Am I invisible ?

[SaveMe]

For some reason, no one can respond to my posts. (disabled feature?)
testing 1,2,3


Sacrifice the few to Save the many?

That is exactly how I feel right now--Im pissed. You all are entitled to your own opinions and biases, but no one can tell me that I didn't suffer from an adverse reaction from a vaccine.
That adverse reaction is CFS-ME my friends. This illness (as with FM) affects females to males at a ratio 9:1.

I am a young male--now I suffer from an illness that mostly affects elderly women. I am an anomaly.

 

[shannah]

Peek-A-Boo - I see you!

 

[Orla]

It says here that this is your first post. Perhaps the others never got posted properly?

Edit: OOPS my mistake. The number I was looking at was just saying yours was the first post in this thread not your first post alltogether. Oops. :Retro redface:

 

[SaveMe]

It says here that this is your first post. Perhaps the others never got posted properly?

Interesting Orla,
I sure hope they get posted because I left some very intuitive comments and suggestions for people within the CFS community.

 

[SaveMe]

Peek-A-Boo - I see you!

Thanks Shannah,
I feel relieved now. Do you see any other postings by me?

 

[SaveMe]

SaveMe said: "I am a young male--now I suffer from an illness that mostly affects elderly women. I am not trying to offend anyone, but I am using these stats to show that my case is an anomaly. "

Dear SAVEME,

I am a woman, but definitely not elderly. I am in my late 20's. I became totally disabled at age 20 by ME/CFS after developing Mononucleosis. This illness does not mostly affect elderly women. I have read posts by hundreds of people online who got sick in their teens, 20's and 30's and early 40's and even quite a few who got ill before the age of 16-both boys and girls.. And those are only the people who are posting online. I am sure there are many very ill young people out in the world with this disease. Don't believe the stats put out by the CDC or NIH that this disease mostly affects MIDDLE aged (not elderly) women. It is not true. It probably does affect more women than men, maybe because of hormones I am guessing. Women have constant hormone fluctuations throughout their lives, which could affect viruses/retroviruses.

There was a women I used to talk to online whose 15 year old daughter had ME/CFS and all sorts of infections, bacterial and viral, etc. I've talked to numerous people who became ill in COLLEGE after contracting some virus and just never recovered.

So, your case is NOT an Anomaly at all. There are many people on these boards who can verify that their illness started at a young age. And more and more college students like yourself and being required to recieve more vaccinations (When I was in middle school, every student was required to receive a 2nd MMR vaccine by the school nurse, unless their parents prohibited it, because I guess the disease was havine a resurgence or something). I know some people who had to receive some vaccine before entering college even though they already had them when they were little kids.

I believe the WPI put out a statement, somewhere, that a certain % of people will develope a severe mononucelosis infection around puberty and never recover. There are lots of young people with ME/CFS.

So, the "Stats" are WRONG. And we need to show the truth. This is not an elderly women's disease, or a woman's disease at all. It affects men, women, young adults, teens, and pre-teens (and children?). Stating that this is an elderly women's disease, is almost as bad as stating it is a mental disease, because it stigmatizes (not accusing you, you were only quoting stats you read somewhere, I'm just pointing out how much harmful misinformation there is out there!)

Don't believe the stats put out by the CDC? Dont believe the very institution that has a 5 year initiative to solve cfs? Dont believe the very institution that is investing $5 million dollars on ME-CFS?

 

[SaveMe]

Well SaveMe, if you don't believe them, which you shouldn't, why are you stating this disease mostly affects elderly women? It does not. I am YOUNG. I have ME/CFS. So do many many many others. So.............I don't understand why you are thinking you are an "anomaly"?

I'm just saying, no one should state that ME/CFS is an elderly women's disease. It is just WRONG. I've actually never even read that by the CDC? I think they state women in their 40's are mostly affected (now come on, that is not elderly!)

P.S. May I ask, What all have you been tested for? Have you ruled out all other disease possibilities and disease co-morbities? The Canadian Clinical Consensus for ME/CFS is a must read document. I mean, don't even read anything the CDC or NIH posts about this disease.

and when the CDC discovers the cause and cure, then you will be running to them. To answer your question, I have been tested for EBV and HHV-6 and Ig-e, as well as all of the standard CDC, thyroid, liver, kidney panels, sleep study, mri(s), lyme. May I ask what have you been tested for ? thanks

 

[SaveMe]

WHAT??? "When the CDC discovers a cause and cure, then you will be running to them"

What in the world does that even mean, SaveMe?? Hell yeah, IF they found a cause and cure, I'd be running to them-wouldn't you??

I've been tested for everything you posted, and more.

I'm trying to help-but I don't understand what you are saying. You are kind of sounding rude.

Maybe change your first post on this thread and remove "this disease mostly affects elderly women" as, I have clearly stated, IT DOES NOT.

I'm not much older than you.

I said that to illustrate my point. You have little faith (if any?) in the CDC, and I responded by saying that when they find answers you would put that behind you and seek their help. Just look at this please Centers for Disease Control and Prevention CFS Public Health Research Program 5-year Strategic Plan
(October 2009)http://www.cdc.gov/cfs/programs/cdc_research/2009_5yr_research_plan.html

I dont want to argue with you, but saying that the CDC is lying about statistics is just misleading. They have been conducting a survallance survey over the years to store in their database on the CFS population, and from that data I quote " Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59."

I will not change my post--- please do the research as I have done, girl.

 

[SaveMe]

Dear SaveMe, I have read that link you posted. I think you are taking for granted, that so many people on here have been sick for so LONG. You have only been sick for a short amount of time- and I hope you get better soon and you don't end up someone with ME for 10 or 20 years. I have lost most of my youth to this disease. You are posting things like they are things most people don't already know. We KNOW already, I promise you! Please use the SEARCH ENGINE and find posts that will answer a lot of your questions. You'll find a wealth of knowledge from people who have been ill a long time and know it all!

"They have been conducting a survey over the years to store in their database on the CFS population"

SAVEME, do you even KNOW what people the CDC have been "surveying?" Likely 95% of these people don't have ME. Look at their Georgia CFS Cohort. These people don't have ME! Their stats are WRONG. So why not ignore them, why re-post and spread misinformation?

Do you want to feel like you are an anomaly? I'm saying, YOU ARE NOT. I became ill I am guessing at the same age as you? 20? I have talked to hundreds of people in their
20's who became ill in their teens or 20's. Men and Women.

I do not understand what you are saying at all.............but yeah, IF the CDC found a CURE for ME.......not their delusional disease called "CFS".........hell yeah, I'd be running to get it. But they won't, because they have never researched people with ME. My money is with WPI and the independant researchers.

Have you had any success with anything? I'm very hopeful about Xyrem and LDN. Im 20 and you ?

 

[taniaaust1]

I dont want to argue with you, but saying that the CDC is lying about statistics is just misleading. They have been conducting a survallance survey over the years to store in their database on the CFS population, and from that data I quote " Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59."

I will not change my post--- please do the research as I have done, girl.

I personally think those statistics are probably screwed. Look about this site.... many probably most of us got CFS/ME when far younger.
In real life I know 4 who got CFS/ME. One was a teen, two were in their 20s... the third was in 20s or very early 30s. None in age group in which CDC says it occurs most often.

The CDC has got many of their statistics by doing big random "phone survey" study eg the Georgia one, in which many they diagnosed people with having CFS over the phone which hadnt even gone to their doctors about it. (Those so called CFS people couldnt have been that concerned or debiliated if they havent even bothered going to a doctor over their "tiredness").

The CDC also uses a CFS definition in which many who dont have CFS/ME but rather other illnesses eg chronic depression, end up being diagnosed with CFS. Definations which mistake other illnesses for CFS, phone diagnoses..... I truely wouldnt trust any statistics coming out from the CDC. The CDC has always been biased with what info it gets out there about CFS.... if you research the history around CDC and this illness, you will see that.

 

[SaveMe]

I personally think those statistics are probably screwed. Look about this site.... many probably most of us got CFS/ME when far younger.
The CDC has got many of their statistics by doing big random "phone survey" study eg the Georgia one, in which many they diagnosed people with having CFS over the phone which hadnt even gone to their doctors about it. (Those people couldnt have been that concerned or debiliated if they havent even bothered going to a doctor over their "tiredness").

The CDC also uses a CFS definition in which many who dont have CFS/ME but rather other illnesses eg chronic depression, end up being diagnosed with CFS. Definations which mistake other illnesses for CFS, phone diagnoses..... I truely wouldnt trust any statistics coming out from the CDC.

taniaaust,
I appreciate your comment, but I see you live in Australia, so you might have baises about our govt. that are outside of the realm of CFS-ME. I understand. However, this agency is doing more than http://www.mecfs.org.au/

In addition, people with depression dont have abnormalities in immune response--cytokines, nk cells. Im sure the CDC caught onto this by now. They have an entire dept dedicated for ME CFS. All I read now is people smashing the CDC, because who else is there to blame? You know? They can only do so much. Pretty soon CDC reps will see the nasty comments about them on here, and it will have a negative impact on research or funding--you watch. So lets respect them and encourage further collaboration and research.

 

[taniaaust1]

This illness (as with FM) affects females to males at a ratio 9:1.

Where on earth did you get that figure from as its not as bad as that thou women do get it more. Please provide referance for that ratio
.......

and yeah, I certainly do have bias over your government as far as CDC is concerned as some naive doctors over here, do look at the CDC info on this illness not realising their poor definition and poor studies, rather then going with what our CFS societies over here push and the Canadian consensus definition we want to see offical here. My bias towards the CDC is due to a good reason and due to much research.

However, this agency is doing more than http://www.mecfs.org.au/

What good exactly has the CDC done??? I can think of so much bad from misuse of funds which were meant to be for CFS/ME to many other things.

 

[SaveMe]

Oh I forgot to add in my above post, WPI may still have that questionaire on their website- I don't know if they are still doing research testing randomly- but one of the question on there was, Did you ever have an adverse reaction to a vaccination? If you haven't filled it out, I'd do so.....maybe you'll get called to participate in research.

thanks the moon is blue,
you have been very helpful and kind. I really appreciate that. I couldnt find that survey on http://www.wpinstitute.org/ though. will you give ldn another try? were you doing 3.5 mg?

 

[SaveMe]

Where on earth did you get that figure from as its not as bad as that thou women do get it more. Please provide referance for that ratio
.......

and yeah, I certainly do have bias over your government as far as CDC is concerned as some naive doctors over here, do look at the CDC info on this illness not realising their poor definition and poor studies, rather then going with what our CFS societies over here push and the Canadian consensus definition we want to see offical here. My bias towards the CDC is due to a good reason and due to much research.



What good exactly has the CDC done??? I can think of so much bad from misuse of funds which were meant to be for CFS/ME to many other things.

First my statistic 9:1 Results from a physician-based surveillance system in four US cities 30 enabled prevalence to be estimated for different ethnic groups (whites and blacks), and demonstrated the impact of different case definitions on prevalence. In the group of patients defined according to the CDC definition, the overall prevalence was 59 per 100,000 population, whereas in a group with a less restrictive definition the prevalence rate was 91 http://webcache.googleusercontent.c...d=1&hl=en&ct=clnk&gl=us&source=www.google.com

Next, what has the CDC done? ?
Just look at the some 5K publications!! These have all been funded by NIH/CDC....even WPI is funded by the US Govt.

More credit is due here man.

 

[taniaaust1]

Don't believe the stats put out by the CDC? Dont believe the very institution that has a 5 year initiative to solve cfs? Dont believe the very institution that is investing $5 billion dollars on ME-CFS?

The CDC has been choosing to try to silence CFS since the 1980s. Please get and read Hilary Johnsons book on the history of our illness and all the goings on including the things the CDC has really done. sorry i cant remember right now what it is called.."Olslan's Web" or something.. someone else would be able to tell you.

(Ive had CFS since my mid 20s.. almost 14 years now... please research more this illness)

 

[SaveMe]

Hmm, I can't find it right now either. I think they had so many people fill it out they were bombarded. I know they need MUCH more money to even continue their random XMRV testing. I only heard of a few people on the east coast who got called to give blood. They REALLY need $$$$. (You can still get tested yourself through VIPdX though)

No, LDN was really bad for me. I was only on 1.5 mg, then lowered to like below 1 mg. I think 3.5 may have killed me! If you do try it, start at a low dose....maybe .5

Oh thanks!
I was about to ask for 3.5mg too. I heard it has virtually no side effects and is a miracle drug for so many. Have you been to any cfs- me specialists. Like the big names?

 

[SilverbladeTE]

1) your figures are wrong, more like 1:3 male/female
women get more autoimmune issues due to more effective immune system which can alas, bite them back :/
and many men do not report such issues from fear/machismo etc

2) I was built like a brick sh*thouse, used to bench press my pals for a laugh etc
Definately male, definately young(ish) at 26 or so, still got me, as well.

3) As folk say go read OSLER'S WEB buy a copy from Amazon, and also websites like "A Hummingbirds Guide", to find out how we've been screwed over.

4) Realize we are lied to day in day our by our controlled, manipulative, ignorant media.

5) There are 5 year old kids with ME/CFS !!!

 

[TheMoonIsBlue]

Oh thanks!
I was about to ask for 3.5mg too. I heard it has virtually no side effects and is a miracle drug for so many. Have you been to any cfs- me specialists. Like the big names?

LDN is worth a try- MAY be a miracle drug for some-maybe even YOU- but it does have side effects and intolerable ones for some people! I couldn't sleep, but felt like I'd taken a horse tranq., just sat there feeling poisoned, my menstrual cycles went wacky (won't be an issue for you obviously), it was bad. I would defininitely start at .5 or 1 mg.

SilverbladeTE- You say it like it is!

Yes, Read Osler's Web......you can buy it on Amazon, or maybe your library has it.

 

[SaveMe]

1) your figures are wrong, more like 1:3 male/female
women get more autoimmune issues due to more effective immune system which can alas, bite them back :/
and many men do not report such issues from fear/machismo etc

2) I was built like a brick sh*thouse, used to bench press my pals for a laugh etc
Definately male, definately young(ish) at 26 or so, still got me, as well.

3) As folk say go read OSLER'S WEB buy a copy from Amazon, and also websites like "A Hummingbirds Guide", to find out how we've been screwed over.

4) Realize we are lied to day in day our by our controlled, manipulative, ignorant media.

5) There are 5 year old kids with ME/CFS !!!

they are not my figures. this stat was taken from a reputable source.
So you benched 150 lbs? (avg buddy)
what do you speculate threw you under the bus, so to speak?

 

[SaveMe]

LDN is worth a try- MAY be a miracle drug for some-maybe even YOU- but it does have side effects and intolerable ones for some people! I couldn't sleep, but felt like I'd taken a horse tranq., just sat there feeling poisoned, my menstrual cycles went wacky (won't be an issue for you obviously), it was bad. I would defininitely start at .5 or 1 mg.

SilverbladeTE- You say it like it is!

Yes, Read Osler's Web......you can buy it on Amazon, or maybe your library has it.

I really wish I could help people with this illness, but to do so, I would need to be helped first, if you know what I mean. My latest/ most bothersome complaint is this dizziness. Im afraid at any min. im going to faint. To be brutally honest, I dont know how much longer i can take this.