What is ME/CFS? And what's it like living with it?

Gary Burgess set up Zonked Club to share his experience of living with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). There’s lots more on his blog at www.zonked.club

[@joleeming3647]

It's so good to have people who can articulate how it feels because for some of us it's not possible. Keep going this is great. X

[@joleeming3647]

Could U pls add the link to your blog?

[@sarahgriffiths1340]

Just thinking the same.

[@bill9923]

Guilt is a huge issue for me. I'm surrounded by healthy people and I always compare myself. I beat myself pretty bad.

[@rtlamb]

As a fellow sufferer of ME I can totally relate! You nailed it! This disease completely sucks the life out of us! Congrats on the engagement! I know that having a spouse who "gets it" is a lifesaver on so many levels!

[@zonkedclub7681]

Thanks so much, Richard. That’s really kind. And here’s to understanding spouses!

[@LindaD02]

No lies here. My husband has been my rock

[@doodah30]

i'm a university student in my 3rd year. I never knew what to quite pinpoint it up until your i saw your interview. It's really hard living with it. I can't remember the last time I woke up feeling fresh after a long night's sleep, I could get up at 1pm in the afternoon and still feel the need to nap by 3:30-8:00 pm just to feel exhausted by 11:00 pm at night. I can't keep up with my readings for my courses nor can i concentrate on reading a page. My speeches are slurred and I can't seem to even spew out basic vocabularies at times and i'm always in a hazy state of consciousness, almost like i'm existing inside a vacuum from the outside world. Even basic tasks like taking a shower and combing my hair feels exhausting and my mind constantly feels like it's being bombarded with a million vague thoughts at times. sleeping for 9+ hours does not help and i'm only sore from body aches all day. it's costed me my ability to perform in college or even have a normal life at times. i've tried going out, only to feel exhausted 2 hours into it. the hard part is that people just mock you as being "lazy" and "unproductive"

[@esthercave8111]

7 years of this disease. First few years where the worst unbelievable suffering 24/7. I could not look after my son who was born in 2017 and months after that i started getting symptoms till i was diagnosed 3 years later. My husband had to give up work to look after us. Absolutely hell on earth. I had so many symptoms and did get counselling to deal with the trauma of it all. I never lost my faith in God as a Christian, and trusted God through it all. I am so much better now and went on holiday with my son and husband went to a waterpark and lived life. Unfortunately symptoms creeping back and i still cant manage or understand how i sometimes are relieved of it all but it always comes back and i find myself in bed housebound. Grateful for the healing that has happened and praying to God gor a full recovery. Please read the bible and turn to God to help you endure this hardship.

[@chaostocosmos]

Brilliant Gary. I've had ME for 45 years (hate the term CFS). You have described the experience perfectly. More please.

[@zonkedclub7681]

Pamela Stocks that’s so kind of you. Thank you! I’ve just recorded a follow up which I’ll post soon. Really really appreciate your message. x

[@senileandinsane]

Thank you for this channel, I’ve just found it while trying to understand my condition - and this is explaining exactly how it is for me - work is so Damn hard

[@patriciafirth7173]

Zonked club is such a good idea for so many people who struggle with energy. Those who have good energy - dont take it for granted!!!!

[@zonkedclub7681]

Thanks, Patricia. Those are wise words. 🙌🏻

[@LindaD02]

I was just saying to my husband, as I was getting out of shower and at 47 needed his help because I was so weak, you take for granted the energy you use on a daily basis for normal everyday tasks.

[@stephaniesmith1183]

You described just how I feel, it is soooo hard trying to explain this to other people, maybe I'll show them this vlog. Thank you

[@GiggleBasket21]

You explained all my symptoms, when I read/see others it's similar but never all the same, but yours with the blurred vision (people are blob heads with colours (their clothes) and the upsetting part of just forgetting like your 'whose toothbrush incident' is much more like mine! Thank you, It seems there are different types let alone different levesl! I use Mindfulness to help me pace, and it's helps me with many of the moods I've had in the past and to keep me positive. The Guilt was so hard to stop doing/feeling guilty like that for so long! I've been having an almost 'normal' (as normal as we can be with this fatigue) recently but I've tipped myself over the edge,I started to think I was getting better and it has jumped up and Bit me hard! I had forgot how a crash felt, that will teach me for not pacing! I'm glad you have a supportive husband to be, it makes a big difference, it's a shame so many don't and how many still don't believe this is a "REAL" illness. I wouldn't wish this on my worst enemy! Thanks for Sharing your story. My M.E. was caused by the Mumps virus apparently (it would of been the 4th time I had mumps!)

[@zonkedclub7681]

Kantai Abi thank you for your message. Sending best wishes.

[@bazmarty6084]

Thankyou Gary.Your words and advice have helped me but not only me but so many other people who have M E/cfs and also helped people who don't have the illness gain insight and knowledge about it.I hope your videos remain forever.You are sadly missed.Rest in peace.🦋🦋

[@Disscot]

Thank you for this. I am around the same age as you. I have had ME since 2013 it’s not quite as bad right now as it was back then but I go through flare ups. I do manage to work but only 16 & a half hours a week. Although I have had long periods of time off work when it’s been bad. I very much have the same issues with guilt. Not being able to work full time. If I meet someone for coffee on a day off I think if I can do this perhaps I could work more hours even though I know deep down that would be a really bad idea. Sometimes I get brain fog at work. Try explaining that to folk lol. You worry that people think you are lazy because like you say they only see you looking well they don’t see you curled up feeling rubbish. I also struggle to explain what ME is and how it impacts my life and the brain fog doesn’t help with that one. Lol. I do very much try and remain as positive as I possibly can even though sometimes I can get so frustrated. Thank you for this vlog. I will go and have a watch of some of your other videos. I hope you are having a good day. I also hate it when people say but you are looking really well. It make me feel uncomfortable because I would never reply well I don’t feel it. Xx

[@zonkedclub7681]

Disscot thanks for that post - you’ve summed it up brilliant. Especially the ‘you look so well’ bit. Oh how that gets to me! Sending best wishes.

[@JoyfullyGrumpy]

Amen, brother, on that description. Been up and down since I crashed in 2005, (had muddled through since the 70s) but never ever think its always going to be this bad. There are good times in between the bad, even if its because you give yourself permission to be "unreliable" -- my big issue I struggle with. And the more you give yourself love and kindness, the more you will find it in others. Take care.

[@swavey83]

I'm currently working with doctors trying to figure out what is wrong with me. You are the first person to ever describe how I feel. I'm pretty sure I have ME as well.

[@gowanderlustwithme]

It took me 2 years of elimination testing. I have all the symptoms but no one put all the pieces together. Took a sleep specialist

[@lorrainedeacons7566]

Thank you for sharing. I've had ME for 14 years it soul destroying. I can relate to everything you have just mentioned. If only people could see the horrendous turmoil that goes on inside our bodys . Thank you 💙💞x

[@lesliebblack]

I’m so glad I came across this Gary! I’m so sorry for what you’re going through, and by now I’m sure you appreciate that you are NOT alone! When I heard your first ‘vlog’ it was SO validating. I have senior parents who, after 2 years, still think it’s all in my head, and the brain fog is really my pain meds making me foggy. (Pain is a big issue cos I also have fibromyalgia and have kidney disease so can’t take the usual pain meds) . So it was just so good to hear encouraging from someone going through the same thing. IN all likelihood our ME will go into remission, hopefully sometime soon & we can get on with out lives. I’ve subscribed and look forward to your other vlogs and I wish you many good days!

[@lokee7]

Boy, do I identify with your "oven in the kitchen", Gary! Oh, and your toothbrush spaceout... I have my own personal favorites (some really quite funny, thankfully not harmful to anyone!), but way too many to list here. (ME 21 years) Thank you for the great symptom descriptions.

[@zonkedclub7681]

Lo Kee gotta love a bit of brain fog!!!

[@justbeachy2031]

My oints are janking ( My joints are aching )

[@lilsxylou]

Hi Gary! I’ve just came across this channel, i have been really bad with what I believe as symptoms of M.E./CFS for about a year now, countless blood work (everything comes back normal.) I have almost ALL of these symptoms you have mentioned. I’m really thankful I have seen this. I’m going back for blood tests again soon, and being referred to a neurologist next, I’m constantly sleeping all the time and being so sore and feeling run down as well as low moods too. Thanks so much for publishing your journey.💙

[@georginastone5375]

Brilliant, so succinct, thank you.... I’ve had it for 30years now, half my life, following a flu jab and had guillaine barre syndrome.....its a tough thing to live with. I also developed fibromyalgia 10 years ago which also is hard to manage....Good luck Gary, great to see someone who already is in the public domain speaking out, sorry you have it tho and hope it improves for you. Kind regards. Georgi

[@penelopelambson9128]

Expressing HOW IT FEELS. Describing the intensity of the bone crushing fatigue, the brain impairments, the need to be horizontal, the suddenness of a crash, how limited energy is and how unpredictable. All that and more please continue to repeat and emphasize. Describe a day again, or how the stimulus becomes overwhelming ( great analogy of wilderbeast) . People need to be told over and over what it’s like to be in an ME body bec we LOOK FINE!! Going on 35 years with this disease. People in my life still don’t really get it. We need more people talking about our day to day realities. Great job. Thank you

[@nancylamb1117]

I am glad your doctors saw the reality and helped you early on.

[@zonkedclub7681]

Thanks, Nancy.

[@JohnBedson]

@@zonkedclub7681 They didn't help him. They just diagnosed him. There is not treatment. No help. He'll never recover, he just does not know that yet.

[@juliakistner6298]

Much love for this.

[@lauramason5890]

Resonates so much. Thank you.

[@FrOgFrIeND753]

This is wonderful! I really love that we can all relate.. you explain it perfectly! Xx

[@bazmarty6084]

One of Gary's skills was just saying how he thought.His videos are a treasure to watch and gain an honest incite on living life with M.E.Sadly Gary passed away on Jan 1st 2022 after a long battle with cancer.He was a true champion and a voice for all of us.He will be forever missed.RIP.🦋

[@gowanderlustwithme]

I feel like this but I have a spouse with OcPD who expects constant productivity. Today I’m in tears because I did not have the energy to do everything I was “supposed to” do.

[@yamunadevi68]

Brilliant thank you so much, having people talk about this makes others who have this not feel alone.

[@brisvegas859]

thanks for sharing, makes perfect sense.

[@Lisabushaway20]

Hi Gary only just came across your video I’ve recently been suggested by my gp I have m e fybro along with my psa .. I’m devastated but also feel like finally someone his listening to me. Thank you for you honest account of how the simplest of things can exhaust us . Much love

[@jillianmartin6335]

Hi Gary I am so sorry you have this condition. I have been diagnosed with CFS and fibromyalgia. I have a b12 and iron deficiency and fatigue and pain is horrific. I think its great your talking about it and making people aware. I have had to give up my work just now and like yourself feel terrible guilt. Thank you for posting.....😊

[@imacowagossipandaslapper.2424]

Thank you for these videos. Struggling with it right now. Battling with it for ten months now.

[@samcross6597]

Thank you Gary i waiting to find out my doc is supportive .... im frightened x

[@sassiecassie5948]

Great video! I really can relate to how in your head you haven’t changed and still want to be the person you were before you got sick. For me it’s been 5 gradual years of suffering!

[@zonkedclub7681]

Cassandra McFeely thanks for your comments, Cassandra. It’s always good to know I’m not the only one feeling like this!

[@sassiecassie5948]

You are not alone Gary! Personally I had to go through the stages of grief to finally accept my new normal after thinking for years I might improve or THIS doctor will be able to fix me. It’s not the life we planned but we’ll all figure it out together along the way!

[@jnisrud254]

This is actually the first video ever that's made me laugh (the oven and "ms") in 10 years... Love your personality, pretty uplifting to watch you talk.

[@GuernseyGuy92]

Well done gary for putting this out there! Ive known you for many years now and im gutted that ME & CFS has hit you so hard as i know how bubbly you can be!! will defintely be following your "journey" with everything! hope to catch up with you at some point in the future :) Much Love!

[@zonkedclub7681]

Dan Lawrence cheers, good man!

[@heatherhartman6474]

THANK YOU, GARY!😍💗

[@joannef9520]

Thanks for sharing. I think it helps to know that other people are going through the same thing as myself. And what I really like about your videos is that you have a good sense of humor. Your doing a great job. Look forward to seeing more videos. :)

[@zonkedclub7681]

joanne f cheers, Joanne. I think that sense of humour is key. If I didn’t laugh, I’d cry! Thanks for watching and taking the time to comment.

[@seeyalater3147]

Yes.....Everything you said resonates...

[@wheelyhaunted]

Totally get it. Think I’ll be starting some Vlogs on my second channel once 2020 arrives. Keep going 👍🏼

[@ballkeeper6662]

i have fibromyalgia , probably me/cfs too ,what you described mostly is what i am suffering too i am 55 and now having to use wheelchair and walking frame for indoors.

[@juliefarrell3957]

Gonna sub

[@debbieteasdale3610]

This is your second video I’ve watched. I really appreciate your honesty and it’s uplifting to hear you talk about what I’ve never been able to make sense of. Thank you for making these. I’ve subscribed. Hope your doing well now

[@theprimalnutritionist5212]

Well done for recording this mate, I made a couple of very long videos a while back but never had the courage to post them.

[@zonkedclub7681]

The Primal Nutritionist Cheers, Tom. Quite an ‘exposing’ thing to do, but lots of good feedback is making it worthwhile.

[@theprimalnutritionist5212]

The best piece of advice I could give would probably be to try not to worry about what the people who are not battling with this illness think. The worst thing I've dealt with while I've been unwell is my own fear of judgement. People will watch this and say, 'he doesn't look unwell', but you have to remember that's their problem, not yours. Listening to people share their stories has really helped me, the best ones are the stories of people who have fixed themselves. Keep making these and you might just inspire me to make my own! : )

[@zonkedclub7681]

The Primal Nutritionist brilliant advice. Fear, guilt, worry, judgement are all things I regularly battle with. I’ve blogged about them but intend to blog on these things, as well as all the positive changes I’m continually making, in the hope of being helpful. As for you: do it!

[@nancylamb1117]

Doesn't this drive you nuts as a Nutritionist? I helped my guy get out of bed, lose 60 pounds, start cycling, and he had a massive recovery for a few years...and then the biggest crash ever. SO far, the only diet that really helped was a combo of the anti inflammation and FODMAP diets but even that didn't really help for long.

[@theprimalnutritionist5212]

I was diagnosed with CFS myself, but I refused to accept the diagnosis. Whenever conventional doctors refer to something as a 'syndrome' it basically means 'we don't know', 'we don't have time to figure it out', or it could possibly be because there's no money in treating it. I believe it's mostly down to gut health, specifically the health of the microbiome. My own fatigue improved vastly, after having fecal transplant treatment. The sad fact is, this illness is mostly caused by medical interventions that have happened prior to it's proliferation. The cause for me was way too many antibiotics during my 20s, a chemotherapy drug called Roaccutane, for acne, then more antibiotics. The most effective dietary approaches for me have been autoimmune paleo, ketogenic, low FODMAP, but as that is quite complicated, I'm now trying carnivore.

[@chihuahuapixieprincess2482]

I've had ME for 27 years and still have people say silly things like perhaps its my anxiety which understandably started during Covid - i was terrified of my miniscule life getting worse.

[@spijkerpoes]

My ME-d girl foggs up the most amazing word combinations! Amazing! We sure have a blast. 😑

[@juliefarrell3957]

Diagnosed in the early days

[@ssmith9707]

Hi garry I just been told I got me So listening to what you say could help me and other. We seem to very similar in lots of ways with live and style if that makes sense. Chris

[@LindaD02]

I just found you and am so thankful for your videos. Checking out the website now. I have a question. I have the random insomnia as well with my ME. My PT is trying to get me on a schedule to try to retrain my brain so he wants me up even if I have to lay on couch etc. only going back to bed if I absolutely have to. So many mornings my husband has to literally pull my feet and grab my arms to get me up. That being said. Do you set an alarm and get up in morning or do you just sleep until you wake up and then let your body decide what kind of day you will have? If I get overstimulated is when I get the insomnia. We are now trying the get out and get into surroundings that have a lot of different things going on and stay as long as I can handle it. This is the most frustrating illness I too was very active. Solve M.E. Is a great website and has an app you can put on your phone and watch that helps with pacing. It measures pulse rate and active energy.

[@MissAstorDancer]

Gary, do you have frequent episodes of fever? What about sore, swollen glands and/or sore throats? What about migraines or just severe headaches?

[@zonkedclub7681]

MissAstorDancer hi there. I went through about a year of night sweats and regularly have hot drinks make me boil and cold drinks make me freeze, but can’t say I’ve had sore throat or glands. My pain is general around my neck, and down my thighs, ankles and wrists. Sending best wishes.

[@justbeachy2031]

Sore throat and sore swollen glands are Hallmark symptoms. For me now it's an indication to slow down but years ago I had constant fevers and sore throat lose my voice get better for a few days. Lots of stages the brain fog was the worst. The grass is so brown! (Green). Look at all of those mountains (buildings). I had my own episodes of staring at the toothbrush and wondering what do I do now? Each step was excruciating on my brain to think it through. Thank you for sharing.

[@juliefarrell3957]

Don’t push yourself, best recovery of function chances in the first years....

[@mischa23406]

If you don’t know about the Perrin technique, you should. Good luck

[@shivangi6418]

Hey! What do you think caused Cfs in first place. Did you have a very stressful life?

[@debbiehardy8962]

So, I was diagnosed years ago with CFS. I am having SEVERE body pains, no strength, stay in my recliner all the time. Just brushing my teeth kills me. Holding this iphone is difficult. Like you, I use the wrong words. I have terrible eyesight now, like blurry. Like the lights are going dim on me. I am turning into a recluse and do not care anymore. I am too sick (though I do not look sick) to care. Many more things are happening but I will spare you. Guilt is one of them. Could this CFS still be making me feel like this?

[@jeansmyth262]

Only in some rare cases is ME a progressive illness and the chances of you recovering are good. Although it is boring, rest is the most important thing. I have yet to meet someone with ME who overdid rest. Good luck!

[@HomerSimpson85]

I'm curious if you're taking any natural supplements to help with your overall symptoms? I also have M.E/CFS and Fibromyalgia, and I've personally found taking Kratom as needed helps greatly with my overall symptoms. It helps greatly with my chronic pain, malaise/flu-like symptoms, nausea, dizziness, fatigue/exhaustion, as well as brain fog/cognitive dysfunction. If you haven't tried it, you definitely should. I figure if this stuff can help me and many others like us, then it can help you as well. :)

[@emmajones3131]

It's a condition people don't understand and it sucks more than anything

[@carlisle1322]

I've had ma for around 9 years now as a very fit ex PE teacher it knocked me for six I've slowly regained my health can I walk around 18 holes of golf but just have to manage the physical bit of it it's a horrible thing hopefully one day people will understand and find a true accurate diagnosis for it

[@zonkedclub7681]

neil bateman thanks for sharing your story, Neil. Wishing you all the best.

[@6473n64m19]

neil bateman I currently have CFS and am also a teacher, I think the stress of teaching (and I had been fired earlier in my career) had a lot to do with it, as well as other personality traits, I still work full time but god it’s miserable, I have an 1:45 mins of lunch duty and it murders me... honestly worse than lifting and golf does, I think I need to get out and have a less stressful job for awhile and do the Gupta program or something

[@me.vs.disease.x3506]

I am sorry that you have this but believe me it can be sooooo much worse. I also have total food intolerance because of this and my brain is berly working. Horrible man. WIsh you all the best.

[@zonkedclub7681]

me.vs.disease. x I am so sorry to read this but also so grateful for you taking the time to watch and add a comment. Wishing you all the very best.

[@me.vs.disease.x3506]

If you can please watch www.netflix.com/ro-en/title/80168300 , we are not alone the world needs to know about this .

[@zonkedclub7681]

me.vs.disease. x oh I have. Thought it very good in helping raise awareness and understand. So good that it’s now on Netflix to, hopefully, attract a wide audience.

[@JohnBedson]

Gary. You also have fibromyalgia. Do you know that? That's what's causing your body pain. Do you have POTS?

[@darlingstuff1560]

constantly failing arms/hands at the camera take way too much of my energy to watch and listen to....bye