1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Am I invisible ?

Discussion in 'General ME/CFS News' started by SaveMe, Mar 8, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    With the dizziness, look into POTS (postural orthostatic tachycardia syndrome) and make sure you dont have it as one of your CFS symptoms. POTS can be often helped some.
  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    where'd you get that ratio, the Psychs? :p everything I've seen shows a higher incidence amongst women but *NOT* 9:1 at most 3:1
    Go check the OUTBREAKS for good representative male/female and age ratios, NOT the crap the psychs have been spewing for 20+ years
    thing is with those bastards is, if ME is proven to be a lethal, infectious illness, they are *screwed*, maybe wrongful death suits and worse so they keep battering out crap (useless studies, ratios etc) to keep their arse form being exposed and bitten off.
    Called "F U D"
    Fear, Uncertianty, Doubt
    tobacco companies and others used it big time to sew confusion and prevent litigaiton

    Another issue is paternalistic bigotry which is rampant in medicla world at least, with MDs, "Oh it's weak minded pathetic women screwed up because they have a v' and a womb, and are all hormonal!" oh what a lod of bollocks, sigh. Crap I've seen docs do to women/attitudes I'd flatten the shits for if I was well. :(


    bench pressing a person's not as easy as a barbell, and I also said "pals", plural ;) doing two folk is a pain, either have to get them to sit on a strong plank or hold their feet as they hold each other and steady on something. wouldn't recommened it but was fun, hehe
    too many folk do weight training very badly, or at least back then they did, I did it for fitness and joint/over all repetitve strength, ie low/mid weights, lot of long smooth reps, not max weights
    and with bench pressing, since it was mostly solo I sure as hell didn't wanna do ultra-heavy stuff, that's asking for serious injury. wish back then I had the real well made benches/resistance machines they have now!
    doing stupid big weight a few times is no good for ya, neither is jerking/snatching the weight, try telling that ot most youngsters though :/
    takes nearly a year just to build yer tendons/joints up well, that and form are crucial, work on them for a year and you set a good pattern/base :)

    Several things happened one after another, sigh...beloved relative died tragiclaly, then they put poisonous damp proofing down in our house and then I got some horrible flu-like bug...and BAMMO! M.E. :/

    TheMoonIsBLue
    yes I agree, rest 100% at start often makes a HUGE difference on eventual outcomes , from what I've seen
    sigh wish I'd know, useless bloody docs...I tried ploughing on, instead I damn near ploughed myself into the grave :/
  3. SaveMe

    SaveMe *****

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    its funny that you mention that because when i tend to conserve my energy for a few days--like staying in the house all day---> i tend to have less symptoms and more energy!
    However, i dont want to lose muscle tone or not exercise. Its a catch 22. :(

    HOW LONG should i rest 100% for? (From the stories you hear) I appreciate it moon, you have given me the best advice so far!! :)
  4. Merry

    Merry Senior Member

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    Hi, SaveMe.

    It's true that I am an old woman, but I have been ill since I was a teenager. My mother was also ill - possibly from as early as her teens also. Long before I heard of XMRV, I supposed that she had given me a virus. Other family members have autoimmune and neurological problems.

    TheMoonIsBlue has been generous (with limited energy, I'm sure) to give you so much advice. Good advice. Rest is very important. I wish I had not tried to push through my illness when I was younger.

    Please take care.
  5. Mark

    Mark Acting CEO

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    I always find it kind of freaky when yet another person says "oh yeah, you know, I'd kind of noticed that..." just because we all know this really, from a fairly early stage in our illness, just from our own experience...but yet most of us push it to the back of our minds, or ignore it, or doubt it, or try to deny it - often for years and years. And of course it doesn't help that our doctors, society, friends and family who just assume all the normal rules of human health will tell us the exact opposite: you have to try to get going again, you need to exercise to be healthy...etc etc... This is just such a fundamental problem: we are different like that, and people don't believe it - ourselves included!

    It IS a Catch 22 you're exactly right. This is why it's just such a fine line. I don't think it's a good idea to do nothing, you need to keep your body ticking over...but you really need to be ever so gentle. The key thing is to listen to your body - to trust your own instincts, to pay close attention to what works and what doesn't, to learn what your limits are, not to push against them, but to pause and check yourself when you find yourself pushing too hard. Nancy Klimas has suggested "5 minutes on, 5 minutes off" whenever exercising...which as I understand it, means to say mostly: if you do any kind of exercise, say if you walk for 5 minutes, then you need to discipline yourself to sit down and do nothing for a full 5 minutes after walking for 5 minutes...and then carry on. The hardest part to do is sitting doing nothing for 5 minutes...we would all of us rather be exercising properly...so it's a hard discipline to learn for many of us.

    So my answer would be: you have to learn to find your own balance point.

    As I say, you just have to listen to your body and see how it goes. But when you get up and stop resting, still take it easy...don't push too hard...I don't think it's a 100% thing either way but just a gradual, gentle, on/off and a tuning process of not doing too much, but not doing too little either.

    Another way to put it: basically the requirements of the illness itself are that ideally we would never do anything at all. But if we do absolutely nothing, other things will go wrong, like losing muscle tone etc. So we need to do as much as the illness will let us do, but no more than that. And the sicker we are - the more we have pushed ourselves too hard and made ourselves too sick - the less we are able to do without hitting our limits.

    Eastern philosophies are ideally suited to understanding these concepts of balance so I think that's why some people find them so helpful.

    But this is a very tough subject to explain and there are no easy and simple answers...and it's not the whole picture by any means: there's diet and other immune factors to figure out, a whole load of other stuff to deal with...but how you manage your energy and activity levels does seem to be crucial.
  6. Cloud

    Cloud Guest

    Excellent advice! I would likely be well today had I known about this 17 years ago. I had to learn the hard way about the necessity of pacing. Trying to "push through" this illness is like trying to swim in quicksand. The harder you fight, the faster you sink.


    The CDC is not, and never has been studying real ME/CFS. This is not a "womans disease". If ever the CDC finds a cause and cure, that will be wonderful and, I'll be in line with all the rest. But it will not excuse their 25 year history of willful neglect and abuse of people suffering with this disease.

    Indeed, read Oslers Web, and the Canadian Consensus Criteria.
  7. Enid

    Enid Senior Member

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    Never Invisible (well maybe to some around - not me).
  8. sleepy237

    sleepy237 Senior Member

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    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.[/QUOTE]

    Where do you get this idea from ? Not valid. ~Sleepy
  9. SaveMe

    SaveMe *****

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    Thanks Mark for your response. I agree with you about the mentality issue some have. I feel that if I just exercise hard enough and stick with my diet, this thing (CFS-ME) will be taken down once it for all. But its just a false philosophy that I need to abandon.

    It just seems that research is moving so slowly for this illness. I just want to be taken seriously by doctors. I was so frustrated with my PCP for not giving me the credibility. She said Fibromyalgia is real but CFS, ahh thats a little ify right now (very hesitant & no further discussion about it). Basically, from what i gather, she doesnt believe cfs is real and so she has the bias already predetermined, and i cant sway her. "You cant teach an old dog new tricks" applys here as well. And the nearest CFS specialist is hours away (driving) for me. Im exhausted and I have to put up with all of this?

    This illness is the absolute WORSE. every part of my body failing me, hardly anyone can sympathize, I look fine, experimental diagnostics, experimental treatment... I mean this is a living nightmare.
  10. SaveMe

    SaveMe *****

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    Where do you get this idea from ? Not valid. ~Sleepy[/QUOTE]

    Where did I get the idea that CFS affects mostly woman? (and elderly more freq.)
    "Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59" And being 20.... 40 is old to me
    I dont make facts up, I research and I know this to be true. Others have argued on my point, but they most not forget, it is quoted from surveillance studies.
    The counterargument is women are more likely to report symptoms than men --If true, this applys to every known illness out there. DEBUNKED
  11. sleepy237

    sleepy237 Senior Member

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    :eek:okay if 40 is old to you i guess...im approaching my first elderly birthday this year
  12. SOC

    SOC Moderator and Senior Member

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    Where did I get the idea that CFS affects mostly woman? (and elderly more freq.)
    "Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59" And being 20.... 40 is old to me
    I dont make facts up, I research and I know this to be true. Others have argued on my point, but they most not forget, it is quoted from surveillance studies.
    The counterargument is women are more likely to report symptoms than men --If true, this applys to every known illness out there. DEBUNKED[/QUOTE]

    I think people are asking for the source of your information (a reference, for example) and whether that source is reliable.

    There are plenty of people here who have been researching this illness longer than you've been alive, and most of the people here have been sick much longer than you, so have done a lot of reading/research you haven't even begun to dig into. Like it or not, most people here know a lot more about this illness than you do at the moment.

    The CDC is not a reliable source of information on ME/CFS. You don't have to believe us now -- do some serious digging, read the research papers, read the CCC, read the NICE guidelines if you really want to believe in government resources. They you can decide who to believe and who to be more skeptical about.

    Plenty of men get this illness, and many young people. If you listen to people here, you will soon become aware of that fact. My daughter, for example, is younger than you and has had this illness for almost 7 years. She is learning to cope with this illness and so can you. None of us like having ME/CFS and all of us want a cure or better treatment, but until the time comes when that is available, we all have to find ways of coping.
  13. SaveMe

    SaveMe *****

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    I wish you a happy birthday in advance, and hope things start turning around for you. Do you ever keep in touch with Cort? I thought I saw his face in a Me-Cfs video conference but wasnt sure if it was him. I know hes a busy man,
  14. SaveMe

    SaveMe *****

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    happy birthday once more!
  15. Mark

    Mark Acting CEO

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    Where did I get the idea that CFS affects mostly woman? (and elderly more freq.)
    "Women are four times as likely as men to develop CFS. The illness occurs most often in people ages 40 – 59" And being 20.... 40 is old to me
    I dont make facts up, I research and I know this to be true. Others have argued on my point, but they most not forget, it is quoted from surveillance studies.
    The counterargument is women are more likely to report symptoms than men --If true, this applys to every known illness out there. DEBUNKED[/QUOTE]

    That's a very nice debunking of that particular counterargument there, SaveMe.

    However the point about gender distribution really is a contentious and open question. You've mentioned a source that has a ratio of four to one (which would mean 80% female), and I think you're saying that source is the CDC. So keep in mind what so many people here and elsewhere are saying: the CDC, specifically, is just about the least reliable source you can go to for information about the illness we have. You know quite well that what we have is not understood properly and not treated with respect, not believed in accurately by the authorities, so it shouldn't be too hard to extend your personal experience of not being believed or understood, and to be questioning of what the CDC are saying about it.

    And anyway: there is a more likely counterargument that applies, and is almost certain to be a major factor in those statistics that say it's a women's disease, in my opinion. That's the fact that doctors and scientists have had it in their minds for decades that this is mostly a women's disease. So when somebody walks into the surgery with the vague and complex symptoms we have, and they have no tests to use to diagnose it (although the tests do exist, but that's a whole other story...), then one of the factors in the doctor's mind is certain to be gender. If it's a woman, the book says that there's this mostly female 'condition' that it could be, and they are more likely to diagnose ME/CFS. Whereas if it's a man, they will be more sceptical that it's ME/CFS, they will think that's less likely to be the right diagnosis and they'll be more likely to look for other explanations.

    Also, people with ME/CFS quite often have other diagnoses, particularly Multiple Sclerosis and Rheumatoid conditions, and some move back and forth between that diagnosis and a diagnosis of ME/CFS - in either direction. There's quite a lot of overlap with the symptoms. And a lot of us men don't actually get an ME/CFS diagnosis at all (I'm diagnosed MCS, and by my GP as "ideopathic immune disorder"), but when we talk to people online diagnosed with ME/CFS, we discover they have the same or similar symptom patterns. My symptoms, and indeed me myself, we don't show up on any official statistics anywhere - as far as the system is concerned, I literally don't exist - there is nothing registered wrong with me because there's no suitable box to tick. And as one doc told me frankly when I asked him about ME/CFS: "You would have fit the criteria very well a couple of years ago - but trust me, that's a diagnosis you don't want." (!)

    So: what is the real gender ratio? Most of the more reliable stats I've seen suggest something more like 2:1 female to male: 67% female. Personally, I am about 50:50 on my guess as to whether it's really 2:1 or more like 1:1 with a lot of men out there who are undiagnosed or have different diagnoses. If you look at MS, the male:female ratio there is also heavily distorted - the other direction - and it has changed significantly over the last few decades while it's been on the rise, but does that just reflect women becoming more likely to get an MS diagnosis then they used to? I suspect so...

    Also remember there's a history of "hysterical women" attitudes here: there's the old sexist attitudes that float around still, and some people who like to deny it's a real illness look back to 19th century accounts and try to link it to that - but it's all just based on sexist prejudice, I think, which has always been particularly notorious in the medical profession.

    One more point about gender. There's a very plausible theory to explain the male/female balance, which is especially highlighted by what's known about XMRV. Replication of XMRV is encouraged by stress hormones, cortisol, and by sex hormones. That part isn't really in any dispute: in the labs, those chemicals encourage XMRV to replicate much faster. This is one of many reasons why XMRV fits so well as an explanation for everything we know about ME/CFS. We know that exercise makes us worse - XMRV would explain why, because the cortisol etc will cause the XMRV to replicate. And similarly for the alleged relationship with stress making things worse. Most importantly here, women's hormone levels fluctuate regularly of course, so they are unable to avoid regular boosts which would cause XMRV to replicate. So it's quite likely in my opinion that infection rates are similar in men and women, but that the levels and severity of infection, and the severity of illness in general, tend to be higher in women than in men just because of the hormonal factor. And all of that could hold good for other viruses and retroviruses as well, by the way - not just XMRV - so those theories don't depend on XMRV being the cause (though I still think XMRV is by far the most likely explanation at this point).

    As far as age goes though, that just has to be pure prejudice and attitude from somewhere: an idea that "ME is a disease of middle aged women". ME/CFS can strike anyone, any age, any gender. There are charities and websites specifically for young people with ME: that proves really that it's not an old women's disease. From what I've read - and it rings true with experience on Phoenix Rising - the most common ages of onset are: Infancy, Puberty, and mid-20s. I'm guessing your onset was in your teenage years? I would guess the largest single group is those who had onset in their mid-20s, but that's probably just because there are more people over 20 than there are people under 20.

    I guess it might be a good idea for you to look for ME/CFS support groups specifically for young people: there are some out there, and people here might have some ideas about good ones. There's a new web site/forum just opened for young people with ME, I can't remember the name now but somebody here will know...

    In summary: the idea that "ME is a disease of middle aged women" is a myth, a prejudice, and a self-fulfilling prophecy for the medical and scientific worlds. Talk to just about any group of patients and you'll find out it just isn't true. So you're not nearly as much of an anomaly as you think, I'm afraid - there are millions of us hidden away out there, below the radar, of all ages and genders. And in relation to ME/CFS, in general, personally I'd advise you that, for the time being, the experience and knowledge of other patients and groups is a much more reliable guide on most matters than the official stats and research, unfortunately.
  16. Mark

    Mark Acting CEO

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    Probably was, yes. CFSAC?
  17. Mark

    Mark Acting CEO

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    :D Do we really have to go there just now? That's a really tough subject, and we aren't running short of tough subjects! Different people have different views...for now, it makes more sense for you to be concentrating on the positive changes you can make to improve your quality of life...
  18. sleepy237

    sleepy237 Senior Member

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    So it's quite likely in my opinion that infection rates are similar in men and women, but that the levels and severity of infection, and the severity of illness in general, tend to be higher in women than in men just because of the hormonal factor. And all of that could hold good for other viruses and retroviruses as well, by the way - not just XMRV - so those theories don't depend on XMRV being the cause (though I still think XMRV is by far the most likely explanation at this point).

    As far as age goes though, that just has to be pure prejudice and attitude from somewhere: an idea that "ME is a disease of middle aged women". ME/CFS can strike anyone, any age, any gender.


    Hormones are known to increase prostaglandin which increases inflammation. Also just like fibro I think that men may be guilty of under reporting their illness. That stiff upper lip thing.

    Here is an article on the new site for younger adults with CFS/ME.
    Euthanasia? Why throw away a life that isnt written off. We all suffer greatly but we all want health back. CFS has made me cherish life more than I could have done as the ignorance is bliss girl pre illness. Now I realise what I had and I want as close back to that as I can get.
    http://forums.aboutmecfs.org/content.php?341-HealKick!-Forum-for-Young-Adults-with-ME-CFS-Begins

    Stay strong Saveme ~Sleepy
  19. SaveMe

    SaveMe *****

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    That's a very nice debunking of that particular counterargument there, SaveMe.

    However the point about gender distribution really is a contentious and open question. You've mentioned a source that has a ratio of four to one (which would mean 80% female), and I think you're saying that source is the CDC. So keep in mind what so many people here and elsewhere are saying: the CDC, specifically, is just about the least reliable source you can go to for information about the illness we have. You know quite well that what we have is not understood properly and not treated with respect, not believed in accurately by the authorities, so it shouldn't be too hard to extend your personal experience of not being believed or understood, and to be questioning of what the CDC are saying about it.

    And anyway: there is a more likely counterargument that applies, and is almost certain to be a major factor in those statistics that say it's a women's disease, in my opinion. That's the fact that doctors and scientists have had it in their minds for decades that this is mostly a women's disease. So when somebody walks into the surgery with the vague and complex symptoms we have, and they have no tests to use to diagnose it (although the tests do exist, but that's a whole other story...), then one of the factors in the doctor's mind is certain to be gender. If it's a woman, the book says that there's this mostly female 'condition' that it could be, and they are more likely to diagnose ME/CFS. Whereas if it's a man, they will be more sceptical that it's ME/CFS, they will think that's less likely to be the right diagnosis and they'll be more likely to look for other explanations.

    Also, people with ME/CFS quite often have other diagnoses, particularly Multiple Sclerosis and Rheumatoid conditions, and some move back and forth between that diagnosis and a diagnosis of ME/CFS - in either direction. There's quite a lot of overlap with the symptoms. And a lot of us men don't actually get an ME/CFS diagnosis at all (I'm diagnosed MCS, and by my GP as "ideopathic immune disorder"), but when we talk to people online diagnosed with ME/CFS, we discover they have the same or similar symptom patterns. My symptoms, and indeed me myself, we don't show up on any official statistics anywhere - as far as the system is concerned, I literally don't exist - there is nothing registered wrong with me because there's no suitable box to tick. And as one doc told me frankly when I asked him about ME/CFS: "You would have fit the criteria very well a couple of years ago - but trust me, that's a diagnosis you don't want." (!)

    So: what is the real gender ratio? Most of the more reliable stats I've seen suggest something more like 2:1 female to male: 67% female. Personally, I am about 50:50 on my guess as to whether it's really 2:1 or more like 1:1 with a lot of men out there who are undiagnosed or have different diagnoses. If you look at MS, the male:female ratio there is also heavily distorted - the other direction - and it has changed significantly over the last few decades while it's been on the rise, but does that just reflect women becoming more likely to get an MS diagnosis then they used to? I suspect so...

    Also remember there's a history of "hysterical women" attitudes here: there's the old sexist attitudes that float around still, and some people who like to deny it's a real illness look back to 19th century accounts and try to link it to that - but it's all just based on sexist prejudice, I think, which has always been particularly notorious in the medical profession.

    One more point about gender. There's a very plausible theory to explain the male/female balance, which is especially highlighted by what's known about XMRV. Replication of XMRV is encouraged by stress hormones, cortisol, and by sex hormones. That part isn't really in any dispute: in the labs, those chemicals encourage XMRV to replicate much faster. This is one of many reasons why XMRV fits so well as an explanation for everything we know about ME/CFS. We know that exercise makes us worse - XMRV would explain why, because the cortisol etc will cause the XMRV to replicate. And similarly for the alleged relationship with stress making things worse. Most importantly here, women's hormone levels fluctuate regularly of course, so they are unable to avoid regular boosts which would cause XMRV to replicate. So it's quite likely in my opinion that infection rates are similar in men and women, but that the levels and severity of infection, and the severity of illness in general, tend to be higher in women than in men just because of the hormonal factor. And all of that could hold good for other viruses and retroviruses as well, by the way - not just XMRV - so those theories don't depend on XMRV being the cause (though I still think XMRV is by far the most likely explanation at this point).

    As far as age goes though, that just has to be pure prejudice and attitude from somewhere: an idea that "ME is a disease of middle aged women". ME/CFS can strike anyone, any age, any gender. There are charities and websites specifically for young people with ME: that proves really that it's not an old women's disease. From what I've read - and it rings true with experience on Phoenix Rising - the most common ages of onset are: Infancy, Puberty, and mid-20s. I'm guessing your onset was in your teenage years? I would guess the largest single group is those who had onset in their mid-20s, but that's probably just because there are more people over 20 than there are people under 20.

    I guess it might be a good idea for you to look for ME/CFS support groups specifically for young people: there are some out there, and people here might have some ideas about good ones. There's a new web site/forum just opened for young people with ME, I can't remember the name now but somebody here will know...

    In summary: the idea that "ME is a disease of middle aged women" is a myth, a prejudice, and a self-fulfilling prophecy for the medical and scientific worlds. Talk to just about any group of patients and you'll find out it just isn't true. So you're not nearly as much of an anomaly as you think, I'm afraid - there are millions of us hidden away out there, below the radar, of all ages and genders. And in relation to ME/CFS, in general, personally I'd advise you that, for the time being, the experience and knowledge of other patients and groups is a much more reliable guide on most matters than the official stats and research, unfortunately.[/QUOTE]

    good stuff Mark u always have something good to say, and yes http://www.hhs.gov/advcomcfs/meetings/index.html is where i believe i saw corts face (CFSAC)
  20. SaveMe

    SaveMe *****

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    Thanks Moon,
    I see a parallel between what you were saying and what actually happened to me. "WHY couldn't someone have told me to STOP, Go home, REST, for an entire year!"
    My feeling for a while has been "WHY didn't anyone warn me the potential dangers of vaccines?" None of my close family or friends told me about that.
    My elementary school would always show videos or have a guest speaker talk about the dangers of cigarettes, alcohol, and sex. I became so terribly frightened by these things, that I never engaged in them.
    For some reason, I trusted the govt, trusted the vaccine manufactures, and ultimately several unnecessary vaccines which led to the destruction of a healthy teenager.

    Moon, I heard that risk for DVT rises when non-active for long periods of time. That coupled with the negative effects of a sedentary lifestyle. Im not saying I wont rest for a long time, its kind of scary though.

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