Severe ME awareness, the true faces of severe ME

[mclaughlinjilld]

Thank you for an accurate depiction of true ME. Most of the misunderstanding has been from the mistaken misdiagnosis of or inclusion with CFS. They are not the same. No one with ME should be given a CFS diagnosis. ME/CFS or CFS/ME are simply made up terms that can mean different things. There is no ICD code or WHO recognition of either so as such there is no such diagnosis. ME patients continue to push for recognition and proper diagnosis.

[jann4sundown]

We have a 22 year old family member with M.E. My heart goes out to all of you--especially due to the harsh judgements and misunderstandings regarding this. My hope for all of you is to find positive people that really understand and care. You may only find them online--but at least that's something. Thank God for the research scientists and doctors that are trying to find answers for you--the others should need to apologize in the near future. Our family is going through the same thing---

[Caerilae]

I've had ME for more than ten years. While I'm not constantly bedridden, I'm pretty close. The simplest of tasks can be exhausting, everything takes me about 3 times longer to do, my brain is in a constant fog.

ME steals away your entire life.

It is beyond frustrating not to have people take you seriously. I've heard the lines 'you're lazy' and 'you look fine' more times than I care to remember.

Thank you for making this video to help to raise awareness of ME

[marshallah21]

I have only just starting helping a woman suffering 10 years with M.E. I did not know before what it was but now I do and it must be so hard =(

[BedboundME]

Thankyou for making this moving portrait of severe ME. As someone in isolation, almost mute & soley Tube fed I know the unbelievable destructive potential of this illness. A shock to me bc on my decline my ME was never treated seriously by drs. I sent a link to this video in a polite tweet to the dep. Editor of the BMJ.

[flyawayyME]

Thank you for making this video and raising awareness about this dreadful disease. I´ve been ill with M.E for over 16 years and have been getting progressively worse, despite of all the treatments I´ve tried.

There are not many ilnesses that destroy and restrict life as much as M.E does. Yet we often have to face terrible abuse and ignorance in the contact with doctors.

[Ghostbead]

The actual figures are that 10% get better in the first year and then the remission rate declines to almost 0 over the next five years. Can you imagine being this ill and having the people you love and rely on being told that you are lying about your body. It varies from culture to culture, but in some people just don't lie and have an automatic response to authority. When the father had this disease in the military, as late as Nam men were beaten with rifle butts for "falling out of line."

[indiemuzochick]

Thanks for making this vid. Well put together ... pulls at the heart strings

[samblackcrow]

I was told over several years by my DOCTORS that ME doesn't exist, so I couldn't possibly have it...

Really, with that attitude so prevalent, it's no surprise this kind of effort by a sufferer (which, when you have ME, is gargantuan, by the way!) is so necessary.

[moopy83]

I was only bedbound for about a little while but that was hell. I'm better now. Only 60% and getting better! Those poor people who are bedbound for years on end.

I hope they get better like i am! Good video, it shows what m.e. really is.

jo

xxxxxxx

[EmilyCollingridge]

Vikki, thank you for creating a video which conveys with such simplicity the pain we live with daily. I feel proud to have been part of it. I hope those who, like me, are still bedridden with ME will find out about my new book, "Severe ME/CFS: A Guide to Living" (see website - severeme. info) as those who have already read it say that it is an essential resource for people who are affected by severe ME and so I hope that it may help improve quality of life for at least some.

[MimicMimix]

I am sure the online groups like livejournal, etc for people with severe illness must be a godsend. This world is so full of malignant people yet reading some of the blogs of people with ME had me in tears. Such kindness and love was there and this from people who were in such pain themselves.When I have any spare cash it will certaimly go to ME 25% group.

[nemohere7]

That was a great video thanks... i have had ME for nearly 2 years now. I was only bed bound for about 6 months though, and have gradually built myself up and have learnt about pacing. Do you know of any videos that show stories that aren't just about people who are bedridden?

[girlwithme]

Very well done, sorry I was unable to get my info to add.

It's a very difficult life as I am also a severe m.e sufferer and totally bedbound.

Great video and I hope it shows the world a little of what it's really like.

[vikkkilouise]

Thank you, I hope things start to improve for you soon x

[scarletborderline]

As a sufferer of this for over half of my life, i cannot tell you what it means to find out other people out there feel that this is something that gets pushed under the rug way too often. I hope that this helps attract attention to the amazing and beautiful people also affected by ME and shows just what an impact it has on our lives and those that care for us. If you ever need any help trying to rally to get ME noticed, I'm willing to do what i can to help. Last but not least Thank You.

[vikkkilouise]

Thank you :) I have plans for another awareness raising idea next year so I will let you know then. Take care, Vikki x

[JanetteSchofield]

My mum suffers from this but luckily she's not bed bound but it does have a drastic effect on her life! Thanks for bringing awareness to it!

[tuohyforever71]

Thank you for posting this. I was diagnosed with ME early this this year. A very sad video on a very frustrating illness.

[vikkkilouise]

Sorry Emme, I went to reply to your nice comment but hit delete but accident, sorry about that, but thank you for taking the time to watch the video.

[liltitch81]

I would like some feedback, I keep getting periods where I struggle to walk and get short of breath easily, my legs get very weak and I can end up in bed for 3 to 4 weeks at a time needing help with many things. my doctor says this is not a medical problem but that I am suffering from depression. my mum has M.E. and just wondering if others would agree that I could possibly have M.E. too although thankfully at this stage it is not as bad as many on this video but it has happened 4 times this yr.

[NodoakaHachidori]

Hi liltitch, sounds like you're dr is trying to fob you off. Since when has depression not been a medical problem? I wonder if he tells his patients that suffer from depression that they don't have a medical problem, he doesn't sound like a good doctor. What you are experiencing is of course a medical problem regardless of which illness it is. I think you should see a different doctor. I hope you get the right diagnoses.You should be getting the help you are entitled to.

[liltitch81]

@NodoakaHachidori thank you for replying, my doctor does not believe depression exists. I am currently trying to change doctors, awaiting the outcome of this today. my doctor makes me feel like I am making everything up and that makes me feel so bad I cant even begin to describe it. Needless to say I havent been to doc for a couple of months now as I fear she will continue to dismiss and mock me :(

[MSmonkeyhead12]

Sweetheart, listen to me. You need to go to another doctor who is familiar with ME or fibromyalgia. Depression can not make you unable to walk or feel weak. I hope you find a qualified doctor who can help you. Don't give up, and don't listen to a doc who doesn't listen to you. Seriously.

[vikkkilouise]

Hi Liltitch, the symptoms you describe do fit ME but could also be 100 other things, could you see another GP? What ever is causing it needs to be looked into, its not the normal symptoms of depression and even if it was, you should be providing you with support. I hope your able to find a helpful doc soon x

[tube5cully]

Ricky Gervais touched on this...

[vikkkilouise]

Yes he did, he also touched on childhood cancer. Both jokes were removed after a short period of time. The World Health Organisation classes it as a neurological illness, the world heath organisation covers the world, which includes Africa....

[IndigoJo]

@vikkkilouise Did Gervais's ME jokes end up on his DVDs that are sold in the shops? In any case, when he made them and people complained, he made various excuses to do with people in third-world countries being too tired to get to the well. ME outbreaks have occurred in Africa, it's not true that it doesn't happen in the third world or on council estates, etc, it's just a stereotype.

BTW, off topic, but terribly sad to hear about Nicole D passing on, she was a lovely lady.

[terex9]

As a person who suffers very badly with m.e. I am really furios at ady's comment. Getting attention, doubt many people actually have m.e , these are comments obviously from someone which was 'faking there m.e and trying to get attention' . I am really appualed by your comments. When people like me and others are struggling through m.e and to say them things are really horrible and stupid!

[AdyMiles]

okay, i am sorry, i sincerely apologise. my CFS has been mild to severe at times, but i am fortunate that i'd never suffered from the aches and pains that many get with ME. i have mostly suffered from mental fatigue, fogginess and depression

[carolineharrold]

Hi AdyMiles. Yes you are fortunate not to get the aches and pains. So was I until about a month ago......... Never say never with this condition.

[paulrattew]

AdyMiles - my mother was diagnosed with ME about 16 years ago. Through very careful management of her condition she has been able to live a relatively normal life. She does though get periods where she is physically unable to get out of bed, either through agonizing muscle pain or through any movement being physically exhausting. Longest she has been bed-bound in any one period is 6months. For some, that can stretch for years no matter how hard they try

[vikkkilouise]

Hi Ady, I'm glad you have only ever been diagnosed with mild CFS, let me tell you the so called "attention" is no fun. I can assure you I didn't enjoy the attention of my parents taking me to the toilet at the age of 17, I'm sure Jess hasn't enjoyed the attention being shut in a room in an old people's home, I'm sure Lynn enjoyed the media attention after her death, I'm sure Sophia loved the attention when the coronor put "ME" on her death certificate.

I hope u never have to learn what its like

[AdyMiles]

many doctors do not even acknowledge ME and CFS are true illnesses. i do know how difficult the DWP sometimes make it for people with these illnesses, as it is difficult to 'prove' you have it

[vikkkilouise]

Its not like we hop into bed and decide to spend the next 10 years in it. Of course it causes problems but there are problems which cause us to be in bed in the first place!

[Kezzieangel]

thank you for making this. i never understood fully what M.E was and now I feel so privaleged that I can get up and do things. This is truly worthy cause

[vikkkilouise]

Thank you so much, it means a lot to me that someone who doesn't have ME took the time to watch and now understands x

[pixiebear54]

This is such an achievement, Vikki - you have comunicated the hell of Severe ME so clearly - thank you for helping to make people understand what Severe ME Patients and their Carers are forced to endure.

[vikkkilouise]

Thank you :)

[NodoakaHachidori]

This video brings me to tears. Again you've managed to get across the true face of ME Vikki.

Well Done and Thanks.

[vikkkilouise]

Thank you :)

[Tazaker]

Thank you for this video, I have been bedbound for too long, its about time people see the faces who have this illness, well done! xxx

[vikkkilouise]

Thank you, I hope things start to improve for you soon x

[XMALTESER]

Thanx for making the video, i've had M.E for 20yrs now, anything like this helps to raise awareness. Much luv & to all other sufferers never stop hoping :) xxx

[vikkkilouise]

Thank you :)

[pickledbeetroot]

This is so sad ,I have tears in my eyes for all those poor people.I was bedridden for 3.5 years.Thank you for making this.

[vikkkilouise]

Thank you, I assume from your message that your no longer bedridden, I'm so pleased to hear that. x

[deadgrrrl]

thank you for making this!

[vikkkilouise]

Thank you :)

[peeka85]

Good video Vikki, well done :)

[vikkkilouise]

Thanks Lucy :)

[CRANWELLPOACHER]

I never knew about this illness, such a terrible thing to happen to these people and their families. Nice video.

[vikkkilouise]

Thank you very much for taking the time to watch the video, it means a lot, if only more people did what you did, our life would be a bit easier. Thanks again x