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.
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 -- 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.
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!
@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.
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.
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!!
I'm not sure if XMRV is the root of it for everyone, but I hope treatments and information come about through new research. And it's important to let people know how debilitating this illness really is-
Thanks for this! CDC and NIH reverse their course and help people with ME!
Pls note- the testimony by Dr. Loveless to Congress, quoted in Osler's Web, is that ME/CFIDS patients are ON AVERAGE as disabled as people with late-stage AIDS.
CDC have just deleted their old 'CFS' website, and replaced it with a new one that removes any mention of the key symptom of LATENT reaction to exercise, cardiac chest pain, shortness of breath etc. CDC state anyone with XMRV doesn't have CFS despite the WPI finding it in 98% of CFS patients. XMRV is an exogenous infectious retrovirus. All of this type of infection cause neuro immune disease, cancer and immune supression. I wonder how may people have died globally over the last 3 decades?
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
There are approx 250,000 diagnosed with CFS in the UK and 85,000 with MS of which there are 4 types, 2 being the progressive type. These are the ones lucky enough to get a diagnosis although it is uncertian whether they have genuine ME i.e. have neurological and immunological symptoms. This is more than double the MS patients though the prevalenec could be different in the states.
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 10 months ago
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.
all2trueable 11 months ago
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?
bgbyer 11 months ago
@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.
all2trueable 1 year ago
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!
WeeLightIntheDark 1 year ago
@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.
all2trueable 1 year ago
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.
mommykat100 1 year ago
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!
usedtobeperkytina 1 year ago
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!!
PowerRedBull 1 year ago
Great Clip. Thanks.
bakfiets32 1 year ago
Thanks for this-
I'm not sure if XMRV is the root of it for everyone, but I hope treatments and information come about through new research. And it's important to let people know how debilitating this illness really is-
TheJodavidson 1 year ago
Oh my. This is good in so many ways.
steveminne 1 year ago
Thanks for this! CDC and NIH reverse their course and help people with ME!
Pls note- the testimony by Dr. Loveless to Congress, quoted in Osler's Web, is that ME/CFIDS patients are ON AVERAGE as disabled as people with late-stage AIDS.
justinreilly1 1 year ago
CDC have just deleted their old 'CFS' website, and replaced it with a new one that removes any mention of the key symptom of LATENT reaction to exercise, cardiac chest pain, shortness of breath etc. CDC state anyone with XMRV doesn't have CFS despite the WPI finding it in 98% of CFS patients. XMRV is an exogenous infectious retrovirus. All of this type of infection cause neuro immune disease, cancer and immune supression. I wonder how may people have died globally over the last 3 decades?
thx1138mindlock 1 year ago
Excellent!
mariemicheles 1 year ago
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
:(
silverbladeTE 1 year ago 7
v good
jimijamesh 1 year ago
Excellent!
go1315 1 year ago
Excellent - great use of music, too!
athomeinRwanda 1 year ago
There are approx 250,000 diagnosed with CFS in the UK and 85,000 with MS of which there are 4 types, 2 being the progressive type. These are the ones lucky enough to get a diagnosis although it is uncertian whether they have genuine ME i.e. have neurological and immunological symptoms. This is more than double the MS patients though the prevalenec could be different in the states.
HearAndLove 1 year ago
For more information, go to mecfsforums
WildaisyFLA 1 year ago
Well done! It's simple and to the point. Let's hope this is widely viewed.
salchar 1 year ago
Excellent Video
Time for the CDC to tell the truth
edittubev 1 year ago