Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Discuss the article on the Forums.

"A Commotion in the Blood," by Mindy Kitei

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Jul 20, 2010.

  1. Mindy Kitei

    Mindy Kitei

    I've just posted a new article that gives the timeline and bloodline of ME/CFS.

    Mindy Kitei
    CFS Central
  2. anciendaze

    anciendaze Senior Member

    Excellent overview Mindy!

    One tiny omission may be significant. When you mention the clusters in Incline Village and Truckee, you did not mention the less-reported cluster in Yerrington, NV. This is a poor community way down on the desert floor. It differs from Incline Village in geography, demographics, education, economics and access to medical care. It gets overlooked because the sufferers did not have media contacts, or the money to pursue extensive testing not reimbursed by insurance.
  3. SOC

    SOC Senior Member

    Great article, Mindy! Very informative for me, too. I had no idea that there were so many cluster outbreaks.

    I wonder if we'll find more clusters as ME/CFS (or whatever they end up calling this dmmd disease) is better accepted by the medical community.

    If it weren't making my daughter and I so sick, I'd find the whole story of ME/CFS/XMRV completely fascinating.
  4. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    Fear of reprisals??
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi caledonia: one thing comes to mind: the cfs definition leads to confusion. Instead of thinking of an epidemic, doctors are now thinking of a chronic condition. Its a different psychology.

  6. jimbob

    jimbob ME/CFS84-XMRV+

    myrtle beach, s.c.
    I was in basic training in the Air Force at Lackland Air Force Base in 1968 and had strep throat along with many others! Holy Smokes, who knows how this might have figured in to the big picture?!
  7. Tembo

    Tembo Australia

    Great article Mindy - thank you :Retro smile:
  8. Forbin

    Forbin Senior Member

    One other possibility is pandemic. The disease is so widespread (and reporting is so diluted by cases of "chronic fatigue" that meet the CDC's broad definition) that detecting outbreaks from the "background noise" becomes impossible.
  9. biophile

    biophile Places I'd rather be.

    Good points. Another factor may be: The advent of air travel was responsible for the appearance of a rise in clusters during 30s-80s, and now the necessary biological agents have spread through most of the population and already affected the most susceptible.
  10. Sean

    Sean Senior Member

    Thanks again, Mindy.
  11. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    A cluster has to be reported and investigated. Any doctors phoning in a report of those symptoms today would probably be told that it sounds like Chronic Fatigue Syndrome, and CFS "doesn't happen in clusters." End of story, no investigation, no report.
  12. Forbin

    Forbin Senior Member

    What would happen if a pair of doctors in a small town reported to the CDC today exactly what Peterson and Cheney reported in 1984? Would the CDC care? Would anyone ever hear about it? Would it make the papers or the TV news? Probably not.
  13. Mya Symons

    Mya Symons Mya Symons

    Wow, very very awsome. I am having some pretty severe brain fog this week so I don't know what else to say. But, I think very very awesome sums it up.
  14. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Ive been trying to figure out if there was a CFS outbreak in the small country town i live in 13 years ago. I've heard that there is only 3 of us diagnosed with CFS in this town.. interestingly one of those got CFS in the same year as I did!!. (the other person with CFS here, I havent ever had a chance to ask her what year she got it in but if it was at the same time as me and this other.. well that would be very interesting).

    Many doctors in this town still arent willing to diagnose CFS thou I think a couple of them now would if someone went in to see them who had it. (I couldnt get them to diagnose mine years ago cause they didnt believe in CFS).

    The one who apparently got it about the time I did.. I used to hang out with her about 10-11yrs before that. (so if this XMRV or whatever virus it is.. has a long term incubation period.. maybe her and i was exposed to the same original source which then presenting us both with symptoms somewhere around the same time period).

    There was a big CFS outbreak not far from where i live.. 30 mins drive away, back in the 1950s where 600 people got CFS (in a small sea side town)
  15. Brighton - 1957? - That's on Bryon Hyde's list.

    Thanks for everyone's answers by the way. I was thinking maybe the pandemic thing - there are so many cases that it's hard to identify a cluster, it's just everywhere.

    Then again the watered-down definition could contribute to the confusion.
  16. Tammie

    Tammie Senior Member

    Woodridge, IL
    just wanted to say thanks, Mindy.....nicely done!
  17. muffin

    muffin Senior Member

    ---> I suspect there are a number of reasons for this lack of reported outbreaks. First, we have the worthless CDC who would not bother to investigate outbreaks anywhere, including the big ones. Next. I do believe that there probably have been many small outbreaks that went unnoticed and so not reported. When I was first sick and working at a Defense contracting firm after the Gulf War (and during the Gulf War), there were 15 people I was aware of that had my CFIDS symptoms. But many had other diagnoses and not CFIDS. The nurse/MBA didn't believe in CFIDs and was not going to collect any sort of data on anything. Her job was to keep health costs down, not be helpful or collect data. I think that there probably has been other outbreaks and the sick just go off and disappear, as most of us have done.

    The CDC does NOT like to do their job and keep real numbers. In August of 2009, the CDC told doctors and hospitals to STOP testing for Swine Flu and just assume and treat as Swine Flu. As it turns out, those sick/dead from Swine Flu were significantly lower than the seasonal sick/deaths. The CDC did NOT want those numbers tracked - they had to have an idea that the Swine Flu hysteria THEY ginned up (along with WHO) was not going to be as deadly as they hyped. And they have done much the same with CFIDS. They also have stupid criteria for making a diagnosis, doctors that don't know/understand or believe in CFIDS, and health departments that also don't know or care about this "neurotic little sydnrome" CFIDS. Hence, no real solid numbers on CFIDS.

    I can think up many more reasons for why the lack of reporting on cluster outbreaks hasn't been made past the 1989/1990 period. But I am willing to bet that there have been many, mamy smaller clusters after those years and many more sick with CFIDS than even before the 1989/1990 period. Just my opinion.
  18. Recovery Soon

    Recovery Soon Senior Member

    Thank you Mindy. This is excellent.
  19. KnightofZERO


    *thumbs up*

    Thanks Mindy! It is another piece that makes your blog an invaluable source of information. I wonder if you are still planning to do your article on blood transfusion and ME/CFS? I think to paraphrase the vice-president (in a family-friendly way) that would be a very big deal. Most especially if this was a retrovirus you would expect people to get sick a few years after transfusion in a pattern that was quite distinguishable from other illnesses such as Rheumatoid Arthritis (for an example).

    Such an article would go a long way to showing that whatever "it" is it must be infectious. You could use resources like Dr Hyde and Dr. Mikovits both whom have a fairly good record of responding to inquiries via email. Also there is this forum, why not post a poll for people who got CFS after a blood transfusion?

    Showing the falsity of the CDC's CFS "paradigm" of a poorly defined illness with components of child abuse and metabolic syndrome (at least they are not calling it "hysteria" ... a little more PR savvy now?) and no markers is definitely an important step to quality epidemologic and biologic research much of which should have been done a long time ago, however the researchers couldn't get grants.

    The amount of work that needs to be expanded on and the epidemiology that needs to be done is legion. We already have good researchers such as the Lights and Klimas studying neurologic and immune abnormalities. For our government agencies to insist, ignorantly in some cases and probably not so ignorantly in others, that this illness is some sort of "super burnout" is very damaging.

    There is also the AIDS doctor who is moving to work on "XMRV consulting", Dr. Marcus Conant. Since presumably one would show blood transfusion as a possible source of "illness" in a way analogous to how this was shown in the early days of HIV he could also be a great guy to interview.

    We can now only guess at the lives that might have been saved if those who were puzzled could just have said "I don't know" and let biomedical research proceed versus constructing a false and self-serving paradigm. Esh sorry for the little rant but definitely I think your idea for an article on blood transfusion and ME/CFS is a very very good one and a "big deal."

See more popular forum discussions.

Share This Page