Chronic Fatigue Syndrome - CHANGE THE NAME (ME/CFS/CFIDS)

[PamelaViktoria]

When I was at my worst in CF, it felt like the worst flu ever. I have almost recovered and know that I could go back if I don't show disciple. I need to be sleeping at 10pm, and stick to the raw food diet so that my PH doesn't drop down again.

[PamelaViktoria]

I recovered. The highlights: Fluoride sits in your pineal gland, slowing down melatonin production. If you stop sleeping, you'll never recover. I went on the raw food diet. My PH went up to 6.6. (my lowest was 4.5 yikes! At 8 oclock, all our lights are turned off. From 10-12 oclock, your liver does magnificent work. If you have any questions, please ask. I wish someone could have told me all this, instead of experimenting over and over. Also feel free to look at my blog about my experience.

[jorgepeterbarton]

i really understand the MS comparison. I just watched a lot on MS and i'm sitting here trying to figure out what the actual difference in symptoms is.

Because for the years i have been trying to explore possibilities with my GP he doesn't even look at me or listen, at some point he has just asked 'so you're depressed?'.

I don't know if i have any of these other illnesses, no tests to confirm i don't. i went to the doctor suggesting i may have ME -now labelled hypochondriac or in denial.

[maurieer]

What a beautiful program.

I've been suffering CFs for the last twenty years while arguing with the doctors who said that i was suffering from depression.

Now I have very little respect for these doctors.

[Hans021220]

Wonderful video!Well done!

My son is suffering from ME.

[angelahallinan]

well done you explained it very well. Now we need to make more people aware and hopefully this will make people wake up. We don't want sympathy just empathy of our condtion and for it to be treated like other dibilatating syndroms. All we want is for the cdc to put more effort into putting together more research to find better treatments and hopefully a cure. ~angela~

[DadsBlueAngel]

Please remember that we have four major English speaking and in each, disability compensation and what CFS means differ. M.E./CFS are the same disease in America and compensated the same once the person gets a diagnosis. In Britain CFS is compensated under archaic common law which denied alms to drowning victims, claiming they drowned themselves to get alms. Only M.E. is at present compensated as other diseases are. Confusion produced by videos, some on this page, foster neglect and abuse.

[dominoxcakes]

This is how I have been feeling everyday. People just think you're lazy if you tell them you're tired.

[3Sophyyy]

The name Chronic Fatigue Syndrome came from American Insurance companies trying to get out of paying the claims. Before that happened the patients were getting the help they needed. Myalgic Encephalomyletis.

[EutuveX]

@3Sophyyy

help ? what help ? were YOU helped ? cured ? 

[3Sophyyy]

@EutuveX help as in they were being treated with respect by their doctors and being believed. As we all know there IS no cure for M.E, but an understanding doctor, personally, I would class as 'help'

[EutuveX]

@3Sophyyy

fuck understanding..we , The Sicks are the only one who understand this Calvary..

I want research...I want to be a guinea pig... I want to donate my corpse for research ( in Italy, no medical institution wants my carcass..)

I want to end this awful "living as a zombie " ( started in 1984 )

I leave understanding to someone else..I want just to fucking LEAVE for good..!

[jeager22]

i am 14 and this is affecting me i just cant study ill fall asleep

[EutuveX]

@jeager22

I hope your symptoms were caused by a different illness than this Beast... I do hope so..

[shagottaholla]

This is exactly how I feel. I haven't been diagnosed and I've only been sick for 2 months but I can barely go to school and have a different doctors appointment almost everyday. I can't hang out with any of my friends and no one understands how I feel. I have teachers telling me I am not sick and that I pretty much need to man up and deal. I feel like I can't deal anymore, its my senior year in high school and I've always been a straight a student and now I don't even know how I'll graduate.

[EutuveX]

@shagottaholla

I hope your symptoms were caused by a different illness than this Beast... I do hope so..

[gracefulangels]

One day in the not so distant future.....there will be an answer......It may well be a virus lingers in our bodies after extreme stress, it may be the brain makes chemicals after illness....all I know is that I suffer each day, I get worse.........and the injury is called 'psychological' ...My life has been a long story of abuse, and battles, none of my own doing....No wonder my body has said Enough is Enough! Hence the CFS diagnosis.....I am alive, but I don't live.

[freedomfromme]

Thank you for this touching video. Please do take a look at the specialised chronic fatigue syndrome videos on our channel

[luminescentfeeling]

Fantastic video, very touching.

10/10

[Weallmustlivetodie]

Thank you, this video shows the truth of what i and many other people have to go through every day. I do not have it that bad but some times my headaches used to have me screaming in pain, now i have to scream inside, to stop my familys scorn. They don't understand.

[cielle1]

Two years later I feel it is still a huge struggle. I live alone with my 14 years old son, and I use all of my energy to take care of him. I would like my son to have an as normal familysituation as his friends. I kind of search for a balance in life...where I can contribute at my level, or a bit above that step - and at the same time be a successfull mother:))

[pigeonsintheattic]

Anyone who has been diagnosed with CFS should suspect Lyme Disease, and see a lyme disease specialist, get a western blot test or better, and/or be clinically monitored. A lot of your pain, (maybe not all,) can subside with long-term antibiotic treatment.

[imonlysayin]

It really pisses me off when people say "yeh, i think i have that".....try having it for as long as i have, and then say it mate. Doctors always want to do tests on me and come back saying the same thing....I am currently trying a product called Kakadu juice...I shall keep you informed on how it has or hasn't helped me...I can only say it is like living with a schizophrenic body....you never know how your body will feel every day.

[imonlysayin]

I cried to see this video...I am an Aussie and have had CFS for the past 17 years....I lost my career as a telecommunications technicians and my modelling career to this dreaded bloody thing. I did choose to have children though, and it is bloody tough, i can tell you especially as i have a one year old at the moment..My partner still doesn't have a true understanding of it after 15 years together..Now we live apart because i am so fed up of not being heard.

[yelloworangered]

I have begun telling people that I have "Chronic Neuroendocrinimmunologic Disorder Syndrome." They never sayl, "I think I have that, too!" or "I think I have a touch of that" as they did when I called my illness "Chronic Fatigue Syndrome."

[MasterSun2200]

Yeah that sort of thing always pissed me off too...

[jslartist]

This is the Best! please change the number..it is now over four million in the USA alone...you are a talented film maker!

I posted this to FB.

[venom4489]

Watching this video has brought tears to my eyes. Knowing that others know exactly what I feel, in a world of people who dont understand whats wrong with me. My heart breaks for those of you dealing with CFS, my prayers are with you always.

[photojenni]

This is beautifully done. Thanks for putting this out there. Best wishes for you and your health.

[KitKat223344]

Yeah I always say I have an auto-immune associated disorder and suffer from chronic fatigue. (I'm not officially diagnosed, they most likely say its Undifferenciated Mixed Connective Tissue Disorder) Most people don't understand that chronic fatigue syndrome is a serious multi-system illness that is more than being, "tired," or "lazy", or depressed (and not trivializing depression what so ever). But they can't change the name unless they find one that what its actually caused by.

[DrFrankyDolan]

We would not need to change the name if it were to be more understood by the masses. I do agree though that the name is terrible. Fatigue is more of a result of what is happening in the body, not the culprit!

That is why we must continue to honestly raise sincere awareness. I have begun a video series about my CFS experiences and I encourage others to do the same... I wish love and health to us all!

Dr Franky Dolan

[BretagneShrew]

calling someone with ME a "cfs" patient is like calling a black person a nigger. its a demeaning term that has significantly impacted alot of our lives, compounding the problems we already suffer. As the term has resulted in widespread emotional suffering amoungst the patient group its a term that really should be ditched or deamed derogatory.

[wendelaurel68]

If more people die of this illness, or complicationns of, then would the name change. ? Well spoken, My heart goes with you all who suffer.

[BretagneShrew]

no, they'd just deny that they died of this illness like they already do. a woman who lives about an hour away from me died of ME about a month ago. she had it post-ebv infection if I recall.

[Kirra2005]

Grnygnbad

Excellent. Beautifully done. Thank you for using devices available to you to help people understand this confusing, frustrating illness.

[OneGirlArmy]

Personally, both names don't make much sense. The term M.E. stands for medical terms that distinguish something wrong with your brain or spine. CFS also trivializes the illness.

CFIDS is a bit more acceptable of a name because it brings to the table the idea of immunodeficiency or Post Viral Fatigue.

[SANDMANCASTHISSPELL]

love your video

[kylereinhard1]

My specialist is on the committee to change the name! For sure any title with "fatigue" in it trivializes the seriousness of the illness. Nothing bothers me more than when I'm discussing my illness with acquaintances and hear things like "I'm tired every morning when I wake up! Maybe I have it!"

[grdnsmt]

Thank you, it was beautifully done.

[BretagneShrew]

I like the music you've used, what is it called? and yes, CFS is a B.S. name used to mask the severity of disability in people suffering debilitating auto-immune diseases.

[fogggygyrl]

Hi CFIDSGurl. You're so right that we need a name change. No wonder people don't understand with the stupid name it's been given.

[jessa982]

This is a really good video , i am a sufferer of M.E/CFS myself . do you mind me asking what is the name of the song playing called ?

[LymeAwareness]

Great video. Damn right we need to change the name of CFS. CFS trivializes the disease and is demoralizing for patients.

CFS sufferes, don't forget to look into Lyme disease which is almost clinically indistinguishable but has a known casue and can be treated with antibiotics.

[5BlueHornet]

Most sufferers of ME/CFS have been through several treatments with no success and most feel hopeless, like I did.

There's a treatment now that few people know about. This treatment is a CURE. It truly delivers on it's promise. A definite solution.

If you are interested, do a google search for "The Marshall Protocol".

Have a read and make up your own mind. What have you got to lose? If you have any questions feel free to message me, I'll be happy to help.