I've always wondered about the vaccinations myself. I began with ME in 1972, long before it was known at all here in America. I spent nearly 1 1/2 years unable to fully awaken. I was a military 'brat', I routinely was given the entire series of vaccinations every 3 years from early childhood. I do wonder....Of course, when I developed the fatigue, it was chalked up to 'terminal laziness'.
Sorry, it seems my comments are reading from the bottom up. They all go together.
Just two years ago I was doing great. I'd had a hip replacement which had healed and I was walking well and getting around without a cane. I'm not even certain when it all got even worse all of a sudden. Anyway, I just received so much benefit from this video I had to write and let you know. You have made me accept the truth of what's happening to me. Thank you and Linda and Greg.
I am sorry to hear that you are so ill and are having to deal with a disabling condition. I am pleased that you have found mine and Linda and Greg's videos. If it helps only one person it has been worthwhile. Sometime knowing that you are not alone is a comfort in itself. Youtube helps in that allows people to have a voice and stand together.
. Until recently I had been using a rented wheelchair but I finally returned it because I can get the same chair for about two and a half months of rental price. I still haven't done it. I hate to give in to it all. But I will have to.
I'm so glad I found your video. I've had a CFIDS/ME diagnosis since 1995 and am slowly but surely losing my ability to walk at all. I have gotten to the point of having to use a quad cane all the time even across the bedroom. I can barely get from my living room to my car and then only if it has been pulled up close to the steps. I cannot shop unless there is an electric cart and even then, getting into the store (even from a handicapped space) is almost impossible.
umm I wonder if this site deletes negative comments about vaccination. I made one and then my current disappeared from here, along with it a second post i did about neurologists.
Ive only seen two neurologists due to a CFS/ME. The neurologists asked me what I thought was causing my symptoms so I told them the CFS/ME. After doing all the other neuro tests and finding nothing, they then did the Romberg Test. I didnt even last a second on my feet with that test, immediately went into a collapse, the moment I shut my eyes. The two neurologists missed catching me as I went down that fast onto the floor. Their comment "very impressive!!" "You have atypical CFS"
thanks for this video. I feel fortunate when I hear of stories such as yours that I've never had my children vaccinated esp now that I have CFS/ME myself. This is yet another side effect of vaccination in which parents should know about before given an informed consent to vaccinate.
I have found out since, that the flu vaccination has been link to a neurological condition call Guillian Barre syndrom. Although this is not what I have, the fact that it has been caused neurological problems in the past,makes me very suspicious that it's the cause of my ME. My current neurologist has suggested a possible link. I think that I would have still been vaccinated even if I had known the risks, which are are small. I have asthma, so the risks from catching flu are greater than usual
I'm VERY suspicious of vaccinations now and Greg has also mentioned in one of his videos a possible connection between the Polio vaccine and ME. I think it would also explain things like Gulf War syndrome because so many of the soldiers would have needed several vaccines at the time.
Thank you! You describe the problems of proper diagnosis very well. Have you read the Byron Hyde stuff - I am trying to atm when I am well enough - it is on the hummingbirds guide site and I think is the most useful thing I have found.
thankyou for making this video - it illustrates how complex this illness is - also how diverse - with different starting points and range of symptoms. Please don't be afraid of the wheelchair - my life was transformed by using one - now have battery powered scooter - means my husband and I can enjoy 'walks' together. All the best, Paula
This is an extremely helpful video - I find myself asking how can a profession be so stuck? Obviously the neurologists are not doing the right tests. There is a vast body of medical research which outlines the correct tests. When are they going to start doing them? Thank you so much
Medical science certainly lacks knowledge concerning neurological conditions.I searched the internet trying to find out information on my condition. I found others who had neurological symptoms but no diagnosis. One woman had been ill for over 6 years without any clear diagnosis! My neurologist didn't do the right tests, not surprizing given the lack of training in ME, but he wasn't prepared to leave me with no diagnosis. He didnt call it CFS and recognises ME as a real disease.
Thankyou so much for doing this video. It is so important to share our stories - to be seen and heard. I so identify with your experience with neurologists - it is devastating tobe continually told there is nothing wrong with you when there clearly is something very serious going on. Thank you so much for this - I am sure it will help others.
I've always wondered about the vaccinations myself. I began with ME in 1972, long before it was known at all here in America. I spent nearly 1 1/2 years unable to fully awaken. I was a military 'brat', I routinely was given the entire series of vaccinations every 3 years from early childhood. I do wonder....Of course, when I developed the fatigue, it was chalked up to 'terminal laziness'.
2hotinaz 4 years ago
Sorry, it seems my comments are reading from the bottom up. They all go together.
Just two years ago I was doing great. I'd had a hip replacement which had healed and I was walking well and getting around without a cane. I'm not even certain when it all got even worse all of a sudden. Anyway, I just received so much benefit from this video I had to write and let you know. You have made me accept the truth of what's happening to me. Thank you and Linda and Greg.
taftodd 4 years ago
I am sorry to hear that you are so ill and are having to deal with a disabling condition. I am pleased that you have found mine and Linda and Greg's videos. If it helps only one person it has been worthwhile. Sometime knowing that you are not alone is a comfort in itself. Youtube helps in that allows people to have a voice and stand together.
God Bless, Paul
kaazoom 4 years ago
. Until recently I had been using a rented wheelchair but I finally returned it because I can get the same chair for about two and a half months of rental price. I still haven't done it. I hate to give in to it all. But I will have to.
taftodd 4 years ago
I'm so glad I found your video. I've had a CFIDS/ME diagnosis since 1995 and am slowly but surely losing my ability to walk at all. I have gotten to the point of having to use a quad cane all the time even across the bedroom. I can barely get from my living room to my car and then only if it has been pulled up close to the steps. I cannot shop unless there is an electric cart and even then, getting into the store (even from a handicapped space) is almost impossible.
taftodd 4 years ago
umm I wonder if this site deletes negative comments about vaccination. I made one and then my current disappeared from here, along with it a second post i did about neurologists.
taniaaust1 5 years ago
Ive only seen two neurologists due to a CFS/ME. The neurologists asked me what I thought was causing my symptoms so I told them the CFS/ME. After doing all the other neuro tests and finding nothing, they then did the Romberg Test. I didnt even last a second on my feet with that test, immediately went into a collapse, the moment I shut my eyes. The two neurologists missed catching me as I went down that fast onto the floor. Their comment "very impressive!!" "You have atypical CFS"
taniaaust1 5 years ago
thanks for this video. I feel fortunate when I hear of stories such as yours that I've never had my children vaccinated esp now that I have CFS/ME myself. This is yet another side effect of vaccination in which parents should know about before given an informed consent to vaccinate.
taniaaust1 5 years ago
I have found out since, that the flu vaccination has been link to a neurological condition call Guillian Barre syndrom. Although this is not what I have, the fact that it has been caused neurological problems in the past,makes me very suspicious that it's the cause of my ME. My current neurologist has suggested a possible link. I think that I would have still been vaccinated even if I had known the risks, which are are small. I have asthma, so the risks from catching flu are greater than usual
kaazoom 5 years ago
I'm VERY suspicious of vaccinations now and Greg has also mentioned in one of his videos a possible connection between the Polio vaccine and ME. I think it would also explain things like Gulf War syndrome because so many of the soldiers would have needed several vaccines at the time.
neelubird 5 years ago
Thank you! You describe the problems of proper diagnosis very well. Have you read the Byron Hyde stuff - I am trying to atm when I am well enough - it is on the hummingbirds guide site and I think is the most useful thing I have found.
Joss
deadgirldreaming 5 years ago
thankyou for making this video - it illustrates how complex this illness is - also how diverse - with different starting points and range of symptoms. Please don't be afraid of the wheelchair - my life was transformed by using one - now have battery powered scooter - means my husband and I can enjoy 'walks' together. All the best, Paula
paula2048 5 years ago
This is an extremely helpful video - I find myself asking how can a profession be so stuck? Obviously the neurologists are not doing the right tests. There is a vast body of medical research which outlines the correct tests. When are they going to start doing them? Thank you so much
Greg
gregcrowhurst 5 years ago
Medical science certainly lacks knowledge concerning neurological conditions.I searched the internet trying to find out information on my condition. I found others who had neurological symptoms but no diagnosis. One woman had been ill for over 6 years without any clear diagnosis! My neurologist didn't do the right tests, not surprizing given the lack of training in ME, but he wasn't prepared to leave me with no diagnosis. He didnt call it CFS and recognises ME as a real disease.
kaazoom 5 years ago
Thankyou so much for doing this video. It is so important to share our stories - to be seen and heard. I so identify with your experience with neurologists - it is devastating tobe continually told there is nothing wrong with you when there clearly is something very serious going on. Thank you so much for this - I am sure it will help others.
Bless you
Linda
gregcrowhurst 5 years ago