CFS/ME CDC "Missing My Life"

[KnightofZeroME]

Those sufferers, caregivers & friends, with Facebook!--ChaseGiving is giving donating money to your favorite charity (up to $500,000).

Search the "Chase Community Giving App" & "Chase Community ['Community Page]" hit "like", and vote for your favorites, including:

***Whittemore Peterson Insitute***

(Biomedical research into M.E.; setting up a clinic & found XMRV/MLV in M.E.);

***American Blue Ribbon Awareness for Myalgic Encephalomyelitis***

***CFIDS Assoc.****

& many others.

[gsgrl2000]

goto my ______ dot com slash gsgrl 2000 for mor info. about ME/CFS

[TashaRichardsonFan1]

Is there a cure for this disorder?

[ThePierre420]

watching this video really hits the nail on the head. i've had cfs for the past 4 years, i'm determined to get my life back.... some days are better than others, but i try my hardest to keep a positive mental attitude, which i'm sure is half the battle.

stay strong people. x

[presouz]

I finally got on SSD for my CFS!! I suffered for years as well, fighting to get through a day and then fighting to get through a night, this is no way to live, sadly its all I know. I wish I had help, I cant even clean my house for years only put dishes in the dishwasher or put in a load of laundry even then that take huge effort! HELP US DEAR LORD!! Give us your grace!!

[DrFrankyDolan]

I have had CFS for over half of my life, and have become housebound from it now. I will not stop fighting for help, and for hope, for ALL of us! Please remember that you are not alone. We are in this together, my beautiful friends! ...My body is weak, but my spirit is not!

Day of Visibility June 6:

Our voices will come together as one harmonious chorus across the globe, rising above the ashes of our suffering and shake the ground below us. We will be heard. ...We will be seen!

~Dr Franky Dolan

[robster604]

i feel her pain

[Ashapa1]

And another thing .Now that i'm finally cured , I've been realizing the long, bumping and harsh journey that i've passed to regain my life back. This horrible disease empty your soul from any drop of life energy , so you become a zombie. In order to recover , I'd needed to learn to do ANYTHING from zero , literally ! Like a baby who learn to walk, speak, eat, etc. , I had to learn to do every simple thing !

Please , I beg any relative, or doctor : HELP THESE POOR SOULS !!!!!

[Ashapa1]

Let everyone know : THIS DISEASE IS THE WORST DISEASE THAT EXISTS !!!!

I know , I've been through this hell for 7 eternal years !

[LordofAnnoyence]

Education can be relearned

Fitness can be restored

Patterns can be established

But life is never the same.

[hopefulhillary]

love this, thank you CDC for doing SOMETHING.

[youaremydisillusion]

@hopefulhillary They never run this add, I don't think accurately describes in detail quite what the illness is actually like, I know it's a short add... At least they could run it every once in awhile.

[bodieangels]

This was the 30sec commercial the CDC was forced to do after we caught them using OUR Research monies on another illness.. This commercial does NOT show 1/8th of the symptoms we have AND the JOKE at the End.. OMG...

They are NOT educating the Dr's so HOW in the heck are you suppose to go get Diagnosed? and hence there is NO Treatment..except... maybe you are depressed so take some BIG Pharma pill and go away... This sucks like the CDC Research has for 25 years. Write the President NOW !!!

[faeridream]

Ladyatomic, I feel 100% the same way you do! Jealous is the perfect description; It never occurred to me before but that's exactly what I feel - I see others living happy lives, or at the very least FUNCTIONAL ones, and I think "why not me?". It makes me so bitter - ANGRY - that they can live their entire lives without ever having to deal with the issues that I have to face every second of every day. Does that make me a bad person?

[JuniorandViktoria]

Wow...that is me all over. I hope more people start to understand it...I'm thankkful the CDC recognizes it too.

[ladyatomic]

This made me cry as it is spot on. I have M.E. and i am so lonely and jealous of everyone continuing with their lifes around and without me

[pencilpauli]

@ladyatomic

Sorry you feel that way

Try to be pleased for them if you can. Don't mean that to sound heartless but a shift of perspective may help a little.

Take care of yourself and I wish you many good days.

[EutuveX]

@pencilpauli

a shift of what... ? can't you people understand .... ? we are hit by a never ending tsunami.... second after second...no time for "shifting "...

[pencilpauli]

@EutuveX

People like who? ME suffers like me you mean?

[EutuveX]

@pencilpauli

Dear, sorry for the misunderstanding.... your " shift of perspective " sounded so " it's all in your head.... " as if WE ,the sufferers could DO anything to change or improve our condition...

Sorry again...

You ME ? Myself : CFS and ME ( 15 out of 18 tender points )... When the symptoms started ( 1984 ) my life was gone. Today, I just wonder why haven't I ended it yet...( this comment deserves no reply..so, be the best you can manage )...

[pencilpauli]

@EutuveX

No problem

Had to backtrack to see why I said that and tbh I should have worded the statement more carefully but tiredness etc

I only meant that one needs to try not to feel negatively when seeing others getting on with things.

I understand why people do feel jealous, because I do sometimes too. But ultimately it only leads towards depression if I am not careful, and I try hard not to go there as it is also a horrible place to be.

Guess there are quite a few of us in that boat.

[EutuveX]

@pencilpauli

Sorry, "shifting perspective " sounded like taking some actions on a positive way... like my psychiatrist would suggest.... I "shifted " way back ( 1984 ....from one week to the next, my life had changed...and I had no idea how worse it would get with time... sorry again...

[wizardscar]

We've just started a project trying to raise some awareness for M.E.

It's up on our channel - it'd be great if you could go and have a watch and subscribe and spread the word.

x

[freedomfromme]

Thank you for this video - please take a look at our channel as we have many specialised CFS videos

[Cissy2cute]

This is a quote I came across from someone with CFS/ME. Going on a vacation? Impossible dream now--just getting away from these 4 walls is a victory of sorts:

"Now I Dream I Am Traveling. My Destination is Never Specific--it is simply "Away."

[os100594]

I'm British with me and most doctors let alone people know what it is, is it like that in the us

[RubyMiami]

os100594, no, in the U.S. people do not have a clue about this. They have never heard of M.E. at all. We do not call it that. We call it 'chronic fatigue.' It used to be called 'yuppie flu.' Since most people get over flu within a week at most we are called lazy, crazy, or malingerers. I have known people with AIDS and who went through chemo, at their very worst days, that is what it's like many many days or even years for CFS/ME yet we are not believed. People say "you look fine" etc. So, no.

[os100594]

@RubyMiami

Yeah it's the same here, no one knows or bothers to learn further than why I'm not in school or when I'll be back.

I had one GP at my local surgery who toldme to suck it up and fight through it.

It ruins lives, for the people who have it and their familes.

It's not even uncommon I know people who have it,

there are 250000 people here with it and over a million in the US.

[pencilpauli]

@os100594

fight through it?

sheesh

It isn't always good in the UK either. I know of a teenager whose school offered no support. It's worst for the youngsters that have ME imho

I have had chance to do some things but the kids are really robbed of their youth.

[luminescentfeeling]

The CDC can make this as an advertising campaign for CFS marketing, but where is the research?

One of the most mighty speakers I have ever seen on ME is the American author, Hillary Johnson. Note, she talks about ME, and not CFS - which using CDC criteria includes any long term condition causing 'fatigue'.

Google her excellent book Osler's Web. She does America proud, unlike the CDC who do nothing.

Our hope is with Scientists, not some government sellers of CBT/GE/Pacing/Anti Depressants.

[GBCTwo]

So what's the cure then?

[faris2k6]

u can see proper cfs doctors they dont just do blood tests they actually check parts like the thyroid.

[RubyMiami]

faris2k6 - there are no 'proper cfs doctors.' If you can find some, make a list. You will do a lot of people a lot of good.

[RubyMiami]

GBCTwo - there IS no cure. There is not even any treatment. There are various tests but most doctors have not heard of them. Many are not even interested to learn about CFS (that's what we call it in the U.S.), since they do not believe it exists. MS used to be called a woman's hysteric illness too; that's where the thinking is among most doctors about CFS as well. It isn't all in my head. I am a strong person. You have to be to endure this. I'm not crazy. I am ILL and have no help or treatment.

[GBCTwo]

Yes I know, Ruby. I can't remember what faris2k6's comment was that I replied to but they have since removed it.

[luminescentfeeling]

Tragically in 2009, the CDC have announced they are going to have a '5 Year Plan' to research FATIGUE.

This means in 2014 people destroyed by ME/CFIDS will still be bed-ridden and in their homes.

Very dissapointed with the CDC. America is a great country, but the CDC have betrayed the American people, yet again.

[Cissy2cute]

The word "fatigue" doesn't even begin to describe the feeling. It's more like your life force has been drained out of your body.

I went to visit relatives yesterday and I will be paying for it the rest of this week :(

[RubyMiami]

Cissy sorry you have this, I have it as well. You are right, people taking chemo or in the worst days of AIDS describe something close to this, no two people or illnesses are alike, but all I can describe it like to those who don't have it is, it is like being a walking dead person. But you are watching life all around you...There needs to be research and a cure, like, yesterday.

[ajj66]

yeah-thats how it is a walking dead person-or running on a flat battery-research and a cure,yesterday-deffoxx

[kostyshankles]

I tried to work with cfs, and even showed this video to my effing bitch of a supervisor, but she brushed it off like the cold hearted witch she is.

[Slazzy]

More than 110 million people in the world suffer from CFS. O_O

Indescribable.

[Slazzy]

its impossible for me to even get up in the morning... not to say LIVE!

[Claggy]

This PSA definitely gets the message across. It made me cry, that's for sure.

[GBCTwo]

CFS, IMHO, is used as a dumping ground for difficult to diagnose people. There needs to be a shift away from this (tighter diagnostic criteria is essential) and a reduction in the mental health influence on research into this diagnosis. Also from a personal point of view, I've found a number of PWMEs and M.E. charities unhelpful and uncooperative in regards to campaigning. Not all, of course, but enough to make things tougher.

[70BETTYBLUE]

I´ve got too CFS.....

In summer is worst....

greetings from Spain..

[riteasrain]

I've had CFS since 1985. Help out there? I don't think so, but I've faved this anyway because people need to see that CFS robs you of E-V-E-R-Y-T-H-I-N-G. You can read my story on hillies hypen imagenation.

[jorgepeterbarton]

be careful with help, though. I've had ME/cfs since 14, and was referred to therapy where they spent a lot of time convincing me that i had social problems, and dragged a lot up which never bothered me before then. and sent my mind into complete confusion for a while. i look back and its ridiculous. the symptoms, and what triggered them and when, could have not been linked to anything psychiatric. the only depression i had was because i was a teenager that was stuck inside in physical pain.

[Carrigon]

This video implies there is help to be had. I've been housebound with this for eighteen years and I have yet to see any effective treatment for it.  I haven't seen any real help at all. I wish there was.

[Cissy2cute]

Perhaps the help is the medication Provigal (sp.). It helps some, but not all.

I have basically lost my life. Waking up (already tired as though I hadn't slept at all), I have about a two hour window where I can accomplish anything. After that, my day is done. Back to bed, sleeping for hours, and waking up as tired as before.

Hell is losing your life as you once lived and loved it. "Fatigue" is really the wrong word. There is none to describe the total drain of body and soul caused by CF

[dalerobertson12345]

provigal is no good for cfs it only increase oxidative stress which leads to free radical damage.

[Cissy2cute]

I have my doubts about Provigal as well. So many drugs come at such a price...

[SAMMYBABYLOVE]

Hello! im a 23 year old woman from the u.k, ive had m.e since i was 13...it fuc**ng sucks in a big way, i was house bound for a year! ive had to struggle for so long, but im now at uni, next year im going to be rasing awareness and going on a world wide campaign so get behind me in you have c.f.s...ill keep you posted!! please e.mail a responce to this if you have questions!! CFS/ME is real its not in your mind! x

[antares4141]

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. I know I am not the only one with this condition. PLEASE TRY IT AND CONFIRM IT FOR YOURSELF WHAT YOU ARE UP AGAINST!

[RubyMiami]

antares, it should not surprise you that people with a compromised immune system will be made ill by mold. Many of us are also chemically sensitive. But that is not the CAUSE of this. It is a very real illness all its own...Anyone who's ill would be made worse by mold. Do you see a lot of mold in hospitals?? No they are kept clean hopefully. Please, don't add to people's ignorance by giving the impression that we are just sneezing and sick from mold spores. Otherwise, yes keep a clean house.

[koalastephanie]

Sad:( One of my best friend online have it. And he miss his life.:(

[1jobrofan911smg]

my friends mom has that :(

[mcclurebaker]

Sums me up completely!

[wannaseetheworld]

My gosh, that really hits hard.  I just burst into tears..

I hate this illness more than words could ever say.

[penseur4444]

Same here.  I don't cry often, but this quick little commercial left me sobbing.

[youaremydisillusion]

@wannaseetheworld They never run this add anyway.

[stillwaterguy04]

Does anyone else with CFS worry about going to relatives' funerals? I know the day is coming, but I just don't think it would be in my best interest to go. I can't wear dress clothes because I am so hot all the time that I would be soaked with sweat. Being around too many people is very unpleasant and exacerbates my symptoms. I don't enjoy seeing distant family members and being made to feel like a loser because I'm not working. I expect flack from family members for not going. Pls advise

[Macmador]

Hello. Yes, I dread the time when my mum and dad pass away because I'm left to handle the funeral arrangements and if I am - god forbid - just as ill, I can't manage it. However! Any relative who cared about me and knew how sick I am would never expect me to suffer unduly on their 'behalf'. Still, to not properly be conscious at a loved one's funeral is disturbing - other attendees would think I was on drink or drugs :)

[CaptchaU]

A general comment, not to anyone specific now. If you watch the documentary "I Remember Me", it goes into how the CDC has ignored more than one cluster outbreak of this illness...going all the way back to the 1960s. There are women who battled this illness for decades, in that documentary. The most important thing is if someone says they have CFS it is a serious crippling illness (not as much in each person, just like polio killed some, crippled some and left some in iron lungs. Others were ok.)

[CaptchaU]

This only lends more to the confusion - most people with CFS cannot get dressed daily and go to an office to work or throw a birthday party! And it isn't just fatigue and aching muscles. Most people will watch this ad and think "big deal I ache when I wake up too".

This illness is more like polio - some get better some don't...most manage it all their life...And most spend their life in bed.

[mywingsareyours]

Only 25% of people with CFS are totally bedridden.

[CaptchaU]

That's not the point...

There are a LOT of people with this who no one believes is sick. This ad doesn't help as far as that goes. A lot of people have aches and fatigue. You misunderstood my post. I know how most people will react to this ad, they won't GET IT. That's my opinion, and you have yours.

[mywingsareyours]

As one of those people who have this disease.. And also a person who nobody believes is really ill, I understand your point all too well. And I didn't state any opinion, I just stated a known fact.

And actually, studies are showing it might be another form of polio.

[CaptchaU]

It isn't a fact which is known to me but in any case it was beside the point I was making. I just don't think this ad is that great. You see this level of discomfort in the actor in an ad for aspirin. Or PMS relief. That is all I'm saying and I stick by that opinion.

Which studies are those? Because I have wondered if perhaps it's a reactivation of the polio vaccine many of us received as a baby. But who knows what this is...no one's really studying it. I'm sure you will disagree with me LOL

[CaptchaU]

I still say if you have active CFS you are in bed. A lot of people are also diagnosed with CFS when they have some other retrovirus which is not as crippling and which goes away. Anyhow do we need to argue since we are in the same boat in a way. I see by your subscriptions you are probably very young. Try being in bed for years or having this 20 yrs and get back to me on how not serious it is.

[mywingsareyours]

Once again, I wasn't arguing.. I agree with you. I was just telling you what I knew. I have had CFS for over 7 years now. I usually have to coax myself through stupid things like taking a shower or some days even just brushing my teeth or hair. I know how crippling it can me, and how people look at you as if you are not really ill. It is very painful. As for the studies, I will PM info to you. And again, I never intended to argue.

[CaptchaU]

OK. I'm sorry then. I'm used to being minimised and disagreed with on this. My thing against statistics is, where do they come from? I'm not part of any study group and a lot of others aren't...so right there it seems to indicate they don't count everyone. The CDC is known for minimising or ignoring this illness.

[luminescentfeeling]

This advert would never be shown on British television. Well done USA for getting this broadcast, even if 'CFS' in America now means 'fatigue' - at least this advert is better than nothing. Still, it should have shown people with tube feeding, paralysis, and having DECADES past by. I guess we will have to wait another 20 years for that, or 40. By which time those of us with neurological ME - will be dead. How convenient......

[loggerbuck]

What is more interesting and convenient for the CDC is that many KNOWLEDGEABLE person think CFIDS and FM and ME are all the same and really are just Chronic Lyme which the CDC does not want to aknowledge. The CDC personel got it wrong and now have to coverup the the whole mess.... allowing untold suffering in the process of course.

[PLAYINGWITHCFS]

check out my video on cfs, btw why is only fibromlyagia commerical on tv?

[RaiseCFSawareness]

This commercial needs to be on TV more often!

To all those with CFS/ME: look into antiviral medications! I've been on them for two months and I think I'm seeing some improvement. Many others with CFS/ME are also seeing improvement.

Google: Montoya, CFS, valcyte, Stanford to learn more.

[ashjones87]

It's shocking that somethign like this isn't air'd in England :@ had me since i was 16, im not 20 and im waiting for my life to start

[PaulBeet]

Many, I feel it safe to say "most", people with CFS are healthy

enough to lead a normal life when in the Carribean area, Thailand or the Philipines (not during the rainy season).

Florida or the Bahamas don't cut it.

[paradisenowlost]

Lots of talk.

PLEASE... SOMEONE.... HELP!

I don't appreciate those who are making money off of those who are ill... selling us snake oil and voodoo. Nutritional supplements do not help very much. Hugging and good friends are better than any medicines.

Please

[katvil]

This is the video I send to everyone to let them know how having this feels. This is one of the best I have seen because this is what it's like. The sameness of every day, with no life. I know I must be alive, although I feel dead. I feel like the cemetery caretaker should be knocking on my door any minute to take me back to my grave, but he never comes. Like why am I here on this earth, supposedly alive, if I'm not meant to live a life? Thank you for this.

[eho51]

This woman is me 20 years ago and still today. Just the way she rubs her hands down her painful thighs before she sits, the same exhausted expression on her drawn, pale face. It needs to be shown here in Australia. There are so many like her, 140,000 sufferers in Australia and no recognition or help.

[rachelcreative]

A powerful message.

[dsicequeen]

great ad! wish we had something similar in aust! :S

[bexhale]

I wish this was aired here in the uk!

[taniaaust1]

It really hurts that we are not believed!

[bexhale]

Totally! That is one of the most devastating parts of ME alongside missing your life.