@thetrollbasher The huge difference between depression and ME is shown by: people with depression find it difficult to be motivated, but often feel better after some exercise or activity. It is the complete opposite with people with ME, who are still almost always very highly motivated (despite everything), but they actually get very ill after doing the smallest amount of activity. I really hope that helps.
Thank you so much. Compassion is the best medicine. It is empowering! A few days ago I was in bed after a long day of dealing with ME/CFS and my parents were having a discussion about how my symptoms had worsened and they were beginning to frame it like I was choosing to withdraw (which is not the case). I was not able to speak more than a few words at any one time without severe pain, but I don't think that really understood what what I was going through in my body. So I was laying in bed with a lot of sadness, and feeling quite hurt. Then through the wall I heard my dad say: we just have to have compassion for what he's going through...I almost cried. It was the right thing to say at the right time and it took away most of my worry and allowed me to get to sleep. Compassion!
This video made me cry! I've had CFS for almost five years, and it always makes me emotional when I hear someone explain it well. It's so rare! Recently I've been dealing with some college professors of mine who don't understand that I really am sick. I'm so lucky just to be able to stay in college! I'm registered as a disabled student and still some professors still question the reality of my illness. Especially the first half of this video, I felt like you were talking about me.
Me too...26 years & I feel like I'm slipping away more quickly as the years pass. I'm too weary to detail what's sacking the little bit of life left but it has to do with my home being in horrendous disarray & as one who was almost OCD since staying super organized was like a built-in energy booster. I am just as the lovely man suggested, HIGHLY motivated, creative, and always overflowing w enthusiasm, etc. I pray for an "organizer angel" continually: one who gets amped up when a challenging clever solution is wanting! Someone like...ME!
Thank you. This video made me cry! It's as if you were talking about me. I've got a supportive husband and don't know how I'd cope without him. I'm going to share this video.
WONDERFUL VIDEO! I've had Fibromyalgia since 1982 and CFIDS/ME since 1987. For nearly 30 years, I have endured the misunderstanding and stigma of having a chronic invisible illness. Despite being a high-achieving, conscientious, Type A personality, I have been called lazy, told that it's all in my head, that I don't try hard enough, believe enough, I don't LOOK sick, etc. It has all been so hurtful. This video explains CFIDS/ME/FMS so well. THANK YOU FROM THE BOTTOM OF MY HEART!!!!
I'm glad it's helped that you've felt it relate to you! I hope your college professors can find out some facts about the illness and might become more sympathetic and supportive.
Thank you! I particularly like the point that just because we might say no to a proposed outing or invitation doesn't mean we don't appreciate the offer. It's awfully hard when everyone just stops inviting you because your always sick, then even if you hit a good week, you find yourself isolated.
That was really good! If only doctors would also 'Beleive', 'Accept' and 'Support' us! One day, disbeleiving doctors are going to go home one day and think of the C.F.S. patients they used to see and dismiss as winging hypochondriachs and will want to crawl under a rock with embarrassment, because the science of C.F.S. will finally be undisputable and common knowledge. You were brave to do this video, Thankyou! :-)
Wow! You really spoke to me! Its invisible, you are so right. I think we spend far to much energy on trying to convince your friends that we have M.E. Its a hellova disease and when the episodes come its a great leveller. I hate that people think its more a mental disease. Be strong people and be kind to yourselves.
Great work, my friend!! You explain this so incredibly well. I live with M.E. as well. I too give my every moment of energy trying to help educate people about this invisible disease. Let's keep going, and keep telling our stories. ..Thank you, my good man. I wish you, and all other ME/CFS survivors very well. Sending love to all~
@DominieBush Thank you, I'm so glad you feel this video can relate to you, sorry to hear you've been so ill for so long, I know there's nothing worse than to be so ill and then to be blamed for it ourselves! Best wishes.
The tree from my window is my constant companion throughout the seasons.....the sound of my heart remindes me that life still offers a chance and watching this tells me im not alone and reminds i have i reason to carry on.... X
I so very much appreciate this video. I plan to share it on my Facebook page, just on the off-chance, iffy hope that my 'friends' and family may actually take a moment to watch it. They haven't with the other videos I've posted, but..perhaps they will this time. I'm in tears, I am alone, I am misunderstood and I am very, very ill...but am told I look fantastic! Sheesh! If only they really knew what I feel like on the inside. If it were them suffering, they'd be in a corner, weeping!
Yes, believe them. My dad didn't believe me, ignored my pleas for help, and tried to laugh it off when he saw my doctor's treatments worked. I cried because I was so desperate to get better
I guess we feel sorry for those doctors, just not the others! I will definately watch all your other videos, greatly looking forward to it. I like the setting in this one, it was so positive! Your doing a great job.:-)
me runs in y family my mum has my gran had and i have im only 14 and cant go to school full time or eet with my freinds (whats left of them) my doctors comeplety told me its in my head....i used to do rock climbing know moat of the time im at home asleep or watching crappy tv with my mum iim so tired during the day but at night its a differnt story....thank you for posting this video i can show it to my freinds and the freinds i have lost
So sorry to hear that - that must be incredibly painful too?? And so awful when families don't believe in the real disease that you have. Sending you best wishes.
@hi771lrt As I understand it, other neurological illnesses such as MS and epilepsy, as well of course as HIV / AIDS, also used to be treated by most doctors as being "all in the mind" or imagined illnesses. I do hope that more doctors would graciously accept the obvious and overwhelming evidence about ME, and that support and even treatment will improve.
@SuperSaxophoneplayer A great film about ME/CFS entitled VOICES FROM THE SHADOWS recently screened at the Mill Valley Film Festival. It was made by a woman in Great Britain whose daughter has been ill w/ME for years & it is now being made available to stream online in the USA only until October 30th courtesy of MVFF & MUBI. You Tube won’t allow me to post the website, but try to find it!!
Thanks for doing the work to make this video and post it. I appreciate the energy it took to do it. i've had CFS/ME for over 2 years and (like many) have seen more doctors and had more tests than i care to count... all showing my blood is pristine and that nothing is "wrong." fortunately, my pcp and my wife both understand and are working hard for/with me and we're managing the symptoms in a way that is tolerable. And i'm lucky to have my guitar that helps me thru the day. Thanks again!
@thetrollbasher ME is a lot more like MS or longterm polio. People with ME have a huge range of severely disabling physical symptoms, which researchers have measured in blood tests (including immune system), brain scans, heart and blood flow tests etc.
@SuperSaxophoneplayer Yes - most of us with ME / CFS, POTS / dysautonomia, fibromyalgia etc don't want attention, in fact we all tend to make our illnesses out to be less than they really are... but it does seem to be so difficult for lots of other people to understand an illness that is "invisible", and which can go on for so long... Best wishes to you :)
@thetrollbasher No, not at all. Have you seen my other videos so far? Depression is also a horrible illness, and ongoing fatigue is often one symptom of depression, and there can appear to be one or two similarities between depression and ME. But they are very distinct, different illnesses...
Thank you - yes it really is!... I used to have nightmares about trying to run through fields to catch a bus I was late for, but my legs just wouldn't carry me...!
@hi771lrt Yes I wouldn't wish anyone (including doctors) to have ME, but of course I hope that they would understand and support. There is so much information out there about what goes wrong in the body when people have ME, but it still hasn't come together in a clear understanding of the illness or its causes or possible treatments (yet?). And it doesn't seem to be presented to doctors in this country, rather a brief bit of training wrongly saying "CFS is behavioural, treat with CBT".
I was driven to try to commit suicide in my early 20's from ME that wasn't getting treated because EVERYBODY thought I was just making it up. I could get no respect or help from family, friends, or the medical community. I was actually flat out ignored in a hospital. I was treated like I was scum. After almost a year of this my mind SNAPPED and they decided in the hospital after I cut my wrists that I maybe I was really serious after all.
Great video Giles as always. I wish I could pass this round to everyone I know. Ive never worked out why we arent allowed to have this illness. Yet if I told people I had a broken leg theyd all be round with grapes :-/
I am late to this content and wish I'd found it earlier. Wondering how you are today. You have articulated what it feels like perfectly. I have not experienced as severe a case as you but it has definitely affected my longevity and life quality has been nil for quite awhile. The worst thing is talking to doctors and being told "but you look pretty strong" and then proceed with a procedure that shouldn't have been handled so roughly and then you crash afterwards again. They see a tiny bit of our life and they judge us by that.
@hi771lrt Thank you! I didn't feel brave, I just spoke from experience (sadly) and from my heart! Well, and the experiences of others I've spoken to as well, it's far too common not to get the support we do actually need... And actually there have been doctors who had previously believed what they were taught about ME ("CFS") being a behavioural hysterical "hypochondriac" condition, but who then got ill with ME themselves, and soon knew it is definitely for real.
Glad you have creative work you can do! I'm not too bad thanks - not making any new videos just at the moment, but I hope to again eventually (hopefully when I'm better still than I am now, and maybe I'll know more about what's helped me and could help other people??).
@Limnades99 Thank you - and I do believe MCS and ME could be related too... worth trying to stay away from as many synthetic chemicals as possible I think
Thanks for the reply, I'll sub your channel. Yeah it hurts really bad and gets intense when I have an attack, but luckily they only last a few minutes. If I wasn't self employed making art I'd go mad I think. Hope your well :-)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
@thetrollbasher The huge difference between depression and ME is shown by: people with depression find it difficult to be motivated, but often feel better after some exercise or activity. It is the complete opposite with people with ME, who are still almost always very highly motivated (despite everything), but they actually get very ill after doing the smallest amount of activity. I really hope that helps.
Thank you so much. Compassion is the best medicine. It is empowering! A few days ago I was in bed after a long day of dealing with ME/CFS and my parents were having a discussion about how my symptoms had worsened and they were beginning to frame it like I was choosing to withdraw (which is not the case). I was not able to speak more than a few words at any one time without severe pain, but I don't think that really understood what what I was going through in my body. So I was laying in bed with a lot of sadness, and feeling quite hurt. Then through the wall I heard my dad say: we just have to have compassion for what he's going through...I almost cried. It was the right thing to say at the right time and it took away most of my worry and allowed me to get to sleep. Compassion!
This video made me cry! I've had CFS for almost five years, and it always makes me emotional when I hear someone explain it well. It's so rare! Recently I've been dealing with some college professors of mine who don't understand that I really am sick. I'm so lucky just to be able to stay in college! I'm registered as a disabled student and still some professors still question the reality of my illness. Especially the first half of this video, I felt like you were talking about me.
Me too...26 years & I feel like I'm slipping away more quickly as the years pass. I'm too weary to detail what's sacking the little bit of life left but it has to do with my home being in horrendous disarray & as one who was almost OCD since staying super organized was like a built-in energy booster.
I am just as the lovely man suggested, HIGHLY motivated, creative, and always overflowing w enthusiasm, etc.
I pray for an "organizer angel" continually: one who gets amped up when a challenging clever solution is wanting! Someone like...ME!
Thank you. This video made me cry! It's as if you were talking about me. I've got a supportive husband and don't know how I'd cope without him. I'm going to share this video.
WONDERFUL VIDEO! I've had Fibromyalgia since 1982 and CFIDS/ME since 1987. For nearly 30 years, I have endured the misunderstanding and stigma of having a chronic invisible illness. Despite being a high-achieving, conscientious, Type A personality, I have been called lazy, told that it's all in my head, that I don't try hard enough, believe enough, I don't LOOK sick, etc. It has all been so hurtful. This video explains CFIDS/ME/FMS so well. THANK YOU FROM THE BOTTOM OF MY HEART!!!!
@GetWellFromME Ok,I thank you for giving me a better understanding of this "illness".PEACE & LOVE TO ALL OF YOU.
I'm glad it's helped that you've felt it relate to you! I hope your college professors can find out some facts about the illness and might become more sympathetic and supportive.
Thank you! I particularly like the point that just because we might say no to a proposed outing or invitation doesn't mean we don't appreciate the offer. It's awfully hard when everyone just stops inviting you because your always sick, then even if you hit a good week, you find yourself isolated.
This is SO supportive, I can't believe how perfectly this reflects how I feel and my experience.
That was really good! If only doctors would also 'Beleive', 'Accept' and 'Support' us! One day, disbeleiving doctors are going to go home one day and think of the C.F.S. patients they used to see and dismiss as winging hypochondriachs and will want to crawl under a rock with embarrassment, because the science of C.F.S. will finally be undisputable and common knowledge. You were brave to do this video, Thankyou! :-)
Wow! You really spoke to me! Its invisible, you are so right. I think we spend far to much energy on trying to convince your friends that we have M.E.
Its a hellova disease and when the episodes come its a great leveller.
I hate that people think its more a mental disease.
Be strong people and be kind to yourselves.
Great work, my friend!! You explain this so incredibly well.
I live with M.E. as well. I too give my every moment of energy trying to help educate people about this invisible disease.
Let's keep going, and keep telling our stories. ..Thank you, my good man. I wish you, and all other ME/CFS survivors very well.
Sending love to all~
@DominieBush Thank you, I'm so glad you feel this video can relate to you, sorry to hear you've been so ill for so long, I know there's nothing worse than to be so ill and then to be blamed for it ourselves! Best wishes.
The tree from my window is my constant companion throughout the seasons.....the sound of my heart remindes me that life still offers a chance and watching this tells me im not alone and reminds i have i reason to carry on.... X
I so very much appreciate this video. I plan to share it on my Facebook page, just on the off-chance, iffy hope that my 'friends' and family may actually take a moment to watch it. They haven't with the other videos I've posted, but..perhaps they will this time. I'm in tears, I am alone, I am misunderstood and I am very, very ill...but am told I look fantastic! Sheesh! If only they really knew what I feel like on the inside. If it were them suffering, they'd be in a corner, weeping!
Thank you for making this video, it's really helpful to know you're not alone :)
Yes, believe them. My dad didn't believe me, ignored my pleas for help, and tried to laugh it off when he saw my doctor's treatments worked. I cried because I was so desperate to get better
I guess we feel sorry for those doctors, just not the others! I will definately watch all your other videos, greatly looking forward to it. I like the setting in this one, it was so positive! Your doing a great job.:-)
Sending this to alllll my friends. So grateful you have made these videos.
me runs in y family my mum has my gran had and i have im only 14 and cant go to school full time or eet with my freinds (whats left of them) my doctors comeplety told me its in my head....i used to do rock climbing know moat of the time im at home asleep or watching crappy tv with my mum iim so tired during the day but at night its a differnt story....thank you for posting this video i can show it to my freinds and the freinds i have lost
tom barton same for me I'm 10 and I'm on part time I can't go to after school clubs or anything like that I've had it since I was 3
Im sorry your sick guys.I hope you are better soon.Good luck in the future.😃
So sorry to hear that - that must be incredibly painful too?? And so awful when families don't believe in the real disease that you have. Sending you best wishes.
@hi771lrt As I understand it, other neurological illnesses such as MS and epilepsy, as well of course as HIV / AIDS, also used to be treated by most doctors as being "all in the mind" or imagined illnesses. I do hope that more doctors would graciously accept the obvious and overwhelming evidence about ME, and that support and even treatment will improve.
Perfect, just what i wanted to say, thank you
@SuperSaxophoneplayer
A great film about ME/CFS entitled VOICES FROM THE SHADOWS recently screened at the Mill Valley Film Festival. It was made by a woman in Great Britain whose daughter has been ill w/ME for years & it is now being made available to stream online in the USA only until October 30th courtesy of MVFF & MUBI. You Tube won’t allow me to post the website, but try to find it!!
Thanks for doing the work to make this video and post it. I appreciate the energy it took to do it. i've had CFS/ME for over 2 years and (like many) have seen more doctors and had more tests than i care to count... all showing my blood is pristine and that nothing is "wrong." fortunately, my pcp and my wife both understand and are working hard for/with me and we're managing the symptoms in a way that is tolerable. And i'm lucky to have my guitar that helps me thru the day. Thanks again!
@thetrollbasher ME is a lot more like MS or longterm polio. People with ME have a huge range of severely disabling physical symptoms, which researchers have measured in blood tests (including immune system), brain scans, heart and blood flow tests etc.
@SuperSaxophoneplayer Yes - most of us with ME / CFS, POTS / dysautonomia, fibromyalgia etc don't want attention, in fact we all tend to make our illnesses out to be less than they really are... but it does seem to be so difficult for lots of other people to understand an illness that is "invisible", and which can go on for so long... Best wishes to you :)
@thetrollbasher No, not at all. Have you seen my other videos so far? Depression is also a horrible illness, and ongoing fatigue is often one symptom of depression, and there can appear to be one or two similarities between depression and ME. But they are very distinct, different illnesses...
Thank you - yes it really is!... I used to have nightmares about trying to run through fields to catch a bus I was late for, but my legs just wouldn't carry me...!
I liked your video. I have ME/CFS and am contemplated making a video log. You gave me a lot of good ideas, thank you.
@DrFrankyDolan Thank you so much! Definitely, keep sharing our stories and our hopes (as well as in our difficult times), best of wishes to you too!
@hi771lrt Yes I wouldn't wish anyone (including doctors) to have ME, but of course I hope that they would understand and support. There is so much information out there about what goes wrong in the body when people have ME, but it still hasn't come together in a clear understanding of the illness or its causes or possible treatments (yet?). And it doesn't seem to be presented to doctors in this country, rather a brief bit of training wrongly saying "CFS is behavioural, treat with CBT".
Thank you for making this!
I was driven to try to commit suicide in my early 20's from ME that wasn't getting treated because EVERYBODY thought I was just making it up. I could get no respect or help from family, friends, or the medical community. I was actually flat out ignored in a hospital. I was treated like I was scum. After almost a year of this my mind SNAPPED and they decided in the hospital after I cut my wrists that I maybe I was really serious after all.
I hope you are now getting the medical attention and care you deserved all along. ❤
Thank's for this, I've disowned my family because they denied my Trigeminal Neuralgia
Thank you so much for this.
You are my GURU!!! HUGE R E S P E C T
this is amazing and thank you so much. i shared with as it is MCS awareness
Great video Giles as always. I wish I could pass this round to everyone I know. Ive never worked out why we arent allowed to have this illness. Yet if I told people I had a broken leg theyd all be round with grapes :-/
Thank you so much for this. I will use this video with my friends
I am late to this content and wish I'd found it earlier. Wondering how you are today. You have articulated what it feels like perfectly. I have not experienced as severe a case as you but it has definitely affected my longevity and life quality has been nil for quite awhile. The worst thing is talking to doctors and being told "but you look pretty strong" and then proceed with a procedure that shouldn't have been handled so roughly and then you crash afterwards again. They see a tiny bit of our life and they judge us by that.
@hi771lrt Thank you! I didn't feel brave, I just spoke from experience (sadly) and from my heart! Well, and the experiences of others I've spoken to as well, it's far too common not to get the support we do actually need... And actually there have been doctors who had previously believed what they were taught about ME ("CFS") being a behavioural hysterical "hypochondriac" condition, but who then got ill with ME themselves, and soon knew it is definitely for real.
Glad you have creative work you can do! I'm not too bad thanks - not making any new videos just at the moment, but I hope to again eventually (hopefully when I'm better still than I am now, and maybe I'll know more about what's helped me and could help other people??).
@Ilovetobeyoung That's so true, and often really difficult for other people to understand or to accept, we're not just being awkward at all!
Thank you so much, Ken, glad it's helped you to be able to help her a little more :)
My friend has ME nd she can't go school. Thanks for posting this vid :')
THANK YOU FOR BEING THAT FRIEND
Thank you all! @Lekestua as long as she knows that, then that is what really matters :)
@Limnades99 Thank you - and I do believe MCS and ME could be related too... worth trying to stay away from as many synthetic chemicals as possible I think
Thanks for the reply, I'll sub your channel. Yeah it hurts really bad and gets intense when I have an attack, but luckily they only last a few minutes. If I wasn't self employed making art I'd go mad I think.
Hope your well :-)
I really hope you are alright. I've seen your videos but they seem to have dropped off. I hope you didn't relapse and are doing better
i have dysautonomia, and im sick of being told i look great...
@jessical1969 Thank you. Sorry to hear you have ME too, best wishes to you.
Thank you, I'd encourage you to try making a video blog if you can - let me know! Best wishes.
@DAiiSYXO Thank you!! :)
@Frewtsalad That really is true, unfortunately... hang in there, we find out who our real friends are.
@Claggy Thank you!
@77pinkrose Thank you! :)
Thans !
@wendytoesocks1 Thank you, me too! :)
CFS 真是可怕．經過了這麼多年、不知影片中的主人現況如何？
very good video,I have m.e.
Nice vid I have RP
@GetWellFromME
✨
One of my friends has ME... /: