Thursday, May 17, 2012

PLAY IT AGAIN,
AND AGAIN AND AGAIN

  A New ME Outbreak?

A group of mostly female students aged 12 to 19 in San Antonio, Texas, have come down with a constellation of symptoms physicians are terming unusual. Those symptoms include chronic fatigue, headaches, nausea, vertigo, stomach problems and seizure-like activity. In a recent news segment by San Antonio reporter Sarah Lucero, a mother of one of the girls said that one doctor accused her daughter of faking it—because the symptoms are so uncommon—and urged psychiatric care.

In the segment, other diseases that afflict teenagers are mentioned, including “chronic fatigue syndrome, postural tachycardia syndrome or POTS.”

When will doctors get it that POTS often goes hand-in-hand with chronic fatigue syndrome and that these Texas students probably have CFS?  Perhaps when the name CFS is changed to Myalgic Encephalomyelitis (ME) or something else that explains how serious this disease really is.

One bright light: The San Antonio illness is being termed “neuroimmune syndrome.”

Has CDC gone to San Antonio to investigate?  My bet is no.

Sadly, the mother of the teenage girl in the piece is taking her daughter to the Mayo Clinic for help. Perhaps more than any other hospital in the United States, the Mayo Clinic is known for its dismissal and psychologizing of ME.  The most egregious example that I know of:  Back in the 1980s, Nancy Kaiser, who suffered from a severe case of ME—before she had a name for it—traveled to more than 200 physicians for help until she found ME-literate physician Daniel Peterson. One of her stops along the way was Mayo.

During the visit, Nancy had a seizure—she had multiple seizures every day before going on the experimental drug Ampligen—and fell off her chair. The Mayo physician kicked her and told her that she was faking it.  Nancy, of course, had no memory of the event, but her husband, Jim, who accompanied her, certainly did.  Nancy died of ME in 2008.

To view the San Antonio news segment, click here.
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My thanks to Zac for emailing the clip about the San Antonio students.

19 comments:

  1. The same thing happens again and again and everybody forgets each time.

    On the heels of Le Roy.

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  2. Thank you for remaining there on our side and be our voice Mindy.
    After the sad episodes we have lived with the whole XMRV issue, still unresolved, it is nice to see that you are still looking for answers and spreading our voices.

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  3. I believe the mother called it a neuroimmune syndrome; this is just up the road from me, and believe me, if there's a dr. in S.A. who understands this illness, it is a deeply held secret!

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  4. So glad to see you back Mindy. Your voice and excellent insights were missed.

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  5. Time for a campaign to get the CDC to investigate. DR Unger should get herself out there if she is truly interested in outbreaks and the real disease ME.

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  6. This is not a psycho illnesses, it is real, be it viral, bacteria or chemical introduce it affects the individual with continuous flu symptoms and other vague illnesses. Think about it, if a car has to work harder to run, parts will break. Think about a human body is a delicate machine is overtaxed when fighting an invading enemy then all the parts will become broken, dysfunctional, with out proper treatment be it spiritual, diet and support it becomes weaker and weaker, causing fatigue and symptoms. The invading enemy is attacking defenceless areas of the fragile human chemistry and structural environment and no one can predict the outcome, only the victims who were in the wrong place at the wrong time. Be it psychological, medical or spiritual all who are affect by this invasion should be given respect and understanding, not discarded like an useless individual. No one wants to be trapped by an invisible illness that stops them from living. Look at all the victims or survivors and you will see they all loved life and contribute much and continue even after being diagnosed.

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  7. This is just how mine began

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  8. Here's the link to that news article
    http://www.khou.com/news/health/San-Antonio-teens-catching-mysterious-illness-151546105.html

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  9. http://www.flutrackers.com/forum/showthread.php?p=453828
    This is quite interesting about buried mustard gas in that same area of Texas. The second post on this thread is quoting (from its provided link) called 'Camp Bullis.'
    It is suggestng a possible "chemical link to autoimmune disease" with the T.C.E. trichlorethylene which was used to process the mustard gas.

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  10. Really good to hear from you Mindy.

    This is very sad but is anyone really surprised? After what has transpired since the WPI/Mikovits melt down last year and Wessely's conclusion that CFS can be "cured" by CBT and GET we're right back where we started.

    I was just released from a five day stay at a hospital (not related to my CFS). The nurses and several doctors asked about my medical history and despite my stellar health before my CFS diagnosis I was treated like a hypochondriac and even chastised for receiving disability!

    The eye rolling and total dismissal of my illness was so distressing that I dare not mention it again after the first day. Then there was the inevitable referral to a psychiatrist for my psychological disorder of CFS.

    A campaign to the CDC is highly unlikely. When I happened to mention your blog a couple of years ago about the effectiveness of "Act Up" for HIV/AIDS to the leaders in the CFS community, I was quickly shut down. They are not interested in organizing to create a unified voice nationally for CFS because they are too busy fighting over turf.

    How very sad.

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    1. Sadly your info is wrong, Dr Miklovits did not have a melt down - she was being sued by WP but thankfully they have withdrawn all charges. We always knew they were false and Dr Judy has always been involved and continues to be involved in high level research for us! As for Wessley the weasel as i call him - well yes, sadly this fool is still saying we imagine it but more and more evidence is turning up thank god to prove him wrong. Best Suz

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  11. To deny that mass hysteria exists is just as bad as dismissing epidemics of ME/CFS as the result of mass hysteria. According to Eleanor Stein, there are three hallmarks of hysterical outbreaks- a predominance of females being affected, a predominance of children/teens being affected and a self-limiting illness course, ie the people don't stay sick for very long.

    While ME/CFS does occur mostly in females, this is also true for other diseases such as multiple sclerosis, lupus and various other autoimmune diseases. However while children can be affected in outbreaks just like everyone else, children are by no means the predominant group affected and the disease is absolutely not self-limiting. So for two of the three hallmark symptoms of mass hysteria, ME/CFS does not fit, with the third being extremely questionable. But for 'outbreaks' such as this one and the one in Leroy, denying the possibility that they could indeed be mass hysteria takes away from the credibility of legitimate ME/CFS outbreaks, especially when the whole thing blows over after a few weeks or so. AFAIK, the Leroy girls are all back to normal now and have been for quite some time.

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    1. ''the Leroy girls are all back to normal now and have been for quite some time''. I'm not so sure anonymous: http://www.youtube.com/user/rodeocowgirl131

      I'm not US based so don't follow the news there but could it be that they have simply vanished from media interest?

      Mindy, thank you as ever.

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    2. sure it just vanished from the media, alot of those girls had the gardasil vaccine

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  12. I did read somewhere that one child tested positive for Lyme Disease and is on treatment for that.
    On a different note you might be interested to hear this from Trevor Marshall ( yes I know his MP is controversial but nevertheless this was an interesting news)
    CFS/ME is now accepted as an Immunological disorder

    Last week's 2012 International Congress on Autoimmunity, in Granada, Spain, saw
    presentations from myself (one plenary, one shorter) and from Inge Lindseth. I
    also chaired two sessions.

    There were 8 presentations on CFS at this Congress.

    It is notable that among this top-notch audience of researchers and
    rheumatologists there is now general acceptance that CFS/ME is an immunological
    disease, most probably autoimmune, which can be detected using antibody assays.
    IMO, that is a stunning step forward for the CFS/ME community.

    Inge's video presentation can be found at
    http://www.youtube.com/watch?v=2IMdAV6SIMU

    while the PDF transcript is at:
    http://autoimmunityresearch.org/transcripts/Auto2012_IngeLindseth.pdf

    I am working on the video of my plenary session presentation, it should be
    online sometime during the weekend.

    Sincerely
    Trevor

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    1. Intresting enough several several of the injured gardasil kids test positive for lyme, but symptoms started the day or week of the vaccine, they have been sick for years, seizures ect, all the same symptoms the girls in Leroy and Texas have, go to truthaboutgardasil.org or google Gardasil deaths, not many know but 114 have died from this vaccine and 25,784 have reported injury to VAERS

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  13. We stopped at the Mayo Clinic as well. 10K later, we were "belittled". The only experience worse in our decade long help for Blake, was The MIND Institute at UC Davis. They took a little action. They suggested I had munchausens by proxy. Stay away from them both if you have Lyme, CFS/ME, PTSD, GWI, Epilepsy or MS or Autism.

    Also, these cases in Texas are over 2 years old. NOPE, The CDC did not show.

    Best,
    Julia Hugo Rachel

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  14. I went to go see Dr Chia in April and he was mentioning to me that he sees outbreaks in the LA area all the time and has had for years.

    Response from other researchers or governmental agencies? *crickets*

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  15. BRAVO! Now all we have to do find leadership that will admit that HIV is not the cause of AIDS, and that retroviruses are not cytotoxic.

    Then, we can start making some real progress.

    www.cfsstraighttalk.blogspot.com

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