WHAT ABOUT ME? New Documentary about the illness M.E. (Myalgic encephalomyelitis

[Michaell17588]

In my opinion, CFS is caused by an excess of the vata dosha in the body. I am by no means a health professional. I'm just someone who has suffered with the symptoms of this horrible imbalance for almost 16 years now. I had tried pretty much everything, some of which made me worse before I discovered the truth in ayurveda. I believe that this illness can be overcome and one can lead a life full of abundant energy if he or she is willing to put the work in and live according to nature's laws.

[spacedreams2111]

18 years and counting...knackered every day, and unable to have a social life, or any kind of life, because of it.

[NaturallyAlyssa]

I've heard of M.E/CFS before and the symptoms sound just like POTS and Dysautonomia which is what I have. Is there any difference?

[PaithanNL]

Getting up, showering and clothing is exhausting. Severe pain almost every second of the day. Getting up every time you fall or when you are pushed on the floor. Thinking strong and hard working. Being chronic ill is like the result of running a marathon which you did not run. I sincerely can compare it with a sports competition. It's lonely, but your not on the top and you don't get a price.

CVS is not a mental illness!

Prof. dr. K. de Meirleir Thank you for you dedication to get us better.

[PaithanNL]

Had several therapy's in 14 years. Psychiatrist need just a few words to put a mental disease on you. Who would check them? It's their word against yours.

Had several bowel and food allergy tests. Not one showed a lactose intollerance.

Goverments , psychiatrist , physician and scientists isn't about time you take responsibility of your actions, results and diagnosis? How long you are going to cooperate with this MEdic maffia?

CVS is not a mental illness!

[AmyVanderlynn]

I am an sufferer for nearly three years now and since last week I have the finaly result of M.E. / CFS..I live in germany so its pretty hard to find ANY help here. This trailer brings a lot of tears in my eyes..I always had the hope to have any other disease than M.E. ..horrible..all the ignorance, the pain of your body and of course the mental pain..

[MsJude67]

my daughter has this. Is horrible - she is "fairly lucky" in that she has good days some times - but has lost her education as it struck when she was 14/15.

More publicity - these people are not workshy or lazy they are very very very ill.

I suggest using Gary Numans M.E. as a theme tune for this (his permission required) as the words fit

Me I east dust

Were all so run down

I call it my death

But I'll only fade away

and I hate to fade alone

Now theres only M.E

[spacedreams2111]

Thanks for posting this.

[unsystematic7]

Media coverage of M.E/CFS is vital. At this time adding awareness is just as important as the research. Everyone can play a role in that by sharing information with others and sharing documentarys like this. A big thanks to all the people creating this

[jessical1969]

great documentary. I hope this movie comes out soon,even if xmrv isnt the "cause" but is yet another nasty thing we just get, i still think it helps show the general public a tiny peek into our lives....and yet I still don't know if people will really believe us. It should never have been named cfs.stupid ,stupid name.I lve the way nasim jafry describes it,often you didnt think youd mke it tru the night,feeling like your organs are going to pack in.yess,true

[dawnten]

It is criminal how the medical profession treats us. I moved to Nevada where there was supposedly a Whitmore Institute which is not open to see patients!!! Would it not be nice to let people know that? In Nevada the school system is ranked last in the Nation thus this is who become the people who run the offices (unable to fax properly), the same people become nurses. Boy can I tell you stories about them!! It is not just a mistake once in awhile with these people, but each and every time.

[lightpeaceloveify]

@dawnten PEOPLE SHOULDN'T HAVE TO SUFFER LIKE THIS, It is inhumane DAMN IT!!!!!!! Medical Profession are awful, the whole system is SCREWED!!!

[HearAndLove]

Really well done. You say it will be aired in 2012, are you hoping that it will be shown on mainstream TV channels? I hope so. Both people with ME and the rest of the general public including the medical profession need to see this. I hope it will coincide with a breakthrough in understanding and consensus on ME. A diagnostic test would be good.

Just 1 constructive criticism-correct the spelling mistakes if you haven't done already on the final edit. (Shepherd, infectious)

[zazuinfl]

Oh yes it is REAL I have it aND I Can't find a dr. to treat me since I am on Medicaid hmo. Help because i can't go on with this pain ,fatigue etc etc.

[zazuinfl]

Oh yes it is REAL I have it

[jujujoyseeker]

My 21 year old son has M.E. We are looking for a new doctor, because the ones he has had are not interested in his case. My heart goes to all of you--I see it's reality. Do not lose hope--you are worth the hope--you are not forgotten.

[nz1ify]

Day after fucking day my life is just a miserable existence with Chronic Fatigue Syndrome/ME, never ending FUCKEN STORY!!!!!!!

[TheFletch827]

@nz1ify I am so sorry and I completely understand what you're saying. I think the biggest frustration is that we are suffering so horribly and nobody knows (around us) and nobody seems to care. Everybody just carries on with their lives and here we are stuck and trapped as prisoners of fatigue and our own bodies. Most patients were very active before getting sick as was I, and then gradually I got worse until I physically could not get out of bed, ferocious headaches. Your life is stolen.

[synapse131]

Try to include some history as far as ME previous to the 80's and the fact that ME was formally designated in '69 by the world's top experts at the time and note the folks involved such as Henderson, Shelekov, Parish, Richardson, and Ramsey. Don Henderson is important since he spearheaded the smallpox program and is extremely well known in epidemiological circles. Show how there was no controversy until the 80's and how Parish and Shelekov refused to sign the CDC CFS definition.

[spiralthreads]

This is just a snip, but is so packed with accurate information I'm hoping it will be a great force for change.

[Amy2838]

What the guy said about doctors confusing the cause/effect of depression is SO true. I can't tell you how many times I have insisted (with tears in my eyes) that I am depressed BECAUSE I am sick, NOT the other way around. Of course, this is always followed by a silent nod and a very condescending brush-off about the psychological effects of depression on the body. If I have to hear this one more time, I fear that I will become violent.

[tygetje]

Where can I find the rest of this doc and is the retrovirus xmrv in it ?

Living with this ilness for 13 years and the most hurtful is the disbelieve !

Living in Holland where the only treatment most people believe in like my doctor is cgt and get wich made me even more sick and even depressed from time to rime

[doubledmedocs]

@tygetje Hello! We are currently making the film, and yes we're talking about XMRV. If you want to share your story, you can join our vimeo community on vimeo.com/groups/whataboutme

[nz804]

@tygetje Hey I have had M.E for just over 1 year now, I was put on a medication that made me throw up for 3 months and they said I had to take it. I came off of the drug and it ruined my immune system thus giving me M.E. I have mild M.E I used to cycle 80 kilometers most days when I was growing up in my teenage years, I miss it.

[StefanRaden1992]

well done. I have CFS for 6 years now and this movie is showing great how all these people have to suffer and the doctors and other people just say , this is just your imagination, this pain is not true.

I hope the final film, is as great as the trailer promises.

[doubledmedocs]

Hi all! Thanks a lot for your support as usual! We also need your contribution, so don't hesitate to go visit our Vimeo account a post some videos. You just have to go visit vimeo.com/groups/whataboutme

We're really looking forward to your interactions :)

[xXSambi24Xx]

Really looking forward to watching this. I have had M.E since 2003, I went into remission 4/5 times. I had my last relapse over a year ago. The frustration of the illness is draining in it's self. I know I'm not depressed as I've been there and done that. This is frustration at what I want to do and what my body will let me do. There have been times when I couldn't even turn over in bed and I thought I was dying. It's time people listen to the people who have it, the carers and Dr's!

[gillfordable]

When and where do we find out when this documentary is to be aired?

I would hate to miss it...

[doubledmedocs]

@gillfordable it will be aired in 2012 :)

[isoldecld]

The problem with science is that ALL SCIENCE IS BAD SCIENCE. If something cannot be explained through current scientific thinking, it doesn't exist. I have ME. I have absolutely nothing to do with doctors. I don't see the point. I realise that serenity and allowing myself small joys are the best places to recover from anything; seeing doctors would be contrary to encouraging health, thus. Step away from the docs, the pharmas etc. they are wronger than wrong.

[lizjtoon]

Its all so very true, watch and believe and stop judging me i do try my hardest to do my best but it is never enough for you, so instead you judge and take my children away from me, what else is there for me once my life has been taken by illness and then by human nature, it is so lucky i'm one stubborn little lady, you will not stop me from living and loving to the best of my ability, I sure dont plan on giving up, i will fight my body, i will fight my mind and i will fight you! Never give up!

[alexsantoro]

I have had ME for 5 years. It can be cured through diet.

[Scoobymad18]

I've had this Illness for 12 years now (I'm currently 22) it's completely ruined young life for me. :(

Glad this doc has been made, it's great that word is spreading! :)

[nz804]

@Scoobymad18 Hey I am 22 and I have had it for a whole year now. It sucks because I used to cycle everyday for years and years on end all my life. I remember when I was 14-20 I was cycling 80 kilometers most days and it made me super super fit. I came down with M.E when I was given a medication that I had to take as they said so the doctors and it made me throw up for 3 months and it destroyed my immune system thus giving me M.E.

[synapse131]

@nz804 I was 23 when I got sick and was cycling 25 hours per week and racing at an elite level previous to getting ill and of course tried to "exercise my way out of it" which of course is why I'm now permanently disabled (it's not hard to figure out that exercise is going to worsen the cardiomyopathic features of these illnesses; but hindsight is 20/20.) What medication was it that they gave to you that caused this? Some kind of hormone?  And can you tell what it was for? Thanks, K.

[synapse131]

@nz804 What medication, if you don't mind me asking?  FYI, I was a 20-25 hour per week mountain bike racer in Alaska when I got sick. Same story when it comes to being athletic. I still dream of going skiing.

[michele3d]

So glad you are doing this. Everyone, it might be YOU!

[BondGirl070]

YES, YES, YES!!! This information needs to get out there to the public. I should think that doctors would be embarrased when the patient knows more about M.E. than them. I've known doctors here in Canada that didn't have a clue what M.E. was. BUT, when you mention fatgue in your long list of symptoms they pipe up and say, "Oh, ya that's CFS," and roll it off the cuff as though it's nothing important. GOOD GRIEF !! Doctors pay attention and get educated !

[justinreilly1]

You better believe it's real. I've had ME for 7 years. I was an ivy-league educated lawyer and it has destroyed my life. The studies show it is more disabling than AIDS (I wouldn't believe it if I didn't live it everyday). Thank you so much to the producers- this is exactly what we need!

[ironbith]

TY!

[ironbith]

yes this IS REAL! I have it and have had it for 10 yrs.

[doubledmedocs]

@ironbith We hope to represent you and thousands of others, we aim to make this count.

[MsJude67]

Suggested Music Gary Numan M.E My daughter has ME and says it fits perfectly

And me i eat dust - we are so run down- I call it my death- but I'll only fade away - and I hate to fade alone- now its only M.E. - We were so sure- We were so wrong- now theres no one left to see- theres no one left to die- theres only M.E - Why should I care- Why should I try- Oh no/oh no - I turned off the pain- Like I turned off you all - theres only M.E

Not written about the illness But fits well!

[traumaqueen45]

I am so thankful that this documentary is coming out. I have suffered from ME for over 10 years now and it is the worst thing that has ever happened to me. I am still battling for treatment. Even though there is no cure, I should be able to receive proper treatment. I have been called "off in the head" and told there was nothing wrong with me. Far worse than living with the symptoms is looking into the faces of the medical profession and them not be aware of this condition.

[go1315]

Really looking forward for this...

[doubledmedocs]

@go1315 Thank you doing our very best to get it to you and the world population.

[pid0vs0you]

is this for real? i mean if it was serious then surely everyone would know by now and it would be visible? u know like swine flu. if the doctors are familiar with this situation or even jus a few doctors, they are still people! so from them and other, it will spread around the news like a virus and the media will clock on it and it will be everywere! so im confused...can someone please explain to me whats this really?

[Bluespirit76]

@pid0vs0you Yes it is for real. The fact you don't know about it is part of the problem, it's not being publicised enough. I didn't know that there were more people with M.E. than M.S. though! Why isn't the government doing more??

[doubledmedocs]

@pid0vs0you This is very real, believe me you will be convinced when the film is released, there will be no stone unturned.

[go1315]

@pid0vs0you is all about money, it is cheaper to prescribe antidepresants than to pay disability subsidies...

[elenite396]

@pid0vs0you - Yes, precisely.

Theres no such thing as medical cover-ups and corruption.

Go back to sleep. We'e all living longer, and never been healthier, right.

[doubledmedocs]

Thank you please keep up the support and spread the word.

[vlal28]

Can't wait till it is released.

[doubledmedocs]

@vlal28 Appreciate your support, please spread the word.

[vestaventures]

About time to have a film on this dreadful illness!