The thing healthy people rlly don't get as well is how different 'fatigue' feels to normal tiredness - tiredness feels like your body wants you to rest; fatigue feels like you've died and the grim reaper has forgotten to come and retrieve your soul
This is like being half dead. Sometimes 90% dead. It's pain and total exhaustion but unable to sleep. It's despair and grief. It's wondering why I carry on really.
Sadly, Gary has passed. Great for him to share his story. They omitted a major part of this. During the time waiting for diagnosis and being unable to work, there is no income. So people end up losing their homes, career, life savings, some become homeless and most become socially isolated. Also not addressed is the damage of medical gas lighting. I'm glad you mentioned it can occur after surgery. ME is often called post viral illness which leaves those with post surgical illness even more marginalised. Let's not forget the proven biased differences in how men are treated compared to women ,by medical professionals. Thank you Gary for doing your best to raise awareness. Your videos have helped.
So true - It feels like I'm trapped in a 91 yr. old person's body. The isolation is horrific. I so want to meet friends or old clients for a coffee, etc., but it's too much. Besides, you can't really make plans because you never know how you'll feel after a few miserable hours of sleep, at best. My circadian rhythm is backwards.
I was diagnosed last year when I was 14. Since then I’ve had to leave school, lost a lot of weight, I’ve lost all my friends and recently left a three year relationship. I can’t remember the last time I felt well. I was already very mentally ill, but now it’s so much worse. It’s sort of a blessing and a curse, I feel like dying but I’m too tired to try and hurt myself. Thank you for speaking up for us.
For me too ,since 2012 i Always think i Had Depression,i Go Out and do the Basic daily routines then i CAME Back to bed ,i Dont have Energy to do nothing ,Not even wash the dishes at Home,people call me lazy ,but now im slowly getting my Energy Back,they say Same people Recover...please try Probiotic foods
Yes and I also use turmeric powder to lower the inflammation levels. It tastes sh*t to drink down 4-5teaspoons full of that spice, but after 3 weeks, I am doing small walks again and having more energy. But it can be from other reasons. But worth of trying anyway!
I've had chronic fatigue for about 4 years. The first year I was hopeful but as the years pass by I begin to feel like death would be the greatest blessing.
KINDNESS! This illness certainly shows people what a rare virtue that is. Kindness to oneself is very good advise. You are a wonderful advocate Gary. I specially appreciate you mentioning the mental health aspect, a courageous act. So many of us come to the end of their rope and find they can't go on, it is a real complication to the illness.
SO GLAD THIS IS GETTING OUT THERE, I AM AT 11 YEARS AND TO SICK OF PEOPLE NOT BELIEVING THIS IS REAL, FEELING HELPLESS, PAIN EXHAUSTION, NO HELP AND ALL ALONE
I believe you. I’ve had it for 10 years. Got a little better then relapsed after Covid vaccinations. I feel better on a high dose of vitamin D with a maintenance dose of K2 and magnesium as well as vitamin B1
When your friend says you look great at the end....I know he means well .....but it makes me just want to scream ....people really don't get it .....thank you for sharing and spreading awareness in such a candid and real way x
I know, it's strange how a remark like that can hurt. I dunno, perhaps I've heard that I look great and that I shouldn't complain and just drag myself out of bed and work, like everyone else who just feels a "little bit tired". If we would look as horrible as we feel, people would NEVER make a remark like that AND we would get help much sooner.
They mean well and it’s a massive compliment when you feel so shitty on the inside to be able to look like you’re thriving on the outside. Am I supposed to feel bad when somebody compliments me just because I don’t feel like I look? Then am I supposed to moan online to strangers in a weird pity-pool that someone complimented me despite me feeling so crap?? Fuck that. Maybe if I meet you I’ll tell you you look like shit, see if you prefer that..? Jesus. Some people just don’t WANT to be happy do they. Me? I’d kill myself for healthy me back and when someone tells me I look good I accept it like a fucking boss. A grateful boss.
Elizabeth - That struck me too. I was smiling at our hero telling the story and then it ends with the guy saying that - even after Gary had gone thru how we look fine... and my smile dropped off my face, like "oh no, :( ".
Crash, that’s how I describe it. I crash and burn. You get so sick and tired of being sick and tired then something comes along that you have to do and for two or three days after you can’t move. In my head, when some one says “you don’t look sick” or “you look so well” I throat punch them. I know it’s childish, but that’s me as a tall 4 year old these days😹😹😹🙄.
It’s a devastating illness on so many levels. Those of us dealing with this might remind ourselves that, just as with any uncommon disease, others can’t relate unless they have had it. It was helpful to me to stop trying to explain, convince, justify my health needs to others. It just frustrated me and was a waste of energy. Most people just can’t comprehend what we go through minute by minute in a day. No accurate frame of reference. Being kind to yourself is partly letting go of the need to convince others. That said, there are some people who need educating. Thanks so much for this video.
Thank you so much for your effort! As a fellow sufferer, I watch your performance in the studio with a deeply empathetic eye, because I know what it will cost you. People really have no idea how much it takes to sit there, and talk (and to talk so much with your hands,) and this is why it's so important when someone like you makes that donation.
So well described Gary. You're making the public aware of exactly what daily life is like for M.E.sufferers. We continue to need more awareness of this this debilitating illness.
Well done Gary for getting the message out there. I've had ME/Fibromyalgia for 25 years and deal with it daily. Mine developed after trauma, bereavement, spinal operation etc. It is a battle that we fight every day and only really understood if you personally live with it. Mornings for me are the worst, later in the day are the best times. Keep going Gary..never let it beat you. Pacing yourself is a must. I like the analogy about the mobile phone!
i got this at age 38 i was an Orthoptist in a busy hospital, but no more. i got a severe strep throat then my father died, these 2 things triggered my ME. Took 8 months for diagnosis. The initial crash at the beginning will go on for a few years but eventually those crashes become less and less as you adjust to being less than what you used to be as it seems high energy and doing people get this disease. I hate it but am living with it. You have to stop the exercise and walks you are doing it will keep setting you back. Then slowly build up but i do think its just time. I can now swim a little and have a fairly functioning life with my hubby and 2 teenage kids. I only work 2 half days and i have to sleep longer in the mornings. Mornings are not good for ME, you will find you are shopping at 10pm as that's when you feel better. That seems pretty common. Anyhow i could go on and on. I wish you the very best of luck and take it easy, you will improve!!!!
I felt every word. It happened to me after an emotional trauma (loosing my mom who was my best friend), coupled with a child birth and some strange sickness. I also remember being a people pleaser before that and not being too kind to myself. The worst part is, I spent my life trying so hard to do everything right, but when I got sick I wasn’t believed by my doctors and my husband. People still think I should just get out of bed and exercise. Let me tell you the medical bias is real when the ME patient is a female. It’s always somehow in your head or you’re trying to manipulate people for sympathy even though you were never that kind of person.
I've had cfs for about fifteen years but have only just been diagnosed. I also have Bipolar and Emotionally Unstable Personality Disorder. The three of them together are hell on earth but I have a lovely husband and our dogs to go on for. Well done Gary for raising awareness.
Thank you. This is me. Havent had diagnosis yet. Been to all consultants. Gave up work 2016. Can only do one active thing a day after being so full of life previously. Such a relief to hear someone articulate the situation.
Thanks so much for watching and messaging. Keep going - I know it’s really not easy at times when you’re banging your head against a brick wall. Most importantly: be kind to yourself. Sending best wishes.
I feel for you I really do . Sorry this has happening to you . I've had ME for over 10 years now . Sadly took me 3 year for diagnosis . I was told to go back to work and don't lie down to it and exercise . So I kept going for a further 4 years . Now I'm a shadow of the person I was . I also was told because of my age it would be life long . If I had been given proper guidance at start I believe I would be better for it today . Thank you for sharing your story . Awareness is so important . Also funding . I took ME after glandular fever . I have lost so much to this debilitating disease .
He actually spoke to me when I messaged him . I was going out my mind with long Covid . Gary has now gone & I will never forget his kindness. RIP sweetheart
I’ve just had my 37th surgery on 02/08 and my GB needs to come out next too.. I have Lyme Disease, hEDS, MCAS, ME-cfs since 1995 since I was 22, Fibromyalgia, HPV SCC (squamous cell carcinoma), Erythromelalgia, Neuropathy, ileus of bowel, Gastroparesis, SPC catheter, mast cell issues, chronic pain, crazy allergies in the uk I’m left permanently bedbound now 10 years and left to waste away and rot! The UK ignores us ♥️ CBT & GET made me worse... I’ve tried so many treatments over the last 3 decades. I’m having to fight for PIP / Disability benefit! 🤦🏼♀️🔫 the treatment of chronic illness patients in the uk is abysmal!!! Praying things get better for you Gary 🙏 xx
I think the hardest part of this is when you aren't sure what's wrong and doc says you're okay because blood results are okay. Then there's one specialist after another and going to them especially if you have to drive miles and miles to the hospital -is exhausting, stressful and scary. The worst thing is a morning appointment when you have to drive 28 miles to get there and have such unrefreshing sleep or maybe couldn't even sleep till 4am. There's the worry "will they find a brain tumour?" etc etc.....and meanwhile you have no diagnosis. You don't know what the heck is wrong with you and neither does the doctor. And people say you "look well"....and you can't tell people how you really feel. You can't even say "The doctor has diagnosed me with CFS," You can't even know or be sure what to do for the best because you don't know what you've got.
Yep, and in here all these specialist have appointment waiting list times minimum 6-12months. So that will considably slow my progress of getting a diagnosis. Also, I "look so well" 😂 I have just started my journey towards finding diagnosis, but I have strong suspicion that this is ME/CFS. All the bloodtest came back perfect. All the other tests also look perfect. I am the healthiest person in the planet hah 😂 But I am operating with a very bad phone battery....I have not found any other illness which sounds SO relatable.
I'm commenting over a year after this interview, but am a 10-year patient of ME/CFS and have learned recently that ME/CFS blood cells function properly, but cannot produce the energy that control cells can produce when stressed. So what is preventing our blood cells from producing energy? One promising theory is that it is an ion (I may be wrong on that, given my foggy brain 😕) which normally enters each of our blood cells, but is being blocked in all ME/CFS pts tested. They don't know why, but if they can figure out a way to make it so the ion can enter our blood cells, we could have a way to get well in a matter of days. The hunch of these researchers is that there may well be some medicine already on the market that treats some existing malady which will also open the doors to our blood cells. From this research, I have started looking at my fatigue level a bit differently. I assume a low energy level in all my blood cells that will get lower as I expend energy (brain, emotions, moving around, talking with people--all must be considered things that drain energy from my blood cells). From that, It's easier to set my priorities realistically for the next day. Viewing it this way has reduced my setbacks markedly and, even better, has reduced my guilt and depression about being a drag on others. I hope this helps Gary and others. The good news for him is that people who have had it less than 4 years are statistically more likely to recover from it. I see great promise coming from a group of international brilliants dedicated to finding a cure, led by Ron Miller, PhD, a genome multifaceted guy at Stanford University who spearheaded the idea of getting dedicated researchers from around the world to come together at their forums in a spirit of cooperation; donate their time; and share their expertise and wild ideas to find a cure--with publishing being secondary. The overarching organization is the "Open Medicine Foundation." I watch their talks on UA-cam.
Thank you this was very useful. I now only give myself one task a day. Some days none. A task can actually be meeting or visiting family members. It’s that bad. And I’ve also cut all toxic people as much as possible.
So Sorry you copped this horrid illness . Don’t push yourself . You can’t fight it . Thank you for speaking out . It’s cruel how most time’s we aren’t believed just how sick we are . Suicidal thoughts are normal with this illness . Wish you the best Gary .
@@emilyjohnson4993 Emily,Thanks for letting me know.I did some digging after i posted that and found out what happened. It is so sad.He seemed like such a nice man.
I have ME and fibromyalgia for 6 year, Everything i have done. I am in a wheelchair cause of severe pain and weakness, go in to paralysis everytime I be a little physical. Everything put me in to a flare, live with pain 24 hours a day from 60% to 90%. Just getting worse and I am 45 year old.
Annmarie123ize hi there sorry to hear of your pain and disabilities. I'm 33 and in the same position as yourself. The me is more recently become a problem but I've battled it and been winning till now! 2 days in bed so thought I'd search for others as I'm in a bad flare up with the fibro. Seems it sets off the me with a flare up.
@@jenniferfrost7713 So sorry, I hear you. When my energy deteriorate after just an hour of being in my power chair. Or chatting socially, I go in to paralysis flare and that feel like I am dying too. Being in a flare for weeks or month feel like I am dying, So scary.
This is taking over my life. 7 years ago my stomach swelled up I looked 6 months pregnant... And the tierdness came the lymthnodes came up... the fatigue lessened and Iver time new symptoms... Joint pain, muscle pain, vibration in my legs, muscle twitching and horrendous brain fog. I have had to step back from my role at work and demote myself. I will be going to a ME support group in Leeds. I am absolutely broken by this. I used to be so on the go... Cleaning, working 2 jobs, full of beans happy.. Now I am physically drained after doing anything active.. and getting anxiety if I do do anything knowing I will suffer for it for weeks later. Its s**t
Gary, You have described ME/CFS perfectly. Thank you for using your platform to bring credibility to this debilitating condition. It’s difficult for healthy people to imagine that just taking a shower creates a need to rest.
I had dealt with so many ignorant and helpful comments . Like just eat better or it’s your attitude you are making yourself a victim or everybody is tired or my favorite you are just a lazy bum. This man put it very well tbe small things wile you out
I think I have this! And I say its like having a battery that wont charge right and it goes out quick. And after a day of alot of effort to do the things I have neglected I spend days in bed after. Im depressed too. But I have it like this even in happy times in my life.
I have had ME/CFS for 18 years since contracting it at 42 years old from the Epstein-Barr virus. Also several other serious illnesses, 75 trips to the emergency room, several hospital stays and two emergency surgeries. I have struggled to hang onto the resemblance of my life before the virus but now I find myself at 60 years old with no family whatsoever and alone living in an apartment. I rely on one stranger who lives next door to me to check on me to make sure that I have not died in my apartment. I've had to live through the loss of 20 people and several animals passing and have very little money to pay my rent. I'm trying so hard to deal with past trauma that has set me up for this kind of life but how do I do that when I am suffering through excruciating trauma every single day. I don't even talk to people anymore because they want me to explain to them why my life is the way it is. I've been explaining for almost two decades now and I'm done trying to explain to people who can't see past the nose on the end of their face. I know I sound bitter and I'm really a happy-go-lucky person but I just can't anymore. I used to have a beautiful home, a dog, a family, a car, a job, a sister, a mother, a brother, a husband but it is all gone now and I am alone.
I am a single mum the condition is all over the place and the system is unfair They have no understanding how our condition wax and waves. But I am at the severe end of the conditions always bad, my good day are bad my bad days are worse and still I was put on standard for one year.😔
Thank you Gary for making this. My ME is getting worse and I've missed out on my youth. Hopefully going to get a wheelchair soon. This disease is really scary, I feel like I keed losing more and more functionality
Hi Gary, I've recently come across your video's and wow, you've nailed it! You described me totally. It's refreshing to hear you articulate the condition so well. I've sent it to my family and friends because you put it in a way I can't. I listened to your interview too and it's so true that we try to hide the condition, the guilt we feel, and that people only see the good sides of you, because lets be honest who wants anybody to see them on a down day. I'm five years in and it has take all that time to find a balance, it's been hard work and still is, but your right being kind to yourself and acceptance is a massive step forward. Thankyou for all the publicity.
Gary, Thanks for having the courage to speak openly to the world about this dreadful condition. It's embarrassing, accompanying quite physical feelings of loss/helplessness/hopelessness. God bless you.
Thankyou for representing us in such a eloquent and straight forward way. You got the message across so well and with a touch of humor. Please don't stop helping people understand ME/CFS you have a gift :)
Been suffering from M.E since 2007. Even today I've just slept 10h and will have another nap later. Haven't worked since and find life very hard. Soo many symptoms with this, extreme fatigue, sensitivity to light and sound. Brain fog. Headache that never goes away. IBS which is awful. Many more symptoms and then there is the mental side of this like he said, you get suicidal thoughts. It's a horid thing to live with.
As a mother of a young woman with this, I can completely relate to your pain. I hope scientists, doctors and health officials will do more to educate themselves and educate the public and politicians about this
Sally - where in the US. Ask your Doctor about Low Dose Naltrexone. Is i supposedly a game changer for folks like us. Google / look on you tube for "Naltrexone for ME"
in Montana 😬 part of the issue having a complicated Lyme coinfection (on set of symptoms after a missionary trip to Nicaragua in 93) I drive out of town to see a doctor and she cannot prescribe any opiate based medication out of county. she’s seen me a long time and knows i can’t tolerate alcohol and don’t have drug addiction. For Bartonella disulfiram (w methylene blue) is the treatment. so apparently i would need to become a raging alcoholic and heroin addict to get the medication to heal it and treat my symptoms (I was on a butrans patch until the war on opiates. im screwed! im not okay! my family won’t help and the community won’t. after my day and a half neuropsyche appt the conclusion was i needed to be in an urban area to be treated but i’m stuck waiting for a disability hearing. i’m filing with a congressman for a congressional review to try to expedite the hearing. i’ve been raped and jailed (insane story of a welfare check went horribly wrong) for being homeless. i’m not a criminal or addict but i’m treated horribly in this town. i’m freakin out because my parents went down to arizona for the winter and they were halfway helping me to stay safely housed and i was seeking online charity with minimal results but i’m not good at begging! i need $2800 initially to see the Lyme literate ND in Bozeman but i’ve been 80% bedridden on average for the last 5 years. I’ve had fatigue symptoms since high school in the late 80’s but chronic fatigue for 20 yrs, severe for 10 yrs and like I said mostly bedridden for 5. I’ve developed MCAS, candidas, fungal issue, mold mycotoxins. the last job i tried to work i couldn’t even do two 4 hour shifts, synacope and breathing problems caused me to lose it but my brain didn’t work well at all i couldn’t even figure out how to make a vanilla latte one day. i remember barely anything. my brain scan shows frontal lobe lesions, “fluid” in my inner ear, chiari1. my 20yr old has symptoms. my son born 1 yr after nicaragua died at 20 months on an operating table in helsinki from a mysterious white spot seen on his heart that when they opened him had spread infection and growths throughout his body especially into his brain. i lost 2 successful businesses my last one being as a jewelry designer on etsy at the end pulling in $1000 a day, now hundreds of artists around the world make the style of jewelry i came up with. yet SSDI wants to play games, like they do with us and act like i’m trying to con the system for what i used to make in a day!! it’s unbelievable and i sound (and AM!) bitter as all hell at this point as i cannot get my family to help or community and all i have and do need is $500 monthly for rent with $50 heat. i have a service dog, large german shepherd so can’t go to rescue missions. i just don’t know what to do anymore, i need the universe to send me a break or something already?? Thank You very much for commenting, my doctor is just a nurse practitioner but i don’t have the time to establish care with another, specialists won’t even take me, nobody wants to deal with Lyme and especially neglected tropical disease and my combination is seriously controversial. Plus we all know we need help from a naturopath but there’s no help to get there and we’re often to sick to work. Thanks again for listening, I’m trying to have as much faith as possible but i’ve been hanging on for life for so very long 😢
@@sallystearns1919 sending complete understanding. Am in IL and had hell of a time getting care, finally diagnosed with inclusion body myositis but have all sx of CFS also, next month with see 6th neuro. grateful 29 yo son chose to live with me for safety. His rescue shepherd mix acts as my gravity safety dog and protector. House needs so much work, don't want to think of the mold that came after I spent 17 k on new roof before got very sick. SSDI has refused me twice, soon will run out of retirement savings. Sooo tired at so many levels, you are not alone.
Start chelating, according to Andrew Cutler's protocol. Search and listen to few (or few dozens) interviews with him on UA-cam, search "mercury chelation" and such.
Hello! I’ve been diagnosed with ME a month ago after 8 years. It has been a very rough ride with my life gradually falling apart in every aspect and my mental health declining. Now I’ve changed my diet, added lots of suplements and will soon start an accupuncture therapy. One very important thing is that now I know that I am not to push through as my personality and the doctors were telling me all these years (and I’ve been pushing real hard!), but instead learn to listen to and honour my body for the first time in my life.
I understand i have fibromyalgia the fatigue is terrible. Yes i start my day on a low battery too. Its so exhausting and very frustrating because people cant see it. Xxx
July 16 2021 is when my life completely changed. I was supposed to compete in a Brazilian jiu-jitsu tournament the next day but woke up with some nausea and felt very fatigued. I had no idea what was wrong with me. I thought I just had a stomach bug. After a week I did recover but something wasn’t right. I felt off all the time. My eyes became sensitive to sunlight and as I continued to train in bjj I felt more and more fatigued. I began to lose energy to workout and I lost my muscle and became thinner. I couldn’t think properly and my head felt cloudy all the time as if I was hungover. This is known as brain fog and was my worst debilitating and frustrating symptom. I had to quit bjj in october 5th 2021 because I physically couldn’t do it anymore. I barely passed my classes last fall because my memory went to shit. I Started doing tons of research on what's wrong with me. I went to several doctors appointments and saw a neurologist as well as had several blood work tests done on me. My father, who is a very intelligent ER physician, did not know what was wrong with me. I found after hours of intensive research that I had chronic fatigue syndrome(aka post viral syndrome). I was devastated. There was no medical cure for cfs and my life was just getting worse. I was going downhill fast and I knew that if I didn’t fix my health, then I would be bed bound. At one point I was suicidal. But I knew that would be selfish as I have a mother, father and sister who love me very much and would be devastated if I killed myself. That's when I decided that no matter what I couldn’t give up and I wasn’t going to live like this either. I accepted the fact that no doctor was going to fix me and the only person that was going to save me was myself. That was my first I did hours and hours of research on how to improve my health. I cut out all artificial sugars from my diet. I mainly stuck to meat, veggies, and fruit. I read books such as Joe Dispenza “Breaking the Habit of Being Yourself” and watched his videos. Joe Dipenza was paralyzed from the waist down and learned the ability to walk again through meditation. I thought, if this man can recover from a spinal cord injury and use his mind to walk again, I could do the same to heal my body. I did hours of meditation as well as did a brain retraining program called the gupta program. I prayed to God. I took cold showers. I also took supplements such as coq10. I blocked any negative influence on my life. I also did no fap/semen retention. As I got better I continued to increase my physical intensity when it came to working out. I started off as small as 50 pushups doing multiple physical exercises. My life began looking up again. I started being able to do more things. I gradually gained my memory back. I went back to school. I documented my progress on how I was doing each month. Today I am fully recovered. I am back to what I was before I got sick. I train multiple times a week in bjj. I am in great shape. I am finishing my last year of college. I just received my blue belt in bjj. To anyone out there who thinks it is impossible to recover from this, don’t give up. Your mind and heart are powerful tools. Use them. Don’t waste your life going to doctors and waiting for the medical system to find you a cure. I was fortunate enough to realize after the first three months of being ill that doctors weren’t going to save me. That realization is why I am here today writing this. If you put your mind to it, you can accomplish anything. Some sources/videos I used to recover are cfs recovery, health recovery, harry boby long covid recovery, and joe dispenza-all found on youtube. I also prayed to god asking him for advice and I also did the gupta brain retraining program
I really try not to compare myself with healthy people, but its hard not to. All these hyper active, successful- in- the world types. Doing , doing, doing. I haver to be happy with me as i am, and proud of whatever i CAN accomplish even if to the world it seems like very little. I have to let go of what i think other people would think of my life.
I am currently taking 4-5 teaspoons of turmeric powder and 1 teaspoons of ginger powder with warm water at the morning. It is very strongly anti-inflammatory. I started to see improvement with my energy levels after 3 weeks of taking it. Doing some little walks outside now 😊 But it might not be the only thing which is helping me. So take that advice with a pinch of salt. But if you are bedridden, you have nothing to lose. Well, turmeric tastes horrible so there is that. Basicly, inflammation might not be the cause of ME/CFS, but it certainly helps your body to cope when you lower the inflammation levels in it.
I've had it for 24 years and it's just horrific. I could never be in a studio to talk to anyone, because it would trigger a massive panic attack. And I could not be anywhere near crowds without feeling faint. Constantly sweating, burning skin, night terrors. Joint pain everywhere. And after 24 years I still feel awful. More needs to be done to find a cure for this illness. But the thing is people don't believe you. That's the hardest thing.
I have not been able to work since November 2018 when I was diagnosed with 3 hernias, only one needed surgery. I am still undiagnosed. I have not woke up feeling rested since this started and every second of the day I feel like I have just completed the hardest working day of my life. I have had possibly 6 headaches up until my 48th birthday, I am currently 52. Since this condition started I have had a non stop pressure headache behind my eyes, which are in constant pain as well as dizziness when I move my head. In 2019 I fell down some stairs due to being tired and dizzy and I broke my ankle, now I move a lot slower. I sleep anywhere from 20 min to 5 hours up to 5 times in a day, usually 1 to 2 hours at a time. I only sleep when exhausted but I am always tired. Riding in a vehicle increases the pressure in my head so I try to keep that down to under 30 min. I have had multiple doctors hint that I am faking my issues because nothing shows up in tests. I could not imagine anyone wanting to live like this. If I was faking I would be currently enjoying and living life to the fullest. I used to love driving my truck and going kayaking. I bought a $1200 BBQ a few years back that I thoroughly enjoyed using but it is too much work. I avoid going to movies due to brain fog and needing to crash at the drop of a hat. I easily lose focus and struggle to follow plot lines of tv shows in general. I do not have enough energy to shower every day and may only contribute to 10% of the chores around the house. Luckily my main doctor and wife are taking me serious and are trying to help. I feel like this is taking years off of my life. All of the sudden everyone thinks I lack motivation and need a kick. I have stopped talking to most people and avoid making new friends. Some of these videos show people exercising and "getting more sleep" while having ME CFS and they must have the light version.
There has to be an infectious element to this illness as there have been throughout the years well documented outbreaks affecting small and large groups of people who were previously well. I was in group of four who have remained seriously affected after thirty years.
LDN helps manage my pain. It's been a life saver. Forgot it two days in a row and it took three weeks to get the pain back under control. Didn't help my energy (seems to do so for some who are "mildly" affect), but having my pain reduced so much has improved my quality of life.
I dont know if I have this but I’m starting to feel like it. Back in 2018 I started getting headaches and feeling tired all of the time. I have been to doctors and been tested for so much and I cant seem to find answers. Did a sleep study and it was normal. It doesnt matter how much sleep I get I wake up exhausted. I constantly have memory problems, body aches, and just overall fatigue. I feel like I am dying and I don’t know what else to do. It sucks 2017 and before I felt like a normal, healthy person
I've had it for 27 years after catching Glandular Fever as a fit happy 35 year old. As part of my ME I have chronic insomnia which came later; at the beginning I was similar to you and slept a lot. It's like dragging a dead body around that wants to remain horizontal.
Does anyone know if this makes you cold most of the time? Occasionally I have hot flashes but most of the time I can't get warm. Always tired and in pain every day. Diagnosed me with costochondritis but been 3 years so say probably not that may be nerve pain or fibromyalgia. I'm starting to think may be cfs as I have most of the symptoms if not all. Fed up of feeling like this and not knowing what's wrong.
I had severe CFS that only got worse in time. I am now fully recovered. You can too. I did a video on my recovery and CFS and allergies to persistent pollutants.
I have milder chronic fatigue, however my adrenals are battered (found out through alternative therapist) At first l thought the CF was getting worse, as that has been present since my early 30s. In 2018 l knew l was slowing down, then by 2020 l was hammered. Also have very dry eyes which is s major strain. Its feels like an endless journey looking after yourself, probably struggle to go out once every 5 days, a major challenge, the bus stop is a third of a mile away just thinking and preparing yourself for it is too much, mind over matter is a constant. Yes if you say your shattered, again people say things like your getting older or l'm tired, l'm thinking YOU WOULDN'T WANT THIS FOR YEARS ON END!!!! I liken it to trying to drive a car without any petrol......Where will you get? No where! Still in my nightie, up at 9.30, back to bed by 11am, up at 2.30pm
I had mysterious chronic fatigue type symptoms for years. Not only did I feel ill, I looked ill. Doctors couldn’t find the problem but eventually it turned out I had an undiagnosed sinus infection and didn’t have the typical symptoms of runny nose. I still have chronic fatigue but I don’t sleep well either. I’m hoping that sinus surgery will improve my energy levels as I’ve been sick for 6 years now.
Rob Rainford Sorry to hear that. Do you have low immunity that your body can’t fight off the infection? My problem is the opposite, my immune system is overreacting and causing the swelling in my sinuses, so I have to take steroids to calm the inflammation down. But it’s never a cure and what I would give just to feel a burst of energy even just for an hour. That’s the problem with CFS as you mention, the cause of it and how to cure it is very frustratingly a mystery.
Rob Rainford Do you get flu-like symptoms with your fatigue? I was told the fatigue is from the immune system constantly being on the attack, expending energy and fighting an infection it can’t really fight because my sinuses don’t work properly. I was told by an ENT specialist that sinus issues can sometimes be caused by a combination of things, allergies/sensitivities and environmental factors, so it’s interesting that you mention the UK air quality. I moved to London and that’s when my health issues started. Thanks for the advice.
Rob Rainford Yes, I do get headaches, brain fog and get aching joints, especially pain in my wrists and knees and sometimes my muscles feel really stiff. Just getting up the stairs can be tough at times. That’s the thing with sinus surgery, some of those sinuses are close to the brain and eyes so I can understand that you wouldn’t want to take that risk. Ha ha, I have actually thought about wearing a smog mask 😷 Same to you, good luck!
couldn't do simple math a couple weeks ago like 84 times 62 ... yesterday I tried to figure out how big of a plastic tarpaulin I would need to cover over a door sized stack of material ... struggled to do it. A couple years ago I was able to design electronics or machines, the cfs experience varies so much over time or between people, I have no blurred vision like you describe, but I do lose visual processing / clarity sometimes, losing a sense of whats going on around. At my worst I had no ability to spatially conceptualize my sense of geographic location... I felt as though my house may as well be floating in the sky ( couldn't really look out the window either as strong sunlight blinded me for several minutes ).
Advances since this video: a diagnostic test is now recognized at least in the USA. That is the two day exertion test, which involves 10 minutes on an exercise bike, while monitoring oxygen to lactic acid usage, as well as ability to perform at peak levels, and a few other parameters. In ME/CFS patients there is at least a 20% decrease in ability on the second day, which does not happen in any other disease. The control group for this research was MS patients, who are closest in symptoms to ME/CFS patients. The MS patients had no decrease in ability to perform, nor in levels of fatigue between day one and day two.
Thank you for raising awareness about CFS, like most people say cos we look fine it’s hard for others to really understand the haze of weird symptoms that can come with this condition. Over the last 13 years of having CFS I have found some things that have helped but as yet I’m not cured from ME. I personally have found the Perrin Tecnique from an expert practitioner has made my life in general more bearable and sometimes dare I say, fairly good. The practitioner I see does cure people with CFS it takes time though, I have the condition quite severe so it’s taking longer. Any way I’m not saying it’s a cure for all I’m just putting it out there in case it helps others as I have found it helps me. All the best
I would feel well after waking in morning but approx ten minutes later after getting up the awful exhaustion would set in and I would be back in bed feeling incredibly ill.
Gary's example is my example as well. Our 'batteries' don't keep a full charge any longer and it drains quickly. Today, I'm having a very good day and it's been great. Tomorrow will likely be bad, not because today was good... but because bad days outnumber good days by a lot. It's like a random generator... you just never know.
DJ 65 I’m getting better at managing my energy carefully meaning I’m averaging two days a week where I can do things. A constant juggle! Sending best wishes.
@@zonkedclub7681 Good to hear your taking care of yourself. I'm probably about the same. I don't get out much but as long as things are calm and stress free I can manage ok at home. I enjoyed your videos because you totally know what I'm going through. Thanks for responding
I'm in the U.S., 75 years old and lost my wonderful life to M.E. eighteen years ago. The diagnostic process is horribly flawed and leads to outcomes that are psychologically damaging. Here's how it works. You go to the doctor complaining of a fatigue that feels pathological...it feels sick. The doc does tests and tells you that they are all normal. You go back to the doctor complaining of violent heart palpitations. More tests, all negative. Back again, only now complaining of cognitive issues. An EEG, maybe an MRI are done and all come back normal. This goes on and on. You have to ask at this point what it is that your doctor sees when you visit. He sees a hypochondriac and begins talking to you about your mental health. He starts by asking you about depression without an understanding that M.E., which is not a psychological disease is so devastating that it CAUSES depression in almost all of us with the illness. Now you are led to believe that it's all in you head. In my case, although I was an 8,000 to 10,000 mile a year bicyclist when stricken, I was told to get some exercise and read books about being happy!!! Gary, I'm glad you were diagnosed. So many aren't. With so many Covid "Long Haulers" presenting with post-viral M.E. and adding thousands upon thousands to our ranks, educating medical professionals so that diagnosis can be properly done is paramount. This is an edit: This is how nuts M.E. can be. When my heart rhythm started to go crazy and the heart exams started I hoped in the most powerful way that I had heart disease that was causing my M.E. symptoms. My thought was that a damaged heart might be able to be fixed or that it would end my life. I saw either of those two outcomes as equal opportunities.
Since 2012 i have This fadigue ,its came to a point i cant even go to the Supermarket around the coner ,as i was mostly in bed i i start reseach in ,Watching UA-cam videos,trying everything i could ,well i see a video about gut health and fermented food ( in asiatic cultures),i start consuming kefir ,kimchi,NATO ,pickles ,conserved food ,well 2,3 weeks later i really see my energy levels and disposition increasing ,today Im só much better ,and i start swimming lesson
Your description of the medical "professionals" is spot on! I'm married since many years to a wonderful woman with ME. The so called doctors are mostly useless. Expensive and useless. Step by step my respect for the medical community has dwindled. They're certainly not in it to be humble, open minded, kind and trying to help people with their health issues with the best of their ability. My conclusion is that most of them prefer the patients to be sick in the "right" way, not in any "strange" way. And certainly not trying to be healthy in any unconventional way. They're simply at work 9 to 5 while you as a ME-patient is there with your whole human life struggle. They care about their career, not about your life. Very sad to have come to this conclusion.
This is fibromyalgia not ME, You usually don’t get body pain with ME you can do but this is fibromyalgia and that’s the main problem mis diagnosis by Drs, all you get for pain is opioids which makes you more tired and sleepy. It took me 5 years to be diagnosed after a bad shoulder injury and 4 operations on it, he’s right the depression / guilt is worst part of it I went to uni got my degree just started working a job I enjoyed and then hit with fibromyalgia while under the age of 30 it’s horrific
Zonked Club hi thanks for reply, to be honest it’s confusing As I’ve been diagnosed with fibromyalgia and I get, chronic pain, extreme fatigue, fibro fog (brain fog), depression. What’s the difference between the two? I thought chronic fatigue is a symptom of fibromyalgia the information is conflicting and different doctors tell me different things as so does dr google, btw thanks for raising awareness it’s what we need 👍😀
@@86Smally if you have fibro walking for a while makes you feel better.. If its CFS you are stuck in bed the next day with nausea, dizziness, body aches etc
TheInternet Sucks after a walk I always feel worse the next day and In more pain, the worst is after a bath or shower I feel as if I’ve done back to back marathons with a donkey on my back, am no expert but I think ME and fibromyalgia are the same just people have different variations of it, before you disagree fibromyalgia didn’t exist a few years back and I think only now in 2019 is the UK government is putting in legislation to officially recognise it as a genuine medical disability
@@86Smally Hi. Fibromyalgia has been around since the late 1800's. It was called Rheumatism, then Fibrosis, then, when more info became available, Fibromyalgia, because it is a collection of multiple symptoms, known as Fms, a syndrome .
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
The thing healthy people rlly don't get as well is how different 'fatigue' feels to normal tiredness - tiredness feels like your body wants you to rest; fatigue feels like you've died and the grim reaper has forgotten to come and retrieve your soul
What an accurate description 🤦🏻♀️
😂😂😂 ahh this is both hilarious & perfection.
This is like being half dead.
Sometimes 90% dead.
It's pain and total exhaustion but unable to sleep.
It's despair and grief.
It's wondering why I carry on really.
Yes. You don't just feel tired, you feel like you're dying constantly.
Resting isn’t rested enough. Doing the minimum is like running a marathon. Doing a little more will put you in bed for three days.
Sadly, Gary has passed. Great for him to share his story. They omitted a major part of this. During the time waiting for diagnosis and being unable to work, there is no income. So people end up losing their homes, career, life savings, some become homeless and most become socially isolated. Also not addressed is the damage of medical gas lighting.
I'm glad you mentioned it can occur after surgery. ME is often called post viral illness which leaves those with post surgical illness even more marginalised.
Let's not forget the proven biased differences in how men are treated compared to women ,by medical professionals.
Thank you Gary for doing your best to raise awareness. Your videos have helped.
How did he die?
@@debramartin9396Cancer.
Heartbreaking, may he rest in peace
Maybe it's from the fluoroquinolone antibiotics they may give for the surgery
Proven bias??? Wth, I'm a nurse and I've never heard such a thing 🙃
The hatred and frustration of being trapped in your own body is near daily for many CFS pts.
Thanks for taking the time to watch. Appreciated.
Really does feel like a living death.
So true - It feels like I'm trapped in a 91 yr. old person's body. The isolation is horrific. I so want to meet friends or old clients for a coffee, etc., but it's too much. Besides, you can't really make plans because you never know how you'll feel after a few miserable hours of sleep, at best. My circadian rhythm is backwards.
I was diagnosed last year when I was 14. Since then I’ve had to leave school, lost a lot of weight, I’ve lost all my friends and recently left a three year relationship. I can’t remember the last time I felt well. I was already very mentally ill, but now it’s so much worse. It’s sort of a blessing and a curse, I feel like dying but I’m too tired to try and hurt myself. Thank you for speaking up for us.
For me too ,since 2012 i Always think i Had Depression,i Go Out and do the Basic daily routines then i CAME Back to bed ,i Dont have Energy to do nothing ,Not even wash the dishes at Home,people call me lazy ,but now im slowly getting my Energy Back,they say Same people Recover...please try Probiotic foods
Yes and I also use turmeric powder to lower the inflammation levels. It tastes sh*t to drink down 4-5teaspoons full of that spice, but after 3 weeks, I am doing small walks again and having more energy. But it can be from other reasons. But worth of trying anyway!
@@SatumainenOlento Please try fermented food Kefir Nato kimchi Probiotics ,
I've had chronic fatigue for about 4 years. The first year I was hopeful but as the years pass by I begin to feel like death would be the greatest blessing.
been dealing with chronic illness since i was 14, im 36 now, hope youre able to keep fighting on
KINDNESS! This illness certainly shows people what a rare virtue that is. Kindness to oneself is very good advise. You are a wonderful advocate Gary. I specially appreciate you mentioning the mental health aspect, a courageous act. So many of us come to the end of their rope and find they can't go on, it is a real complication to the illness.
Thank you. ❤️
SO GLAD THIS IS GETTING OUT THERE, I AM AT 11 YEARS AND TO SICK OF PEOPLE NOT BELIEVING THIS IS REAL, FEELING HELPLESS, PAIN EXHAUSTION, NO HELP AND ALL ALONE
I believe you. I’ve had it for 10 years. Got a little better then relapsed after Covid vaccinations. I feel better on a high dose of vitamin D with a maintenance dose of K2 and magnesium as well as vitamin B1
CFS is the sort of tiredness that sleep can't cure. Our batteries are constantly showing the constant discharge indicator.
Yes!
When your friend says you look great at the end....I know he means well .....but it makes me just want to scream ....people really don't get it .....thank you for sharing and spreading awareness in such a candid and real way x
Cheers, Elizabeth. I know what you mean. It’s something people say out of habit and with good intention.
I know, it's strange how a remark like that can hurt. I dunno, perhaps I've heard that I look great and that I shouldn't complain and just drag myself out of bed and work, like everyone else who just feels a "little bit tired". If we would look as horrible as we feel, people would NEVER make a remark like that AND we would get help much sooner.
@@zonkedclub7681 hello gary my me is very difficult, at mo
They mean well and it’s a massive compliment when you feel so shitty on the inside to be able to look like you’re thriving on the outside.
Am I supposed to feel bad when somebody compliments me just because I don’t feel like I look?
Then am I supposed to moan online to strangers in a weird pity-pool that someone complimented me despite me feeling so crap??
Fuck that.
Maybe if I meet you I’ll tell you you look like shit, see if you prefer that..?
Jesus. Some people just don’t WANT to be happy do they.
Me? I’d kill myself for healthy me back and when someone tells me I look good I accept it like a fucking boss.
A grateful boss.
Elizabeth - That struck me too. I was smiling at our hero telling the story and then it ends with the guy saying that - even after Gary had gone thru how we look fine... and my smile dropped off my face, like "oh no, :( ".
Totally relate. Im in a crash now and its nice to watch vids like this so I feel less alone. 😊
Sez Gibson sending very best wishes.
Crash, that’s how I describe it. I crash and burn. You get so sick and tired of being sick and tired then something comes along that you have to do and for two or three days after you can’t move. In my head, when some one says “you don’t look sick” or “you look so well” I throat punch them. I know it’s childish, but that’s me as a tall 4 year old these days😹😹😹🙄.
You are doing a brilliant job, using your skills to speak out about M.E. on behalf of all of those (us) that can’t. Please do more.
Susan Hardy thanks so much, Susan. I’ll certainly do my best.
It’s a devastating illness on so many levels. Those of us dealing with this might remind ourselves that, just as with any uncommon disease, others can’t relate unless they have had it. It was helpful to me to stop trying to explain, convince, justify my health needs to others. It just frustrated me and was a waste of energy. Most people just can’t comprehend what we go through minute by minute in a day. No accurate frame of reference. Being kind to yourself is partly letting go of the need to convince others.
That said, there are some people who need educating. Thanks so much for this video.
I have had ME for 15 years it has basically ruined my life 😢
Thank you so much for your effort! As a fellow sufferer, I watch your performance in the studio with a deeply empathetic eye, because I know what it will cost you. People really have no idea how much it takes to sit there, and talk (and to talk so much with your hands,) and this is why it's so important when someone like you makes that donation.
Thank you so much. That’s really kind of you to say - and to understand.
People always tell me that too "you look so good" while I appreciate it, it drives me crazy sometimes because people just don't understand
mranster This. 100% this. I am crying because I understand what a huge sacrifice it was to speak about this on our behalf.
Yes! That’s so good to recognise!
So well described Gary. You're making the public aware of exactly what daily life is like for M.E.sufferers. We continue to need more awareness of this this debilitating illness.
Well done Gary for getting the message out there. I've had ME/Fibromyalgia for 25 years and deal with it daily. Mine developed after trauma, bereavement, spinal operation etc. It is a battle that we fight every day and only really understood if you personally live with it. Mornings for me are the worst, later in the day are the best times. Keep going Gary..never let it beat you. Pacing yourself is a must. I like the analogy about the mobile phone!
Thank you, frangitube. Sending best wishes.
frangitube I’ve had this since 1985. Someone once told me “ Just get yourself well!” What forbearance we are forced to develop!!
i got this at age 38 i was an Orthoptist in a busy hospital, but no more. i got a severe strep throat then my father died, these 2 things triggered my ME. Took 8 months for diagnosis. The initial crash at the beginning will go on for a few years but eventually those crashes become less and less as you adjust to being less than what you used to be as it seems high energy and doing people get this disease. I hate it but am living with it. You have to stop the exercise and walks you are doing it will keep setting you back. Then slowly build up but i do think its just time. I can now swim a little and have a fairly functioning life with my hubby and 2 teenage kids. I only work 2 half days and i have to sleep longer in the mornings. Mornings are not good for ME, you will find you are shopping at 10pm as that's when you feel better. That seems pretty common. Anyhow i could go on and on. I wish you the very best of luck and take it easy, you will improve!!!!
Thanks, Diane, and I’m so sorry to hear what you’ve been through. Pleased to hear of your progress.
Diane Carubia my son has this horrible illness and can’t attend school. People really have no idea. The judgements. Arghhh
@@zonkedclub7681 how to explain the doctors this....
I felt every word. It happened to me after an emotional trauma (loosing my mom who was my best friend), coupled with a child birth and some strange sickness. I also remember being a people pleaser before that and not being too kind to myself. The worst part is, I spent my life trying so hard to do everything right, but when I got sick I wasn’t believed by my doctors and my husband. People still think I should just get out of bed and exercise. Let me tell you the medical bias is real when the ME patient is a female. It’s always somehow in your head or you’re trying to manipulate people for sympathy even though you were never that kind of person.
I've had cfs for about fifteen years but have only just been diagnosed. I also have Bipolar and Emotionally Unstable Personality Disorder. The three of them together are hell on earth but I have a lovely husband and our dogs to go on for. Well done Gary for raising awareness.
White Van Man sending very best wishes.
Thank you. This is me. Havent had diagnosis yet. Been to all consultants. Gave up work 2016. Can only do one active thing a day after being so full of life previously. Such a relief to hear someone articulate the situation.
Thanks so much for watching and messaging. Keep going - I know it’s really not easy at times when you’re banging your head against a brick wall. Most importantly: be kind to yourself. Sending best wishes.
I feel for you I really do . Sorry this has happening to you . I've had ME for over 10 years now . Sadly took me 3 year for diagnosis . I was told to go back to work and don't lie down to it and exercise . So I kept going for a further 4 years . Now I'm a shadow of the person I was . I also was told because of my age it would be life long . If I had been given proper guidance at start I believe I would be better for it today . Thank you for sharing your story . Awareness is so important . Also funding . I took ME after glandular fever . I have lost so much to this debilitating disease .
Lorraine Deacons thanks for sharing your story, Lorraine and sending very best wishes.
He actually spoke to me when I messaged him
. I was going out my mind with long Covid . Gary has now gone & I will never forget his kindness. RIP sweetheart
Was it CFS that led to his death? Or something else?
@@hshfyugaewfjkKS no cancer I believe.
A wonderful human being . I will never understand how the wonderful die like this & evil lives .
I’ve just had my 37th surgery on 02/08 and my GB needs to come out next too.. I have Lyme Disease, hEDS, MCAS, ME-cfs since 1995 since I was 22, Fibromyalgia, HPV SCC (squamous cell carcinoma), Erythromelalgia, Neuropathy, ileus of bowel, Gastroparesis, SPC catheter, mast cell issues, chronic pain, crazy allergies in the uk I’m left permanently bedbound now 10 years and left to waste away and rot! The UK ignores us ♥️ CBT & GET made me worse... I’ve tried so many treatments over the last 3 decades. I’m having to fight for PIP / Disability benefit! 🤦🏼♀️🔫 the treatment of chronic illness patients in the uk is abysmal!!! Praying things get better for you Gary 🙏 xx
Brilliant Gary. You are a wonderful ambassador.
Thanks so much Pamela. x
I think the hardest part of this is when you aren't sure what's wrong and doc says you're okay because blood results are okay. Then there's one specialist after another and going to them especially if you have to drive miles and miles to the hospital -is exhausting, stressful and scary.
The worst thing is a morning appointment when you have to drive 28 miles to get there and have such unrefreshing sleep or maybe couldn't even sleep till 4am.
There's the worry "will they find a brain tumour?" etc etc.....and meanwhile you have no diagnosis. You don't know what the heck is wrong with you and neither does the doctor.
And people say you "look well"....and you can't tell people how you really feel. You can't even say "The doctor has diagnosed me with CFS," You can't even know or be sure what to do for the best because you don't know what you've got.
Misty Groves that’s so true! That constant not know can be so so wearing. ❤️
Yep, and in here all these specialist have appointment waiting list times minimum 6-12months. So that will considably slow my progress of getting a diagnosis. Also, I "look so well" 😂 I have just started my journey towards finding diagnosis, but I have strong suspicion that this is ME/CFS. All the bloodtest came back perfect. All the other tests also look perfect. I am the healthiest person in the planet hah 😂 But I am operating with a very bad phone battery....I have not found any other illness which sounds SO relatable.
I'm commenting over a year after this interview, but am a 10-year patient of ME/CFS and have learned recently that ME/CFS blood cells function properly, but cannot produce the energy that control cells can produce when stressed. So what is preventing our blood cells from producing energy?
One promising theory is that it is an ion (I may be wrong on that, given my foggy brain 😕) which normally enters each of our blood cells, but is being blocked in all ME/CFS pts tested. They don't know why, but if they can figure out a way to make it so the ion can enter our blood cells, we could have a way to get well in a matter of days.
The hunch of these researchers is that there may well be some medicine already on the market that treats some existing malady which will also open the doors to our blood cells.
From this research, I have started looking at my fatigue level a bit differently. I assume a low energy level in all my blood cells that will get lower as I expend energy (brain, emotions, moving around, talking with people--all must be considered things that drain energy from my blood cells). From that, It's easier to set my priorities realistically for the next day.
Viewing it this way has reduced my setbacks markedly and, even better, has reduced my guilt and depression about being a drag on others. I hope this helps Gary and others. The good news for him is that people who have had it less than 4 years are statistically more likely to recover from it.
I see great promise coming from a group of international brilliants dedicated to finding a cure, led by Ron Miller, PhD, a genome multifaceted guy at Stanford University who spearheaded the idea of getting dedicated researchers from around the world to come together at their forums in a spirit of cooperation; donate their time; and share their expertise and wild ideas to find a cure--with publishing being secondary. The overarching organization is the "Open Medicine Foundation." I watch their talks on UA-cam.
i believe its trauma and stress. gabor mates book when the body says no explains it
Thank you this was very useful. I now only give myself one task a day. Some days none. A task can actually be meeting or visiting family members. It’s that bad. And I’ve also cut all toxic people as much as possible.
I think it's to do with viruses living in the body in remission, like the herpes viruses etc.
So Sorry you copped this horrid illness . Don’t push yourself . You can’t fight it . Thank you for speaking out . It’s cruel how most time’s we aren’t believed just how sick we are . Suicidal thoughts are normal with this illness . Wish you the best Gary .
Rest in peace Gary.The word thankyou dosn't cut it for creating these wonderful blogs.🦋🦋
He passed away 😢 😔 😞?? Awhhhh
Baz Marty,I've just come to see if Gary has posted anymore videos and have just read your shocking comment.What on earth happened ?
@@clairejohnson6522sadly he had cancer
@@emilyjohnson4993 Emily,Thanks for letting me know.I did some digging after i posted that and found out what happened. It is so sad.He seemed like such a nice man.
What an amazing interview Gary! You really did a succinct job describing how much we suffer 😊
Thanks so much, Cassandra.
Omgosh, this is exactly my life!!! "A battery that won't charge", nailed it 💯
I have ME and fibromyalgia for 6 year, Everything i have done.
I am in a wheelchair cause of severe pain and weakness, go in to paralysis everytime I be a little physical.
Everything put me in to a flare, live with pain 24 hours a day from 60% to 90%.
Just getting worse and I am 45 year old.
Annmarie123ize hi there sorry to hear of your pain and disabilities. I'm 33 and in the same position as yourself. The me is more recently become a problem but I've battled it and been winning till now! 2 days in bed so thought I'd search for others as I'm in a bad flare up with the fibro. Seems it sets off the me with a flare up.
15 years for me with 3 other horrible illnesses. Feel like I am going to die any minute.
@@-brooke.
Thank you
@@jenniferfrost7713💓
@@jenniferfrost7713
So sorry, I hear you.
When my energy deteriorate after just an hour of being in my power chair.
Or chatting socially, I go in to paralysis flare and that feel like I am dying too.
Being in a flare for weeks or month feel like I am dying,
So scary.
This is taking over my life. 7 years ago my stomach swelled up I looked 6 months pregnant... And the tierdness came the lymthnodes came up... the fatigue lessened and Iver time new symptoms... Joint pain, muscle pain, vibration in my legs, muscle twitching and horrendous brain fog. I have had to step back from my role at work and demote myself. I will be going to a ME support group in Leeds. I am absolutely broken by this. I used to be so on the go... Cleaning, working 2 jobs, full of beans happy.. Now I am physically drained after doing anything active.. and getting anxiety if I do do anything knowing I will suffer for it for weeks later. Its s**t
Gary, You have described ME/CFS perfectly. Thank you for using your platform to bring credibility to this debilitating condition. It’s difficult for healthy people to imagine that just taking a shower creates a need to rest.
I had dealt with so many ignorant and helpful comments . Like just eat better or it’s your attitude you are making yourself a victim or everybody is tired or my favorite you are just a lazy bum. This man put it very well tbe small things wile you out
Well done Gary. More awareness confirmed!
Thanks, Stephen.
Gary passed away on January 1 2022 of multiple cancers. Rest in Peace.
I think I have this! And I say its like having a battery that wont charge right and it goes out quick. And after a day of alot of effort to do the things I have neglected I spend days in bed after. Im depressed too. But I have it like this even in happy times in my life.
I have had ME/CFS for 18 years since contracting it at 42 years old from the Epstein-Barr virus. Also several other serious illnesses, 75 trips to the emergency room, several hospital stays and two emergency surgeries. I have struggled to hang onto the resemblance of my life before the virus but now I find myself at 60 years old with no family whatsoever and alone living in an apartment. I rely on one stranger who lives next door to me to check on me to make sure that I have not died in my apartment. I've had to live through the loss of 20 people and several animals passing and have very little money to pay my rent. I'm trying so hard to deal with past trauma that has set me up for this kind of life but how do I do that when I am suffering through excruciating trauma every single day. I don't even talk to people anymore because they want me to explain to them why my life is the way it is. I've been explaining for almost two decades now and I'm done trying to explain to people who can't see past the nose on the end of their face. I know I sound bitter and I'm really a happy-go-lucky person but I just can't anymore. I used to have a beautiful home, a dog, a family, a car, a job, a sister, a mother, a brother, a husband but it is all gone now and I am alone.
I had a sister snd brother and mother too. They are all gone. I am all alone now.
This makes me feel way less crazy! Thanks for sharing your journey.
I am a single mum the condition is all over the place and the system is unfair
They have no understanding how our condition wax and waves.
But I am at the severe end of the conditions always bad, my good day are bad my bad days are worse and still I was put on standard for one year.😔
Thank you Gary for making this. My ME is getting worse and I've missed out on my youth. Hopefully going to get a wheelchair soon. This disease is really scary, I feel like I keed losing more and more functionality
Hi Gary, I've recently come across your video's and wow, you've nailed it! You described me totally. It's refreshing to hear you articulate the condition so well. I've sent it to my family and friends because you put it in a way I can't. I listened to your interview too and it's so true that we try to hide the condition, the guilt we feel, and that people only see the good sides of you, because lets be honest who wants anybody to see them on a down day. I'm five years in and it has take all that time to find a balance, it's been hard work and still is, but your right being kind to yourself and acceptance is a massive step forward. Thankyou for all the publicity.
Gary,
Thanks for having the courage to speak openly to the world about this dreadful condition.
It's embarrassing, accompanying quite physical feelings of loss/helplessness/hopelessness.
God bless you.
Gary I send my hugs and hope you feel better 👍🏽 :)
Good on you Gary, especially liked the tip to treat oneself with kindness.
Thankyou for representing us in such a eloquent and straight forward way. You got the message across so well and with a touch of humor. Please don't stop helping people understand ME/CFS you have a gift :)
Been suffering from M.E since 2007. Even today I've just slept 10h and will have another nap later. Haven't worked since and find life very hard. Soo many symptoms with this, extreme fatigue, sensitivity to light and sound. Brain fog. Headache that never goes away. IBS which is awful. Many more symptoms and then there is the mental side of this like he said, you get suicidal thoughts. It's a horid thing to live with.
As a mother of a young woman with this, I can completely relate to your pain. I hope scientists, doctors and health officials will do more to educate themselves and educate the public and politicians about this
I NEED HELP! I’m in America. I can barely get to the bathroom, most days. I’ve been like this for many years now!
Sally - where in the US. Ask your Doctor about Low Dose Naltrexone. Is i supposedly a game changer for folks like us. Google / look on you tube for "Naltrexone for ME"
in Montana 😬 part of the issue having a complicated Lyme coinfection (on set of symptoms after a missionary trip to Nicaragua in 93) I drive out of town to see a doctor and she cannot prescribe any opiate based medication out of county. she’s seen me a long time and knows i can’t tolerate alcohol and don’t have drug addiction. For Bartonella disulfiram (w methylene blue) is the treatment. so apparently i would need to become a raging alcoholic and heroin addict to get the medication to heal it and treat my symptoms (I was on a butrans patch until the war on opiates. im screwed! im not okay! my family won’t help and the community won’t. after my day and a half neuropsyche appt the conclusion was i needed to be in an urban area to be treated but i’m stuck waiting for a disability hearing. i’m filing with a congressman for a congressional review to try to expedite the hearing. i’ve been raped and jailed (insane story of a welfare check went horribly wrong) for being homeless. i’m not a criminal or addict but i’m treated horribly in this town. i’m freakin out because my parents went down to arizona for the winter and they were halfway helping me to stay safely housed and i was seeking online charity with minimal results but i’m not good at begging! i need $2800 initially to see the Lyme literate ND in Bozeman but i’ve been 80% bedridden on average for the last 5 years. I’ve had fatigue symptoms since high school in the late 80’s but chronic fatigue for 20 yrs, severe for 10 yrs and like I said mostly bedridden for 5. I’ve developed MCAS, candidas, fungal issue, mold mycotoxins. the last job i tried to work i couldn’t even do two 4 hour shifts, synacope and breathing problems caused me to lose it but my brain didn’t work well at all i couldn’t even figure out how to make a vanilla latte one day. i remember barely anything. my brain scan shows frontal lobe lesions, “fluid” in my inner ear, chiari1. my 20yr old has symptoms. my son born 1 yr after nicaragua died at 20 months on an operating table in helsinki from a mysterious white spot seen on his heart that when they opened him had spread infection and growths throughout his body especially into his brain. i lost 2 successful businesses my last one being as a jewelry designer on etsy at the end pulling in $1000 a day, now hundreds of artists around the world make the style of jewelry i came up with. yet SSDI wants to play games, like they do with us and act like i’m trying to con the system for what i used to make in a day!! it’s unbelievable and i sound (and AM!) bitter as all hell at this point as i cannot get my family to help or community and all i have and do need is $500 monthly for rent with $50 heat. i have a service dog, large german shepherd so can’t go to rescue missions. i just don’t know what to do anymore, i need the universe to send me a break or something already?? Thank You very much for commenting, my doctor is just a nurse practitioner but i don’t have the time to establish care with another, specialists won’t even take me, nobody wants to deal with Lyme and especially neglected tropical disease and my combination is seriously controversial. Plus we all know we need help from a naturopath but there’s no help to get there and we’re often to sick to work. Thanks again for listening, I’m trying to have as much faith as possible but i’ve been hanging on for life for so very long 😢
@@sallystearns1919 sending complete understanding. Am in IL and had hell of a time getting care, finally diagnosed with inclusion body myositis but have all sx of CFS also, next month with see 6th neuro. grateful 29 yo son chose to live with me for safety. His rescue shepherd mix acts as my gravity safety dog and protector. House needs so much work, don't want to think of the mold that came after I spent 17 k on new roof before got very sick. SSDI has refused me twice, soon will run out of retirement savings. Sooo tired at so many levels, you are not alone.
Start chelating, according to Andrew Cutler's protocol. Search and listen to few (or few dozens) interviews with him on UA-cam, search "mercury chelation" and such.
OMG I was just thinking what a lovely man he is. Usually I don’t like many tv presenters. Now to find he’s died… how sad 😢😢😢
I'm doing my GCSE's at the moment with M.E . I have already missed almost a year of school.
Rip Gary bless you mate, hope you are at peace now so young to leave.
Thank you for this!I am facing a very hard time in my relationship and in a place where no one understands any of this!😢
Hello! I’ve been diagnosed with ME a month ago after 8 years. It has been a very rough ride with my life gradually falling apart in every aspect and my mental health declining. Now I’ve changed my diet, added lots of suplements and will soon start an accupuncture therapy. One very important thing is that now I know that I am not to push through as my personality and the doctors were telling me all these years (and I’ve been pushing real hard!), but instead learn to listen to and honour my body for the first time in my life.
Thankyou.
I understand i have fibromyalgia the fatigue is terrible. Yes i start my day on a low battery too.
Its so exhausting and very frustrating because people cant see it. Xxx
July 16 2021 is when my life completely changed. I was supposed to compete in a Brazilian jiu-jitsu tournament the next day but woke up with some nausea and felt very fatigued. I had no idea what was wrong with me. I thought I just had a stomach bug. After a week I did recover but something wasn’t right. I felt off all the time. My eyes became sensitive to sunlight and as I continued to train in bjj I felt more and more fatigued. I began to lose energy to workout and I lost my muscle and became thinner. I couldn’t think properly and my head felt cloudy all the time as if I was hungover. This is known as brain fog and was my worst debilitating and frustrating symptom. I had to quit bjj in october 5th 2021 because I physically couldn’t do it anymore. I barely passed my classes last fall because my memory went to shit. I Started doing tons of research on what's wrong with me. I went to several doctors appointments and saw a neurologist as well as had several blood work tests done on me. My father, who is a very intelligent ER physician, did not know what was wrong with me. I found after hours of intensive research that I had chronic fatigue syndrome(aka post viral syndrome). I was devastated. There was no medical cure for cfs and my life was just getting worse. I was going downhill fast and I knew that if I didn’t fix my health, then I would be bed bound. At one point I was suicidal. But I knew that would be selfish as I have a mother, father and sister who love me very much and would be devastated if I killed myself.
That's when I decided that no matter what I couldn’t give up and I wasn’t going to live like this either. I accepted the fact that no doctor was going to fix me and the only person that was going to save me was myself. That was my first I did hours and hours of research on how to improve my health. I cut out all artificial sugars from my diet. I mainly stuck to meat, veggies, and fruit. I read books such as Joe Dispenza “Breaking the Habit of Being Yourself” and watched his videos. Joe Dipenza was paralyzed from the waist down and learned the ability to walk again through meditation. I thought, if this man can recover from a spinal cord injury and use his mind to walk again, I could do the same to heal my body. I did hours of meditation as well as did a brain retraining program called the gupta program. I prayed to God. I took cold showers. I also took supplements such as coq10. I blocked any negative influence on my life. I also did no fap/semen retention. As I got better I continued to increase my physical intensity when it came to working out. I started off as small as 50 pushups doing multiple physical exercises. My life began looking up again. I started being able to do more things. I gradually gained my memory back. I went back to school. I documented my progress on how I was doing each month.
Today I am fully recovered. I am back to what I was before I got sick. I train multiple times a week in bjj. I am in great shape. I am finishing my last year of college. I just received my blue belt in bjj. To anyone out there who thinks it is impossible to recover from this, don’t give up. Your mind and heart are powerful tools. Use them. Don’t waste your life going to doctors and waiting for the medical system to find you a cure. I was fortunate enough to realize after the first three months of being ill that doctors weren’t going to save me. That realization is why I am here today writing this. If you put your mind to it, you can accomplish anything.
Some sources/videos I used to recover are cfs recovery, health recovery, harry boby long covid recovery, and joe dispenza-all found on youtube. I also prayed to god asking him for advice and I also did the gupta brain retraining program
I really try not to compare myself with healthy people, but its hard not to. All these hyper active, successful- in- the world types. Doing , doing, doing. I haver to be happy with me as i am, and proud of whatever i CAN accomplish even if to the world it seems like very little. I have to let go of what i think other people would think of my life.
I am currently taking 4-5 teaspoons of turmeric powder and 1 teaspoons of ginger powder with warm water at the morning. It is very strongly anti-inflammatory. I started to see improvement with my energy levels after 3 weeks of taking it. Doing some little walks outside now 😊
But it might not be the only thing which is helping me. So take that advice with a pinch of salt. But if you are bedridden, you have nothing to lose. Well, turmeric tastes horrible so there is that.
Basicly, inflammation might not be the cause of ME/CFS, but it certainly helps your body to cope when you lower the inflammation levels in it.
You can buy turmeric pills if you hate the taste.
Great .. let's hope CFS gets in the media more ....
thanks Garry, Oh and you look great!… the comment that always make me think as a ME sufferer… You have no idea!….
CFS/ME is terrible!!!!!!!!!!
I've had it for 24 years and it's just horrific. I could never be in a studio to talk to anyone, because it would trigger a massive panic attack. And I could not be anywhere near crowds without feeling faint. Constantly sweating, burning skin, night terrors. Joint pain everywhere. And after 24 years I still feel awful. More needs to be done to find a cure for this illness. But the thing is people don't believe you. That's the hardest thing.
Thx for sharing
He’s passed away unfortunately sad😢
Yep so many different doctors they don't look at the whole picture. I also feel like fibro really is ME.
I have not been able to work since November 2018 when I was diagnosed with 3 hernias, only one needed surgery. I am still undiagnosed. I have not woke up feeling rested since this started and every second of the day I feel like I have just completed the hardest working day of my life. I have had possibly 6 headaches up until my 48th birthday, I am currently 52. Since this condition started I have had a non stop pressure headache behind my eyes, which are in constant pain as well as dizziness when I move my head. In 2019 I fell down some stairs due to being tired and dizzy and I broke my ankle, now I move a lot slower. I sleep anywhere from 20 min to 5 hours up to 5 times in a day, usually 1 to 2 hours at a time. I only sleep when exhausted but I am always tired.
Riding in a vehicle increases the pressure in my head so I try to keep that down to under 30 min. I have had multiple doctors hint that I am faking my issues because nothing shows up in tests. I could not imagine anyone wanting to live like this. If I was faking I would be currently enjoying and living life to the fullest. I used to love driving my truck and going kayaking. I bought a $1200 BBQ a few years back that I thoroughly enjoyed using but it is too much work. I avoid going to movies due to brain fog and needing to crash at the drop of a hat. I easily lose focus and struggle to follow plot lines of tv shows in general. I do not have enough energy to shower every day and may only contribute to 10% of the chores around the house. Luckily my main doctor and wife are taking me serious and are trying to help. I feel like this is taking years off of my life. All of the sudden everyone thinks I lack motivation and need a kick. I have stopped talking to most people and avoid making new friends. Some of these videos show people exercising and "getting more sleep" while having ME CFS and they must have the light version.
I'm crying
Presenters closing statement: “You look great as well”
People with M.E watching: hahahahaha🤦♀️🤦♂️
There has to be an infectious element to this illness as there have been throughout the years well documented outbreaks affecting small and large groups of people who were previously well. I was in group of four who have remained seriously affected after thirty years.
I think it's to do with the herpes viruses.
How to heal from this 😢, Im going through this
I’m now 53 I’ve just got ME . What kinda life can I expect . I’m devastated to hear I will stick around
RIP Gary.
LDN helps manage my pain. It's been a life saver. Forgot it two days in a row and it took three weeks to get the pain back under control. Didn't help my energy (seems to do so for some who are "mildly" affect), but having my pain reduced so much has improved my quality of life.
What is LDN?
Kindness to self ... excellent comment .
I dont know if I have this but I’m starting to feel like it. Back in 2018 I started getting headaches and feeling tired all of the time. I have been to doctors and been tested for so much and I cant seem to find answers. Did a sleep study and it was normal. It doesnt matter how much sleep I get I wake up exhausted. I constantly have memory problems, body aches, and just overall fatigue. I feel like I am dying and I don’t know what else to do. It sucks 2017 and before I felt like a normal, healthy person
I've had it for 27 years after catching Glandular Fever as a fit happy 35 year old. As part of my ME I have chronic insomnia which came later; at the beginning I was similar to you and slept a lot.
It's like dragging a dead body around that wants to remain horizontal.
He has unfortunately died the man in the video RIP Gary Burgess.
Omg - Gary that is exactly how I describe it. I say I'm a cell phone that only has one bar fully charged. When that is used I have to go back to bed.
Does anyone know if this makes you cold most of the time? Occasionally I have hot flashes but most of the time I can't get warm. Always tired and in pain every day. Diagnosed me with costochondritis but been 3 years so say probably not that may be nerve pain or fibromyalgia. I'm starting to think may be cfs as I have most of the symptoms if not all. Fed up of feeling like this and not knowing what's wrong.
I love this don't feel guilty. Rest and figure out how to rewrite your life. So true we do have to change how we thought life would be to a new way.
I’m living with it for years without receiving any help from NHS
I had severe CFS that only got worse in time. I am now fully recovered. You can too. I did a video on my recovery and CFS and allergies to persistent pollutants.
I have milder chronic fatigue, however my adrenals are battered (found out through alternative therapist) At first l thought the CF was getting worse, as that has been present since my early 30s. In 2018 l knew l was slowing down, then by 2020 l was hammered. Also have very dry eyes which is s major strain.
Its feels like an endless journey looking after yourself, probably struggle to go out once every 5 days, a major challenge, the bus stop is a third of a mile away just thinking and preparing yourself for it is too much, mind over matter is a constant. Yes if you say your shattered, again people say things like your getting older or l'm tired, l'm thinking YOU WOULDN'T WANT THIS FOR YEARS ON END!!!! I liken it to trying to drive a car without any petrol......Where will you get? No where!
Still in my nightie, up at 9.30, back to bed by 11am, up at 2.30pm
Exactly what i experience
I had mysterious chronic fatigue type symptoms for years. Not only did I feel ill, I looked ill. Doctors couldn’t find the problem but eventually it turned out I had an undiagnosed sinus infection and didn’t have the typical symptoms of runny nose. I still have chronic fatigue but I don’t sleep well either. I’m hoping that sinus surgery will improve my energy levels as I’ve been sick for 6 years now.
Sending very best wishes, Lost&Found
Zonked Club Thank you, same to you.
Rob Rainford Sorry to hear that. Do you have low immunity that your body can’t fight off the infection? My problem is the opposite, my immune system is overreacting and causing the swelling in my sinuses, so I have to take steroids to calm the inflammation down. But it’s never a cure and what I would give just to feel a burst of energy even just for an hour. That’s the problem with CFS as you mention, the cause of it and how to cure it is very frustratingly a mystery.
Rob Rainford Do you get flu-like symptoms with your fatigue? I was told the fatigue is from the immune system constantly being on the attack, expending energy and fighting an infection it can’t really fight because my sinuses don’t work properly. I was told by an ENT specialist that sinus issues can sometimes be caused by a combination of things, allergies/sensitivities and environmental factors, so it’s interesting that you mention the UK air quality. I moved to London and that’s when my health issues started. Thanks for the advice.
Rob Rainford Yes, I do get headaches, brain fog and get aching joints, especially pain in my wrists and knees and sometimes my muscles feel really stiff. Just getting up the stairs can be tough at times. That’s the thing with sinus surgery, some of those sinuses are close to the brain and eyes so I can understand that you wouldn’t want to take that risk. Ha ha, I have actually thought about wearing a smog mask 😷 Same to you, good luck!
couldn't do simple math a couple weeks ago like 84 times 62 ... yesterday I tried to figure out how big of a plastic tarpaulin I would need to cover over a door sized stack of material ... struggled to do it. A couple years ago I was able to design electronics or machines, the cfs experience varies so much over time or between people, I have no blurred vision like you describe, but I do lose visual processing / clarity sometimes, losing a sense of whats going on around. At my worst I had no ability to spatially conceptualize my sense of geographic location... I felt as though my house may as well be floating in the sky ( couldn't really look out the window either as strong sunlight blinded me for several minutes ).
Advances since this video: a diagnostic test is now recognized at least in the USA. That is the two day exertion test, which involves 10 minutes on an exercise bike, while monitoring oxygen to lactic acid usage, as well as ability to perform at peak levels, and a few other parameters. In ME/CFS patients there is at least a 20% decrease in ability on the second day, which does not happen in any other disease. The control group for this research was MS patients, who are closest in symptoms to ME/CFS patients. The MS patients had no decrease in ability to perform, nor in levels of fatigue between day one and day two.
Thank you
Thank you for raising awareness about CFS, like most people say cos we look fine it’s hard for others to really understand the haze of weird symptoms that can come with this condition. Over the last 13 years of having CFS I have found some things that have helped but as yet I’m not cured from ME. I personally have found the Perrin Tecnique from an expert practitioner has made my life in general more bearable and sometimes dare I say, fairly good. The practitioner I see does cure people with CFS it takes time though, I have the condition quite severe so it’s taking longer. Any way I’m not saying it’s a cure for all I’m just putting it out there in case it helps others as I have found it helps me. All the best
I would feel well after waking in morning but approx ten minutes later after getting up the awful exhaustion would set in and I would be back in bed feeling incredibly ill.
Gary's example is my example as well. Our 'batteries' don't keep a full charge any longer and it drains quickly. Today, I'm having a very good day and it's been great. Tomorrow will likely be bad, not because today was good... but because bad days outnumber good days by a lot. It's like a random generator... you just never know.
I have it two and I’m 11
God bless and keep you through all your struggles little one. ❤❤❤❤😯☺xxx
Love it. My mantra is “gentle”
This dude is so funny🤣 hope he feels better
He has unfortunately died the man in the video RIP his name is Gary Burgess he died January 1st 2022
Hi Gary! I have exactly what you have described. I'm just wondering how you are doing now?
DJ 65 I’m getting better at managing my energy carefully meaning I’m averaging two days a week where I can do things. A constant juggle! Sending best wishes.
@@zonkedclub7681 Good to hear your taking care of yourself. I'm probably about the same. I don't get out much but as long as things are calm and stress free I can manage ok at home. I enjoyed your videos because you totally know what I'm going through. Thanks for responding
I'm in the U.S., 75 years old and lost my wonderful life to M.E. eighteen years ago. The diagnostic process is horribly flawed and leads to outcomes that are psychologically damaging. Here's how it works. You go to the doctor complaining of a fatigue that feels pathological...it feels sick. The doc does tests and tells you that they are all normal. You go back to the doctor complaining of violent heart palpitations. More tests, all negative. Back again, only now complaining of cognitive issues. An EEG, maybe an MRI are done and all come back normal. This goes on and on. You have to ask at this point what it is that your doctor sees when you visit. He sees a hypochondriac and begins talking to you about your mental health. He starts by asking you about depression without an understanding that M.E., which is not a psychological disease is so devastating that it CAUSES depression in almost all of us with the illness. Now you are led to believe that it's all in you head. In my case, although I was an 8,000 to 10,000 mile a year bicyclist when stricken, I was told to get some exercise and read books about being happy!!!
Gary, I'm glad you were diagnosed. So many aren't. With so many Covid "Long Haulers" presenting with post-viral M.E. and adding thousands upon thousands to our ranks, educating medical professionals so that diagnosis can be properly done is paramount.
This is an edit: This is how nuts M.E. can be. When my heart rhythm started to go crazy and the heart exams started I hoped in the most powerful way that I had heart disease that was causing my M.E. symptoms. My thought was that a damaged heart might be able to be fixed or that it would end my life. I saw either of those two outcomes as equal opportunities.
Since 2012 i have This fadigue ,its came to a point i cant even go to the Supermarket around the coner ,as i was mostly in bed i i start reseach in ,Watching UA-cam videos,trying everything i could ,well i see a video about gut health and fermented food ( in asiatic cultures),i start consuming kefir ,kimchi,NATO ,pickles ,conserved food ,well 2,3 weeks later i really see my energy levels and disposition increasing ,today Im só much better ,and i start swimming lesson
Your description of the medical "professionals" is spot on! I'm married since many years to a wonderful woman with ME. The so called doctors are mostly useless. Expensive and useless. Step by step my respect for the medical community has dwindled. They're certainly not in it to be humble, open minded, kind and trying to help people with their health issues with the best of their ability. My conclusion is that most of them prefer the patients to be sick in the "right" way, not in any "strange" way. And certainly not trying to be healthy in any unconventional way. They're simply at work 9 to 5 while you as a ME-patient is there with your whole human life struggle. They care about their career, not about your life. Very sad to have come to this conclusion.
Would love to connect Gary with my husband.. he's got a similar story. It started around 15 years ago... same age...
This thing sucks.
Cheers, Nancy. If he wants to get in touch via the website, I’m at www.zonked.club - sending best wishes.
I'll tell him when he wakes up.. might be a while..
That's my Analogy too, plus an old phone - that won't charge up
Only one News mentioned it was
CFS/ME.
I don’t think they want to open a can of worms.
Ive been suffering with ME for years! Im tired just watching this video.
Same
This is fibromyalgia not ME, You usually don’t get body pain with ME you can do but this is fibromyalgia and that’s the main problem mis diagnosis by Drs, all you get for pain is opioids which makes you more tired and sleepy. It took me 5 years to be diagnosed after a bad shoulder injury and 4 operations on it, he’s right the depression / guilt is worst part of it I went to uni got my degree just started working a job I enjoyed and then hit with fibromyalgia while under the age of 30 it’s horrific
86Smally hi there. It’s definitely ME, not Fibro, but I know what you mean about that pain and the unhelpful prescriptions!
Zonked Club hi thanks for reply, to be honest it’s confusing As I’ve been diagnosed with fibromyalgia and I get, chronic pain, extreme fatigue, fibro fog (brain fog), depression. What’s the difference between the two? I thought chronic fatigue is a symptom of fibromyalgia the information is conflicting and different doctors tell me different things as so does dr google, btw thanks for raising awareness it’s what we need 👍😀
@@86Smally if you have fibro walking for a while makes you feel better.. If its CFS you are stuck in bed the next day with nausea, dizziness, body aches etc
TheInternet Sucks after a walk I always feel worse the next day and In more pain, the worst is after a bath or shower I feel as if I’ve done back to back marathons with a donkey on my back, am no expert but I think ME and fibromyalgia are the same just people have different variations of it, before you disagree fibromyalgia didn’t exist a few years back and I think only now in 2019 is the UK government is putting in legislation to officially recognise it as a genuine medical disability
@@86Smally Hi. Fibromyalgia has been around since the late 1800's. It was called Rheumatism, then Fibrosis, then, when more info became available, Fibromyalgia, because it is a collection of multiple symptoms, known as Fms, a syndrome .
Yoga nidre and guided meditations help me. Plus finding your baseline, and pacing correctly. People can recover. So never give up hope.
Hello it’s been a bit. I was wondering if you have seen any improvement??
Been feeling like this for a long long time now. Going through tests at doctors which is coming to an end with no results as yet.
Ive just had results i have M.E, i dnt feel so guilty as thought i was lazy, but now i start treatment i pray i feel better.