Viral diseases (including my own case of severe CFS) have no chance with blood electrification, search Bob Beck right here on Youtube! Visit my channel for a link to more info.
Hearing about this young woman's energy deficits, two words pop into my head: Mitochondrial disease! Although there's no cure for mito dx, there are supplements which can help improve symptoms and even help w/ energy levels. If you have CFS/ME w/ no known cause, please investigate mito disease. It took my family over 20 years to be diagnosed, but we are FINALLY seeing some symptom relief using mito supplements. Praying for all affected w/ mito, CFS/ME and all invisible illnesses. God bless.
for other people with cfs i really don't think they should make documentaries like this. I am only 19 and have had this for four years and I really am trying to keep hope and never give up as many people should. I feel really sorry this person/relate to her. But it really makes me lose hope. I wish they could post documentaries where they actually are treating and helping people with this. Or success stories of people who have actually overcome this
@supahfreeak I really do hope you overcome your illness. My Partner has been suffering for 7 years now. Its great when people get through it but the reality is that there is no proven cure and treatment for the condition. Scientitsts dont even knwo what causes it. it is still all therom and speculation. Hopefulyl raising awareness will help raise funding into further research. Best of luck.
@babysmudgeiloveu . Don't be offended, I didn't mean the illness, I meant the documentary, it looks staged, performed, amateur, do you understand? I'm sorry for anyone with this illness, truly I am. I don't however feel sorry for the production team of this short film. Is that OK for you.
Google "environmental illness resource center". I helped myself more than anyone. Google "wheat/milk intolerance". It is the first step toward increasing the power of the immune system. No detergent. No perfumes. Baking soda to brush teeth and clean house and dishes. See for yourself. I used to try all sorts of things if you want to study. "the cure for all diseases." CLUE.
Who ever says ME is a Psychological ilness they are talkin rubish, I hav ME and am very determined to do normal teenage activities, even if it is just going to a friends house, but there are some days no matter how motivated I may be I physically can not do it!
I don't know what I think about the causes of CFS, but people who dismiss it because they think it's a psychiatric disease are idiots. Everything you 'choose' to do is the result of a real, physical organ in your head called a brain.
I would give one of my legs, yip I would give one of my legs to get rid of my M.E. I am 22 and I can only go for a 5 minute walk every 2 days in the forest. I used to mountain bike ride/cycle 80 kilometers almost everyday, it made me so fit and healthy but then I was put on a medication and it made me throw up for 3 months as they said the side effect would go away which it never did. I am off the medication now but got M.E from it I have had M.E for 1 year and one month now! It isn't pleasant.
And I do look at all the facts. Hence my conclusions. Honestly, It is easy for one to believe they have a physical impairment if you think long enough about it and oversleep/fail to move around to the point where muscle wastage sets in. So I do believe your convictions are deeply held but it's psychological. Fact.
@ohpleasereally I can't believe that you think this is psychological. I was diagnosed by a top University here in the states and I didn't know what was wrong with me over the last 20 yrs or so from being in the Persian Gulf War. I am not faking these symptoms, they inflict my immune system, endocrine system, nervous system and the lymphatic system. This is more of a auto immune disease that is very debilitating. I didn't know what was wrong with me all that time but now I do know it is CFS.
@ohpleasereally Absurd. Why is it that Olympic level athletes get sick, even though they still try to exercise? (albeit at an incredibly lower intensity and duration.) Could it be because most people with this illness have infectious diastolic cardiomyopathy? So it's just a coincidence that most of the viruses assoc. are cardiotrophic. It's coincidence that Serial exercise testing shows measurable deficiency in recovery (much worse than congestive heart failure?)
Lol! I can safely say i wont develop this psychological 'condition' but then I don't have self esteem issues nor a subconscious desire to blame my deeply entrenched fears of normal social interaction on something tangible like a so called medical illness. Seriously - go to counselling, try some exercise. You'll be amazed at how your 'illness' starts to fade... Stop wasting your money on books, drugs or otherwise, it's a con. Most psychologists, psychiatrists and physicists will tell you the sam
Vicmitch, if you bothered to read the rest of my comment (u probably didn't want to waste the precious little energy the 'ME' leaves u with) you would see that both my parents are doctors who also see this 'disorder' for the horseshit it is - I am very well informed thank you. You people infuriate me. Get some dignity and start living instead of sitting on your backside having others feed you the attention you so desperately crave.
This comment has received too many negative votesshow
Smokin Cold I nearly peed myself laughing at your comment. I would hazard a guess that most people on these forums are lazy uneducated benefit claimers. I myself WORK for a living after I received a top degree from a top university in psychology. Uneducated I certainly am not! I will never have ME because I have motivation and self-pride.
@ohpleasereally after my degree which took a lot of motivation as a single parent running a household & working hard at many things, including raising £5,000 for my local hospital in a charity event that caused an allergic reaction that nearly killed me, reaction to steroids. I persevered determined to recover, tried to keep my self employment going, pushed myself. Slowly losing the ability to express at will, self care the basics etc was devastating, people walked away. It could happen to you.
@ohpleasereally Psychology, that explains a lot. Overcompensating because you got a degree in a pseudo science. Why didn't you at least try for something useful like medieval literature? Instead of wasting everyone's time why don't you try reading the latest research on ME/CFS in Science or JAMA? If you know how...
@ohpleasereally Be careful - pride comes before a fall - you still have a lifetime left to develop this illness, then perhaps you won't be so bigoted. Obviously your educational training didn't teach you how to look at all the facts, first. Go back to your books and look up 'bigotry', 'media stereotype' and 'prejudice', then walk away feeling good about yourself. You are an obnoxious, conceited idiotl.
@ohpleasereally "I myself WORK for a living after I received a top degree from a top university in psychology. Uneducated I certainly am not! I will never have ME because I have motivation and self-pride."
Yeah, you also have sound physical health, you fucking retard
@ohpleasereally you are an ass! you have no idea what this disease is like. Since you dont know what is, you think it can only be be some form of hypochondria. I HATE how self-righteous people like you are - you really think you know everything, don't you?
@ohpleasereally wow, you're an ignorant fool. you don't know the pain and suffering that a person with ME is facing, how painful it is to see people you know moving forward while you're stuck in the same place everyday and feeling like there's no where to go. Alone and very misunderstood is what they are feeling. They didn't want to have that illness. You're the uneducated one who keep posting moronic comments. I hope you get ME so you'll know how it feels, you effin retard.
ohpleasereally - you are talking out of bilssfull ignorance who are u to judge ? u it is veiws like yours that make living with ME harder and its already impossible. i would like to point out sleep deprevation is used as tortuer. you cannot understand what it is like (luckly for you) to be that tired and in so much pain . you talk about trusting the proffesionals ? NICE guidelines state that it is a neurological disease .dont talk about what you dont know you only embarrse yourself.
Yes because medical psychiatrists with all their years of specialist training and study are no match for your expert knowledge. And by expert knowledge I mean the ranting of someone who clearly has too much time on their hands. I cant believe I'm even replying to your uneducated moronic comment.
@ohpleasereally - So you've replied to my post but deleted my post. I have looked into this issue and came across this information about the files being witheld. I then went to archives and found this to be the case. Anyone with any brain cells can do that. You don't even have to leave your own house to do it. That IS an issue. My own policy (proven over the years) is believe the OPPOSITE of anything any psychiatrist says.
Now now nitrochic... Uve got access to secret government archives? Oh god then I'm really sorry! I didn't know u worked for MI5!
Put ur tinfoil hat back on u loon. ME is a noted somatatization disorder - why else do u think u've had to argue ur case that it is a 'disease?' u don't see MS succeeded having to do that because MS IS REAL!!!!
@ohpleasereally I do not understand why you are so interested and so outspoken in a disease that you do not understand. This is NOT a psychiatric disease, it is an immune system dysfunction. If you are familiar with medical journals, you would have read recently about the XMRV / MLV virus relationship to ME / CFS and the immune system . As you are interested in the condition you may find the YOUTUBE DENLANDER794 video that I made for my patients helpful in your understanding.
Of course she has no energy. All she does is eat and sleep causing her to pile on weight. Shes pale because she doesn't get any sunlight. I see a spoilt little girl who's parents are indulging her to a dangerous degree. They indulge her because they want her to stay like a baby. Cutting off the crusts because chewing uses too much energy? Dear god!
ME is a psychological condition suffered by those who are afraid of the real world and who subconsciously want to be pandered to and b
@ohpleasereally - what an absolute crock! You obvioulsy don't know what you're talking about! The government files on ME were being witheld from the public until 2023. I've recently found out and verified it with national archives that this has now been extended until 2071. Somatization disorder my arse. That's just psych drivel (there's an awful lot of it about ). Do your homework properly and don't state something unless you know the facts!
There is a known cure, some people just try real hard to make sure you don't find out. It's a miracle drug called Cannabis. Medical marijuana is prescribed by doctors in 14 states in America now for this and other chronic disorders Better show up a bonghit late then not at all. This plant saved my life.
I am a recovered fibromyalgic who left the care of the medical profession to discover the cause and cure of this horrific condition without drugs, and am living proof you can cure this and take back your life. Symptoms are mistaken for the cause and treatments that help do not cure. Please, do not be discouraged by failed hope and keep going!!!
Valerie Lumley, Recovered Fibromyalgic and author of
"Curing Chronic Fibromyalgia - Choosing What Works"
@PaulBeet This video was shot several years ago and I think she has improved somewhat since then. A trip to the Caribbean from England is out of the question for anyone with very severe ME - the journey alone would last a day or more, there would be the noise, the sensation of movement which some ME sufferers find very difficult, and then adjusting to the climate and whatever the healthcare situation there is like. It's just out of the question.
I think this is Claire Wade; she has two websites. You can google "Surviving Severe ME" and "ME and my life" - I think the first is more recent. She did a book which AYME published, but AYME have just published one this year by Emily Collingridge, but you can download Claire's in PDF form from the SSME site.
This young lady has got a great mum. I hope that a cure is found for this horrendous illness soon. Too many lives have been wasted and too many people are still suffering and yet there are some ignoramuses who still call this "yuppie flu".
I don't think it is a virus ... it is probably a contaminant that exists in many organisms that spreads without any symptoms (especially when it reacts with lactose / fructose) but causes effects when it reacts with other things like cells, viruses bakteria and fungi. It causes inflammation (and it is the ONLY cause). Hormone stimulation is fuel for the contaminant.
The higher its concentration in the blood the worse the effect in hot spots is.
i was like this for 3 months but gradually got better but it took some work. i had to do yoga, meditation, and experiment with exercise. changing your diet can really help you, i noticed that she was eating toast wheat can make this condition worse.
neil - three months either means you have CFS/ME and are in remission (good), or that you had something else. You should do some research into this and find out what it really is. Posts like yours only feed the ignorance of others, who tell us that we can just 'snap out of it.' We can't, any more than someone with MS or MD or polio can. Please don't make comments about freaking wheat toast.
the point i was trying to make is that you really have to put the effort in if you want to get better, making drastic changes to your diet this girl did'nt seem to want to change and just accepted the fact she was stuck in bed, trust me i feel absolutley awful when i walk but i still fight and do it, the major difference with MS is that there is evidence of something pyhsical going wrong, chronic fatigue is an illness which varies a lot but what u need to know is people do recover after years.
if i could say something to her, i'd say it does get easier - ive had m.e for the past 8 years and am now at a point were i am looking for part time work, although i still have to rest in between, - i'll be thinking of you hun - i was trapped in my own home for years xxxxx
I have been trying to load dirty dishes into the dishwasher for 2 days now. I can put a few in and then have to stop. This can go on for quite some time.
If I drop something on the floor I have to muster up enough energy just to pick it up.
I wish people would just understand how devastating this is. I visited my relatives yesterday and will pay for it for the rest of the week. My whole day has to be fit into 2-3 hours.
The worst is that people think we look OK. We're not OK.
Cissy, this describes it very well. I lie in bed and wish I had the energy to make it to my desk a few feet away and go online. Some days I don't make it. Making plans went out years ago. I am lucky to make it to the dentist and necessary things like that. I am not old but I think seriously about going into a nursing home. How can I though when most people don't believe this exists. Which is the cruelest part of all. I am not stupid and I am not crazy. I am ill. It's Kafka-esque.
Exercise has been shown to give therapeutic benefit, and it was critical to my recovery. Often people who have never recovered claim to know the most about what works and what doesn't.
Oh boy. I know what it is like for a fork to be too heavy. I use lightweight unbreakable plates. Once I could not tear open a paper packet of sugar. The fatigue, the muscle pains, not being able to walk. If I stay in bed then I can't walk up the stairs so I have to keep moving. I do some small specific exercises with therabands.
if I eat too much sugar like I did today, I am quite worried about how bad this will get.
The range of other problems I have is enough to keep me from having a normal life - my tinnitus is extremely depressing, I am sensitive to noises, I never seem to enjoy anything. Seeing psychiatrists is BULLSHIT, you just don't know what sort of trouble peole with this DIABLOLICAL condition go through.
This is a SERIOUS condition, not merely one of feeling alittle tired and shit,
I have had CFS/ME since 13, I am 29 now. I do NOT have FM (fibromyalgia) but my legs do ache constantly, it's just my brain shuts it out.
I assume people with FM have a much more severe thing going on with it.
Re. my life, I have tried but failed, I am having too many palpitations and digestive issues leading to palpitations etc.. these days and have had to go on Propranolol (Inderal) but at 80 mg / day it is not enough to stop them
There is this other guy Alex Chiu with his Immortality Rings, he treated lots of fybro myalgia cases. I had his Immortality Rings on and it certainly did help my pain a lot.
Read Explaining colours to a blind man. Not only will it enlighten many as to what living with a mental illness and chronic fatigue syndrome is like, it also gives comfort to those sufferers who think there is no hope and that they are alone. It is very informative, sometimes shocking but also very funny in parts. All in all, a good read and highly recommended.
This comment has received too many negative votesshow
Taking this illness seriously is a fatal mistake. I know from experience. Like the nutters who work tirelessly to change the name of it..duh..will that help you?
This comment has received too many negative votesshow
I have endured the worse pain ever today. I watched this whole video. Can you not see what you are putting your poor family through. Ill be honest because i am not related.I am not disputing your "pain" but you have to suck it up and give a little back to the people that have been catering to you for years.You are not only destroying yourself, but also the people that love you.You have to seek emotional support from an outside source,because deep down you know that your experiancing phantom pain
This comment has received too many negative votesshow
I do know what im talking about. I am in constant pain, all the time. I am constantly tired, and suffer lethargy. I dont go to the doctor because I hope he is treating people who are dying or helping people on the cusp of life. He does not have time for me ,as everyone in the world has the same condition as me. Its about time you Fibro guys come to the realization that no one gives an "F" about your condition. There are wars, collapsed economy, and sick kids out there. You make the world worse.
This comment has received too many negative votesshow
"RELAXING" theres you friggin problem right there. Get out of your pit and volunteer on a sick kids unit where kids are dying of a real disease. Doctors ignore you because you take valuable time away from people that truly need treatment. Its funny how everyone rips the doctor until he tells you something you want to hear. Just remember : There are dying kids out there. Your condition is a problem. Its a problem to society. Feel proud of yourself
i have undiagnosed cfs. It feels like schizophrenia but i have no previous health problems. People think i act lazy on purpose and when i say im tired they say the doctor said u have no brain tumor or mental problem just depression. But its complete bullshit and i can never say things without studerinng its annoying and it affects my mood extremely, ppl think im mean but im really not. Please if you have any TESTIMONIES OR CURES PLEASE TELL ME. THANK YOU!
I've had CFS for over 18 years so I do feel your pain.. . . . .Its so hard to move around and have a normal life. I spend most of my days inside and when I go to the mall I only go to Border's Bookstore. I can no longer go to cultural and art festivals because it can be overwhelming on my body and then I have to spend the next 3 days resting, usually sleeping non-stop and that's without muscle relaxants or sleeping pills. Long trips to the country are also a burden. Research "gut leak"
Only people with CNS' disorders such as MS, ALS, Guillén-Barre can understand what the child is trying to say. Compassion and understanding are the best support she can be given.
im 14 and i have m.e. and fibro too. it really sucks, i feel so down all the time and people saying im lazy and a lier just makes me feel even worse. some people are so ignorant lol. im at 30% now ( basicly means im just outside the severe category of m.e.) but i was at 15% 2 years ago. i couldnt get up, talk, or eat. it was the worst time of my life. i didnt speak to my family for about 7 months. :(
Just like to say that I don't think she should be criticized for showing signs of wellness, ie talking.She said she was better than she had been.Frankly I'm really glad for her.I can chew and talk like that.Other days I can't get out of bed for pain.I am thankful I am not in the worst catagory,and recognise the awful trial those with very bad ME have, but it doesn't diminish my difficulties.I still can't care for my family properly,work, have a normal social life or have day without pain.
Thankyou for sharing this with. I am a Mum of 3 with CFS. There are days when , if I push myself, I can be as animated as you and seem apparently absolutely normal. Then spend the next week just recovering from it! Also I know that after a while you get through a kind of pain barrier to get things done.If you know you've got to do something you can try and gather the energy over a week or so and then afterwards allow time to recoperate.This is not laziness or any where near the normal life.
I don't understand how she can talk so much, but eating crust is hard. Also, why would a real fork be so heavy when she can use her arms while she talks? I never even wave my arms around that much while talking.
yea I am wondering the same thing, most of the time I can't keep my eyes open, it takes effort to open them, and I sound drunk and half asleep when I talk
owt, it can be hard to understand until you have lived through it. But short bouts of adrenaline due to excitement can give a bout of false energy. Imagine being shut in a room for years; would you be excited if there was someone to talk to? That might give a bout of false energy. But people with CFS/ME pay for it with days sleeping after. Holding a fork is fine muscle control, different than 'arm waving' though I noticed no 'arm waving.' She's stuck in bed and is 18. Do you call that normal?
Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent,(no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER,For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!
May I ask if you are a nurse or Dr? I also have CFS and they have tested my thyroid and everything else. My tests are all normal. But I have these awful symptoms. How do you know she is "severly hypothyroid"? The puffy face is just her wieght. She doesn't move or exercise because of CFS so ofcoarse her face is puffy. She's a little heavy. If you have some helpful medical advice to offer, please do. I and other people with this are suffering. But it's not thyroid.
i think youre right about thats actually.she has alot of energy for a ME person. when i was bedridden with the illness i wasnt talking like her -she could run a talk show.
i havn't ever got as bad with my m.e to be bed ridden but on a bad day sometime i don't have the energy to talk for that long and when i do i sound drunk cause of brain fog!! haha
Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent, (no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER, For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!
I have been back and fore hospitals trying new treatments ever since it first started, altered everything in my life right down to what i have my clothes washed in, upto now nothing has worked, but that won't stop me being first in the que next time they find something worth trying.
I really hope it works for your girlfriend but i have heard and tryed many if these "cures" over the years,But if it don't work you just have to keep going. If it do work please post more about the treatment.thanks
I am 27 and since i have been 11 years old i have had cfs.
I was enable to attened secondry school, and was home schooled but the illness became quite bad, quite quick.
Now at 27, the illness has stoped me doing thing i would have liked to do, because i know have CFS, fibromyalgia, PCOS, IBS, GERD, meiners disease and neuralgia.
So my life is very different to what it could have been, but i still do have a good life, I have a wounderfull family, good doctor and most of the time good outlook.
I just want to say something to the people who've said ME/CFS can be cured:
1) There is no definite cure for ME/CFS (the comment about functional gut disease, & being cured once you heal your guts, that might work for you, don't assume about other people though)
2) Everybody's experience with ME/CFS is different, including what things do & don't work for each person, & how long they are sick with it.
There are some treatments, but there's no guarantee that they work for everyone with ME/CFS.
its just ignorant to say that there is no cure. but its no surprise that everybody says so, doctors dont say that there is no cure. only people like that girl are the reason why everybody thinks so...
many people with cfs/me have a funcional gut diseas, what means all the toxins and bacteria can leave the guts and make truble all around the body. when you heal your guts you can be cured.
I recovered from CFS and am now writing a book about my experience. The book also includes the know-how of how to heal yourself. E-mail me to receive a copy.
The process took me 3 years, but could have been much faster.
She doesn't talk about it much as it was a bad time for her but she has said that you should have faith in your docotor, go to a spiecalist. She said the rest, activity thing really worked for her. Don't push yourslef furthur than you can do.
I've had ME/CFS for around 7years, undiagnosed and unrecognised as a problem for 5 of those years. After being diagnosed I was encouraged do to a Graded Excercise Program. By 'pushing' and trying to maximise what I could do my health continued to deteriorate to the point where I was so sick the 'severe' glandular fever I'd suffered from the year before seemed like a piece of cake. I still push occassionally, I end up struggling to digest food and able to do even less. Be cautious of GET!!
4 yrs ago anyone claiming cfs i would call nuts,having severe cfs now i know better....IM NOW TREATED LIKE IM NUTS,i will no longer defend myself,its not in the head
I hope you understand I'm not trying to criticise, just to make more people understand that doctors who prescribe CBT/GET are NOT saying that the ME isn't real, as they are prescribing something that they use on obviously "real" illnesses.
I think what many people who have CFS/ME don't realise is that CBT is used on so many other people such as cancer patients. The fact that our community seems to have such a paranoia that everyone thinks it's in the mind just means people become ignorant about treatments that could, potentially, help them. I have M.E. so it isn't as if I don't understand what it's like, but spreading this anti-CBT view doesn't help anyone.
Unfortunately CBT is usually used incorrectly in people with CFS/ME. The only common "illness perpetruating behavior" in people with CFS/ME is doing too much, while the whole point of CBT as a treatment for CFS/ME (instead of just a coping tool) is usually to get people to do _more_, because it is erroneously thought that CFS/ME stems from deconditioning.
I don't think there are many CFS/ME people who are "anti CBT". We're just against doctors pushing CBT as an effective treatment for CFS/ME.
What knowledge have you got of this? Doing too little also makes us worse, as when the underlying cause goes, it hurts to do "normal" things again. CBT isn't about "making you do more", it's about using your energy effectively and making yourself better. I doubt you've ever done it, then? There are a huge amount of people on forums etc. who, without too much knowledge about it, push a view which is not necessarily the same for everyone. It helps some people with CFS/ME so don't put everyone off.
Please read my message as I wrote it and do not try to intepret it in other ways. Like I said, CBT is _usually_ used _incorrectly_ in CFS/ME. _Most_ of us do _too much_ instead of _too little_ and if CBT assumes we do too little (as it often does), it is at best ineffective, at worst dangerous.
No, I have not done CBT, as I have no psychiatric problems and can manage my illness fine. I am, however, a medical writer, specializing in CFS/ME and I have read a lot about this specific subject.
I can't quite see how I've interpreted it in any other way than how you wrote it. CBT is actually about balancing the amount you do-if you do too little then your muscles weaken and it hurts more when there is no underlying cause.I am doing CBT and it is not about having psychiatric problems,in fact nothing psychiatric has been mentioned.If you can manage your illness then that's great, but don't put other people off doing it when it can really help some people, although others may not agree.
Kinetophobia is a psychiatric problem. I have never heard of a single patient with CFS/ME who actually has this condition. So called "deconditioning" has never been shown to be a factor in CFS/ME, which explains why in a large survey 93% of CFS/ME patients found CBT unhelpful. In another survey 22% even found CBT harmful.
The most helpful treatment for CFS/ME is rest. Pharmaceuticals can also be extremely helpful, like in my case they stopped illness progression, which CBT is not able to do.
I disagree. having first hand experience of CBT. i know that every time physical symptoms and ways of managing them were brought up when i was there, they would divert it to trying to sort out alleged social problems i was having. they wouldnt even mention it, and implied i was a hypochondriac, rather than giving and tools to manage my life around my symptoms.
@damnshesbionic I agree 100% If you do things slowly, rest in between it should help you from getting too tired. I always have to take breaks in between work. I still sleep a lot and get constant headaches and pains but thank God I am not bed ridden. I hate being tired all the time but i'm so determined to lead a normal life I don't let CFS get me down. I am always in pain, when I'm not its great. I guess we hide it well.
@DiamonDie I have to completely agree with you on CBT. The reason it's pushed so much is because it's the only idea mainstream medicine has, along with 'graded excercise therapy', which is completely useless in severe CFS/ME. CBT *can* help some to 'cope' - but I think it's those that are down or negative thinkers along with the CFS that would benefit most from it. Myself I have it in a severe way, but by nature i'm a very positive & patient person, & rarely think negatively.
very interesting. i love working out and was in tip-top shape for the last 20 years. after being diagnosed with CFS 8months ago, i cannot workout at all even a 10 min walk "crashes" me.
I've had M.E. since 96. Yes, it's mainly immune system related. But regular relaxation slots, exercise (sensible:do what u can, no more) emotional support, getting out (if and when u can) and a mainly raw vegan diet does help a lot
Try my theory on yourself and let me know if it helps before you knock it. Theory being our immune systems are trashed and cannot handle normal expousure to pathogins were exposed to everyday be it weather were ingesting them via our food or inhaling them via the mold in our homes.
I didn't knock your way. I only suggested another 2 u. M.E. is so difficult to treat. It varies from one to another in many ways. Yes, pathogens r killed when u cook. But so r nutrients. So, A balance between the 2 is probably right.
I believe based on 10 years of experience Cfs/mcs is an immune disorder that manifest's it's self by reactivity to pathogins. Mold is simply a pathogin of opportunity. Another instance of this is the food you eat. If you cook EVERYTHING you eat you won't have reactivity anymore which lends credance to my theory.
I've moved many times trying to escape mold it's no easy task! Out of desparation I went to craigs list and am renting a room in a brand new house for $600 a month. I am doing much better. Still have issues but the difference between some of the places I have been in the last ten years are stark and unmistakable.
Anyone who says they are 'cured' of ME is a laughing stock of themselves. ME is a chronic illness - hence the word Chronic fatigue Syndrome. These graded exercise/CBT loons need to be rounded up and deported to the north pole. Then people with real ME can finally get some treatment.
I have had cfs for ten years and have found one common denominater. The connection of my up and down swings are always related to mold expousure. It's a travesty that this isn't recognized by science becuase it's reproducible and thus verifyable. That and this illness IS very treatable.
Mold exposure can indeed cause CFS or CFS like illness in some cases. The weird thing is that some of these cases of illness (even very severe ones) resolve completely or almost completely after the mold exposure is removed, but others remain very ill (such as a friend of mine). It would be great to find out what makes the difference.
I've had CFS for 5 years & although the messaged feeling is to stay in bed u REALLY have to fight it. Even when am v. ill I make it a rule not to stay within covers during day but get dressed eventually just as symbolic act & lie only under day blanket. You also have GOT to get out of wheelchair. Use sticks just for bit even if shaking & just for 1 short attempt everyday. Your circulation will respond and aid self-healing. And that's because you're young, your body will respond.
Unfortunately, that doesn't work for people who really have CFS/ME and can be extremely dangerous, even life-threatening. For many people this illness is progressive. They cannot increase their activity levels. They cannot even maintain their activity levels, because the amount of what they can do gets smaller all the time. Fighting back only accelerates the progression. I've been there myself, only proper medication (LDN) stopped that deteroriation. And I still can't gain more stamina.
I really do have CFS and which was catagorised as severe. I was also shocked I could at all get better or increase my activity levels. However, from what you say it was obviously not as severe as that, and I think the term of fighting back only applies to when you get a bit better. But I meant in a spiritual sense too, and I am extremely sorry to cause offence.
To anyone out there who believes they were cured from M.E. through physical exertion - I say good for you...but you probably weren't suffering from M.E. in the first place. The scientific literature simply does not support this.
I agree 100 percent, David. Dancerguy9999 never had this disease. I'm not saying he wasn't sick, but he didn't have CFS. People who have sudden-onset CFS often get better after a certain period of time. Then they credit voodoo or tantric sex or whatever they were doing at that moment with their cure. It's just coincidental. He's one of those people who looks down on medicines. I am not fortunate enough to be able to do that.
I believe it might be true that there is an optimal amount of physical activity that can benefit someone with mild to moderate M.E., like myself for instance. However, this will not cure M.E., it may just lead to better overall health. But for a girl like Claire physical activity simply is not an option. She is too sick with this physical illness.
Wow this is very moving. Does anyone by any chance know how I can get a hold of Claire? Perhaps a myspace page, email address or anything like that? I'd like to contact her. I also have M.E.
It would be interesting to know whether the very POOR get this disease. I doubt it. No. I do not understand this illness: I am not cold hearted. But man, I have NEVER seen anyone in the GRIM ghetto's with this.
Of course they do. Sadly, they don't usually have access to medical care (or answer phone surveys). They don't make it to the statistics, but that doesn't mean they don't exist.
I don't live in a ghetto, but I am on minimum welfare due to CFS. I've faced the risk of homelessness several times since I was 16 (both because of this illness and and other reasons). And the risk is still there, as my only source of income could be withdrawn at any time, and then I would end up on the streets.
Yes, the poor get CFS. In fact, many with CFS live in poverty.
Thank you, Claire, for sharig yoru story. I, too, am bedbound and am now unable to speak. But my spirit remains strong, as does yours. Someday soon we will get our lives back!
Sometimes there isnt a choice to make. You have to be in bed because if your in enough pain you wont get up, regardless of how strong your willpower is. Willpower wont help you
And - Cold - You might want to watch Greg Crowhursts channel to see how bad it can be - I am luckier than his wife - I only spent a few years that bad - I am still largely house-bound though after 11 years - I have lost everything I ever cared about to this illness. 80% of people do not recover - that means until they find a treatment we have it for LIFE!
ME/CFS is defined as a neurological disorder by the World Health rganisation - it is a serious illness. It was recorded as cause of death on Sophia Mirza's death certificate. It has occurredas epidemics recorded since 1934 - anyone who thinks it is just 'feeling tired' is seriously misguided - for more info on why things have become muddled around it go to hummingbirdsguide website - read it and weap!
Thank you for posting this. I have M.E and although I'm not quite as disabled as the Claire I could really relate to this. I would love to write to Claire. The depressing thing here is thinking of all the s##ts who are probably watching that and thinking it's all psycological. There is nothing more physical than this. Thanks to Claire and fmily and for posting this.
This has been flagged as spam show
Viral diseases (including my own case of severe CFS) have no chance with blood electrification, search Bob Beck right here on Youtube! Visit my channel for a link to more info.
unleashhealth 2 weeks ago
i just got diagnosed with M.E and this video has made me very scared
super07socks 1 month ago
Touching story, and what an amazing and supportive family! I wish there was a permanent solution for ME, until then, all the best! <3
SparklenShineStudios 2 months ago
Hearing about this young woman's energy deficits, two words pop into my head: Mitochondrial disease! Although there's no cure for mito dx, there are supplements which can help improve symptoms and even help w/ energy levels. If you have CFS/ME w/ no known cause, please investigate mito disease. It took my family over 20 years to be diagnosed, but we are FINALLY seeing some symptom relief using mito supplements. Praying for all affected w/ mito, CFS/ME and all invisible illnesses. God bless.
2136cass 3 months ago
for other people with cfs i really don't think they should make documentaries like this. I am only 19 and have had this for four years and I really am trying to keep hope and never give up as many people should. I feel really sorry this person/relate to her. But it really makes me lose hope. I wish they could post documentaries where they actually are treating and helping people with this. Or success stories of people who have actually overcome this
supahfreeak 4 months ago
@supahfreeak I really do hope you overcome your illness. My Partner has been suffering for 7 years now. Its great when people get through it but the reality is that there is no proven cure and treatment for the condition. Scientitsts dont even knwo what causes it. it is still all therom and speculation. Hopefulyl raising awareness will help raise funding into further research. Best of luck.
bigblindray 3 months ago
it looks fake as fuck!
dannypercival 7 months ago
@dannypercival how does this look fake, until u go through it u will never no
babysmudgeiloveu 6 months ago 3
@babysmudgeiloveu . Don't be offended, I didn't mean the illness, I meant the documentary, it looks staged, performed, amateur, do you understand? I'm sorry for anyone with this illness, truly I am. I don't however feel sorry for the production team of this short film. Is that OK for you.
dannypercival 6 months ago
Google "environmental illness resource center". I helped myself more than anyone. Google "wheat/milk intolerance". It is the first step toward increasing the power of the immune system. No detergent. No perfumes. Baking soda to brush teeth and clean house and dishes. See for yourself. I used to try all sorts of things if you want to study. "the cure for all diseases." CLUE.
westshideasss 8 months ago
Who ever says ME is a Psychological ilness they are talkin rubish, I hav ME and am very determined to do normal teenage activities, even if it is just going to a friends house, but there are some days no matter how motivated I may be I physically can not do it!
MissL0iS 10 months ago
I don't know what I think about the causes of CFS, but people who dismiss it because they think it's a psychiatric disease are idiots. Everything you 'choose' to do is the result of a real, physical organ in your head called a brain.
(I don't have CFS)
LordGoatAlmighty 10 months ago
My social worker I used to have said people who have ME are just lazy and that is all that's wrong with them, people like him need to be shot!!!
nz1ify 11 months ago 3
I would give one of my legs, yip I would give one of my legs to get rid of my M.E. I am 22 and I can only go for a 5 minute walk every 2 days in the forest. I used to mountain bike ride/cycle 80 kilometers almost everyday, it made me so fit and healthy but then I was put on a medication and it made me throw up for 3 months as they said the side effect would go away which it never did. I am off the medication now but got M.E from it I have had M.E for 1 year and one month now! It isn't pleasant.
nz804 1 year ago
And I do look at all the facts. Hence my conclusions. Honestly, It is easy for one to believe they have a physical impairment if you think long enough about it and oversleep/fail to move around to the point where muscle wastage sets in. So I do believe your convictions are deeply held but it's psychological. Fact.
ohpleasereally 1 year ago
@ohpleasereally I can't believe that you think this is psychological. I was diagnosed by a top University here in the states and I didn't know what was wrong with me over the last 20 yrs or so from being in the Persian Gulf War. I am not faking these symptoms, they inflict my immune system, endocrine system, nervous system and the lymphatic system. This is more of a auto immune disease that is very debilitating. I didn't know what was wrong with me all that time but now I do know it is CFS.
branman055 10 months ago
@ohpleasereally Absurd. Why is it that Olympic level athletes get sick, even though they still try to exercise? (albeit at an incredibly lower intensity and duration.) Could it be because most people with this illness have infectious diastolic cardiomyopathy? So it's just a coincidence that most of the viruses assoc. are cardiotrophic. It's coincidence that Serial exercise testing shows measurable deficiency in recovery (much worse than congestive heart failure?)
synapse131 10 months ago
Lol! I can safely say i wont develop this psychological 'condition' but then I don't have self esteem issues nor a subconscious desire to blame my deeply entrenched fears of normal social interaction on something tangible like a so called medical illness. Seriously - go to counselling, try some exercise. You'll be amazed at how your 'illness' starts to fade... Stop wasting your money on books, drugs or otherwise, it's a con. Most psychologists, psychiatrists and physicists will tell you the sam
ohpleasereally 1 year ago
Vicmitch, if you bothered to read the rest of my comment (u probably didn't want to waste the precious little energy the 'ME' leaves u with) you would see that both my parents are doctors who also see this 'disorder' for the horseshit it is - I am very well informed thank you. You people infuriate me. Get some dignity and start living instead of sitting on your backside having others feed you the attention you so desperately crave.
ohpleasereally 1 year ago
This comment has received too many negative votes show
Smokin Cold I nearly peed myself laughing at your comment. I would hazard a guess that most people on these forums are lazy uneducated benefit claimers. I myself WORK for a living after I received a top degree from a top university in psychology. Uneducated I certainly am not! I will never have ME because I have motivation and self-pride.
ohpleasereally 1 year ago
@ohpleasereally after my degree which took a lot of motivation as a single parent running a household & working hard at many things, including raising £5,000 for my local hospital in a charity event that caused an allergic reaction that nearly killed me, reaction to steroids. I persevered determined to recover, tried to keep my self employment going, pushed myself. Slowly losing the ability to express at will, self care the basics etc was devastating, people walked away. It could happen to you.
Angelishylainey 1 year ago 4
@ohpleasereally Psychology, that explains a lot. Overcompensating because you got a degree in a pseudo science. Why didn't you at least try for something useful like medieval literature? Instead of wasting everyone's time why don't you try reading the latest research on ME/CFS in Science or JAMA? If you know how...
vicmitch 1 year ago 3
@ohpleasereally Be careful - pride comes before a fall - you still have a lifetime left to develop this illness, then perhaps you won't be so bigoted. Obviously your educational training didn't teach you how to look at all the facts, first. Go back to your books and look up 'bigotry', 'media stereotype' and 'prejudice', then walk away feeling good about yourself. You are an obnoxious, conceited idiotl.
mutopian1 1 year ago 3
@ohpleasereally "I myself WORK for a living after I received a top degree from a top university in psychology. Uneducated I certainly am not! I will never have ME because I have motivation and self-pride."
Yeah, you also have sound physical health, you fucking retard
TheJoyLoveMoney 10 months ago 3
@TheJoyLoveMoney Hope your one of your family members doesn't ever get this, or your old child.
TheAdupuis 8 months ago
@ohpleasereally you are an ass! you have no idea what this disease is like. Since you dont know what is, you think it can only be be some form of hypochondria. I HATE how self-righteous people like you are - you really think you know everything, don't you?
audrig111 6 months ago 4
@ohpleasereally wow, you're an ignorant fool. you don't know the pain and suffering that a person with ME is facing, how painful it is to see people you know moving forward while you're stuck in the same place everyday and feeling like there's no where to go. Alone and very misunderstood is what they are feeling. They didn't want to have that illness. You're the uneducated one who keep posting moronic comments. I hope you get ME so you'll know how it feels, you effin retard.
SmokinCold 1 year ago 3
Comment removed
SmokinCold 1 year ago
Comment removed
SmokinCold 1 year ago
Comment removed
SmokinCold 1 year ago
ohpleasereally - you are talking out of bilssfull ignorance who are u to judge ? u it is veiws like yours that make living with ME harder and its already impossible. i would like to point out sleep deprevation is used as tortuer. you cannot understand what it is like (luckly for you) to be that tired and in so much pain . you talk about trusting the proffesionals ? NICE guidelines state that it is a neurological disease .dont talk about what you dont know you only embarrse yourself.
iluvlaughinghard 1 year ago
Yes because medical psychiatrists with all their years of specialist training and study are no match for your expert knowledge. And by expert knowledge I mean the ranting of someone who clearly has too much time on their hands. I cant believe I'm even replying to your uneducated moronic comment.
ohpleasereally 1 year ago
@ohpleasereally - So you've replied to my post but deleted my post. I have looked into this issue and came across this information about the files being witheld. I then went to archives and found this to be the case. Anyone with any brain cells can do that. You don't even have to leave your own house to do it. That IS an issue. My own policy (proven over the years) is believe the OPPOSITE of anything any psychiatrist says.
nitrochic 1 year ago 2
Now now nitrochic... Uve got access to secret government archives? Oh god then I'm really sorry! I didn't know u worked for MI5!
Put ur tinfoil hat back on u loon. ME is a noted somatatization disorder - why else do u think u've had to argue ur case that it is a 'disease?' u don't see MS succeeded having to do that because MS IS REAL!!!!
ohpleasereally 1 year ago
@ohpleasereally I do not understand why you are so interested and so outspoken in a disease that you do not understand. This is NOT a psychiatric disease, it is an immune system dysfunction. If you are familiar with medical journals, you would have read recently about the XMRV / MLV virus relationship to ME / CFS and the immune system . As you are interested in the condition you may find the YOUTUBE DENLANDER794 video that I made for my patients helpful in your understanding.
DR Derek Enlander
denlander794 1 year ago 4
Oh my god.
Of course she has no energy. All she does is eat and sleep causing her to pile on weight. Shes pale because she doesn't get any sunlight. I see a spoilt little girl who's parents are indulging her to a dangerous degree. They indulge her because they want her to stay like a baby. Cutting off the crusts because chewing uses too much energy? Dear god!
ME is a psychological condition suffered by those who are afraid of the real world and who subconsciously want to be pandered to and b
ohpleasereally 1 year ago
This has been flagged as spam show
@ohpleasereally - what an absolute crock! You obvioulsy don't know what you're talking about! The government files on ME were being witheld from the public until 2023. I've recently found out and verified it with national archives that this has now been extended until 2071. Somatization disorder my arse. That's just psych drivel (there's an awful lot of it about ). Do your homework properly and don't state something unless you know the facts!
nitrochic 1 year ago
There is a known cure, some people just try real hard to make sure you don't find out. It's a miracle drug called Cannabis. Medical marijuana is prescribed by doctors in 14 states in America now for this and other chronic disorders Better show up a bonghit late then not at all. This plant saved my life.
flyashx 1 year ago
@flyashx Exactly how did it save your life??
ladyfuschia 8 months ago
This has been flagged as spam show
I am a recovered fibromyalgic who left the care of the medical profession to discover the cause and cure of this horrific condition without drugs, and am living proof you can cure this and take back your life. Symptoms are mistaken for the cause and treatments that help do not cure. Please, do not be discouraged by failed hope and keep going!!!
Valerie Lumley, Recovered Fibromyalgic and author of
"Curing Chronic Fibromyalgia - Choosing What Works"
ValerieLumley 1 year ago
GOD! LOVE YA! PRAYERS ARW WITH YOU!!
jeanie1963 1 year ago
From my experience and from what I hear, being in the Caribbean area is the best
chance for ME/CFS people to be well. I don't know that the poor girl in this video
could make the trip though. I certainly wish her well. I admire her family for caring and I admire her ability to enunciate her situation.
PaulBeet 1 year ago
@PaulBeet This video was shot several years ago and I think she has improved somewhat since then. A trip to the Caribbean from England is out of the question for anyone with very severe ME - the journey alone would last a day or more, there would be the noise, the sensation of movement which some ME sufferers find very difficult, and then adjusting to the climate and whatever the healthcare situation there is like. It's just out of the question.
IndigoJo 1 year ago
Thanks for sharing that vid. I have ME too but I'm lucky because mine is in remission. I wish you all the best.
indiemuzochick 1 year ago
Be strong.. your a good individual! my thoughts are with you!
Dynaverse 1 year ago
I think this is Claire Wade; she has two websites. You can google "Surviving Severe ME" and "ME and my life" - I think the first is more recent. She did a book which AYME published, but AYME have just published one this year by Emily Collingridge, but you can download Claire's in PDF form from the SSME site.
IndigoJo 1 year ago
This young lady has got a great mum. I hope that a cure is found for this horrendous illness soon. Too many lives have been wasted and too many people are still suffering and yet there are some ignoramuses who still call this "yuppie flu".
MimicMimix 1 year ago 2
I am bedritten for 3 years now with cfs so know what you going trew googel dr clark
dirkjolandie 2 years ago
This comment has received too many negative votes show
Being called lazy imo, bed bound for 6 years? no wonder you are aching you have muscle atrophy.
'rolls eyes'
MrRyback911 2 years ago
We've just started a project trying to raise some awareness for M.E as so few people understand what it is.
It's up on our channel - it'd be great if you could all go and have a watch and subscribe and spread the word.
x
wizardscar 2 years ago 6
We have many specialised ME/ CFS videos on our channel - please do feel free to take a look and thanks for this great video
freedomfromme 2 years ago
i have a friend with CFS. she says its like being able to sleep for a week but your still tired
cartercool90 2 years ago 2
I think that the cause of CFS/ME has many faces.
I don't think it is a virus ... it is probably a contaminant that exists in many organisms that spreads without any symptoms (especially when it reacts with lactose / fructose) but causes effects when it reacts with other things like cells, viruses bakteria and fungi. It causes inflammation (and it is the ONLY cause). Hormone stimulation is fuel for the contaminant.
The higher its concentration in the blood the worse the effect in hot spots is.
hobbykuenstler 2 years ago 2
i was like this for 3 months but gradually got better but it took some work. i had to do yoga, meditation, and experiment with exercise. changing your diet can really help you, i noticed that she was eating toast wheat can make this condition worse.
neil1758 2 years ago
neil - three months either means you have CFS/ME and are in remission (good), or that you had something else. You should do some research into this and find out what it really is. Posts like yours only feed the ignorance of others, who tell us that we can just 'snap out of it.' We can't, any more than someone with MS or MD or polio can. Please don't make comments about freaking wheat toast.
RubyMiami 2 years ago
the point i was trying to make is that you really have to put the effort in if you want to get better, making drastic changes to your diet this girl did'nt seem to want to change and just accepted the fact she was stuck in bed, trust me i feel absolutley awful when i walk but i still fight and do it, the major difference with MS is that there is evidence of something pyhsical going wrong, chronic fatigue is an illness which varies a lot but what u need to know is people do recover after years.
neil1758 2 years ago
if i could say something to her, i'd say it does get easier - ive had m.e for the past 8 years and am now at a point were i am looking for part time work, although i still have to rest in between, - i'll be thinking of you hun - i was trapped in my own home for years xxxxx
sexypinkfairy 2 years ago 2
I don't have cps. I don't have a normal teenage life too. I am victim of a bully lol
Timx4 2 years ago
I have been trying to load dirty dishes into the dishwasher for 2 days now. I can put a few in and then have to stop. This can go on for quite some time.
If I drop something on the floor I have to muster up enough energy just to pick it up.
I wish people would just understand how devastating this is. I visited my relatives yesterday and will pay for it for the rest of the week. My whole day has to be fit into 2-3 hours.
The worst is that people think we look OK. We're not OK.
Cissy2cute 2 years ago 23
Cissy2cute I will be praying you,I go through the same thing so I know.
ingodwetrust365 2 years ago
Cissy, this describes it very well. I lie in bed and wish I had the energy to make it to my desk a few feet away and go online. Some days I don't make it. Making plans went out years ago. I am lucky to make it to the dentist and necessary things like that. I am not old but I think seriously about going into a nursing home. How can I though when most people don't believe this exists. Which is the cruelest part of all. I am not stupid and I am not crazy. I am ill. It's Kafka-esque.
RubyMiami 2 years ago 3
@Ruby--Another quote from a sufferer. Sometimes I ask myself this: (sorry, don't know who wrote it)
"Is this Real? Have I been Poisoned?"
Makes me wonder sometimes just what has gone wrong :(
Cissy2cute 2 years ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
I feel so sorry for her
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
Comment removed
mc1000ification 7 months ago
People like this arent ding a proper rehabilitation approach
notthelastword 2 years ago
notthelastword aka internet troll - exercise makes this WORSE, fat lot you know. Get your facts right before making ignorant posts.
RubyMiami 2 years ago
@RubyMiami
Exercise has been shown to give therapeutic benefit, and it was critical to my recovery. Often people who have never recovered claim to know the most about what works and what doesn't.
notthelastword 2 years ago
Oh boy. I know what it is like for a fork to be too heavy. I use lightweight unbreakable plates. Once I could not tear open a paper packet of sugar. The fatigue, the muscle pains, not being able to walk. If I stay in bed then I can't walk up the stairs so I have to keep moving. I do some small specific exercises with therabands.
iraqidolphin 2 years ago
Alguien puede traducirlo? muchas gracias
kirabest 2 years ago
if I eat too much sugar like I did today, I am quite worried about how bad this will get.
The range of other problems I have is enough to keep me from having a normal life - my tinnitus is extremely depressing, I am sensitive to noises, I never seem to enjoy anything. Seeing psychiatrists is BULLSHIT, you just don't know what sort of trouble peole with this DIABLOLICAL condition go through.
This is a SERIOUS condition, not merely one of feeling alittle tired and shit,
SO SUCK IT UP AND LEARN
MasterSun2200 2 years ago
Comment removed
sexypinkfairy 2 years ago
Who the "F" is this ezadda guy?!!
Hoho...
:<P
I have had CFS/ME since 13, I am 29 now. I do NOT have FM (fibromyalgia) but my legs do ache constantly, it's just my brain shuts it out.
I assume people with FM have a much more severe thing going on with it.
Re. my life, I have tried but failed, I am having too many palpitations and digestive issues leading to palpitations etc.. these days and have had to go on Propranolol (Inderal) but at 80 mg / day it is not enough to stop them
MasterSun2200 2 years ago
This has been flagged as spam show
There is this other guy Alex Chiu with his Immortality Rings, he treated lots of fybro myalgia cases. I had his Immortality Rings on and it certainly did help my pain a lot.
alexapollo22 2 years ago
This has been flagged as spam show
Read Explaining colours to a blind man. Not only will it enlighten many as to what living with a mental illness and chronic fatigue syndrome is like, it also gives comfort to those sufferers who think there is no hope and that they are alone. It is very informative, sometimes shocking but also very funny in parts. All in all, a good read and highly recommended.
hsttraindriver 2 years ago
I have cfs plus many other conditions, and as so, mylife is very different now to what it would have been.
I have it since i was 12 after a operation, now at 28 yes my life is very different to what i would have liked, but i still do have a life.
Even though most days i can not make it out of the house, I still have good friends and am very much a part of my familys life.
I have been lucky with my doctors and family and this i will always be greatfull for.
moonwitch1981 2 years ago
This comment has received too many negative votes show
Taking this illness seriously is a fatal mistake. I know from experience. Like the nutters who work tirelessly to change the name of it..duh..will that help you?
notthelastword 2 years ago
Just asking were you reply to me, because i think it's quite clear that i keep a very up side to my life and not
"taking it seriously".
didn't know if yo ment this to me or a comment about the video in geneal so thought i'd ask??
moonwitch1981 2 years ago
This comment has received too many negative votes show
I have endured the worse pain ever today. I watched this whole video. Can you not see what you are putting your poor family through. Ill be honest because i am not related.I am not disputing your "pain" but you have to suck it up and give a little back to the people that have been catering to you for years.You are not only destroying yourself, but also the people that love you.You have to seek emotional support from an outside source,because deep down you know that your experiancing phantom pain
ezadda 2 years ago
This comment has received too many negative votes show
I do know what im talking about. I am in constant pain, all the time. I am constantly tired, and suffer lethargy. I dont go to the doctor because I hope he is treating people who are dying or helping people on the cusp of life. He does not have time for me ,as everyone in the world has the same condition as me. Its about time you Fibro guys come to the realization that no one gives an "F" about your condition. There are wars, collapsed economy, and sick kids out there. You make the world worse.
ezadda 2 years ago
I wouldn't bother commenting on this love untill you have any idea of what the hell you are talking about :)
Georgiaaa93 2 years ago 2
This comment has received too many negative votes show
"RELAXING" theres you friggin problem right there. Get out of your pit and volunteer on a sick kids unit where kids are dying of a real disease. Doctors ignore you because you take valuable time away from people that truly need treatment. Its funny how everyone rips the doctor until he tells you something you want to hear. Just remember : There are dying kids out there. Your condition is a problem. Its a problem to society. Feel proud of yourself
ezadda 2 years ago
Jesus Christ get this girl some thyroid some T4/T3, she is clearly low on it. Her face is puffy, loss of eyebrows, hair is thin.
Wow I am not a doctor and can see this.
By the way I have CFS and am being treated and am getting better. There is hope people.
She needs to read the Book From Fatigued to Fantastic.
kruseman44 2 years ago
i have undiagnosed cfs. It feels like schizophrenia but i have no previous health problems. People think i act lazy on purpose and when i say im tired they say the doctor said u have no brain tumor or mental problem just depression. But its complete bullshit and i can never say things without studerinng its annoying and it affects my mood extremely, ppl think im mean but im really not. Please if you have any TESTIMONIES OR CURES PLEASE TELL ME. THANK YOU!
xLilPunx96 2 years ago
how are you now? has your condition changed?
david7boggs 2 years ago
I've had CFS for over 18 years so I do feel your pain.. . . . .Its so hard to move around and have a normal life. I spend most of my days inside and when I go to the mall I only go to Border's Bookstore. I can no longer go to cultural and art festivals because it can be overwhelming on my body and then I have to spend the next 3 days resting, usually sleeping non-stop and that's without muscle relaxants or sleeping pills. Long trips to the country are also a burden. Research "gut leak"
joyfulgardenpr 2 years ago
Only people with CNS' disorders such as MS, ALS, Guillén-Barre can understand what the child is trying to say. Compassion and understanding are the best support she can be given.
Sefardisafran
Hoboken NJ
USA
Sefardisafran 3 years ago 3
im 14 and i have m.e. and fibro too. it really sucks, i feel so down all the time and people saying im lazy and a lier just makes me feel even worse. some people are so ignorant lol. im at 30% now ( basicly means im just outside the severe category of m.e.) but i was at 15% 2 years ago. i couldnt get up, talk, or eat. it was the worst time of my life. i didnt speak to my family for about 7 months. :(
cromergirl44 3 years ago 2
Just like to say that I don't think she should be criticized for showing signs of wellness, ie talking.She said she was better than she had been.Frankly I'm really glad for her.I can chew and talk like that.Other days I can't get out of bed for pain.I am thankful I am not in the worst catagory,and recognise the awful trial those with very bad ME have, but it doesn't diminish my difficulties.I still can't care for my family properly,work, have a normal social life or have day without pain.
chocchoccychocolate 3 years ago
This comment has received too many negative votes show
Has anyone conducted a demographic study on who suffers from ME.
Is it mainly white, middle class professionals who don't want to admit they are suffering from depression?
tomme1981 3 years ago
ME or CFS?
notthelastword 3 years ago
tomme1981, has anyone ever done a demographic study on internet trolls? Is it mostly bored little kiddies in their parents' basement?
RubyMiami 2 years ago
Thankyou for sharing this with. I am a Mum of 3 with CFS. There are days when , if I push myself, I can be as animated as you and seem apparently absolutely normal. Then spend the next week just recovering from it! Also I know that after a while you get through a kind of pain barrier to get things done.If you know you've got to do something you can try and gather the energy over a week or so and then afterwards allow time to recoperate.This is not laziness or any where near the normal life.
chocchoccychocolate 3 years ago
I don't understand how she can talk so much, but eating crust is hard. Also, why would a real fork be so heavy when she can use her arms while she talks? I never even wave my arms around that much while talking.
owtfmadness 3 years ago
yea I am wondering the same thing, most of the time I can't keep my eyes open, it takes effort to open them, and I sound drunk and half asleep when I talk
tolive0517 3 years ago
the wieght, do you know how many muscle involed in chewing?
kjburger12 2 years ago
owt, it can be hard to understand until you have lived through it. But short bouts of adrenaline due to excitement can give a bout of false energy. Imagine being shut in a room for years; would you be excited if there was someone to talk to? That might give a bout of false energy. But people with CFS/ME pay for it with days sleeping after. Holding a fork is fine muscle control, different than 'arm waving' though I noticed no 'arm waving.' She's stuck in bed and is 18. Do you call that normal?
RubyMiami 2 years ago 2
Comment removed
Hlcgregory 3 years ago
This comment has received too many negative votes show
I hear that! lazy bitch!
Chnswdchldrn 3 years ago
what about talking -crusts! i am sorry i had ME really bad ad you dont worry and obsess like that you are wiped out with a constant flu like illness!
pilomaya2012 3 years ago
Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent,(no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER,For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!
antares4141 3 years ago
She is severly hypothyroid. Migranes, thin hair, puffy face. Get her some T3 for Gods sake
kruseman44 3 years ago
May I ask if you are a nurse or Dr? I also have CFS and they have tested my thyroid and everything else. My tests are all normal. But I have these awful symptoms. How do you know she is "severly hypothyroid"? The puffy face is just her wieght. She doesn't move or exercise because of CFS so ofcoarse her face is puffy. She's a little heavy. If you have some helpful medical advice to offer, please do. I and other people with this are suffering. But it's not thyroid.
JamesBarkson 3 years ago
Beachbayu, are you a Neurologist? are you a "visionaire"? or are just some scumbag that hates people because of your lousy life.
Youn Anarch
Sefardisafran 3 years ago
This comment has received too many negative votes show
I bet a million bux in the bank would cure this shyte fast.
7universes 3 years ago
i think youre right about thats actually.she has alot of energy for a ME person. when i was bedridden with the illness i wasnt talking like her -she could run a talk show.
pilomaya2012 3 years ago
i agree with you!
i havn't ever got as bad with my m.e to be bed ridden but on a bad day sometime i don't have the energy to talk for that long and when i do i sound drunk cause of brain fog!! haha
nattleebs 3 years ago
Mold and CFS symptoms are directly related to each other. You can prove this to yourself by going to walmart buying a $37 dome shaped 9x7 tent, (no stakes needed, nylon very low on VOC'S) setting it up in your bedroom and putting a medium to large size hepa filter in it. Don't come out without a respirator designed for asbestos and mold abatement EVER, For about a week anyways. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!
antares4141 3 years ago
This has been flagged as spam show
cfs yea right.. fucking asshole ... your just fucking lazy!
MRtoker2007 3 years ago
This has been flagged as spam show
cfs yea right.. fucking asshole ... your just fucking lazy!
MRtoker2007 3 years ago
I have been back and fore hospitals trying new treatments ever since it first started, altered everything in my life right down to what i have my clothes washed in, upto now nothing has worked, but that won't stop me being first in the que next time they find something worth trying.
I really hope it works for your girlfriend but i have heard and tryed many if these "cures" over the years,But if it don't work you just have to keep going. If it do work please post more about the treatment.thanks
moonwitch1981 3 years ago
I am 27 and since i have been 11 years old i have had cfs.
I was enable to attened secondry school, and was home schooled but the illness became quite bad, quite quick.
Now at 27, the illness has stoped me doing thing i would have liked to do, because i know have CFS, fibromyalgia, PCOS, IBS, GERD, meiners disease and neuralgia.
So my life is very different to what it could have been, but i still do have a good life, I have a wounderfull family, good doctor and most of the time good outlook.
moonwitch1981 3 years ago
I just want to say something to the people who've said ME/CFS can be cured:
1) There is no definite cure for ME/CFS (the comment about functional gut disease, & being cured once you heal your guts, that might work for you, don't assume about other people though)
2) Everybody's experience with ME/CFS is different, including what things do & don't work for each person, & how long they are sick with it.
There are some treatments, but there's no guarantee that they work for everyone with ME/CFS.
amyangel3 3 years ago 2
i totaly agree with you,
cfs/me has different causes.
but why is everybody thinking there is no cure?
even when there is one guy out there who got cured somehow, it profs that there is a cure for cfs/me.
and i dont think you have ever met a doctor who said you cant be cured...
there are no longtime studies about cfs/me. the longest studie ive heard from was about 5 jears.
doctors and sientists started searching just about few jears ago.
no one can say what cfs/me 100% is.
LukePeterson86 3 years ago 2
all i want to say to you is that there is hope though...
LukePeterson86 3 years ago
there is a cure for cfs anyway...
i served cfs for 5 jears and im "cured" now
its just ignorant to say that there is no cure. but its no surprise that everybody says so, doctors dont say that there is no cure. only people like that girl are the reason why everybody thinks so...
many people with cfs/me have a funcional gut diseas, what means all the toxins and bacteria can leave the guts and make truble all around the body. when you heal your guts you can be cured.
LukePeterson86 3 years ago
Hi,
I recovered from CFS and am now writing a book about my experience. The book also includes the know-how of how to heal yourself. E-mail me to receive a copy.
The process took me 3 years, but could have been much faster.
Leharik 3 years ago
My friend had servere M.E and recovered within 3 years. It was amazing, inspiration to me
redrose91091 3 years ago
Any information that she can give us..?
xxxmequeenxxx 3 years ago
She doesn't talk about it much as it was a bad time for her but she has said that you should have faith in your docotor, go to a spiecalist. She said the rest, activity thing really worked for her. Don't push yourslef furthur than you can do.
redrose91091 3 years ago
Does anyone know how this girl is? Let us know!
marilynmagnificent 3 years ago 3
I've had ME/CFS for around 7years, undiagnosed and unrecognised as a problem for 5 of those years. After being diagnosed I was encouraged do to a Graded Excercise Program. By 'pushing' and trying to maximise what I could do my health continued to deteriorate to the point where I was so sick the 'severe' glandular fever I'd suffered from the year before seemed like a piece of cake. I still push occassionally, I end up struggling to digest food and able to do even less. Be cautious of GET!!
newhouic 3 years ago 4
4 yrs ago anyone claiming cfs i would call nuts,having severe cfs now i know better....IM NOW TREATED LIKE IM NUTS,i will no longer defend myself,its not in the head
jrfingo 3 years ago 7
I hope you understand I'm not trying to criticise, just to make more people understand that doctors who prescribe CBT/GET are NOT saying that the ME isn't real, as they are prescribing something that they use on obviously "real" illnesses.
damnshesbionic 4 years ago
*cont.*
I think what many people who have CFS/ME don't realise is that CBT is used on so many other people such as cancer patients. The fact that our community seems to have such a paranoia that everyone thinks it's in the mind just means people become ignorant about treatments that could, potentially, help them. I have M.E. so it isn't as if I don't understand what it's like, but spreading this anti-CBT view doesn't help anyone.
damnshesbionic 4 years ago
Unfortunately CBT is usually used incorrectly in people with CFS/ME. The only common "illness perpetruating behavior" in people with CFS/ME is doing too much, while the whole point of CBT as a treatment for CFS/ME (instead of just a coping tool) is usually to get people to do _more_, because it is erroneously thought that CFS/ME stems from deconditioning.
I don't think there are many CFS/ME people who are "anti CBT". We're just against doctors pushing CBT as an effective treatment for CFS/ME.
DiamonDie 3 years ago
What knowledge have you got of this? Doing too little also makes us worse, as when the underlying cause goes, it hurts to do "normal" things again. CBT isn't about "making you do more", it's about using your energy effectively and making yourself better. I doubt you've ever done it, then? There are a huge amount of people on forums etc. who, without too much knowledge about it, push a view which is not necessarily the same for everyone. It helps some people with CFS/ME so don't put everyone off.
damnshesbionic 3 years ago
Please read my message as I wrote it and do not try to intepret it in other ways. Like I said, CBT is _usually_ used _incorrectly_ in CFS/ME. _Most_ of us do _too much_ instead of _too little_ and if CBT assumes we do too little (as it often does), it is at best ineffective, at worst dangerous.
No, I have not done CBT, as I have no psychiatric problems and can manage my illness fine. I am, however, a medical writer, specializing in CFS/ME and I have read a lot about this specific subject.
DiamonDie 3 years ago
I can't quite see how I've interpreted it in any other way than how you wrote it. CBT is actually about balancing the amount you do-if you do too little then your muscles weaken and it hurts more when there is no underlying cause.I am doing CBT and it is not about having psychiatric problems,in fact nothing psychiatric has been mentioned.If you can manage your illness then that's great, but don't put other people off doing it when it can really help some people, although others may not agree.
damnshesbionic 3 years ago
Kinetophobia is a psychiatric problem. I have never heard of a single patient with CFS/ME who actually has this condition. So called "deconditioning" has never been shown to be a factor in CFS/ME, which explains why in a large survey 93% of CFS/ME patients found CBT unhelpful. In another survey 22% even found CBT harmful.
The most helpful treatment for CFS/ME is rest. Pharmaceuticals can also be extremely helpful, like in my case they stopped illness progression, which CBT is not able to do.
DiamonDie 3 years ago
I disagree. having first hand experience of CBT. i know that every time physical symptoms and ways of managing them were brought up when i was there, they would divert it to trying to sort out alleged social problems i was having. they wouldnt even mention it, and implied i was a hypochondriac, rather than giving and tools to manage my life around my symptoms.
jorgepeterbarton 2 years ago 2
@damnshesbionic I agree 100% If you do things slowly, rest in between it should help you from getting too tired. I always have to take breaks in between work. I still sleep a lot and get constant headaches and pains but thank God I am not bed ridden. I hate being tired all the time but i'm so determined to lead a normal life I don't let CFS get me down. I am always in pain, when I'm not its great. I guess we hide it well.
nyxong24 1 year ago
@DiamonDie I have to completely agree with you on CBT. The reason it's pushed so much is because it's the only idea mainstream medicine has, along with 'graded excercise therapy', which is completely useless in severe CFS/ME. CBT *can* help some to 'cope' - but I think it's those that are down or negative thinkers along with the CFS that would benefit most from it. Myself I have it in a severe way, but by nature i'm a very positive & patient person, & rarely think negatively.
sypher7 1 year ago
I don't agree that this video should be used as a medium in which to complain about the lack of research, or argue about the causes.
However, luminescent, it is crazy to say CBT/GET should go, especially in such a harsh way as it is found to have helped many people.
damnshesbionic 4 years ago
No, it has been shown to HARM so many people with ME.
There is no medical research to show that CBT helps people, other than people with mental illness (Oxford Criteria CFS).
If you study ME research you would know that ME patients have increased oxidative stress - AT REST.
Exercise only INCREASES this oxidative damage in ME patients blood vessels, risking heart attack and stroke.
So, you are claiming that harming people, 'helps many'!!
Watch my videos for the truth.
luminescentfeeling 3 years ago 2
very interesting. i love working out and was in tip-top shape for the last 20 years. after being diagnosed with CFS 8months ago, i cannot workout at all even a 10 min walk "crashes" me.
71kingarthur 3 years ago
I've had M.E. since 96. Yes, it's mainly immune system related. But regular relaxation slots, exercise (sensible:do what u can, no more) emotional support, getting out (if and when u can) and a mainly raw vegan diet does help a lot
zenstudent37 4 years ago
Try my theory on yourself and let me know if it helps before you knock it. Theory being our immune systems are trashed and cannot handle normal expousure to pathogins were exposed to everyday be it weather were ingesting them via our food or inhaling them via the mold in our homes.
antares4141 4 years ago
Hi there,
I didn't knock your way. I only suggested another 2 u. M.E. is so difficult to treat. It varies from one to another in many ways. Yes, pathogens r killed when u cook. But so r nutrients. So, A balance between the 2 is probably right.
zenstudent37 4 years ago
I believe based on 10 years of experience Cfs/mcs is an immune disorder that manifest's it's self by reactivity to pathogins. Mold is simply a pathogin of opportunity. Another instance of this is the food you eat. If you cook EVERYTHING you eat you won't have reactivity anymore which lends credance to my theory.
STAY AWAY FROM THE QUACKS! They are vultures.
antares4141 4 years ago
I've moved many times trying to escape mold it's no easy task! Out of desparation I went to craigs list and am renting a room in a brand new house for $600 a month. I am doing much better. Still have issues but the difference between some of the places I have been in the last ten years are stark and unmistakable.
antares4141 4 years ago
CHECK MY VIDEOS HENRY IT WILL HELP YOU
HENRYROCKS911 4 years ago
Anyone who says they are 'cured' of ME is a laughing stock of themselves. ME is a chronic illness - hence the word Chronic fatigue Syndrome. These graded exercise/CBT loons need to be rounded up and deported to the north pole. Then people with real ME can finally get some treatment.
luminescentfeeling 4 years ago
I have had cfs for ten years and have found one common denominater. The connection of my up and down swings are always related to mold expousure. It's a travesty that this isn't recognized by science becuase it's reproducible and thus verifyable. That and this illness IS very treatable.
antares4141 4 years ago
Mold exposure can indeed cause CFS or CFS like illness in some cases. The weird thing is that some of these cases of illness (even very severe ones) resolve completely or almost completely after the mold exposure is removed, but others remain very ill (such as a friend of mine). It would be great to find out what makes the difference.
DiamonDie 4 years ago
check out my vi on cfs
PLAYINGWITHCFS 4 years ago
I've had CFS for 5 years & although the messaged feeling is to stay in bed u REALLY have to fight it. Even when am v. ill I make it a rule not to stay within covers during day but get dressed eventually just as symbolic act & lie only under day blanket. You also have GOT to get out of wheelchair. Use sticks just for bit even if shaking & just for 1 short attempt everyday. Your circulation will respond and aid self-healing. And that's because you're young, your body will respond.
arielunbound 4 years ago
Unfortunately, that doesn't work for people who really have CFS/ME and can be extremely dangerous, even life-threatening. For many people this illness is progressive. They cannot increase their activity levels. They cannot even maintain their activity levels, because the amount of what they can do gets smaller all the time. Fighting back only accelerates the progression. I've been there myself, only proper medication (LDN) stopped that deteroriation. And I still can't gain more stamina.
DiamonDie 4 years ago
I really do have CFS and which was catagorised as severe. I was also shocked I could at all get better or increase my activity levels. However, from what you say it was obviously not as severe as that, and I think the term of fighting back only applies to when you get a bit better. But I meant in a spiritual sense too, and I am extremely sorry to cause offence.
arielunbound 4 years ago
To anyone out there who believes they were cured from M.E. through physical exertion - I say good for you...but you probably weren't suffering from M.E. in the first place. The scientific literature simply does not support this.
DavidBR1982 4 years ago
I agree 100 percent, David. Dancerguy9999 never had this disease. I'm not saying he wasn't sick, but he didn't have CFS. People who have sudden-onset CFS often get better after a certain period of time. Then they credit voodoo or tantric sex or whatever they were doing at that moment with their cure. It's just coincidental. He's one of those people who looks down on medicines. I am not fortunate enough to be able to do that.
stillwaterguy04 4 years ago
I believe it might be true that there is an optimal amount of physical activity that can benefit someone with mild to moderate M.E., like myself for instance. However, this will not cure M.E., it may just lead to better overall health. But for a girl like Claire physical activity simply is not an option. She is too sick with this physical illness.
DavidBR1982 4 years ago
Wow this is very moving. Does anyone by any chance know how I can get a hold of Claire? Perhaps a myspace page, email address or anything like that? I'd like to contact her. I also have M.E.
DavidBR1982 4 years ago
It would be interesting to know whether the very POOR get this disease. I doubt it. No. I do not understand this illness: I am not cold hearted. But man, I have NEVER seen anyone in the GRIM ghetto's with this.
yangpu6 4 years ago
Of course they do. Sadly, they don't usually have access to medical care (or answer phone surveys). They don't make it to the statistics, but that doesn't mean they don't exist.
I don't live in a ghetto, but I am on minimum welfare due to CFS. I've faced the risk of homelessness several times since I was 16 (both because of this illness and and other reasons). And the risk is still there, as my only source of income could be withdrawn at any time, and then I would end up on the streets.
DiamonDie 4 years ago
Yes, the poor get CFS. In fact, many with CFS live in poverty.
Thank you, Claire, for sharig yoru story. I, too, am bedbound and am now unable to speak. But my spirit remains strong, as does yours. Someday soon we will get our lives back!
ellebee4 4 years ago
Laying in bed all day will never help you. Cutting crust off of bread because you are too tired to chew just makes me sick.
dancerguy9999 4 years ago
Sometimes there isnt a choice to make. You have to be in bed because if your in enough pain you wont get up, regardless of how strong your willpower is. Willpower wont help you
Patark1 4 years ago 2
And - Cold - You might want to watch Greg Crowhursts channel to see how bad it can be - I am luckier than his wife - I only spent a few years that bad - I am still largely house-bound though after 11 years - I have lost everything I ever cared about to this illness. 80% of people do not recover - that means until they find a treatment we have it for LIFE!
deadgirldreaming 4 years ago
ME/CFS is defined as a neurological disorder by the World Health rganisation - it is a serious illness. It was recorded as cause of death on Sophia Mirza's death certificate. It has occurredas epidemics recorded since 1934 - anyone who thinks it is just 'feeling tired' is seriously misguided - for more info on why things have become muddled around it go to hummingbirdsguide website - read it and weap!
deadgirldreaming 4 years ago 4
holy shit, she has CFS so much worse than.
BrynWebb18 4 years ago
Wonderful video.
I have empathy for everyone suffering with this dehabilitating illness.
This girl is so blessed that she has family that helps her and believes her.
I got CFS 28 years ago and it gradually got worse.
Now the symptoms vary everyday.
Last week it was all I could do to feed myself and go to the bathroom.
This week,so far,I am able to do the basics.
Don't ever give up.
onepeachykeen 4 years ago 2
Thank you for posting this. I have M.E and although I'm not quite as disabled as the Claire I could really relate to this. I would love to write to Claire. The depressing thing here is thinking of all the s##ts who are probably watching that and thinking it's all psycological. There is nothing more physical than this. Thanks to Claire and fmily and for posting this.
Thanks
redrachel76 4 years ago