|
Post by moreattention333 on Aug 15, 2018 14:36:52 GMT
That's exactly what happened to me. I tried to tell my story and ask some questions. They blocked all my messages and "kindly" requested me to go find help somewhere else. In other words, they basically told me "You don't have CFS, and therefore you are not welcome here". Those bastards... This language is not appropriate! They have there scale and range of symptoms which is some how different, yes there are sick people like us there but they don’t bring hiv like virus and conspiracy stuff Patients there are smart and long term sick , they manage to keep there fourm by staying away of what new patients keep thrown here so they don’t look crazy and get medical attention and they barley have some so don’t blame them A lot there are the same but being a cfs patients is better than being crazy with hiv phobia as they referred to Chinese patients Omar do you know the new admin?i didn't see him in old forum.
|
|
|
Post by omar2011 on Aug 15, 2018 14:45:10 GMT
This language is not appropriate! They have there scale and range of symptoms which is some how different, yes there are sick people like us there but they don’t bring hiv like virus and conspiracy stuff Patients there are smart and long term sick , they manage to keep there fourm by staying away of what new patients keep thrown here so they don’t look crazy and get medical attention and they barley have some so don’t blame them A lot there are the same but being a cfs patients is better than being crazy with hiv phobia as they referred to Chinese patients Omar do you know the new admin?i didn't see him in old forum. Me and And another old patient are the admins
|
|
|
Post by moreattention333 on Aug 15, 2018 16:57:04 GMT
Omar do you know the new admin?i didn't see him in old forum. Me and And another old patient are the admins can you please change the web tittle
|
|
|
Post by disucks on Aug 16, 2018 2:43:25 GMT
I’m assuming no one has heard from Mark?
|
|
|
Post by wheretolook on Aug 16, 2018 3:23:05 GMT
My wife just told me right now that she didn't understand why her tounge is white, then she showed me her tounge, just like mine, her tounge is very white and it's looking like oral thrush. I'm so frustrated, we both have the same symptoms, very dry palms- our skin is just peeling, joints pain, abdominal pain, grumbling stomach, weird headces feel like a stabs in the brain, etc. We are both very ill, what should we do? She want a baby but I'm not ready to have a baby, she is pushing me very hard, but I'm so so afraid that this disease will transfer to the baby, so i told her that I am not ready yet. It's now 11 months from the exposure, the symptoms arr chronic and not going anywhere, I have a changes in my toe nails, inflammation of the gums, sensitivity of the scalp, change in the bones of my fingers that looks like Ramutid artrtis. I am so devastated, so scard, what will be in the future, when the doctors will do something?? Just wanted to share it with you guys, thanks for listening, you are the only who can understand the feelings. Hi Lior, Sorry to hear that. In fact, I am ahead of you with same situation but I can tell you things will ease trust me but they will never leave or disappear. A fact that we are infected with something thats going to live with us forever, however your body will adjust to it with time.
|
|
|
Post by wheretolook on Aug 16, 2018 3:25:55 GMT
I don't see the forum active like the old one?? Did the old patients missed this forum hopefully not
|
|
|
Post by Sux on Aug 16, 2018 4:07:26 GMT
Lol how long does it take to change the title (so that we are findable in google)?? Lol come on guys.
Also who is the other admin??? Very strange indeed....
|
|
|
Post by moreattention333 on Aug 16, 2018 5:27:12 GMT
Massage me your email.only we together can do something .make progress
|
|
|
Post by omar2011 on Aug 16, 2018 8:00:09 GMT
Unfortunately I see some stupid comments and questions like who is the other admin!
We are trying to Change the domain name and we did change the main info name in the top of the page as you see
There is a purpose for this page , stick to it
|
|
|
Post by PZ on Aug 17, 2018 2:14:40 GMT
My wife just told me right now that she didn't understand why her tounge is white, then she showed me her tounge, just like mine, her tounge is very white and it's looking like oral thrush. I'm so frustrated, we both have the same symptoms, very dry palms- our skin is just peeling, joints pain, abdominal pain, grumbling stomach, weird headces feel like a stabs in the brain, etc. We are both very ill, what should we do? She want a baby but I'm not ready to have a baby, she is pushing me very hard, but I'm so so afraid that this disease will transfer to the baby, so i told her that I am not ready yet. It's now 11 months from the exposure, the symptoms arr chronic and not going anywhere, I have a changes in my toe nails, inflammation of the gums, sensitivity of the scalp, change in the bones of my fingers that looks like Ramutid artrtis. I am so devastated, so scard, what will be in the future, when the doctors will do something?? Just wanted to share it with you guys, thanks for listening, you are the only who can understand the feelings. Hi Lior, Sorry to hear that. In fact, I am ahead of you with same situation but I can tell you things will ease trust me but they will never leave or disappear. A fact that we are infected with something thats going to live with us forever, however your body will adjust to it with time. Not true. It gets better for a couple of years then it gets gradually worse.
|
|
|
Post by omar2011 on Aug 17, 2018 2:47:53 GMT
Hi Lior, Sorry to hear that. In fact, I am ahead of you with same situation but I can tell you things will ease trust me but they will never leave or disappear. A fact that we are infected with something thats going to live with us forever, however your body will adjust to it with time. Not true. It gets better for a couple of years then it gets gradually worse. Unfortunately thats Is true specially after your 5th or 6th year
|
|
|
Post by wheretolook on Aug 17, 2018 4:11:04 GMT
Not true. It gets better for a couple of years then it gets gradually worse. Unfortunately thats Is true specially after your 5th or 6th year Will see then when I get to the 4th year, worst to come. I believe its true, cuz our body keep fighting this weird pathogen then it will kind of give up. 4 close family members got cancer, its not a co-incidence. Me myself I tested for cancer I do not have it but I am scary I might got it.
|
|
|
Post by ashyam86343 on Aug 17, 2018 5:16:11 GMT
Not true. It gets better for a couple of years then it gets gradually worse. Unfortunately thats Is true specially after your 5th or 6th year Hey Omar. I know you are greater than 5yrs, can you tell me what kind of issues you have now ? I am feeling better now, occassional mouth ulcers last for a week and goes. According to my naturopath if my stomach & stool is well. there is no issues i am also on same opinion. can you elaborate yours.
|
|
|
Post by Cfs or so on Aug 17, 2018 6:04:43 GMT
Omar... how can you know it gets worse? According to your own messages you also have cfs ... how do you know it isn’t your cfs that gets worse?
|
|
|
Post by omar2011 on Aug 17, 2018 8:50:16 GMT
Unfortunately thats Is true specially after your 5th or 6th year Will see then when I get to the 4th year, worst to come. I believe its true, cuz our body keep fighting this weird pathogen then it will kind of give up. 4 close family members got cancer, its not a co-incidence. Me myself I tested for cancer I do not have it but I am scary I might got it. I saw people around me getting cancer , allergies and autoimmune conditions and most if not all do devlop stomach and colon issues ( in my believe the the infection lives there in the biggest part of it ) the main reason is the body response to this infection and that depends on 1) the inflammatory response each person manage 2) the change of the gut microbiota balance which results to change other body fluids microbiota balance too patients show after they are infected 3) the powerful there blood antibodies which can suppress or can’t the infection
|
|