welfare leech with 5 kids and an ankle that didn't heal right, or some other fake disability, I'd be approved for everything and then some. I also completely relate to your yearning to live alone in the woods with no one around; that would be ideal, even if I was healthy. Something like Jeremiah Johnson, even, where I'm being hunted by natives and my life's at risk - at least I'd have a chance - at least I'd have my health. I don't know of anyone else who has this debilitating illness it either. If you want to talk some more feel free to email me cyrax38@comcast.net (𝒃𝒕𝒘 𝑰 𝒂𝒎 𝒃𝒐𝒕𝒉 𝑺𝒕𝒆𝒗𝒆 & 𝒔37𝒅, 𝒋𝒖𝒔𝒕 𝒕𝒘𝒐 𝒔𝒆𝒑𝒂𝒓𝒂𝒕𝒆 𝒂𝒄𝒄𝒐𝒖𝒏𝒕𝒔 𝒖𝒏𝒅𝒆𝒓 𝒔𝒂𝒎𝒆 𝒆𝒎𝒂𝒊𝒍 𝒐𝒏 𝒚𝒐𝒖𝒕𝒖𝒃𝒆)
I would like to hear any updates on your disability claims. 14 years with this for me now.
I've felt this, you wish you were dead. On of the worse disease that exists. Takes everything from you.
I have severe CFS for three years. I live alone 😔 on disability in a nice apartment. I'm going to have to move to assisted living soon. I can't do this much longer. At least I would be around other people.
If it helps Dr Davies, you are a really brave and driven man. I think about you most days at some point. The hope you are giving us..but at the same time i hope you don't drive yourself into the ground. Best wishes from england
Very very sad. I was like that at one time. There is a terrible "invisible" battle taking place on the inside of him.
This made me weep, for your family and mine. All I have left is my gardening, but I keep cutting back and returning beds to grass, because I can't take care of my garden. I used to travel and I'm an artist (paper, costuming, embroidery). When I moved closer to home, I always said that it wasn't over and I'm going to complete the other half of the Appalachian Trail...but most days are spent in bed, in silence. I can only tolerate touch because of prescription medications, hugs hurt; doctors don't help, or say they don't treat it. I fear I will lose my home, that I worked so hard for, but then again...I go through stretches when I can't get out or feed myself.
So, this story scares me...
Christy T I'm sorry you have to go through all this.
junaidesse yes I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome!
@@leasalonga2473 sorry ur struggling so much. Its easier said than done when ur abused, but you maybe stuck with ur mother and the only thing u maybe can do is ignore her. Try Seeking small pleasures like A book, movie, online friends. Don' t lose hope that maybe u feel better or find support or even that ur mother has a change of heart.
I was finally told by my doctor I have this condition. I’m happy that I finally found a good doctor , but in a way . There’s no cure as of today . I’m so sorry that he is going through this to that extreme. I’m lucky in a sense that my condition is not at that point yet . I struggle everyday with aches and pains and insomnia.
It’s a disease that tears you from a good life and you can feel so isolated and alone . I really pray and hope that one day we find a cure . A miracle pill or something. I’m so saddened for this poor young man . If I could give him the rest of my energy . I would .
I thought I saw the worst case until I saw this one.
I’m praying for Whitney. I know he will make it. It has to. He’s my hero.
I have fibro and Lupus I know what that feels like. I have been feeling guilty because some time I can't lisend to my husband because it hurt and I have no ide what to say back. and when he talk it hurt my skin. I love him so much. The guilty of no working feel so useless. I use to love ti dance music lights. all my dreams are gone. When I feel ok I try to fine work but I can only do it for a week then I get very sick. I don't look sick but there are days that I feel I will not make it. If you have Cancer people do anything if you have fibro people think you are lazy. I have been sick for over 10 years. So lonely.
Anng G if you need to talk I've been thru similar - 10 yrs I've been ill. It's stolen my joy, friends life future everything. I'm still hoping to get better ... But - it's like trying to climb out of a 20ft deep muddy hole.... Anyway my heart broke for you cos I could've written it. Just know someone probably 10000s of miles away is thinking of you & praying for you....
Losing the ability to read and write for long stretches has been one of the harder things.
Gerald King yes no one understands
Ємрrєѕѕ here’s a bit of my story and there’s more that I wrote to another comment.....I’m very unwell at the moment so cannot write much but would like to have you as a friend to talk with. I’m so sorry that you are suffering with this too. Me too - about 10 plus years. I understand. I go through worse. I have no support and live in an isolated area with my mum who is very abusive towards me and doesn’t want to know about me/cfs and watch any video or read relevant material! She thinks I’m lazy. She’s even told me to kill myself. As though, Me/cfs is not bad enough, I’ve had cancer, heart failure as a result of cancer treatment, gastric ulcer and more! Now my specialist is under investigation and cannot prescribe pain meds. I’ve been abused and bullied by medical staff, especially nursing staff which caused me trauma and I’m afraid to go to ER! Death seems to be a likely outcome!
I relate a lot to what you shared. Being so debilitated and the isolation of people not understanding the severity and that mind over matter won’t fix us. Mind over matter is just how we continue to cope with so much life and function ripped away from us. People with MS were treated like their illness wasn’t real until the imaging for it was discovered. CTE doesn’t show up on imaging at all. All to say that folks with ME and autoimmune dysfunction, we deserve to be believed and understood. We aren’t lazy or weak. We are fighting and this is us doing our best.
I HAVE to see this! THANK YOU!
Keep fighting for all of us.
Rough
So sorry for your family. Son if he has major depression. He can be helped!!! It's intense. I PROMISE it will help. The CFS IS TERRIBLE. GOD BLESS HIM. ALL YOUR FAMILY
I once read a girl with CFS being asked what it felt like to have CFS and she said it’s like being buried alive. I’ve been diagnosed with ME/CFS. I’m not as severe and I think I’ve had it at least 20 years, I’m limited to work at a computer and laying around. Your vibrant self is sucked away. I’m so sad to see Whitney and I can only imagine having all the Knowledge Ron has it’s frustrating to not fix him right now. My heart goes out to your family. I’ve been listening to all of his dad’s lectures and info and I’m thinking of you and hoping you find something to help him with his future. My son is ill, with a brain disorder, seeing your child ill, and not being able to fix it is an awful sadness❤️❤️
Thank you all for commenting . I’ve had cfs for 10 yrs now. Cannot even believe it’s been that long. I’ve tried everything but cbd.
I need to educate myself ASAP on this
Lovely family, but what if you only have an elderly mother 20 miles away and the UK state doing their best to harass you, remove benefit and support. The sub-text in the UK to which they would never admit to I'd to try to force me/CFS victims into suicide.
God love you all. Whitney is always in my thoughts. ❤
I thought I had it bad until I saw Whitney’s situation. God Bless him and his family.
What a touching tribute to your son. I sent him some heart energy for him to use as needed. I am a healing touch practitioner and have had me/cfs, fibromyalgia for 12 years. Mine is not as severe as Whitneys. I have a question. Would be be open to receiving healing touch? There is no need to touch him and the different techniques can be done above his body silently. I worked at hospice doing healing touch on my patients for over 2 years plus I worked on the staff. I live in Florida near Daytona beach but there are ht practitioners everywhere. May God bless him and all who care about and for him.
As hard as it is Whitney try & keep your chin up, I will not say I was the same as you as everyone is different but I was originally in a similar state to you. I was 36, 2 daughters who were early teenagers & fortunately a very loving, caring wife. Your family looks very caring & that's what you need around you. The first few years were the worst, 21 years on it's better but each day is a challenge not to exceed your limitations. An interest of some sort is helpful, I've found while my ability to travel is limited photography provides a form of beneficial therapy for me. Rejoice with the small daily accomplishments, no matter how small and try to stay positive as hard as that is. Cheers.
Ms. Dafoe says he got worse (paraphrasing) "two Christmases ago". She would need to confirm this, but I believe that's when he started Rituximab, and declined markedly after that. The drug may work for a percentage, but it clearly made him worse.
The background music is not good for me. But thank you for sharing the life of one of the #MillionsMissing.
I had ME/CFS and was bedridden. I did the Gupta program and recovered. I strongly recommend it.
How long until it got better?
Por favor coloquem legenda em português!
Do they sleep?
Same. It’s horrific
I too am in this condition and searching for a good video to show family to understand.. I want to point out that high-pitched music - like the piano you are using for a soundtrack - is absolutely horrible for us.. I could hardly listen, please consider swapping a much softer soundtrack.. high pitches like piano, bells, violin, flute etc are absolute torture. I have to stop watching a lot of films due to this, just fyi.. now you know why you are hearing less music.. it gets too much.. I can rec a few that are truly soothing and calm the nervous system: Deva Premal, Snatum Kaur, mantras and chanting are largely great overall, but some do use bells or other piercing sounds.. I have had the single biggest help by going strick keto in-out a lot, but no sugar (must incl all grains) pufa's, or stimulants. I also am greatly assisted doing colemas to implant probiotics, kefir, gcmaf yogurt, restore, and other soil organisms I get in clays and shilajit etc.. I have found the gut is where to work.. and fasting is not always a choice but seems to boost immunity, then I have to start all over eating again.. collagen-rich bone broth I have going as my staple always, blueberries in yogurt and cream (im ok w/non-milk dairy), and absolutely do best on good fats whenever I can get food down, ghee and coconut oil in hot blended tea is wonderful and easy to get down.. cannabis is imo crucial and ought to be in every cancer ward, it works amazingly to stop nauseau, stimulate appetite, hold food down, calm nervous system, calm ibs, repair gut, alter pain much better than any nsaid, sleep, joint and muscle pain.. what else comes close to all that? I just take a nightly capsule, and vape from an epen but I only intake clean concentrates, never smoke plant material although do vape it. Thanks very much for putting this video together, how I would like to be in touch with all of you..
This chronic fatigue
radiation of magnetron is day and night....also when you dont use the microwace-oven
i sincerely hope you’ve tried antiepileptics (lamotrigine, levetiracetam etc.) You probably did but i’m just putting it out there.
Hi Gasper, I know this comment is late but I'm wondering what you have found helpful regarding anti-epileptic meds & CFS?
I have CFS (since age 19 & am now 36) & have been on Lamotrigine for the past 10 years, but that's to help boost the effect of an antidepressant I'm on for depression. When the depression lifts (it comes in waves) & I am feeling hopeful & positive, there is still no change to the CFS symptoms. The type of tiredness & mindset that comes with depression goes away but the actual physical & mental exhaustion (a whole other level to the depression heaviness), extensive pain, difficulty sleeping, cognitive issues, noise intolerance etc remain just as strong as ever. After time I find it hard to remain positive as I realise how limited I might be for life.
Have you found anti-epileptic meds helpful for CFS symptoms? Or is it someone else who's found them helpful?
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Hi I’m sorry that Whitney is in so much pain. I’m as sick of not worse than him. At least, Whitney still has parents and family who still love him! I’m worse and I have no One! I live with my mum who does help out begrudgingly with some basic stuff but she’s extremely abusive towards me. I have to listen to daily berating and nagging from her. She’s even told me to kill myself! She thinks I’m lazy. Won’t accept how sick I am. Won’t watch videos or read articles on me/cfs. I have useless ignorant drs. My room and home has become cluttered due to my lack of energy just as in this video but my mum won’t accept that it’s due to pain & fatigue. I now have a gastric ulcer so can only eat or drink in small amounts. My mum is continually focused on why I leave part of my drink and food in the fridge! If it’s too painful to drink a certain drink for that day or days, then I have to find something else but she will nag me and try to control what I eat or drink because it takes space in the fridge. She’s a pig and will eat everything up even if she’s not hungry. I often have to beg her to make me something to eat. Often if she’s not in a good mood, she will deny me food! She would never ever serve it to me in the bedroom, so Whitney, as bad as your situation is, know that you are fortunate to still have parents and a sister who stand by you and support you. I have no one!!! At most my mum will sometimes cook and i will have to force myself to get to the kitchen to get it! You know how all of you with me/cfs know how little energy you have? Well now my mum has gone deaf but she won’t accept it. She’ll say it’s my speech that’s bad and that I mumble. She won’t accept that I have no energy to shout out to her repeatedly because she can’t hear me - she expects me to shout out from bedroom to kitchen and then curses me. A loving family member, knowing they are deaf will at least come close to the bedroom. When I wake up really sick, I ask her make soft eggs for me. I still have to get up to make my own toast and seasonings on it. She will shout at me, Fuckwit, your eggs are ready; come and get it! When I’m in severe pain and survival mode ( cos I’m not hungry but have burning ulcer pain and nausea from meds, have to force self to eat.) Am buttering my toast and carrying it and eggs to front room, she will scream at me to put soya sauce in cupboard and create a fight then and there. She will continually make demands on me!!! She knows that I’ve got an injured R shoulder girdle and neck pain but still make demands on me to carry things! I’m sitting on the corner of my bed in severe pain and it’s so incredibly bad, I feel like dying. I’m not sure what to do and feel that maybe vomiting it up may make me feel better. Am sitting dizzly on the edge of my bed, waiting for the vomiting to start. She comes in and shouts at me, whether I switched the heater on. I reply No, but the deaf woman can’t hear and asks again and I reply no. Me/cfs sufferers, you know how you don’t have much energy but how bad it is when you are having a flare up episode. She makes sarcastic comments at how sweet and soft my voice is! When you come in from the garden on a hot summer’s day, having stayed there until the sun has gone down, of course, it’s commonsense that the house will be hotter but her first question to me upon coming in, is did you switch on the heater!!! Eventually, I run to the bathroom and start vomiting and wretching! It was difficult to vomit! No care, empathy or apology from her.
Hi! I'm really sorry to hear about your horrible situation :( As a patient who's had ME for 13 years, 7 of which housebound, I understand... Many people (including most doctors I've seen, almost all of my old friends and sometimes even my own family) often don't believe me, mistreat me and belittle all of my diseases, going as far as saying that I'm pretending, that I'm lazy, that I'm crazy or other absurdities, instead of realizing I'm actually very sick. Please consider joining the MEAction page on facebook or other ME communities; they are very friendly and you'll feel accepted and understood. Know that you are not alone in this! We are all by your side :)
That is so sad your mother calls you names and isn’t kind to you. I am so sorry. I have severe ME too. I will pray for you. God says... “when your mother and father forsake you, I will take care of you”.... Psalm 27:10... I pray your mother’s heart will become softer towards you and God will provide a way for better care for you.... 🍃💜🍃🙏🌸
Alecia Bjorlie Thank you so much. I’m going through an extremely hard time at present. My ME is so severe that no one really understands. Worst still, I have an injury to my R side and too much typing makes my arm seize up and then I can’t type. Is there a way we can msg privately on here or FB? I have had a huge exposed cavity in my mouth for 3 months now and am being denied care and pain relief. I’m concerned I’m going to end up with sepsis. On top of this, I have a gastric ulcer and my dog has a growing tumour on her neck. The vet I took her to last year, took me for a ride saying that it’s an infection from her teeth. He extracted a lot of her teeth against my wishes and I had to borrow $2000 for her care. She was misdiagnosed by 2 vets. Then in April, he did another FNA biopsy, charged me another $300 and wants another $2200 or more to remove the lump. He has never done this surgery before and it’s a complicated one. I took her to specialist vets and they estimated it will cost $6000, just an estimate and not a quote.They told me the 2nd FNA was inconclusive and it might be cancer! My dog is my best pal and reason for living. It will cost me in the region of $6000 or more for myself to get my tooth fixed and the same for my dog. So I need anywhere from $12000 to $15000 for myself and my dog and I have so many other ongoing health issues. My mum continues to bully me. Due to my stomach pain and now dental, I can barely eat/chew so I have to eat in small amounts and I can’t finish my food and drinks. My mum will keep nagging, throwing my food/fruits and drinks out or breaking containers or stacking a cup into a cup which contains drink. She’s so unhygienic with my food. I would really appreciate prayers.
Lea Salonga ... you are welcome to message me on my Facebook. It’s sounds like you are overwhelmed.
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Alecia Bjorlie Hi again, I have useless Gps, sad to say. I’m housebound and bedridden and this GP just can’t get it!!! He’s worse than a non - educated professional. He’s so annoying and frustrating. Early in the year , I found some literature on the cdc website explaining that Drs often do t realise how sick some patients with me/cfs are as it may not be visible . Eventually such patients start to drop off from visiting drs because they become too ill to travel. He says, yeah, yeah, yeah as though he knows it all. Thank goodness for Covid 19 because it allows telephone consultations which the gp would not agree to previously. My last consult was 35 seconds just to get a monthly script but without Covid, I’d be forced to travel and be exposed to viruses and bacteria. They get paid for a 15 minute consult when it was only 35 secs. Back to original topic, I suffer from severe nausea daily and one of the triggers is the cold and public transport especially the bumpiness of the train. I have explained to them numerous times that I cannot travel on public transport ( travelling in the car is already bad enough). After having a conversation with him explaining all this for the 100th thousand time, he asks can you just show up at xyz hospital? I ask which one and he’s still talking about the one that will take me 3-4 hours of travel via public transport with multiple changes. I’m so lethargic with this dental infection that I can barely sit up. I don’t know how to get through to such drs without being rude and there are so many of them!!! Have you encountered this? How do you answer them? Someone suggested I say, which part of bedridden do you not understand, but that’s rude and you know drs and their big ego!!!
This happens to too many. I share videos about my own experience with healing
Please tell them about Rick Simpson oil...
No more
When trying to explain this to family definitive medical research is sometimes helpful. Since there is so little of that available right now here is a link that might help.
workwellfoundation.org/resources/#videolinks
When dealing with disability Claims The Work well foundation has one of the only real tests for CFS. It’s not cheap but it was one of the best things I have done to improve my quality of life.
workwellfoundation.org/testing-for-disability/
The work they do is only on moderate cases since they can not do a stress test for someone that can not stand up. But the information is still true just more extreme.
Stumbled onto this again.. that piano is just horrible for we with ME.. could not endure such noise pollution. Please folks making films for ME - just dont put any other noises that our brain cannot stand. It is extra exertional load so very harmful. Only soft, slower than voices like gentls guitar, harp, gamalon.
Gardening is a mistake when you have CFS. It will just make you worse. You first have to learn to do nothing till you feel OK doing nothing. Only then can you do more.
I cry for you, and I have it too. family, thanks for reaching out, but I can say honestly that life doesn't mean anything anymore.
you should allow him to go back to God, my opinion only.
Leah DiGiallonardo I've thought about it too for myself. Though that line of thought does not come from extreme grief of loss. I've been like this long enough to understand that there is nothing that makes me want to live. I want to gooooo.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
damn, you deserve a nobel prize. amazing.
Except I've had it for 40 years and never owned a microwave oven.
⚠️ That music! Please get rid of it. It's like an iron grate being clamped on my head.
He has completely held his family as hostages, as if he is the most important one in the family. Tragic for them. I hope they can find their own happiness.
What a repugnant thing to think, let alone say. Family care for people severely debilitated by this devastating illness through love. The tragedy is seeing someone you deeply love endure such illness, as well as the loved family member suffering.
@@snaphappy6892 The sign on his door says, "NO TALKING". Do sick people usually speak to their family like that?
@@fozzybear8878
If you don't have lived experience of severe ME, or have not seen and know the multiple symptoms this devastating illness causes (through being a carer) I can understand how difficult it may be to appreciate that people endure this for years.
Living in one room, isolated from all that you wish to do, be, and were. Perspective of the sign becomes pretty insignificant. The family and carers obviously are aware of this requirement. Sick people are extremely grateful for having such loving families. That much I do know.
@@fozzybear8878 Do you have ME/CFS? I don't think you understand it when it's as severe as Whitney's.
@@Lchristyhastings Well, it seems he does write great big long essays, a la this:
facebook.com/whitneydafoe/posts/264068101797556?__tn__=K-R
But it seems like he says he is not eating, so I guess he lives on air.