CFS Age Cohorts

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Sep 16, 2009.

  1. Slayadragon

    Slayadragon New Member

    I was just reading the newest edition of "Osler's Web," which has a recent interview with Paul Cheney.

    Dr. Cheney says that the average age of his patients has increased from something like 35 (following the Incline Village epidemic in 1985) to more like 50-55 today.

    It could be that his practice is skewed towards older patients, but I'm not convinced that's it.

    Most people I've encountered on the web seem to be in the 40-65 age group.

    If indeed this is the case (is it?), my question is.....

    Why would people born between 1945 and 1970 be more likely to get CFS than folks born after 1970?

    This doesn't seem like a pathogen issue to me. I see no reason why pathogens would be more likely to be present in one age cohort.

    It doesn't seem like mercury either. It wasn't until very the past few years that mercury was taken out of vaccines and dentists stopped using amalgams.

    To my knowledge, the basic series of vaccines that kids get didn't change that much from before in the 1970's.

    And though some people (me included) had some vaccines as adults back in the 1980's or 1990's, that doesn't seem to be enough of a universal factor to have made the difference.

    What I'm wondering is whether the difference might be chemicals that were phased out subsequent to the creation of the Environmental Protection Agency in 1970.

    It's my understanding that the stuff that was taken off the market was pretty significant. This included pesticides and other chemicals.

    And some of that stuff does seem like it was pretty nasty.

    I'd kind of like to believe that these chemicals were a big contributing factor (or underlying cause) for people's developing this illness, since it bodes better for the future of the world if so.

    I don't know that this would help any of _us_ on this board though.

    "Our Stolen Future" makes it seem like it's very hard to get pesticides out of the body. Like, they only come out through mother's milk and blood.

    I hardly would want to pass on pesticides to a child, and anyway women age 40+ (especially with CFS) aren't going to be having many kids.

    Leeches, anyone?


    [This Message was Edited on 09/17/2009]
  2. TigerLilea

    TigerLilea Active Member

    Maybe this is the age range that can actually afford to go and see Dr. Cheney. Don't forget, he is just one doctor; possibly other doctors see more patients in a different age range.
  3. Elisa

    Elisa Member

    Hi Lisa!

    I wonder about the chemicals too...good points about age groups.

    I still think mercury may be a huge part of the problem - maybe lead too (lead in paint until the 70's).

    Do you remember merthiolate (mercurochrome)? It was an orange/red antiseptic - it was mostly mercury and I think it poisened many of us. I would get a scratch or other type of boo-boo and methiolate was put on my injury - and boy did it hurt - we would all blow on it til the hurt subsided. I was horrified when I found out one application would cause mercury poisening.

    IT IS 49% MERCURY BY WEIGHT. This may be were the real story is...we should poll people here.

    It was introduced by Eli Lilly sometime after 1927 and it was taken off the market in...the mid 80's (some sources say it was removed in 1970 others as late as 1998.)

    I was really mortified when I found this out.

    Good to hear from you Lisa!

    God Bless,


  4. lbconstable

    lbconstable New Member

    Hi Lisa,

    Some people have suggested a link to polio vaccination. If my memory serves... for a period of time (that us 40 -50 yrs olds fit into) they were administering a live vaccine. I think it's referred to something like "post polio syndrome." It's been a long time since I investigated this link, but it looked somewhat interesting.
  5. Slayadragon

    Slayadragon New Member

    I looked again at Osler's Web and noted that Cheney says his average patient is 50-55.

    I wonder how many people on this board are under 35.

    Wikipedia states the following:

    "An oral vaccine was developed by Albert Sabin using attenuated poliovirus that he had received from Hilary Koprowski. Human trials of Sabin's vaccine began in 1957 and it was licensed in 1962.[1]"

    I don't see on there if the live vaccine is still being used though, or when it was phased out.

  6. wendysj

    wendysj New Member

    Hi "Slaya" (If I may call you that...)

    I got sick about 5 years ago. I went to the Mayo Clinic and was tested for everything under the sun again. (Went through at least 6 months of going to doctor to doctor doing various tests before going to Mayo.) I was diagnosed at that time with CFS.

    You were wondering how many under 35... Well, I'm 1. :)

    Hope you are having a good day.

  7. consuegra

    consuegra New Member

    This is a confusing problem. I was just reading yesterday in Enlander's little book about the CFS/ME patient population. His summary of various studies and his own observations indicate that the parameters for patient profiles are surprisingly broad. All the patients in de Meirlier's waiting room (on a particular day) fit a profile of being white and in their late twenties and early thirties and mostly women. The same holds true of seeing the patients attending the three UK CFS/ME conferences that I have attended - young, white and predominantly women. Reno was slightly different, more mixed in terms of age. My conclusion is that it is very difficult to figure an answer here and that the more one would look at the problem the more one would be surprised. In this way, it conforms to everything else about this disease - so little is known.

  8. 3gs

    3gs New Member

    Hi I am a surivor of Polio. I got it at 15months old was paralyzed from the waist down. They told my mom I would never walk(wrong). I did not recieve vaccine until after I got polio.

    I was dianogsed with Post Polio Syndrome early 90's. I helped start the first PP support group when it was finally believed by docs(NOT ALL IN OUR HEADS-SOUND FAMILIAR?) Basically what it is our bodys are worn out. The muscles and nerves that werent affected are dying from over use.

    There are alot of similar symptoms with PP and FM/CFS. I have both.However FM/CFS is worse. oFTEN wondered if some polio pts actually have FM/CFS and not post polio syndrome.

    There was a lot of fighting about the vaccines at the time. I believe the live vaccine was stopped and no longer used.

    Sorry my mind is on blank in a bad flare right now. I will try to look into my info and post more clear data.
  9. jasminetee

    jasminetee Member

    What Tigerlilea said makes sense to me because we know children are still getting ME/CFS.
  10. Slayadragon

    Slayadragon New Member

    It sounds like maybe Dr. Cheney has an atypical patient base them.

    I'm sorry to hear that....

  11. floyd000

    floyd000 New Member

    I believe I heard some where that Dr. Cheney is expensive. Maybe those under 35 are less able to afford him?

  12. RunningAntelope

    RunningAntelope New Member

    I believe Cheney classifies his "cohort" as some of the "sickest" patients out there based on multiple echo observations. I'm not sure, though, that you can completely classify such a thing (KPS score is somewhat subjective). He is expensive, yes, but that's precisely because he only sees one patient a day (that's you) and not every day of the week (he does field interim phone appts. as well). I am in my early 40s. Came down with CFIDS a few months before my 26th birthday. Pushed through it and suffered miserably every day to "earn a living" until my heart said NO MORE, literally (and to think about how some of my former healthy colleagues used to complain about the dumbest things - the entitlement attitude, the constant dissatisfaction, the one cancer in the group that metastisized to everyone else, which oft happens on these boards as well. Heck, my fellow, almost pathetically ignorant, Americans don't even recognize what a GIFT exercise is). Have spent a lot of $ on Dr. Cheney, but he's worth it and hopefully my investment will be a gift to the universe in time.

    BTW, I firmly believe this illness is INFECTIOUS, at least in its early stages. I was not depressed, chemically exposed (that I'm aware of), and was exuberant about the prospect of becoming a doctor myself when I was afflicted. My wife "caught" this from me, but she was one of the lucky ones who recovered within the first four years (she was immaculate with her diet and sleep though and I mean IMMACULATE). My immune system took a measurable hit, and the microbiologist in me (undergrad) has to believe that only a pathogen was capable of that type of damage. We were both very "driven" individuals academically and I was a competitive marathon runner before becoming ill.

    [This Message was Edited on 09/18/2009]
  13. springrose22

    springrose22 New Member

    Vaccines now contain attenuated viruses which means they have been weakened, but they are still live.

    I believe that those of us with ME were weakened, so to speak, by various factors, such as mercury, vaccines, other toxins, etc., followed by a virus which caused brain injury, hence the many and varied symptoms. Difficult to treat. Take care all. Marie
  14. Dantes

    Dantes New Member

    Don't read much into it. A stupid statistic that shouldn't have been included, IMO.

    I got acutely sick at age 20, typical viral onset, and am now 28.

    I agree with the "being able to afford" it remark.

    Also, seeing as there are so many causes involved and so many sub-sets, it effects all ages.

    Genetics likely has more to do with the causes than toxins and vaccines.
  15. I'm 31, disabled (100%) since age 22, ever since I'd joined the military a little over a year & a half prior to that, (shipped out for basic training roughly 3 wks after 21st b-day)...

    That said (and also mercury toxicity was found, once an (integrative medicine) doctor was adamant about testing for heavy metal(s) toxicity... (bismuth was another one I had very toxic levels of)....

    I have showed symptoms of CFS- some neurosurgeon's say MS, since age 13/14..

    My mother (also has FM, I have FM, CFS, and MS, along with a laundry list of other problems, diagnosis', etc) Mom now looks back (guilt-riddled, unfortunately) & says she believes I was sick my whole life. This I don't know about, but, I certainly had problems from about 10+ that I remember... I just know the minute I hit teens, I lost ANY heat tolerance, could not eat breakfast, before school- I had to sit on the edge of my bed, drink coffee, & try to "come into it" for about 30 minutes, before I did ANYTHING in the mornings... etc.

    My sister is 33, and diagnosed with FM 2 yrs ago...

    So we 2 are under 35, diagnosed with CFS/FMS, or both.

    Mom & her 2 sister's were in their 40's. well, her oldest sister was in her 50's... Mom 1st, older sister dx'd 2nd, baby sister dx'd 3rd..

    Don't know when her brother was told FM was suspected... he's a complete FM denier. Doesn't exist.

    Anyways, my sister, myself, and one male cousin in my fam, were(or are) all under 35 with dx.

    I think age isn't as much a factor- as the acknowledgement/use of the diagnosis "Fibromyalgia" and/or "CFS" increase..... previously, who knows what was diagnosed, and still is in some cases... I just think (like MS or other diseases) they've come up with at least diagnostic criteria for them, (weak, though, IMO) but, a way to diagnose.. therefor, I believe it's the time, maybe, (90's, 2000's that continues increasing the # of diagnosis') I dunno.

    I knew what I wanted to say when I started this. Hope it still makes sense. who knows...
  16. jasminetee

    jasminetee Member

    aint... lol, that made perfect sense to me. Wow! You sure do have a lot of FMS in your family. You know, when I look back I think I was "sick" with something my whole life too. I didn't have trouble "coming to" after waking up at all though. It's interesting that you did when you were younger.

    I always had digestive problems even as a toddler. I don't know if I did as a baby or not. I also had dizzy spells as a toddler and up until I was about 10. A couple of times I even passed out. After being blood tested all day at the age of 5 all they could find was low blood sugar when I hadn't eaten in a few hours.

    My digestion problems have plagued me all my life and I've always had to eat well or I suffer 1000 fold.

  17. dvdav2000

    dvdav2000 New Member

    Hi from David. ( met at Guyers in 2007 ). I hope you are doing well.... I see Dr Kli. later this week for my twice a year visit. The 3 year study concluded June 09 so I have my labs... maybe she will have some hypoth./ conclusions... She has started an off site clinic near U of Miam. to help fund what she is doing. Anything new and exciting I can quiz her about?
  18. Slayadragon

    Slayadragon New Member

    Hi Bill,

    As usual, your comments are really interesting.

    May I ask where you're living now? (I mean more like the actual city/town rather than a broad descriptor like "California" or "East Coast.")

    Is this the same place (region/town as well as house/apartment) that you were at when you first got sick?

    If you don't feel comfortable posting that info here, you can send it to me directly at ya-hoo.

    I'm really happy to hear that your wife recovered. Has she had any CFS-type symptoms at all since then?

    I agree that this illness has a big infectious component to it and that this pathogen is likely at least partially causal.

    Thanks again for your comments.

    Best, Lisa
  19. Slayadragon

    Slayadragon New Member

    Hi Dave,

    Nice as always to hear from you!

    I'm really interested in Dr. Klimas' Good Day/Bad Day study, both in terms of the concept and her results.

    I actually have been working on writing some materials related to this topic (as well as to the related "locations effect").

    Would you be willing to pass them on to Dr. Klimas? Perhaps they might allow her to look at her data in a different way.

    I don't expect her to necessarily read them, but she might be more willing to do so if she gets them from a respected patient than from someone she's never met before. It would be interesting to hear your comments about them as well.

    I just had a phone consult with Dr. Guyer last week. He's very excited about my progress, and we're both hopeful that I will get to the point of being wholly well (and without having to keep living in the middle of nowhere!) soon.

    I just started a combination of Famvir and Valcyte and am tolerating it with almost no problems whatsoever. (Back when I was still living in my moldy house, even a touch of antiviral or antibiotic made me deathly ill.) Those drugs seem to be addressing my two remaining problems: lowering my mycotoxin reactivity and improving my cognitive focus. So hopefully I really am in the home stretch.

    I'm going to see if I can find your e-mail address in my files so that I can send you that stuff (if indeed you'd be willing to give it to Dr. Klimas).

    Thanks much for dropping by this thread.


  20. Slayadragon

    Slayadragon New Member

    Hi Tee,

    I was reading your bio and, as always, am dismayed at the severity of your illness.

    The heart palpitations you experienced when on Valcyte also trouble me. I don't know if you have any of those during the rest of the time.

    I'm of the impression that you live in the Bay Area, no?

    Are you ever well enough to travel elsewhere?

    I ask because it seems there's a particular kind of toxin present in certain places that creates especially severe symptoms in CFS sufferers. The Bay Area seems to be one of those places.

    It would be interesting to find out if some of the most severe of your symptoms might recede if you were to spend time elsewhere.

    There's a trick to doing this though. It's not _quite_ enough just to pack your bags and spend a week with a friend (though it's not that much more complicated either).

    If you want, let me know the next time you're able to visit somewhere else. I can let you know what would be involved in doing a test to see if a change in locations might make a difference in terms of the severity of your symptoms.

    Getting wholly well from CFS (which is my own goal) is a very difficult thing. No one should have to be as sick as you are though.

    Best, Lisa

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