Living with M.E - Short Documentary

www.adamjamesk...
Living with M.E is a first year University project for our single camera production module.
The documentary's subject is Mike, who has Myalgic Encephalopathy (M.E) or otherwise known as Chronic Fatigue Syndrome (CFS).
Directed by Holly Jackson
Produced by Holly Jackson and Charles Humphreys
Director of Photography
Hugues Nsio
Charles Humphreys
Adam Knight
Sound/Editing
Adam Knight

[@catcancrunch7260]

Getting a diagnosis and people to believe you is the biggest fight, without going through all the bloody tests ! And then losing everything you have worked for and your partner leaving you, and then trying to find a reason to live... FOR PEOPLE WHO DON'T UNDERSTAND DON'T BE JUDGEMENTAL ABOUT WHAT YOU DON'T UNDERSTAND !!! IT'S VERY REAL AND MORE EFFORT IS NEEDED TO UNDERSTAND WHAT CAUSES IT AND HOW TO GET WELL AGAIN .... it's wrecked my life for nearly ten years...

[@gunsmoke6230]

Thank you Mike for sharing the impact ME has on a once healthy person. I have ME too and seeing another man with the same condition and misery validates the illness for me. I'm 48 and have been ill from ME for a decade now and I am exactly like you. I walk slowly, talk slower, breath shallower, anxiety, depression you know the rest. Because of your documentary I see I have a brother that shares this disease. I don't know how you muster up the courage to expose yourself to the public. I remain married but am isolated to the world and have no desire to be seen in this weak, disabled condition. They say when animals are injured they hide it so they aren't preyed upon. I behave exactly the same way constantly guarding against exposure for the same fear. This is reality and I pray for a cure or go peacefully, for we are merely existing. John Houston, Tx. USA

[@tamara3194]

hey John i would like to speak with you also. If you want write me to my email or facebook account Tamara Wolf . stay strong

[@gunsmoke6230]

[e-mail] I look forward to hearing from you !

[@avalonmist254]

I am in Austin, I do feel isolated and I am happy to see a fellow Texan. I worry for my adult children, my daughter had mono in her teens. Posting with fellow ME folks adds so much from the loneliness that is imposed on us , we want to go out, however I can't move from the pain and exhaustion and only we know what it is like to have, good to have " a pen pal" . Blessings to you.

[@mannna9071]

John Shell I understand every word you wrote I live in a third world country.I lost all my friends except one.My neighbors make fun of me.In the last conversation between me and my mother about the disease She told me literally"This is the last time I will give you money for treatment Do not come again and tell me that your ass is sick"I lost my job and my future and my self-confidence, of course,I'm bankrupt and indebted.After all this I am not even sure of the diagnosis of the disease. .Even suicide is not an option Because my religion forbids it. This is where I ended up saying what I needed to say I do not know what I should say to you .Pray to God to have mercy on you and me

[@carolannetitmus8878]

BLESS YOUR HEART! That is from a Brit that moved from Texas a year ago. As with ME I had to give up driving and many other things...I was convinced that returning to the UK after many years would be the answer, free public transport and other things that made sense at the time. GET ME BACK TO TEXAS!!!! Please take care and make the most of your pen-pal and any other mental stimulation you can find even if it is just your fingers on the keyboard. Good Luck and perhaps with more brave people like this young man you can share this with family and friends to let them know you are not alone in your pain! If I could I promise you I would take you to THE SALT LICK and buy you an enormous steak with all THE FIXINS'! Or perhaps Mexican food?

[@avalonmist254]

I have ME/ in America : Fibromyalgia, I have over the years lost many/ most friends. I am always being told to get over it. What I see in Mike's face is what I have felt for years, the loss of a active productive life. So yeah, I have spent a lot of time in the past. I know that people that do not have this illness have no idea what the Loss we suffer from is like. Peace to you , Mike and to all that are suffering.

[@junaidesse]

Avalon Mist I'm sorry to hear that. I seem to understand that I have CFS too. I could see myself in the mannerisms of the person afflicted in the video- the slow taking, lethargic movements, gasping for air to speak while speaking normally..

[@JenWIL641]

Avalon Mist Have you ever tried Hyperbaric Therapy. I've performed 10 sessions. I felt better at the 10th session but I believe that I need MORE than one round of this treatment. I felt more alert and mentally clear without the brain fog. I've been to so many medical doctors and they have just fed me medicine. The meds have helped to make me more docile and sleep and incredibly dependent on prescribed drugs. One drug that actually worked was recalled due to reported deaths. I've been using herbal and seeing a chiropractor. I'm not pain free bit the chiropractor helps to release some of those muscle spasms. Natural anti inflammatory treatments have really helped me. I've surprised the oncologist when a tumor actually shrank in size within a year. I'm very happy with that finding 🤗. I do hope that you will find the right fit for yourself.

[@Ally-StaffyLover]

God I know where your coming from as I have M.E. as well as multiple auto immune disorders. Loosing friends because your ill really sucks & I've lost friends & no help from family. I completely understand what it is like & it's a very isolating illness worse when you live alone. We don't choose to be ill we just have to try & get on with it the best way we can. I'm not gona say hope you feel better soon as that just never seems to happen. Take care x

[@alexandrakuhl]

@eireanngomaith creations they are often linked though...I have both.

[@manuelborris1648]

tf.....i have both cfs and fibromyalgia too

[@katstarwolf3763]

Along with being accused of being lazy, those with ME/CFS are also often accused of being hypochondriacs. Nothing could be further from the truth. But because this isn't a 'disease/disorder' that is easily recognizable, visually, it's difficult to convince our detractors that what we're experiencing is real. I've had this condition since I was at least 5 years old -- I'm 64 now. Of course, it wasn't officially recognized back then, although there have been numerous cases written up in medical literature, several, in particular, from the mid-to-late 30s. This is a real condition. I've run the gammut of every doctor/healthcare provider in both the allopathic and holistic healthcare systems without any real respite. And add to that having numerous allergies and primarily being allergic to every pharmaceutical drug I've been prescribed, and one can imagine the despair those with this condition may additionally experience. Unless you are unfortunate enough to have this condition, you can't even begin to imagine what it is like.

[@heatherhartman6474]

I am a disabled Army veteran. I grew up really sick with many viruses and infections. It was insane how sick i was. They found genetic issues with me before I went into the Army. I thought I was better. Till the day I was called to swear in. I had REALLY BAD tonsillitis and got really sick numerous times and hospitalized while serving in the Army. Then when I got out I started my medical career. I started working too many jobs and became a workahaulic. I was a proud 23 year old owning her first home and didn't want for anything. I worked VERY hard but had less time for play. I felt weird my whole life and have gotten so many infections. I seriously had to work harder at things than a lot of people because of this. And then suddenly it hit me too hard back in 2008/2009. I lost everything and now can barely take care of myself. But now I'm treated as if I'm lying and lazy!!!😭

[@denisesynder2799]

Please look into horse dewormer paste, I believe 1.87% . Safe for humans. It’s curing people of all things that originated from parasites.

[@sallyfoley5242]

God said no🤷‍♀️take your own word for it

[@Dontmind8]

@@sallyfoley5242Are you shaming her because of her illness?

[@paul2019monte]

Your comment regarding having to work harder than everybody else for things because of the constant illness. This was me.

[@heatherhartman6474]

Hi everyone! Thank you for reading and commenting. EXCEPT for the first crappy comment. I appreciate it and pray everyone reading the comments has a better life & healthier years. You are worthy, and you do matter. 🤗 UPDATE: It took till February of this year to FINALLY be properly diagnosed for the never-ending immune system issues since being increasingly ill since Dec 2007. My doctor at UT Heath Medical Arts & Research Center diagnosed me with Chronic Active Epstein-Barr Virus(CAEBV) and I also got my 100% Total & Permanent Disability status through Veterans Affairs in 2022 for worsening injuries I got in the military which was backdated some years so I recieved a lot of backpay. Great I can pay bills and take care of things now, though. Before all of this, I went through a lot of different treatments that failed and to this day I am even more ill unfortunately. Over the past 12+ years I have had some messed up laboratory tests of high white blood cell count and high EBV viral loads so ALL of my doctors always believed something was going on with me but didn't know what to do with me. I have friends with fibromyalgia & Myalgic Encephalomyelitis/Chronic Fatigue Syndrome also who were treated like liars by military doctors AND doctors at Veterans Affairs. It is SO sad! I continue to try to help her also and pray she finds relief from her increasing pain & sickness symptoms. It's a difficult nightmare to be in. SO MANY SYMPTOMS!! So much PAIN!! It is SCARY! Going through all of this illness had also taught me to be even more sympathetic to other patients. I find MOST patients are NOT lying about their symptoms and how bad they get. As far as the people who acted like I was lying and lazy, I finally had to go completely no contact with my extremely mean, abusive & bullying piece of crap NOTfamily. I know I am not the only one with crappy family. People can take a hike if they call you a liar & ALL of your doctors' liars. It DOES NOT HELP! There is a special place in hell for those kinds of people! Like the first person who commented on my comment. 🙄 I reported them.

[@SamsIndieDrumCovers]

Good on you guys for putting light on this. I have ME and it's every bit as grim as it seems & more

[@Skolborne]

Sam how are you now?

[@Ally-StaffyLover]

Exactly your so right.

[@catcancrunch7260]

Don't I know it ! I hope you start to pick up.

[@LindaD02]

Been dealing with it for 2 years post Covid. On FMLA the 2nd time

[@rebeccamiller6950]

Thank you for showing the world some of the silent struggles of ME sufferers. My daughter has it, she has just turned 16, she was an athlete and a gymnast. She finds it hard to stay positive about her future.

[@Alice-kq8eo]

I have this, I'm 15, it's honestly one of the worst Disorders/Syndromes.

[@anonymousandcool]

Chronic fatigue syndrome is very real. I suffer from it and it's changed my life, my body, and people's perception of me. Of the three, people's perception of me is the hardest to handle. It needs more research and validation :(

[@dd-pm9cg]

It shows how the so-called normal healthy people are emotionally so numb and dumb. I sometimes wonder how People can trust an invisible GOD when they can deny anything far from their comprehension from a fellow living beings. Even the learned educated crowd often pass rude comments and that’s disheartening.

[@childoftheking2214]

I sure hope you have had some recovery since making this video. I was diagnosed over 24 years ago when I was in my mid 40’s. Although I have had a few bouts where I was well enough to leave the house, most of the 24 years I have been housebound because of the illness. I consider a day where I can bath, dress myself and make my bed a good day. I absolutely rejoice when I hear of someone with ME/CFS regain some of their life back. I sure hope you are one of them.

[@LittleGarlLost]

Thank you for sharing Mike's story and shedding light on M.E. I am a sufferer of M.E. myself. Its important that we raise awareness for such a debilitating illness (as well as other invisible illnesses) that are very, most often, misunderstood. I have lots to say, but will leave it at just this: Thank you.

[@evnrblx]

I was diagnosed at 24 and by 25 I was on welfare then disability and I was.. like most.. very energetic and a go getter. It happened suddenly from one day to the next I was a different person. It was devastating..fast forward 20 yrs later and I have bouts of fatigue.. but it is better than being bed bound. I have two children..I deal with the fatigue..pain and brain fog. It is not easy but I rely on the Lord to get me through it and hope I can give comfort and support to others with all I have learned from this. Be blessed..be encouraged.

[@laviniacapogna4]

Thank you Adam for sharing this video. I have M.E. for 11 years and I am disabled. Love to you and all patients in the world, Lavinia from Rome, Italy

[@annabanana960]

I can feel the way he feels, you just feel like u are gonna break down and cry all the time, because the strong, active person u once were, no one will ever see again.... Been suffering with this nightmare for 19 years now, and honestly can say, Mike, it can get better. Not back to normal but better.. hold on xxx

[@ILoveMaths07]

Why not back to normal? :'(

[@AlbaLynxQueen]

@@ILoveMaths07 it's incurable and chronic

[@DrFrankyDolan]

Thank you so much for sharing this truth. We need SO MUCH MORE HELP! But it starts with telling our stories and helping each other through it! ...Thank you so much for helping to raise awareness!!

[@JediNiyte]

Going on 24 years for me. I understand perfectly.

[@dawnralphson8173]

Well done for finding the energy to make this film. I've also got m.e and loved being outside all year round. The best I can do now is wrap up and sit outdoors. Much love to you x

[@mandastar8955]

As a fellow M.E sufferer, thank you for sharing

[@chrisproost7290]

After a long fight... 20 years against abuses by family and partners, giving up myself for all their causes to the point of illness (and now with nothing to show, my life is nothing while they go on from strength to strength) and after a final crash 3 years ago that left me semi bedbound, I finally got enough attention last year to get a diagnosis... Fibromyalgia on the one hand (I literally crashed and burned, boomed and busted over and over for years until one day I simply couldn't get up again) on the other hand, Ankylosing Spondylitis that was ignored and so untreated for 20 years and is now too late to do much about. I've lost everything. I have no dreams left for they are now unattainable and I am bitter that I put everybody else first, thinking that I would be able to see to my own needs later, only to find out that God or whoever says 'NO!'... I literally feel I have no place left in this world but rotting in this one room alone, unwanted and ineligible. I can't get housing because my family, the ones I gave up everything to help, were not only sickeningly abusive for years but also exploited me to gain themselves a house that they have allowed to go to hell by getting a mortgage in my name, which renders me ineligible for social help. And now a new issue has come up... my screwed up adrenals... and the docs reckon it is ME/CFS but don't want to do anything about it (but they're more than forthcoming in telling me all about exercise, diets and supplements that require more money than ESA can afford and how I shouldn't feel down or sleep so much) Like I need more reasons to not go on living at 40? I have maybe 20-30 years of life to go of being alone (what woman would happily be with a chronically ill guy with no money or assets? I might be a carer and a good guy but it doesn't matter, good guys finish last when they're in good health and wealthy so what can I expect?) to look forward to with little of the past to keep me warm but PTSD, abuse, wasted effort and relationships that ended catastrophically (because of their cheating or drug addiction) Even heroin junkies can get by better and with more help than I can. I would die by my own hand today if not for my cowardice and a little foolish thing called hope that exists beyond things like reason. I'm about done with this life, the world and the human race. Why isn't there more awareness of ME/CFS/FM and such? It affects more people, and far more adversely, than diabetes, HIV, obesity and other conditions with a 'one pill or treatment fix or solution' that are ALL we hear about in medical/health news... I am so mad and desperately frustrated by my end that I literally want to scream until my throat ruptures while smashing my head against on the wall until darkness takes me. Karma, which I worked hard to gain and should have good credit in, sucks arse.

[@jordangould1541]

You're only chances of happiness is to surrender to the love of God. It may not fix you physically. But spiritually you will be happy. I recommend vipassana meditation and Krishna consciousness mantra. You are a infinite divine light and through spiritual practice you will awaken to this fact and it will ease you're suffering I promise

[@alexandrakuhl]

That is a sad story Chris, I do get the sentiment having fibro/cfs and inflammation myself. Your name sounds flemish - are you?

[@paul2019monte]

Hi Chris. How are you now? I think "family" can be the worst. They take our kindness and generosity when we are well and return it with derision and exploitation when we are ill. 😥

[@prairiepet]

I understand Mike and am so sorry. I too have cfs( 10 yrs) changed every aspect of my life. Gods peace my friend

[@bannanaskin666plays9]

I have M.E and social anxiety,currently in school and when I get sick it hits me hard, missing school days or forgetting homework really screws me up...life is so hard..but everyone keep your chin up

[@joebloggs9957]

Bannanaskin666 plays me to, I’m 13. People don’t understand, your seen, but not heard. I don’t remember what it’s like to not be sick.

[@Dlma04]

I too live with the factors that debilitate me with CFS. You are brave to share your story, shame on those who gave you a thumbs down, why? If you do that please comment and say why! Walk 10 steps in our shoes to understand.

[@catherinebentley7700]

I hope you're doing ok Mike, CFS\ME is such is debilitating, joy sucking, miserable condition. Best wishes for you're improved health.

[@campabino2969]

I have had ME for 4 years now and will pbbly have it for life being older. It is really hard some days. Specially when family comes over for a weekend and they just don't get that even one day of having company over to sleep makes me exausted even worst two days! Everytime they leave I spend 3 or 4 days in bed. It is the most debilitating disease ever.

[@WinChun78]

I can relate entirely. I got M.E. after an operation in 2003, which went successfully, but led to me collapsing in the street 12 months later. Like most with this, there are terrible days where you are fit for nothing and brighter days which are not as bad. I take that as my reference point for who I am, rather than relating to how I feel when I can't do anything. I take it as a challenge of will, to push on, as there is something deeper inside us that still calls us on, no matter how difficult things get. I was already into Kabbalah before I got this and have found the system invaluable to coping with this, to actually still distil worthwhileness from life despite the crushing adversity. It makes life feel like climbing a mountain, sometimes with rocks that cut into your hands and freezing ice that numbs the brain, but one day we will reach the peak where we find the soul, for a sublimely exalted view. What doesn't kill us can make us stronger, though it is not an easy path by any means, and certainly not one I would have chosen had it not been foisted upon me, but like that song, Amazing Journey, by The Who, sickness can sometimes take the mind where minds can't usually go...

[@daniellairish4732]

I am totally healed from 7 years with Lyme disease then CFS/ME with POTS. I used neural retraining to do this, I felt better right away, and 2 months later it was gone. I like to speak up about this because no one gave me this information and I had to spend years researching and trying different protocals and nothing worked until rewire. Be well Adam.

[@mihakavcic7237]

How are you Daniella, are you normal now?

[@emmajeannelson]

What is neural retraining?

[@ILoveMaths07]

What is neutral retraining?

[@Dteshome85]

This is an illness induced by viruses,pathogens and environmental toxins Brain retraining and psychologizing ME won't do anything We need science based treatments

[@ununun]

Thank you for this video. It no doubt was draining. So very important to the rest of this unwilling M.E. community. I'm in Manchester, UK. I've had M.E. since 1995, with IBD and autoimmune hormone disease. The latest black joke upon me is severe fibromyalgia, which worsens during the rest that is essential with M.E.. I can't remember feeling well. I have perhaps one day every two years wherein I seem to go into revision before the hell piles back on me, always overnight. I've lost friends, girlfriends (no sex crucifies me) and the respect of colleagues and neighbours. Mood swings. Generalised anxiety. Post-surgical trauma. My hobbies have become assault courses of Endurance just to keep focused for twenty minutes. Awful sleep disturbances. Severe restless legs syndrome. I've had 24 years to adapt my home-life to M E.. Latterly to fibromyalgia. Maybe there is finally hope on the horizon with a surge of biomedical research and possibility of repurposing existing medications to mitigate this debilitating 'complex medical fatigue' and all connected autoimmune diseases. Amen.

[@c.laviniamulholland585]

Thanks for sharing your story. I really hope one day you can feel better and recover. I am going through diagnosis for CFS/M.E myself. and lots of this is familiar. Much love to you.

[@jamiemanderson8697]

A battery completely depleted, that can never recharge is how i explain ME, besides all the other miserable effects.

[@s.k.2017]

jamie manderson omg. That is exactly how I describe it to people now. Slightly different though.....I say I have a battery that will never fully charge to 100% again. No matter what charger you buy, different outlet to plug in, etc (metaphor for all the things we try to try and “cure” ourselves). I must accept for sanity reasons that my battery will only ever achieve 30% on a good day so I have to make the tough choices of how to spend that % with all the things that NEED to be done, and all the things I WANT to do. Because once that battery is drained that’s it!!! There is no just plugging back in to power up, or change the battery, caffeine, stimulants, energy drinks, etc have no effect. You are forced into your bed again to try and power back up. And this “powering up” again is also an unknown number.....sometimes it’s a couple of days and sometimes it’s a couple of weeks..... and even then the bitch of it is you’ll only get the 25-30% charge! This I find is the hardest for people to understand because they have known you have been in bed for days so they expect you to be “rested”! When people say this to me my response now is...”I should be right?! But welcome to my illness ! ! If you feel frustrated with me, imagine how frustrated I am with myself. This not about not being positive or lazy, but if you really want to believe that’s what my issue is...I don’t have the energy to disagree or fight with you about it because the little energy I get I need to use in positive ways than arguing with someone. I have to try to continue to make money, going to doctors appointments, trying to stay connected with my loved ones even if it can only be via social media or text messages ( even this is challenging most days) but it’s important to me, spending time with my animals and practicing self love!” Anything else I refuse to share my precious energy reserves on. From one fellow sufferer to another....my prayers are for all of us who struggle to exist in this new world of ours and to not stay angry about the people we used to be. ❤️

[@32446]

It’s horrendous. Sometimes I feel so sick I feel like I’m dying. It’s robbed me of my career, my relationship and even my chance to vote this year. I hope to be well one day.

[@gerinewall2094]

hi,I am the other end of the age scale 62, have been a gardener, hill walker,always enjoyed the outdoors, but this horrible affliction has me in bed for 12/15 hours a day..everything changes,I am a totally different person to who I was 3 months ago...

[@jordangould1541]

I know what you're going through. Sending love and light.

[@avalonmist254]

I am now 57 a shell of what I was when I began this journey. 12 years ago and at first I thought for sure I would get well. I actually feel better alone most days on my couch with my dog. People make me nervous with so many expectations of me to just get up and take a walk to feel better , do you not think I have tried that..At a cost. This disease stole me, , my life, and I found out the hard way , that it is normal when illness hits to lose most if not all of my friends. Geri, I pray you get better after only 3 months you could still get better.

[@jordangould1541]

+Avalon Mist Hi Avalon. If you're looking for some relief of your symptoms I highly recommend practicing vipassana meditation (body scanning meditation). It will not cure your CFS - but I promise you the symptoms will be easier to manage and you'll be happier.

[@avalonmist254]

Thank you Jordan for your prompt response. I will look up this form of meditation when I wake up. I do a form of body scanning now , I do this to get in touch with my intuition too. Happier is a fantastic idea.

[@carolannetitmus8878]

Your dog I know feels like your only friend and is a life saver. My heart breaks for these many young people who have their lives, relationships, goals destroyed by this disease. Now I see that I am so truly Blessed! I was able to have a wonderful, full and happy life until the past few years so I have my memories to entertain me now. Most of which I have to say was in Texas. At 71 "you can take The girl out of Texas but you can't take Texas out of the girl." I just remembered another place to go for a cold drink at The Oasis with those views.

[@jacobtaylor4258]

i've been suffering with fatigue for some time now, they told me i have sleep apnea, i have been on a machine for 18 months, the fatigue keeps coming and going, i decided i was going to be a blood donor 12 months ago, and every time i gave blood i came out of the centre like a new man, i was at rock bottom last week, then i received a phone call from my gp, he said i could have ME, the next day i was due to donate blood, i dragged myself there my body was aching and my vision was blurred, the nurse tested me and started to take blood, i could see my eyesight getting better and energy coming back into my body, that was friday, sunday i went for a 14 mile cycle ride, bit stiff today but fine as yet, i am not saying this is a cure, i may have other things going on, but if the blood is bad then change it, and if any one decides to donate blood, please please make sure you do it through a medical practitioner, god bless everyone.

[@beatles925]

That is truly fascinating. Thank you. I read something recently that states we have microplastics in our blood and so far the only way they know to get rid of them is to donate either blood or plasma.

[@ILoveMaths07]

What about cupping?

[@devora]

thank you for bringing this on the youtube forefront God speed Mike , i was diagnosed in 1992 , it has taken more than 20 yrs to get this M.E. to calm down .. and carry on with a somewhat normal lifestyle . One can get well, but the DISCIPLINE is what will set you free. i did years of deep study since dr's had no information and the drugs weren't working. it took a long time and allot of study . A lot of study . one has to learn everything the dr's study to get their PhD , as well as ayurveda and chinese medicine, neurpthay and immunology etc it really helped (little things like body brushing , although at the time it was too exhaustive to even wash a few dishes) as well as EVERy seemingly crazy out there Zealot health food thing there is . and i made a lot of mistakes too! but in the end . I KNEW i could help others , the western diagnosis wont cure , but will help to atleast keep you out of crisis long enough to gain momentum . OM

[@ILoveMaths07]

What exactly did you do? May you share that with us, please?

[@willb3520]

I got ME from pills I took while in the hospital. A patient in the hospital told me to take pills and I didn't want to, but ever since I have developed ME.

[@tordlindgren2123]

When I was around 12 I started getting headaches, being light sensitive, developed insomnia and started throwing up when I was working out. Eventually through my teens I always felt tired, but shook it off because I was working out 13 times a week, normal to be tired right? Well, highschool ended and I stopped working out because I needed to concentrate on getting a job and do other things, the tiredness didn't go away. In fact it gradually increased along with other weird symptoms, finally went to the doctors when I was around 26. Got some somac and life went on, ofcourse I continued getting more and more tired. I went from being able to work two jobs to not being able to do much after one job, eventually I started having problems getting through 5 hours of work last year. At the moment I work about 48% and try to get my normal doctor to refer me to a specialist, it's due to money he has to do that. Otherwise I won't get it covered. I don't remember when esactly I learned about ME, but it was crazy reading about it and see that every odd symptom downwards fit with those I have.

[@florence1395]

I don’t think the stress of continuously explaining ourselves helps! It’s exhausting. Having Fibromyalgia/cfs/hyperthyroidism & others stuff for about 30 years! I’ve come to my happy place, I just don’t care what other’s have to say...........I’m abit of a recluse. Occasionally I’m up for going out!

[@jonock1]

True. I have had relapse after relapse since getting benefits became more difficult. Having to repeatedly explain your symptoms to disbelieving assessors is a nightmare when your brain won't function.

[@SethNoorzad]

Thank you so much for this video. I came down with ME suddenly xmas day 2022. I've been adapting to a new normal over the last year.

[@JohnStJulienBabaWanyama]

Iv been this way for 18month now... but outdoors ppl should go to Germany for lyme testing. UK said I was negative Germany found every strain of borrelia in my body... I took antibiotics and energy is slowly returning... In love ❤🙏

[@heartwarmingguitar1134]

Thank you. I so appreciate this!

[@cyprianac.691]

thank you for sharing! it really helps! hope you are ok!

[@Ladybird22373]

Bless him. Meditation & telling myself a different story got me better . Your brain is not separate entity , it is keeping you stuck in illness mode . Change it

[@nestechen]

True. Are you completely healed now?

[@Ladybird22373]

@@nestechen 95% , I might get a few symptoms but not often . Your body can not heal in stress mode . It was the worse experience of my life . You are suddenly disabled & you don’t understand why . But honestly once I started to calm my nerves & tell my brain , a different story constantly, I then started to recover. I couldn’t believe it at first but it worked.

[@nestechen]

@@Ladybird22373 Yes brother I noticed the same thing! You have to be calm and trust that everything is alright. What also helped me is praying, I believe in my father who is always there, comforting me.

[@Ladybird22373]

@@nestechen what ever calms you , your body can’t heal in stress mode . Are you ok now ?

[@nestechen]

@@Ladybird22373 I’m not feeling too well because I overworked myself last week, I felt extremely ill the last week. Now I’m slowly recovering.

[@diceydaze]

Anyone experience slight paralysis, periods of cns inflammation, face pressures…

[@ericagardens1234]

It’s sad how the personality gets affected. It’s hard enough dealing with tje physical aspect

[@josephjrmondo1127]

....Keep on Mike, keep living, keep smiling, you will find that niche, God Bless you,!...

[@helmaschine1885]

Mike looks and sounds exactly like me at my worst. Sometimes i lose my ability to talk clearly too and I become drooling and monosyllabic

[@tamara3194]

Hi, i would like to speak to this guy on the video and know how is he feeling now . I suffer from this terrible illness for 10 years and i guess he is at the first state of ME or maybe its not ME, its Lyme

[@LSAMace]

I feel ur pain. Same thing 10 years

[@ChrisGroggyCreaser]

- I've Suffered Over 32 YEARS Absolute HELL with "Chronic Fatigue Syndrome"/ME/Fibromyalgia/"Severe Mental Impairment" here in Hull,UK; & I'll be Bloody GLAD/Relieved When the Scientist's find a PROPER CURE for it!!!! - I Can't find a girlfriend/wife Because of having them!!.... :( - Am Always falling asleep,etc,etc!!

[@livingcolourful7783]

Thank you for making this short documentary, I enjoyed watching it, and my heart goes out to Mike. I've heard of a breathing method that can have a positive effect on chronic fatigue; it's called Buteyko. It may be worth giving a go for anyone suffering with chronic illness/fatigue.

[@mayflower2158]

Thank you

[@morryswigs2005]

Hi Adam, thank you for your video. I’ve had CFS since jan 2011 after having a virus in Dec 2010. It can be a daily battle. I’ve lost my job and I’m now on welfare. I was wondering, have you ever been tested for Lyme? What with you working in the countryside. Apologies if you’ve been asked this before.

[@wowbrothers6312]

Annie Hopper. Dynamic Neural Retraining System is curring people. Check out the testimonials.

[@wollysocks1]

I heard on the film "unrest" it can be caused by an unknown trauma & that fits with me as I have no memory of childhood. As I grew I was always sleepy, then exhausted. I don't have any support so if anyone wants to chat please do.

[@mihakavcic7237]

How are you doing Wolly? Any progress?

[@danashannon8234]

Hello. You have not posted in a while. I was wondering about you. My condition is worsening unfortunately.

[@mary-piergaudet3323]

What About LYME/MOLD Disease???

[@Eloise_Please]

M.E. can have a lot of the same symptoms and I know people who have been wrongly diagnosed at first because of this, but they're not the same thing.

[@phylr3983]

@@Eloise_Please they sure as hell have the same symptoms. At least in late stage lyme. I can relate to this video on so many levels. I finally, after many years and many doctors, found an infectious disease doc who would run a western blot. Lyme specific bands. I was once exposed to lyme and never treated and it disseminated.

[@Eloise_Please]

@@phylr3983 Really glad you finally found a doctor who took you seriously and ran the right tests, it's horrendous how people are so often neglected by the medical system. Sorry it got so bad, I was also diagnosed too late with an illness there's not much treatment for, and I understand how difficult it is. It's a relief to have some answers, at least. Please don't think I meant Lyme is not as serious or dissimilar, I absolutely understand how equally bad it is, having close friends go through it (originally misdiagnosed with ME due to the similarity) and thought to have it myself until I was finally correctly diagnosed with EDS and ME/CFS as secondary (among others on a long list), which share many symptoms. It took me 8 years of trying and a lifetime of difficult health to get any help and it's still not enough, and I'm sure your experience has been as difficult - as so many people's are. I only meant that it's okay to focus on one specific illness for one short video, and respect that awareness needs to be spread about Lyme and other chronic illnesses to - I know they are equally in need of exposure. I didn't articulate that well and that's my bad. I have so much love and respect for anyone living with chronic illness and disability, and believe we should all support eachother and be stronger together ❤️

[@phylr3983]

@@Eloise_Please Thank you RH. I didn't take offense to your post. I'm curious to what triggers these illnesses. In my case, I suspect it was exposure to borrellia burgdorferi that went untreated, but still have no definite answers and no cure.

[@mihakavcic7237]

​​@@phylr3983 So many triggers, the newest is covid. Some cases of long covid are identical to CFS/ME.

[@heatherhartman6474]

Adam! How are you now?

[@shellcshells2902]

Does a rheumatologist diagnose ME?

[@willb3520]

what is a gp?

[@papercup2517]

@@willb3520 In the UK and Australia a GP is a general practitioner, equivalent to what I think Americans call their primary care physician, or one's family doctor.

[@jewelleryaddict]

@@papercup2517 america we call main doctor a g. p. for general practioner. or general practice no specialty.

[@paul2019monte]

October 2024. Wondering how you are doing Mike? ❤

[@miriamsmith7098]

Hi Mike, have you been tested for Lyme disease as your job and hobbies involved a lot of time spent outdoors?

[@Karatekidca1]

I have this and my mother had the same ....... three of my children has the same diagnosis

[@mihakavcic7237]

What is wrong with you all? Are you living together?

[@TheUnknown-yx8zc]

Do not give up hope on recovery ever. I am about 92-95 percent recover and back to doing Brazilian jujitsu after 11 months and have a job and in school. Diet, supplements(coq10 is a good one), brain retraining(Gupta program), cold water exposure(cold showers) water and no fap brought me back. I still get occasionally fatigue and have a very small amount of brain fog buts it’s not to the point of deblitation. If I feel a little weird I go lie down and listen to a meditation guidance from Gupta or soul chakra bineral beats for 20-30 min. Makes me feel instantly better

[@mihakavcic7237]

Who are you?

[@TheUnknown-yx8zc]

@@mihakavcic7237 a 21 year old who recovered

[@mihakavcic7237]

@@TheUnknown-yx8zc What do you think it was? What do you think of CFS/ME is? How long did it take you to get back on track?

[@TheUnknown-yx8zc]

@@mihakavcic7237 took me about 11 months to get back on track. Back at bjj since then and doing well in it. Sometimes I have minor symptoms still buts it’s no where near as bad or delibtaing as it was before. I notice that I get some minor symptoms if I jerk off and /or eat sugary foods. Change ur habits and have good habits and ur life will change

[@TheUnknown-yx8zc]

@@mihakavcic7237 also cfs is horrible

[@MyFriendPeter]

Does anyone know how Mike is now?

[@scotscub76]

How is Mike doing now?

[@hopealways247]

Any updates since you made this video?

[@brandihudy8600]

I get up and go to work 5 days a week but I pay for it every evening by hurting so bad in different parts of my body and run usually a 100.5 fever from around 5pm until the next morning it’s back to normal

[@davejones4740]

Severe fatigue. You worked on Dartmoor. Extremely high levels of radon gas are present on that place. If you live anywhere near there get as far as possibly away. Check gov website for radon gas in your area.

[@orchidsnlyme1564]

Sounds like Lyme Disease!!! Lyme disease docs i.e. LLD's...Lyme Litterate Doctors are best to get proper Diagnosis to see is it is or isnt 🌸. Can be hard to diagnose and treat!!! Sometimes one has to travel to see a LLD but its worth it!

[@sampreston1791]

I hate it, it takes away everything you love about life. I was studying in the same field, been to the jungle and climbed mountains but it's all over. All my skills and experience is of a physical nature and the moment you lose that physical capacity... what do you do? I can totally understand how he feels, especially missing the badgers

[@rosangela6326]

Coloca a tradução em português, se alguém poder por favor

[@boyer6556]

10 years for me had a long spell of being ok now recently had a bad spell hopefully on my feet soon. i hope :)

[@EyeOnAntisemitism]

I’ve had it for 30 hrs and now I’ve had a severe relapse

[@ILoveMaths07]

Yrs

[@tessgirl383]

I think I’ve got ME . I’m scared . But I know people who have it & leading work lives & managing there syndrome well

[@MrFumeCinema]

Could this not be Lyme?

[@MrFumeCinema]

Brandon Bacchus Iv been diagnosed with cfs for three years. But the more I look into Lyme the more it seems suited to my symptoms. It's over £1000 for the test though and I need to be positive I think it is :)

[@MrFumeCinema]

Brandon Bacchus so what should I do?

[@69birdboy]

There is a company in germany i think that do the proper test, not the nhs that can apparently throw up false positives..google germany lyme testing..the name of the place escapes me...SEcond to that..have you seen the work done by fluge and mella? They say m.e is an autoimmune disease of the blood vessels? another group in stand ford university in california are making inroads in treating infections...they are the three things i think are potentially happening with you..(and me.)..or at least what springs to mind...lyme(perhaps if you have been out in the forests a lot) autoimme disease..i think thats me...and infections that are stealthy....Fluge and Mella have a huge trial finishing at the end of the year..standford have cured some people and lyme can be treated if you have a firm diagnosis..so good luck..ask me anything else..maybe i can help?

[@69birdboy]

By the way, the anxiety, or fight or flight state m.e people ar renowned for is said by the norwegain researchers, to be an after effect of your immune system attacking your blood vessels..

[@MrFumeCinema]

An autoimmune doctor was who diagnosed me with CFS. I do have constant anxiety but I don't know why and it's so hard to control. Is it possible to send me a message privately anymore on KZbin?

[@gulzarbibi8935]

I have it 😰

[@suzannethompson9261]

Bless your 💓..I have cfs too and I feel ya

[@LSAMace]

Maybe 15

[@brainyway4003]

this video is to much called a documentary...as it doesnt present multiple aspects of what cronic fatigue brings.. is much more like an interview of his inner feelings as cronic fatigued and regrets

[@JenWIL641]

The fibromyalgia sufferers may want to consider Hyperbaric Therapy. I've met someone else who had the same symptoms and widespread pain and has linked it to a tick bite (Lyme's Disease). Some antibiotics may help but in the long run may be some herbal anti-inflammatory care, vitamins such as C, and a NO processed foods diet. I've had to stop sodas all together along with certain trigger foods.

[@Gospelwatcher]

Did you all notice that most ME patients are British?

[@sairabinns7962]

Gospelwatcher don’t be so stupid all your life, do some research

[@jonock1]

That's just cause they call it ME. It's called other names elsewhere such as CFS

[@catsandcarsringtailgang6188]

DON'T USE A. !!! DON'T USE ACRONYMS ! now does THIS MAKE SENSE TO YOU!

[@brandihudy8600]

I get up and go to work 5 days a week but I pay for it every evening by hurting so bad in different parts of my body and run usually a 100.5 fever from around 5pm until the next morning it’s back to normal