Chronic Fatigue Syndrome - CHANGE THE NAME (ME/CFS/CFIDS)
CFS is a multi-system disease which causes extreme fatigue, muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems. According to the CDC, studies show that disability in CFIDS patients is comparable to multiple sclerosis, AIDS, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, and chronic obstructive pulmonary disease. Yet, studies have shown that patients diagnosed with “Chronic Fatigue Syndrome” are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. Thus, the name CFS not only affects the quality of treatment patients receive, but the amount of money committed to research! PWCs deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care! Spread the message — CFS: Change the Name!
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July 3rd, 2009 at 9:58 am
Yeah that sort of …
Yeah that sort of thing always ed me off too…
July 3rd, 2009 at 9:58 am
I have begun …
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.”
July 3rd, 2009 at 9:58 am
This is the Best! …
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.
July 3rd, 2009 at 9:58 am
Watching this video …
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.
July 3rd, 2009 at 9:58 am
Walmart has a 9×7 …
Walmart has a 9×7 dome shaped tent for $37 it’s made of nylon (low voc), don’t need stakes, the poles will support if you set it up in your bedroom. Put a hepa filter in it and don’t come out without a respirator made for mold abatement $35 home depot. Do this for2weeks, I strongly believe many will see a huge drop in symptoms. if only everyone who suffered were on the same page with their symptoms and the cause the pressure would be too great for authorities to write it off as psychological
July 3rd, 2009 at 9:58 am
This is beautifully …
This is beautifully done. Thanks for putting this out there. Best wishes for you and your health.
July 3rd, 2009 at 9:58 am
Yeah I always say I …
Yeah I always say I have an auto-immune ociated 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.
July 3rd, 2009 at 9:58 am
no, they’d just …
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.
July 3rd, 2009 at 9:58 am
calling someone …
calling someone with ME a “cfs” patient is like calling a black person a . 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.
July 3rd, 2009 at 9:58 am
We would not need …
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
July 3rd, 2009 at 9:58 am
If more people die …
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.
July 3rd, 2009 at 9:58 am
Grnygnbad
…
Grnygnbad
Excellent. Beautifully done. Thank you for using devices available to you to help people understand this confusing, frustrating illness.
July 3rd, 2009 at 9:58 am
Personally, both …
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.
July 3rd, 2009 at 9:58 am
love your video
love your video
July 3rd, 2009 at 9:58 am
My specialist is on …
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!”
July 3rd, 2009 at 9:58 am
Thank you, it was …
Thank you, it was beautifully done.
July 3rd, 2009 at 9:58 am
I like the music …
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.
July 3rd, 2009 at 9:58 am
Hi CFIDSGurl. …
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.
July 3rd, 2009 at 9:58 am
This is a really …
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 ?
July 3rd, 2009 at 9:58 am
Great video. …
Great video. 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.
July 3rd, 2009 at 9:58 am
Most sufferers of …
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.