Great video Carrigon. Fukuda (CDC) CFS diagnoses anyone with unexplained chronic fatigue as having 'CFS'. As we know people then call this ME, when they don't have an infectious/inflammatory disease process. Unless Canadian Criteria CFS or International Consensus Critera ME takes hold, sadly this will never change. The fatigue camp can thus always masquerade as ME patients. Useful for government and the insurance industry and fatal for those with ME denied funding for research and treatments.
I couldnt agree more well done. Ive had M.E for 27 years. We will win in the end the quacks who jump on the band wagon and the sick sychiatrists and doctors who follow the cbt crap will be left by the wayside as more research is done. we must consolidate and keep fighting for M.E classification and better still a clinical test . Its the lack of a test that allows the convenient grouping of all fatigued people into a generic cfs nonsense. Imafraid that we will have to be more visible somehow.
I understand only too well. I was diagnosed with ME?CFS?FIBRO for years. All along it was Lyme Disease. I have borreliosis infection in my central nervous system and it has been there 25 years. The sad thing is I have passed it congenitally to my two daughters. I worry that they are just handing out the diagnosis of ME and not truly checking for live infections whether they be viral or bacterial. No wonder we are all so very sick
The lyme tests are often inaccurate, so even if you are positive, you can read negative or borderline. Then you have cases where someone was bit as a baby or a child and has no memory of the rash, too. In my case, I remember it. They just didn't know about lyme back then.
My youngest daughter kept testing negative with the Uk ELISA tests. Then she tested positive for Bartonella and other co-infections which made no sense if she had not recieved them through a bite or from myself .. as I have these also. I wish they would accept darkfield microscopy as a diagnosis. That way they could look at the ACTUAL blood and SEE the spirochettes.
Lyme and Co's are not just spread by ticks, that's another misconception. You can pick up these infections from black and green flies, some species of spiders, mosquitos in some cases, and all kinds of things from fleas. Basically, if you've ever been bit by anything, you can get stuff.
Great video Carrigon. Fukuda (CDC) CFS diagnoses anyone with unexplained chronic fatigue as having 'CFS'. As we know people then call this ME, when they don't have an infectious/inflammatory disease process. Unless Canadian Criteria CFS or International Consensus Critera ME takes hold, sadly this will never change. The fatigue camp can thus always masquerade as ME patients. Useful for government and the insurance industry and fatal for those with ME denied funding for research and treatments.
thx1138mindlock 2 weeks ago
I couldnt agree more well done. Ive had M.E for 27 years. We will win in the end the quacks who jump on the band wagon and the sick sychiatrists and doctors who follow the cbt crap will be left by the wayside as more research is done. we must consolidate and keep fighting for M.E classification and better still a clinical test . Its the lack of a test that allows the convenient grouping of all fatigued people into a generic cfs nonsense. Imafraid that we will have to be more visible somehow.
Masiyamusic 7 months ago in playlist uk m.e
this video made me cry. everything you said was so true. no life, and no one understands. i'm so sorry for all of us with this debilitating crap.
dawntenor 1 year ago
I understand only too well. I was diagnosed with ME?CFS?FIBRO for years. All along it was Lyme Disease. I have borreliosis infection in my central nervous system and it has been there 25 years. The sad thing is I have passed it congenitally to my two daughters. I worry that they are just handing out the diagnosis of ME and not truly checking for live infections whether they be viral or bacterial. No wonder we are all so very sick
poppymoone 2 years ago 3
The lyme tests are often inaccurate, so even if you are positive, you can read negative or borderline. Then you have cases where someone was bit as a baby or a child and has no memory of the rash, too. In my case, I remember it. They just didn't know about lyme back then.
Carrigon 2 years ago
My youngest daughter kept testing negative with the Uk ELISA tests. Then she tested positive for Bartonella and other co-infections which made no sense if she had not recieved them through a bite or from myself .. as I have these also. I wish they would accept darkfield microscopy as a diagnosis. That way they could look at the ACTUAL blood and SEE the spirochettes.
poppymoone 2 years ago 2
Lyme and Co's are not just spread by ticks, that's another misconception. You can pick up these infections from black and green flies, some species of spiders, mosquitos in some cases, and all kinds of things from fleas. Basically, if you've ever been bit by anything, you can get stuff.
Carrigon 2 years ago
It is so frustrating, and it gets to ya sometimes. The judgements are hard to take, and you feel so alone.
ironbith 2 years ago 2
Just remember, there are millions of us in the world. So every time you feel alone, you really aren't.
Carrigon 2 years ago