CFS Patients Address the CDC

Chronic Fatigue Syndrome (CFS) is a serious debilitating neuro immune disease, that is known to affect 4 million Americans, and 17 million people worldwide. CFS has been ignored and dismissed for decades, by both the medical community, and by the government agencies entrusted with our health. Because of the widespread ignorance regarding CFS, patients with this condition are often reduced to psychiatric cases, mis-treated by doctors, and not given the appropriate treatments that they need and deserve.

The October 2009 discovery of the XMRV virus, in the blood of 68 of 101 CFS patients tested by researchers at the Whittemore Peterson Institute, is a revolutionary finding. It is giving many CFS patients hope for better treatments for this devastating disease, and possibly even a cure.

The recent confirmation of XMRV in CFS subjects tested by researchers at the NIH and FDA needs to be taken seriously by the CDC, which has had a history of failing those who are ill with CFS far too predictably, and for far too long.

Category:

Education

Tags:

• CFS
• Whittemore Peterson Institute
• CDC

[all2trueable]

PLEASE SIGN THE PETITION To Disassociate Ourselves From the CAA As Our Advocacy Representative. (Will not let me post the link, so please google it.)

[all2trueable]

bgbyer--I understand how you feel, as I have been through much of the same thing. ME/CFS is seriously underfunded, and patients are suffering miserably due to that lack of funding and research.

To keep up with XMRV news, please go to XMRV Global Action on Facebook.

[WeeLightIntheDark]

Excellent summary of this devastating illness. More national and international attention ABSOLUTELY must be paid to this terrible, infectious neuroimmune

disease, and its connection to a HUMAN RETROVIRUS. Contact your government reps now and tell them you want action for the sake of the nation's health!

[all2trueable]

@WeeLightIntheDark --I absolutely agree that our government reps need to act NOW to bring much needed attention and funding to ME/CFS. Please take the time to call them and tell them your story.

[silverbladeTE]

Why have they covered this up? Possibilities:

1) It's another US bio-weapon accidentally or deliberately released and are desperate to cover up. See Lyme Disease, West Nile Virus, "Plum Island" and understand they were working on non-lethal agents designed to destory crops, incapacitate the working populace, ruin economies, not trigger WW3

2) The insurance companies, see UNUM's court cases, are greedy and evil

3) It's a vaccine contaminant

4) 50% of doctors are ignorant bigots

:(

[all2trueable]

@mommykat100 -- There is no way to post a link to the WORLDWIDE PATIENT ALLIANCE, but if you google it, you will find it. PLEASE do what you can to help or contribute.

[bgbyer]

Excellent! I can't begin to tell you the trauma I have rec'd from the medical system, Social Security (denied 7 times) and the community as a whole. Doctors are completely clueless about this disease yet hold all the power. I heard a report about AIDS funding versus breast cancer. According to the report, breast cancer kills more women than AIDS yet receives just a fraction of funding that AIDS does. Does this make sense to you? I wonder what the comparison of funding of AIDS vs. ME?

[mommykat100]

JOIN NOW; ME/CFS Worldwide Patient Alliance on FB Causes! It's the new name of Our Voice, Our Message, Our Lives...an Ad will be placed in the Washington Post with much of this same message! We are 1000 strong after only 6 weeks...JOIN THE CAUSE...HELP MAKE HISTORY, and please donate only if you can afford it.

[usedtobeperkytina]

PLEASE DONATE NOW TO OUR BIG ME/CFS AWARENESS CAMPAIGN.

Our Voice, Our Message, Our Lives: An Advertisement Campaign on ME/CFS.

Help us create an effective, patient driven, public media campaign.

Donate whatever you can, and please spread the word! Thanks!

[PowerRedBull]

I have this, but I'm not diagnosed...because I'm a 'in the closet' patient...I *know* I will be called crazy, because my sister has it for 15 years now and I've not seen a single doctor take it seriously..calling her "insane" for being so ill......I think the numbers are much higher of people that have this, yet so many are 'misdiagnosed' (not that CFS is a real good diagnose - but you get hte idea)..anyway, great video. thumbs it up everyone, so it will come higher in the youtube ranking!!

[bakfiets32]

Great Clip. Thanks.