The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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TILT...I have this, do you?

Discussion in 'General ME/CFS News' started by Countrygirl, Feb 7, 2014.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.huffingtonpost.com/claud...drome-comes-t_b_4698433.html?utm_hp_ref=green


    Claudia S. Miller, M.D., M.S. Become a fan
    Professor, environmental and occupational medicine, University of Texas Health Science Center at San Antonio
    Gulf War Syndrome Comes to the Gulf of Mexico?
    Posted: 02/05/2014 9:54 am EST Updated: 02/05/2014 9:59 am EST
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    Toxic Tipping PointBp Oil Spill CleanupToxic IntolerancePetrochemicalsGulf of MexicoTiltDr. Claudia MillerCorexitGulf Oil Spill Toxic ExposuresGulf War SyndromeBp Oil Spill SettlementQeesiGreen News


    A large cadre of marine scientists assembled this week in Mobile, Ala. to discuss the environmental fallout from the BP Deepwater Horizon disaster that occurred nearly four years ago off the Gulf Coast. Sadly, the impact on human health took a backseat at these meetings to fisheries, socio-economic effects, coastal ecosystems and the circulation of petrochemicals in the sea.

    These are critical topics, to be sure, but the health of residents on and near the coast deserve as much attention. Unknown numbers may have been sickened by exposures to chemicals from the spill, including the highly toxic dispersant, Corexit. Those exposures can lead to subsequent intolerances to other substances, including common chemicals, through a newly described disease mechanism called TILT, or Toxicant Induced Loss of Tolerance.

    Sadly, researchers and doctors remain unaware of this new mechanism for disease caused by chemical exposures. We're like the doctors at the turn of the century who, lacking knowledge of the germ theory, had no idea what was causing rampant fevers and deaths during the Civil War.

    There are individuals who were affected by the spill now being diagnosed with anxiety and depression. These are common effects of chemical exposures in susceptible persons, and can also be caused by stressful events.

    Of course, at this late date, those exposed in the Gulf area no longer have increased levels of chemicals in their tissues. The petrochemicals and dispersants they were exposed to have left their bodies and are no longer measurable. This is not DDT which deposits in our fat stores and remains there for decades. These are synthetic organic chemicals that in susceptible persons cause TILT. They enter the body, do their damage, and leave within days. Subsequently, everyday exposures trigger symptoms in those affected.

    It's true that large sums of money are being spent to study the health impact on people--including fishermen, cleanup workers, volunteers and others--who were exposed to the spill. But researchers who are looking into the aftermath of the Deepwater Horizon spill are not asking some key questions.

    In addition to fish and ecosystems, scientists at the Gulf of Mexico Oil Spill and Ecosystem Conference should have focused more on the toxic impact on people. They might have started by looking at its close cousin, Gulf War Syndrome, also involving petrochemical exposures.

    Thousands of Gulf War veterans have been sick and undiagnosed for more than a decade as doctors search for answers. No one can convincingly explain their diverse, multi-system symptoms, which include pain, fatigue, mood changes and cognitive impairment--symptoms also reported by many of those exposed during the Gulf Coast spill.

    But what can be done? There is now a free online self-evaluation that Gulf War veterans and Gulf of Mexico residents alike can access to help identify what's making them sick and determine what subsequent chemical, food and drug intolerances may have developed long after combat and the oil spill ended. People who are concerned that they may have chemical intolerances can go online, answer a questionnaire called The Quick Environmental Exposure and Sensitivity Inventory (QEESI) and share the results with their doctors. Internationally, the QEESI is the most widely used screening instrument for chemical intolerance and TILT among physicians and health practitioners.

    Only certain individuals are prone to TILT. Many experience long-lasting and diverse symptoms, including memory and concentration problems, fatigue, headaches, weakness and mood changes such as irritability and depression. They often report gastrointestinal, respiratory and skin problems, and some develop depression, addiction or violent behavior.

    With the Gulf War veterans, whether they were exposed to pesticides, smoke from the oil fires or pyridostigmine bromide pills, the result was the same--a breakdown in their natural tolerance. Long after these substances have left their bodies, the aftermath of these exposures--the new-onset intolerances--perpetuate their symptoms.

    The QEESI measures sensitivities through a self-evaluation based on four scales: Symptom Severity, Chemical Intolerances, Other Intolerances, and Life Impact." Each scale contains 10 items, scored from 0 = "not a problem" to 10 = "severe or disabling problem." Another 10-item tool called the "Masking Index" gauges ongoing exposures and overlapping symptoms that hide responses, blocking one's awareness of their intolerances, and the intensity of their responses to exposures.

    It's important to help people on the Gulf sort out and "unmask" the causes or triggers of their symptoms. TILT will be overlooked without the use of appropriate tools, such as the QEESI. Also needed are environmental medical units, or EMUs--environmentally controlled inpatient hospital units designed to isolate patients from exposures, including foods, that trigger their symptoms. Congress once endorsed EMU research for the Gulf War veterans but never funded it.

    It's encouraging that some doctors along the Gulf Coast are treating people for problems that they blame on the spill. Dr. Michael Robichaux, from Raceland, LA, told The Huffington Post in 2012 that he treated 50 people for a range of health problems that he believes were caused by exposure to chemicals from the spill. "The illnesses are very real, and the people who are ill are apparently people who have sensitivities to these substances that not all of us are sensitive to," he explained.

    Millions of dollars from the BP Claims Fund are being spent to expand access to healthcare in underserved communities, assisting with behavioral and mental health needs, training community health care workers on "peer listening and community input" and improving "environmental health expertise, capacity and literacy."

    And yet, not one dime has been allocated to study how toxic exposures resulting from this disaster may have rendered thousands of individuals chemically intolerant and suffering from the same disabling multi-system symptoms that continue to afflict Gulf War veterans.

    Nothing will change until medical science acknowledges that we are dealing with an entirely new disease paradigm. Today we recognize that germs cause infections and that protein antigens cause allergies and immune system disorders. Now we need to understand the full range of illnesses caused by chemical exposures.
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    @Countrygirl

    I lived across the street from the blackened beaches. I never went back in the water or even walked on the beach again, but I was exposed through the air. Those chemicals were measured in swimming pools a mile from the beach.

    Now I am claiming from BP--but for property damage not health issues. And they are running these happy, happy ads about how the Gulf is back to normal. :(

    Sushi
     
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  3. Countrygirl

    Countrygirl Senior Member

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    I am so sorry to hear that you have been directly affected, Sushi. I don't think any of us can avoid chemical contamination these days.

    My 'TILT' was caused by the organochlorines and (possibly) an organophosphate depending on batch number that was spayed over my new timber house as a preservative. Others have been severely affected in my area by dipping sheep in the OP dip or just by being in the vicinity.

    Sadly, moreover I am also a (tiny) shareholder in BP. :aghhh::depressed:
     
  4. AbbyDear

    AbbyDear

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    I can imagine. I can only skim the text, and not able to understand it all, but I think this is close to what I am experiencing - can not tolerate much of anything, hyper-sensitive (odor, food, chemical, etc.). what bothers me is that nobody in my area has any clue about diagnosing anything even remotely outside the standard chonic illnesses: high BP, high cholesterol, diabetis, and cancer. I have spent well over 10 years, consulting with scores of doctors, spending thousands and thousands of $, and they all just wonder...and try to blame it on some psycho bable, send me on to another 'specialist'... why, why, why can they not even admit that this could be a serious, life-destroying problem, an immune problem, and/or a neuro problem, whatever, something that at least kinda makes some sense. We hear about these things, yet it just seems like only patients hear about it, falls on deaf ears like no one here ever reads about stuff like this outside the box, cept maybe a handful of docs scattered around the country, generally on their own and not directly associated with any major univeristy or hospital.
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    Then sorry! :oops: that my claim with BP will take a tiny amount of money out of your pocket!

    Sushi
     
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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Here is a link to the QEESI screening test that you can print and take to your doctor. The author of the above article helped to develop the test.

    http://www.qeesi.org/
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    BP just paid my claim! :thumbsup:

    It only took me a zillion hours to get everything together for the claim and to plow through their very confusing website.

    Sushi
     
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  8. Valentijn

    Valentijn Senior Member

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    Woohoo! Drinks are on Sushi :D
     
    Sushi likes this.

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