It's just amazing to think that I actually carry on these days, almost as if nothing happened. To think there were weeks, months when I was just lying there in that bed, sunglasses on, barely moving a muscle. It was so, so difficult for me to explain to others what was happening to me. And then one day, when I was basically at the end of my tether, I saw a doctor who told me he actually believed me, and that he was sorry for everything that I'd gone through, and that he could see very well that I was suffering. It felt amazing for someone to just reach out and acknowledge it..
When he says "I know what it is like to be healthy", I tell doctors that all the time. I used to be an anthlete, I know what is like when you are out of shape, tired and need to rest. So by knowing that, you know you are not healthy anymore and how much of your life you are losing since it all started.
I'm an able bodied person but i think it's so important for people like myself to educate ourselves on visible and invisible disabilities. I'm glad that people with ME have someone as awesome as stuart murdoch as an open ambassador for the community. I love Belle and Sebastian so much!
In my experience, that's a tough one. Most of the time it is pointless - the understanding is just not there in the general public (still!) But other times - like Stuart was saying later in the video - we find people who do understand, and are willing to be supportive (or at least flexible!) around what we're going through.
I had no idea about this, and I've been a fan for years, seen him live several times dancing and singing for two hours. Love your band, Stuart. You're the best.
Thank you Stuart....as a Glaswegian with severe ME for 24years we need voices like yours to spell it out the reality of this living death at worst Keep as well as you can. Yes one day we all shall get treated!X
Well said Maureen: ironically me too 'a Gladgwegian' but been living in England since my late teens. It is indeed a hellish condition and clearly a spectrum with varying degrees. Just over 5+ years for me and the first 19 months were 99.9% bedfast but I'm still 99% housebound. Spent a fortune on supplements and a few therapies made me much worse. Still trying to piece my individual jigsaw together - it's daunting. Lots of childhood infections and viruses, head injuries, bad relationships stresses but I'm still hanging on fighting looking for a personal cure or at least management. The UK certainly didn't treat this seriously at all, and if you just look at the statistics it's fast becoming epidemic proportions as are all Autoimmune Dysfunctions. In the meantime many thousands of people around the globe are basically being neglected and abandoned. Genuine M.E. patients, as well as CFS (it's different) & only one symptom of the M.E. as well as Fibromyalgia (similar but again, different) are getting desperate but forgotten about, still trivialised and said "It must be in our head's etc. Well actually YES it is, it's extreme inflammation causing an absolute multitude of horrid as well as painful symptoms. Even sitting up is actually far too exhausting many days. I've just been verbally abused by a man a fortnight describing us as all depressed, after I explained that's why I actually failed the criteria for Research Trials at a CFS Hospital Research Trials Group. I was rejected due to 'at the time' saying I'm not depressed. Frustrated and at times low - but not depressed. I have been since - but I challenge anyone who loses 3 close family members to cancer all within a few months of each other 'not' to get a bit depressed because of those sad circumstances - whereby you've not even got enough strength to muster up and get to visit any to say your goodbyes. There's a massive difference! So it's high time someone somewhere stepped forward to help find a solution to many needlessly wasted lives and get some "serious research and answers please". All former life is absolutely gone for many of us and 'yes' it's a solitary existence minus any real understanding by the majority of the population. Sending Love Hugs and Hope to all others deeply affected by this wherever you may be! ♡☆♡
@@sombradevenecia3665 your welcome dear sombre de venecia (unusual name) 😊 I sincerely hope you are well and not struggling with this hellish mysterious living death as well! 😥 Far too many of us already. Lol these "lockdown" complainers make me laugh. They should try this enforced bedfast and/or mostly housebound day & night 365 days a year on year after year. This is our "normal m.e. bubble world' but we've just got to get on with it & be our own researchers, therapists and physicians. No other option for most of us. However we won't be beaten or quit and we smile in the face of adversity (most day's). I just found all this again due to your kind message and hard to believe I'm now into year 7 already, yet was trying to convince myself - "this darned thing won't get me - no way, but it still won't release it's grip. My daughter took me out for an hour yesterday & it felt wonderful - only 3rd time over my front door since February & it's September now already. One of those was yet another funeral, my precious big brother died of cancer back in June & the 2nd trip out was briefly again my girl drove us out to the local hills to just sit & take in a beautiful view as I want coping too well with the painful grieving bit at all. Now I've something called Perrin Therapy restarting also after 7 months of it being cancelled for covid. If anyone is reading this, it's well worth a try & looking into. It's not a 100% cure, but "can be the start" of one for many people. It's basically a Deep Lymph Drainage therapy. A trained professional does it weekly, then fortnightly after a time then monthly whilst your taught how to self treat &;it's advised X3 daily, but that's usually far too often & difficult for me to actually squeeze in 3 therapies a day. However it's always worth a try. The Perrin founder has a clinic in Salford (UK) but he's trained several Osteopath, Physios or Chiropractors to do his specialist training & you can just Google & hopefully find one closest to you and self refer. All the best one & all. Keep on keeping on. Love and Blessings to you all!!! 🌈💜🌺👍😘
Thank you so much for your eloquent words. You describe this illness so well and you speak for so many people. My son, aged 15 now, has ME since he contracted EBV and other viruses in immediate succession at the age of 12 and simply never recovered his health. He has been almost exclusively housebound since that time and has missed all of his second level schooling. That makes him very sad. Like you, viruses are his big weakness and if he picks something up it can literally have him bed bound for months at a time.
Really Grateful for you talking so transparently about your experience. Great video, super articulate, heartfelt account and great overview for people who don't know much about this. I've been living with ME/CFS for almost 20years. Now mostly homebound. So important the misconceptions and myths about this illness are dissolved / re written. Talks like yours, well spoken from people in the public eye, are such a gift. Thank you!!!!
Thank you so so much for talking about this. It's great to have a high profile person talk about M.E. You're so articulate about your experience of this awful condition.
To the SolveCFS interviewer and Stuart- Thank you both for using your time and energy to have this interview. What was the BBC's response to the show idea? Stuart, it was brave of you to propose this idea, especially given that you just had a child and have a demanding career. If the show is still a possibility, I will support you in any way that I can. Thank you again for allowing yourself to be so vulnerable publicly- it takes an amazing strength to share our perceived weaknesses.
Thanks for such a positive interview, Stuart.You know what it is to live with such a condition and how you must adapt the way you live. You are right, your ME friends understand and offer great support.
Fantastic Stuart! Thank you so much for coming out about the reality of living with this incapacitating illness. More awareness will facilitate innovative research that will deliver routine medical treatment of substantial efficacy - in contrast to every intervention at present (expect potentially Rituximab and Ampligen).
Good to see this interview. I recently watched you speak in the #MillionsMissing UK2020 video. Thank you for sharing your story with the rest of the world. I think a lot of us patients have gone through a stage when we wanted to leave the illness behind and not talk about it. Thankfully we are finding strength in connecting with each other and creating awareness by speaking out.
Many of us suffer without support of any kind. I am grateful for Any Stories about a Severely Disabling Disease such as CHF / ME , the Disease itself is Quiet Suffering. I too remember what it was like to be" Healthy" . 12 years ago I became very ill after years of stresses, the first straw that broke me in 2005, I was a nurse working in a Psychiatric hospital, I had to hold my patient so she would not kill herself, as she struggled my neck was fractured. I was not given care from Workman's Compensation for 3 years and was bedridden, I found out in 2008 , a doctor said" you have a broken shoulder, neck, and Severe Ligament damage for 3 years and now you are no longer a surgical canidate! And he discussed Auto Immune Disorders, apparently I had such a strong Immune response my injuries healed on their own but my immune system was in over drive killing my good cells too. Fatigue does not begin to cover the severity of this mal adaptation that is insufferable pain and Social Loss !
My heart goes out to you "Avalon" only just read your story now. I sincerely hope your feeling healthier and doing better than when you wrote this! Much Love ♡xx
Incredible, inspiring account. Although it affects us all in a myriad of different ways, there still seems to be a great degree of universality expressed in Stuart's words.
Thank you so much for doing this interview for us Stuart, you spoke so well about the reality of this illness. It is a very difficult thing to articulate well, but I feel you have done a very good job describing what its like to live with ME/CFS. I'm so happy you have decided to become our ambassador. (I'm sorry to see a few people left you nasty comments, but by far the majority appreciate all you are doing for us) I saw your open medicine interview also and I want to say thank you from the bottom of my heart. I think it was very brave of you to go ahead and have children and you also appreciate your wife for all she does (which is awesome!). I love your bands music also, the songs are quite beautiful. Thanks for speaking out for all of us. It is very brave to talk about this illness amid so much social ignorance, and sometimes outright hate.
Thanks for having the guts to admit this publicly. You're right, it less acceptable for males to have CFS/ME as we expected to be strong, emotionally tough and bread winners. I got this at 18 yo in 1986....... It's now 2016; I'm now 48yo, so that's 30 years of living with it. People who don't have it, have NO idea what we have to deal with. Even doctors suggest that you're depressed, try antidepressants or ECT: (Tried both & they were of NO help at all). When you tell them you don't really feel sad or depressed directly, but feel brain fogged & fatigued. I need to sleep around 11 hours a day. Everyone pretty much thinks you're making it up, so you can avoid working. It's demoralising, especially for males. I too have preferred not to tell people, as they just don't get it. Even relatives. It's easier they think it's a mental illness or they you simply are a dole-bludger, and want to avoid working. (They can understand those concepts). It does leave male suffers stigmatized, isolated & with reduced income. They tell you if you're sleeping 11 hours a day, it's too much. Then if you sleep 7 hours and feel like you're continually tired, they same people tell you need to sleep more. Then they (people & doctors) make backhanded comments that's it's psychosomatic. Especially, as a middle-aged man who lived with this for 30 years now, I do some voluntary work to keep busy, sleep half the day away, use all my spare energy to walk my dog in the middle of the day, and spend the rest of the time, watching the TV news & documentaries about other people's lives...... as I can only live my life on the couch watching other people live theirs on TV. The idea of going outside in noise and bustle, is overload for an extremely foggy mind. Or holding a conversation takes too much brain energy. Again, people simple don't believe this is a real illness. There is NO effective treatment for this illness. I have tried all the magic potions and spent so much money over 30 years for gastroenterology, orthopedic specialists, looking for new GP's, sleep specialists and psychiatrists. ....and they not interested in how all the muscle, gut, sore joints, brain fog & concentration issues are inter-related. in the end, until medical science can find a test to show there is some sort of neuro-inflamation or immunological issue, we are not going to get any help from society. I live the life of a recluse, as old friends simply get sick of hearing you feel sick & fatigued all the time. They end up thinking it's all in your head. The most frustrating thing is people with ME, get lot's of sleep, eat really well, I get 30 mins of sun every week (for vitamin D & boaster my immune system)..... and everyone keeps on telling me.... "But you look sooo well." People associated a healthy weight range and sun-tan with good health. These are not real markers of health,....they're superficial markers. For all intents & purposes, we look very healthy (on the outside) .......so everyone comes to the conclusion that ME is a figment of our imagination. Who in society would have the energy to debate with friends, family & doctors that this will not get better with a couple of nights of good sleep and chicken soup. Stuart, I read about your story on the "Emerge Australia - CFS/ME" monthly newsletter. You put into words, very well how males have to deal with it. Hopefully, medical science will find a REAL concrete test for ME. On that day, then we can say: " See I told you, I was sick". I hope I'm still alive & young enough to see the day. God bless us all & give us strength. PS: Stuart, you're right, I get the gay or marginalized empathy. This illness makes you understand that others in society are unfairly punished for being different. As we are marginalized, we empathize with so many others who suffer any form of discrimination.
I was told it was stress.. then I was told I have depression. I was not depressed, I was extremely exhausted. I slept for days and had to sleep/nap between activities, like taking a shower or eating a meal. Doctors do not know much.
Wow...what he says is exactly how it is for me too! I came describe any better. I wonder how many famous people also have ME CFS and hiding it to stay away from the stigma. Stuart Murdoch is SO brave to speak out for us, we need MORE people like him, celebs etc if there are more of them and can speak out, I think it will help raise awareness of the public to this very misunderstood and debilitating illness
tHANK YOU SO MUCH,i'M SICK OF MY LOST LIFE,and always been a belle and sebstian fan(i actually hated them at first,it was sinister album and i hid it from my friends ,hahaZ)didnt know his exact illness, but felt the same way.this is the first time ive heard of anyone speaking of it in music tearms,let alone the cherished Stuart Murdoch.the fact that no one sees it,like he said,no crutches,no marks or psigns to hold up
Thank you so much for sharing your experience! I'm a big fan of yours and also a keen songwriter, and learning of all you've achieved in spite of the illness has really uplifted me in my recently diagnosed state. All the best to you!
Thank you for your comments and story. Having ME means constantly being misunderstood and unfairly judged. Rising above that plus coping with the illness takes great strength. Ironic, isn’t it?
I do often wonder if it can be a male personality trait to want to try and keep the illness from others. After all it must be virtually impossible to hide the illness from others when it turns into far from ordinary tiredness, debilitating illness, and set backs. You do notice how quickly people move about and their fast pace. I think the illness gives an unusual ability to cope with doing everything at a slow pace or being in one place for some time, when pushing on through the feeling ill, makes you feel even worse. I'm so pleased Stuart has the support from the band mates who get it, as all to often people are in denial about how ill somebody with ME/CFS actually is. Whereas in reality there is nothing more dramatic than years of being ill with the illness and having to change every aspect of your life. Yet to write a song about that, I expect would be a bit too deeply personal and revealing or depressing sounding.
Thanks for speaking out about your illness Stuart. We are patients, families, friends, helping to raise funds for Invest in ME Centre of Excellence Biomedical Research projects, currently two major studies; on the gut microbiome (as most of the immune system is in the gut) and research aiming to identify likely responders to B-cell deletion therapy for clinical trials of rituximab. ldifme.org/
I think the stigma of ME/CFS is worse for men. We are expected by society to be stoic and productive. I would love to see some statistics on this, but I bet men are more likely to try to cover up their illness.
I couldn't agree more. As a male ME sufferer I find it very difficult to talk to people and friends about because they often don't understand or ridicule, so I keep it a lot to myself. And it doesn't help that the vast majority of sufferers I read about online tend to be female, and many ME sites and pages appear quite feminine. On facebook I regularly see women reaching out to offer support to each other when they're down or not well, but on the rare occasion that a man complains of an ailment it's almost always met with ridicule or tumbleweed. 'Man up', 'man flu', etc. It's very refreshing to listen to Stuart Murdoch opening up about his experience.
not so sure, women could be covering up so that they are accepted at a variety of groups as well as to protect the family against being thought of as "deprived" or "unable to care for her children"
I disagree. As women we are immediately put into the he psychosomatic corner and it is extremely hard to get out. And as for societal expectations: There are as as many as with men, maybe even more. At least in Europe.
- I got CFS/ME/Fibromyalgia back in 1987 & have Suffered ABSOLUTE HELL with it ever since in the UK!! - Due to my ex wife kicking me out of our shared home & splitting me up with our daughter & her stealing ALL my money & 95% of my possessions!!.... :( *I lost my job,etc All in One day!! - IBS/Brain Fog & Absolute DESIRE TO REST/SLEEP,etc is Almost Overpowering!! - U Can't think properley/talk properley/carry out a decent conversation properly/Find genuine romance,etc,etc,etc in the UK!!... :(
@@mihakavcic7237 non stop garbage ,if it's not fatigue, numb limbs, joint pain, brain fog, exhaustion after only 5 minutes of cleaning my house... have tried every vitamin under $20. Trying herbs turmeric, thyme, cilantro, nothing helps. Excercise, do yoga sometime s I can get up do something, other times I can only go back to bed! Eating healthy. Will try more herbs. Same old, same old. Keep trying. Thank you for asking! 🙏💋💖 God bless , later! All I have energy for now!
Christina I will write to you fully but currently I am to much in holidays. I need to be really relaxed and focused when talking to people in 20%-40% where I think you currently are. I was there for 2 yeras but managed to get out. I am currently at 81% 😉 and hoping to rech 100% before summer. Are you familiar with CFS/ME scale?
@@mihakavcic7237 no honey but will look it up! I have been to many a website like ansrewire and solve/ CFS...guess what they want a couple hundred I don't have! Right now no drugs work, from naltrexone to lidocaine to amitriptyline. Doing herbs like turmeric thyme cilantro. Bengay heating pad. Chiropractor didn't help. Supplements don't work! Attempt to try medical marijuana. Have to go now talk later!🙏💖🤔👊😘🧐
STUART HAS AN AMAZING WAY 0F DROPPING HIS PAST COMMENTS LYRICALLY. .(WHAT A NASTY PERSON)..HIS BAD KARMA, ITS GREAT TO WATCH THIS POSH PROD WINCE......AND TRY TO JUSTIFY HIM SELF AROUND THE SIMPLE SYMPTOMS OF ANXIETY AND DEPRESSION, POOR POOR BOY
Wow...what he says is exactly how it is for me too! I came describe any better. I wonder how many famous people also have ME CFS and hiding it to stay away from the stigma. Stuart Murdoch is SO brave to speak out for us, we need MORE people like him, celebs etc if there are more of them and can speak out, I think it will help raise awareness of the public to this very misunderstood and debilitating illness
It's just amazing to think that I actually carry on these days, almost as if nothing happened. To think there were weeks, months when I was just lying there in that bed, sunglasses on, barely moving a muscle. It was so, so difficult for me to explain to others what was happening to me. And then one day, when I was basically at the end of my tether, I saw a doctor who told me he actually believed me, and that he was sorry for everything that I'd gone through, and that he could see very well that I was suffering. It felt amazing for someone to just reach out and acknowledge it..
When he says "I know what it is like to be healthy", I tell doctors that all the time. I used to be an anthlete, I know what is like when you are out of shape, tired and need to rest. So by knowing that, you know you are not healthy anymore and how much of your life you are losing since it all started.
I'm an able bodied person but i think it's so important for people like myself to educate ourselves on visible and invisible disabilities. I'm glad that people with ME have someone as awesome as stuart murdoch as an open ambassador for the community. I love Belle and Sebastian so much!
Thank you soooo much for talking about your experience. Raises my spirits to hear people like yourself speak out about M.E Thank you
"No point in talking to non ME people so exhausting" ... true. Thanks
In my experience, that's a tough one. Most of the time it is pointless - the understanding is just not there in the general public (still!) But other times - like Stuart was saying later in the video - we find people who do understand, and are willing to be supportive (or at least flexible!) around what we're going through.
thank you so much for this interview! 💖
I had no idea about this, and I've been a fan for years, seen him live several times dancing and singing for two hours. Love your band, Stuart. You're the best.
Thank you Stuart....as a Glaswegian with severe ME for 24years we need voices like yours to spell it out the reality of this living death at worst Keep as well as you can. Yes one day we all shall get treated!X
Well said Maureen: ironically me too 'a Gladgwegian' but been living in England since my late teens. It is indeed a hellish condition and clearly a spectrum with varying degrees. Just over 5+ years for me and the first 19 months were 99.9% bedfast but I'm still 99% housebound. Spent a fortune on supplements and a few therapies made me much worse. Still trying to piece my individual jigsaw together - it's daunting. Lots of childhood infections and viruses, head injuries, bad relationships stresses but I'm still hanging on fighting looking for a personal cure or at least management. The UK certainly didn't treat this seriously at all, and if you just look at the statistics it's fast becoming epidemic proportions as are all Autoimmune Dysfunctions. In the meantime many thousands of people around the globe are basically being neglected and abandoned. Genuine M.E. patients, as well as CFS (it's different) & only one symptom of the M.E. as well as Fibromyalgia (similar but again, different) are getting desperate but forgotten about, still trivialised and said "It must be in our head's etc.
Well actually YES it is, it's extreme inflammation causing an absolute multitude of horrid as well as painful symptoms. Even sitting up is actually far too exhausting many days. I've just been verbally abused by a man a fortnight describing us as all depressed, after I explained that's why I actually failed the criteria for Research Trials at a CFS Hospital Research Trials Group. I was rejected due to 'at the time' saying I'm not depressed. Frustrated and at times low - but not depressed. I have been since - but I challenge anyone who loses 3 close family members to cancer all within a few months of each other 'not' to get a bit depressed because of those sad circumstances - whereby you've not even got enough strength to muster up and get to visit any to say your goodbyes. There's a massive difference!
So it's high time someone somewhere stepped forward to help find a solution to many needlessly wasted lives and get some "serious research and answers please".
All former life is absolutely gone for many of us and 'yes' it's a solitary existence minus any real understanding by the majority of the population.
Sending Love Hugs and Hope to all others deeply affected by this wherever you may be! ♡☆♡
@@aharowna3539 thank you for describing it so well💜
@@sombradevenecia3665 your welcome dear sombre de venecia (unusual name) 😊
I sincerely hope you are well and not struggling with this hellish mysterious living death as well! 😥 Far too many of us already. Lol these "lockdown" complainers make me laugh. They should try this enforced bedfast and/or mostly housebound day & night 365 days a year on year after year. This is our "normal m.e. bubble world' but we've just got to get on with it & be our own researchers, therapists and physicians. No other option for most of us. However we won't be beaten or quit and we smile in the face of adversity (most day's). I just found all this again due to your kind message and hard to believe I'm now into year 7 already, yet was trying to convince myself - "this darned thing won't get me - no way, but it still won't release it's grip. My daughter took me out for an hour yesterday & it felt wonderful - only 3rd time over my front door since February & it's September now already. One of those was yet another funeral, my precious big brother died of cancer back in June & the 2nd trip out was briefly again my girl drove us out to the local hills to just sit & take in a beautiful view as I want coping too well with the painful grieving bit at all. Now I've something called Perrin Therapy restarting also after 7 months of it being cancelled for covid. If anyone is reading this, it's well worth a try & looking into. It's not a 100% cure, but "can be the start" of one for many people. It's basically a Deep Lymph Drainage therapy. A trained professional does it weekly, then fortnightly after a time then monthly whilst your taught how to self treat &;it's advised X3 daily, but that's usually far too often & difficult for me to actually squeeze in 3 therapies a day. However it's always worth a try. The Perrin founder has a clinic in Salford (UK) but he's trained several Osteopath, Physios or Chiropractors to do his specialist training & you can just Google & hopefully find one closest to you and self refer. All the best one & all.
Keep on keeping on. Love and Blessings to you all!!! 🌈💜🌺👍😘
@@aharowna3539 👌💖💖💖
Thank you so much for your eloquent words. You describe this illness so well and you speak for so many people. My son, aged 15 now, has ME since he contracted EBV and other viruses in immediate succession at the age of 12 and simply never recovered his health. He has been almost exclusively housebound since that time and has missed all of his second level schooling. That makes him very sad. Like you, viruses are his big weakness and if he picks something up it can literally have him bed bound for months at a time.
joan how are you. Im sorry to hear about ur son. How was he diagnosed? What test? Or tests
Really Grateful for you talking so transparently about your experience. Great video, super articulate, heartfelt account and great overview for people who don't know much about this. I've been living with ME/CFS for almost 20years. Now mostly homebound. So important the misconceptions and myths about this illness are dissolved / re written. Talks like yours, well spoken from people in the public eye, are such a gift. Thank you!!!!
Thank you so so much for talking about this. It's great to have a high profile person talk about M.E. You're so articulate about your experience of this awful condition.
To the SolveCFS interviewer and Stuart- Thank you both for using your time and energy to have this interview. What was the BBC's response to the show idea? Stuart, it was brave of you to propose this idea, especially given that you just had a child and have a demanding career. If the show is still a possibility, I will support you in any way that I can. Thank you again for allowing yourself to be so vulnerable publicly- it takes an amazing strength to share our perceived weaknesses.
Thanks for such a positive interview, Stuart.You know what it is to live with such a condition and how you must adapt the way you live. You are right, your ME friends understand and offer great support.
I like the way he explains what it's like. Sometimes it's hard to be objective when you've been struggling with it alone for years.
Fantastic Stuart! Thank you so much for coming out about the reality of living with this incapacitating illness. More awareness will facilitate innovative research that will deliver routine medical treatment of substantial efficacy - in contrast to every intervention at present (expect potentially Rituximab and Ampligen).
Good to see this interview. I recently watched you speak in the #MillionsMissing UK2020 video. Thank you for sharing your story with the rest of the world. I think a lot of us patients have gone through a stage when we wanted to leave the illness behind and not talk about it. Thankfully we are finding strength in connecting with each other and creating awareness by speaking out.
Many of us suffer without support of any kind. I am grateful for Any Stories about a Severely Disabling Disease such as CHF / ME , the Disease itself is Quiet Suffering. I too remember what it was like to be" Healthy" . 12 years ago I became very ill after years of stresses, the first straw that broke me in 2005, I was a nurse working in a Psychiatric hospital, I had to hold my patient so she would not kill herself, as she struggled my neck was fractured. I was not given care from Workman's Compensation for 3 years and was bedridden, I found out in 2008 , a doctor said" you have a broken shoulder, neck, and Severe Ligament damage for 3 years and now you are no longer a surgical canidate! And he discussed Auto Immune Disorders, apparently I had such a strong Immune response my injuries healed on their own but my immune system was in over drive killing my good cells too. Fatigue does not begin to cover the severity of this mal adaptation that is insufferable pain and Social Loss !
My heart goes out to you "Avalon" only just read your story now.
I sincerely hope your feeling healthier and doing better than when you wrote this!
Much Love ♡xx
as a severe me/cfs sufferer this video was a great watch. love him
Incredible, inspiring account. Although it affects us all in a myriad of different ways, there still seems to be a great degree of universality expressed in Stuart's words.
Thank you so much for doing this interview for us Stuart, you spoke so well about the reality of this illness. It is a very difficult thing to articulate well, but I feel you have done a very good job describing what its like to live with ME/CFS. I'm so happy you have decided to become our ambassador. (I'm sorry to see a few people left you nasty comments, but by far the majority appreciate all you are doing for us) I saw your open medicine interview also and I want to say thank you from the bottom of my heart. I think it was very brave of you to go ahead and have children and you also appreciate your wife for all she does (which is awesome!). I love your bands music also, the songs are quite beautiful. Thanks for speaking out for all of us. It is very brave to talk about this illness amid so much social ignorance, and sometimes outright hate.
Thanks for having the guts to admit this publicly.
You're right, it less acceptable for males to have CFS/ME as we expected to be strong, emotionally tough and bread winners.
I got this at 18 yo in 1986....... It's now 2016; I'm now 48yo, so that's 30 years of living with it.
People who don't have it, have NO idea what we have to deal with. Even doctors suggest that you're depressed, try antidepressants or ECT: (Tried both & they were of NO help at all). When you tell them you don't really feel sad or depressed directly, but feel brain fogged & fatigued.
I need to sleep around 11 hours a day. Everyone pretty much thinks you're making it up, so you can avoid working. It's demoralising, especially for males. I too have preferred not to tell people, as they just don't get it. Even relatives. It's easier they think it's a mental illness or they you simply are a dole-bludger, and want to avoid working. (They can understand those concepts). It does leave male suffers stigmatized, isolated & with reduced income.
They tell you if you're sleeping 11 hours a day, it's too much. Then if you sleep 7 hours and feel like you're continually tired, they same people tell you need to sleep more. Then they (people & doctors) make backhanded comments that's it's psychosomatic.
Especially, as a middle-aged man who lived with this for 30 years now, I do some voluntary work to keep busy, sleep half the day away, use all my spare energy to walk my dog in the middle of the day, and spend the rest of the time, watching the TV news & documentaries about other people's lives...... as I can only live my life on the couch watching other people live theirs on TV. The idea of going outside in noise and bustle, is overload for an extremely foggy mind. Or holding a conversation takes too much brain energy. Again, people simple don't believe this is a real illness.
There is NO effective treatment for this illness. I have tried all the magic potions and spent so much money over 30 years for gastroenterology, orthopedic specialists, looking for new GP's, sleep specialists and psychiatrists. ....and they not interested in how all the muscle, gut, sore joints, brain fog & concentration issues are inter-related.
in the end, until medical science can find a test to show there is some sort of neuro-inflamation or immunological issue, we are not going to get any help from society. I live the life of a recluse, as old friends simply get sick of hearing you feel sick & fatigued all the time. They end up thinking it's all in your head. The most frustrating thing is people with ME, get lot's of sleep, eat really well, I get 30 mins of sun every week (for vitamin D & boaster my immune system)..... and everyone keeps on telling me.... "But you look sooo well." People associated a healthy weight range and sun-tan with good health. These are not real markers of health,....they're superficial markers. For all intents & purposes, we look very healthy (on the outside) .......so everyone comes to the conclusion that ME is a figment of our imagination.
Who in society would have the energy to debate with friends, family & doctors that this will not get better with a couple of nights of good sleep and chicken soup. Stuart, I read about your story on the "Emerge Australia - CFS/ME" monthly newsletter. You put into words, very well how males have to deal with it.
Hopefully, medical science will find a REAL concrete test for ME. On that day, then we can say: " See I told you, I was sick".
I hope I'm still alive & young enough to see the day.
God bless us all & give us strength.
PS: Stuart, you're right, I get the gay or marginalized empathy. This illness makes you understand that others in society are unfairly punished for being different. As we are marginalized, we empathize with so many others who suffer any form of discrimination.
I was told it was stress.. then I was told I have depression. I was not depressed, I was extremely exhausted. I slept for days and had to sleep/nap between activities, like taking a shower or eating a meal.
Doctors do not know much.
Thank you so much.
So much sense and understanding of the condition here - it really helps to explain to non-ME sufferers what it’s like to live with it long-term
What a special interview.
Wow...what he says is exactly how it is for me too! I came describe any better.
I wonder how many famous people also have ME CFS and hiding it to stay away from the stigma. Stuart Murdoch is SO brave to speak out for us, we need MORE people like him, celebs etc if there are more of them and can speak out, I think it will help raise awareness of the public to this very misunderstood and debilitating illness
True genius.
tHANK YOU SO MUCH,i'M SICK OF MY LOST LIFE,and always been a belle and sebstian fan(i actually hated them at first,it was sinister album and i hid it from my friends ,hahaZ)didnt know his exact illness, but felt the same way.this is the first time ive heard of anyone speaking of it in music tearms,let alone the cherished Stuart Murdoch.the fact that no one sees it,like he said,no crutches,no marks or psigns to hold up
Thank you so much for sharing your experience! I'm a big fan of yours and also a keen songwriter, and learning of all you've achieved in spite of the illness has really uplifted me in my recently diagnosed state. All the best to you!
Thank you for your comments and story. Having ME means constantly being misunderstood and unfairly judged. Rising above that plus coping with the illness takes great strength.
Ironic, isn’t it?
I do often wonder if it can be a male personality trait to want to try and keep the illness from others. After all it must be virtually impossible to hide the illness from others when it turns into far from ordinary tiredness, debilitating illness, and set backs. You do notice how quickly people move about and their fast pace. I think the illness gives an unusual ability to cope with doing everything at a slow pace or being in one place for some time, when pushing on through the feeling ill, makes you feel even worse.
I'm so pleased Stuart has the support from the band mates who get it, as all to often people are in denial about how ill somebody with ME/CFS actually is. Whereas in reality there is nothing more dramatic than years of being ill with the illness and having to change every aspect of your life. Yet to write a song about that, I expect would be a bit too deeply personal and revealing or depressing sounding.
Thanks for speaking out about your illness Stuart. We are patients, families, friends, helping to raise funds for Invest in ME Centre of Excellence Biomedical Research projects, currently two major studies; on the gut microbiome (as most of the immune system is in the gut) and research aiming to identify likely responders to B-cell deletion therapy for clinical trials of rituximab. ldifme.org/
I think the stigma of ME/CFS is worse for men. We are expected by society to be stoic and productive. I would love to see some statistics on this, but I bet men are more likely to try to cover up their illness.
I couldn't agree more. As a male ME sufferer I find it very difficult to talk to people and friends about because they often don't understand or ridicule, so I keep it a lot to myself. And it doesn't help that the vast majority of sufferers I read about online tend to be female, and many ME sites and pages appear quite feminine. On facebook I regularly see women reaching out to offer support to each other when they're down or not well, but on the rare occasion that a man complains of an ailment it's almost always met with ridicule or tumbleweed. 'Man up', 'man flu', etc. It's very refreshing to listen to Stuart Murdoch opening up about his experience.
not so sure, women could be covering up so that they are accepted at a variety of groups as well as to protect the family against being thought of as "deprived" or "unable to care for her children"
I disagree. As women we are immediately put into the he psychosomatic corner and it is extremely hard to get out. And as for societal expectations: There are as as many as with men, maybe even more. At least in Europe.
I agee.
- I got CFS/ME/Fibromyalgia back in 1987 & have Suffered ABSOLUTE HELL with it ever since in the UK!! - Due to my ex wife kicking me out of our shared home & splitting me up with our daughter & her stealing ALL my money & 95% of my possessions!!.... :( *I lost my job,etc All in One day!! - IBS/Brain Fog & Absolute DESIRE TO REST/SLEEP,etc is Almost Overpowering!! - U Can't think properley/talk properley/carry out a decent conversation properly/Find genuine romance,etc,etc,etc in the UK!!... :(
I feel you man.. it’s really hard to find someone who wants to be with a sick person..
I was a vegetarian - I felt sick and tired - I was sick a lot of the time, some people can be but I can not be
Go to medical school. Fatigue is multifaceted and organ based often times
Would have been great if the person interviewing was not humming.
I hear a lot of blah blah blah but no progressive medication, waste of time
How are you Christina?
@@mihakavcic7237 non stop garbage ,if it's not fatigue, numb limbs, joint pain, brain fog, exhaustion after only 5 minutes of cleaning my house... have tried every vitamin under $20. Trying herbs turmeric, thyme, cilantro, nothing helps. Excercise, do yoga sometime s I can get up do something, other times I can only go back to bed! Eating healthy. Will try more herbs. Same old, same old. Keep trying. Thank you for asking! 🙏💋💖 God bless , later! All I have energy for now!
Christina I will write to you fully but currently I am to much in holidays. I need to be really relaxed and focused when talking to people in 20%-40% where I think you currently are. I was there for 2 yeras but managed to get out. I am currently at 81% 😉 and hoping to rech 100% before summer. Are you familiar with CFS/ME scale?
@@mihakavcic7237 no honey but will look it up! I have been to many a website like ansrewire and solve/ CFS...guess what they want a couple hundred I don't have! Right now no drugs work, from naltrexone to lidocaine to amitriptyline. Doing herbs like turmeric thyme cilantro. Bengay heating pad. Chiropractor didn't help. Supplements don't work! Attempt to try medical marijuana. Have to go now talk later!🙏💖🤔👊😘🧐
So Christina, we should schedule a chat.
Are you free any time on Friday?
Regards Miha
STUART HAS AN AMAZING WAY 0F DROPPING HIS PAST COMMENTS LYRICALLY.
.(WHAT A NASTY PERSON)..HIS BAD KARMA, ITS GREAT TO WATCH THIS POSH PROD WINCE......AND TRY TO JUSTIFY HIM SELF AROUND THE SIMPLE SYMPTOMS OF ANXIETY AND DEPRESSION, POOR POOR BOY
oh you are sooooo ignorant. Learn about the illness before you open up and "share"
?
Actually he's quite a nice person and you have no idea what you're talking about.
Wow...what he says is exactly how it is for me too! I came describe any better.
I wonder how many famous people also have ME CFS and hiding it to stay away from the stigma. Stuart Murdoch is SO brave to speak out for us, we need MORE people like him, celebs etc if there are more of them and can speak out, I think it will help raise awareness of the public to this very misunderstood and debilitating illness