During the PWSA meeting discussed in this article, I had asked questions trying to determine the cause of PWSA changing the water treatment mix. I was not able to get a direct response.
What I was trying to uncover is expressed in the following 2 paragraphs of this article: https://www.theguardian.com/environment/2016/sep/12/pittsburgh-water-expensive-rust-colored-corrosive
By 2010, the water agency was struggling with what seemed like an invasion of cancer-causing chemicals called trihalomethanes, formed when salty fracking wastewater came into contact with treated drinking water.
In an effort to reduce brominated trihalomethanes, the PWSA dropped chlorine levels, one of several factors Stanley States, the director of water quality at PWSA until 2014, believes led to increased lead levels.
This leaves me with a question that has 3 parts:
1) Can we get data or information from PWSA - or past PWSA employees - regarding whether fracking contaminants were a factor in the treatment change?
2) Can we get PWSA - or elsewhere - to provide evidence that this change aggravated the leaching lead issue many to most Pittsburghers are faced with today?
3) If (1) and (2) are 'Yes', then will Pittsburgh utilize the 2011 ordinance CHAPTER 619: TOXIC TRESPASS RESULTING FROM UNCONVENTIONAL NATURAL GAS DRILLING to obtain enough money from the fracking industry and lessors to pay for the replacement of lead pipes within the city? The Toxic Trespass law is here: http://www.marcellusprotest.org/sites/marcellusprotest.org/files/Pittsburgh%20Toxic%20Trespass%20Ordinance.pdf
Many Pittsburgh homeowners (including myself, my test result came in at 9.63) and business owners will soon have to pay several thousand dollars each for a problem that likely did not exist before the combination of fracking contaminants and Veolia mismanagement aggravated the problem - caused lead pipes to once again leach lead in unsafe quantities. Can we not instead get those reponsible to pay for these changes?
Great article! We need more stories like this! Paintball is a great way to exercise while also getting your adrenaline going!
Thank you Rebecca for posting your story. Time has come to address this illness. 31 years ago when many of my College Abroad Study Program fell ill together overseas, there was not yet the resources available to get a grip of the nuance of what was going on after the initial infection slipped away. The situation is different now. We have the technology but seem to be missing the good will and dedicated effort of the institutions. It seems to be easier for too many within the medical community to say sorry no cure, no treatment, next patient please. This needs to change NOW. There is no longer a valid excuse for public health officials not to lead a dedicated charge. There is also no longer an excuse for friends, famlies, and neighbors to sit on their thumbs. Get off your duff and join the fight, if you can not, why not!
Thank you, Rebecca, for shining a light on the millions of people suffering with this awful disease. We need so much more of this type of coverage to pressure NIH to step up and fund research for its citizens who are suffering this terrible nightmare.
The good news is, these patients dont die. The bad news is, these patients dont die, says Davis. They really wish they would die, but they cant. And many of them commit suicide.........i 'v been bedridden 4 yrs. i am unable 2 speak, this quote is priceless; it sums up what every single severe sufferer feels, every single day, but no one dare admit. i am not depressed, tho i dream of leaving this broken body every single day. nothing else puts a smile on my face. nothing.
No, McKeesport was not originally settled by the family of David McKee, as it was earlier settled by Seneca indians, including Queen Aliquippa. http://www.varsitytutors.com/earlyamerica/…
Thank you for this thorough and well-written article. I would like to point out that there are tests doctors can use *today* to help diagnose this disease and demonstrate an individual's degree of disability.
A Cardiac Pulmonary Exercise Test (CPET) performed two days in a row dramatically demonstrates a person's inability to generate and properly use energy. It is based on 1940s technology, yet it is unavailable to ME patients due to physician ignorance and prejudice.
Like Stefanie, many patients suffer from orthostatic intolerance (OI). This can be diagnosed by any doctor with half a brain, a blood pressure cuff, and a watch. Simply measure heart rate and blood pressure while supine, and then while standing, making measurements at the one, five, and ten minute marks. More thorough testing can be done on a tilt table - another low-tech device that has been around for decades.
The various forms of OI *can* be treated, thereby improving a person's symptoms and ability to function. But first one needs to find a doctor that understands ME is a physiologic disease, and not some kind of mind-magic psychosomatic disease caused by thinking the wrong thoughts. In my case, after a dozen years of illness, I'm still looking for a doctor who will actually try to treat the disease instead of telling me my illness is "mostly psychological".
As far as any lab work done mine has always shown problems. First labs done 15years ago I had 5 different active viruses, low natural killer cells and more that I can't recall. Labs done just 4 months ago show 3 active viruses, and more. Sorry brain fog bad today. But there are tests that can show abnormalities. Otherwise good article. I was part of the demonstrations in San Francisco on September 27 and have been bed/housebound since then. It was too long of a trip even though I was able to sleep in the RV for 4 hrs. But it turned into a 12 hour day. I've had ME for 20yrs but it took 5years to diagnose. Must go back to bed. Best wishes for all who have this devastating debilitating disease. I've often felt like throwing in the towel.
Thank you for stating our plight so clearly, Rebecca. I have suffered from ME/CFS and at the hands of uninformed medical personnel for 35 years. I am blessed to see a very caring expert now, but there is no specific treatment or cure due to lack of funding for even minimal research. I am in the severe 25% range, am home bound, and my disability is no longer invisible.
The strange paradox of the 'progressive' gender advocates - we need to ban all forms of therapy to minors that attempts to change sexual orientation because that would be homophobic. But we should actively provide synthetic hormones, hormone blockers or gender reassignment surgery to minors who believe they were born in the wrong biological body - because to it would be transphobic not to.
This is such a great article! Thanks for an accurate portrayal of how disabling this disease can be. This was a great quote. The illness is characterized by post-exertional malaise, which is a severe worsening of symptoms after even minimal exertion. For example, the exertion can be a minor physical activity, such as walking; or a mental activity, like reading or writing. As Dr. Davis pointed out, one of the most frustrating things about having this disease is that people assume its just about being tired all the time.
Thanks also to Stefanie for being willing to share her story. As a patient I find that its a strange mix of heartbreaking and encouraging to read about the struggle of others. Its so true that we patients just want to be heard, respected, and helped.
This should wake you up America.
Does anyone know what treatment Tillman's daughter is receiving?
Standing Rock stands for a lot more than respecting the Native Americans. It starts there, as it should, but there is much more to it that is not being made public. The drinking water of this whole world is being threatened by greedy oil corporations that are the only ones benefitting from these pipelines. All pipe lines explode, sooner or later. I read that there was a big explosion on the Keystone Pipeline. There have been numerous leaks and much pollution. At some point, there will be no more safe drinking water. Then it will be too late to act. ACT NOW!!
Thank you for this article. I was pleased to see a lot of important information regarding the stigma that continues, the significant lack of funding, and the harm of exercise for anyone who fits the criteria written by the experts. However, any discussion about ME should always include the dysregulation of the nervous system, the immune system, and the endocrine system.
Clarification about the criteria for myalgic encephalomyelitis (ME) is important. Despite various criteria written for this disease, there is a highly respected criteria and primer written in 2011 by experts to help doctors diagnose and treat ME. This criteria is known as the International Consensus Criteria (ICC) and has been recommended for adoption to help doctors diagnose and treat patients with this debilitating disease. Those who fit the ICC, must have Post Exertional Neuroimmune Exhaustion (PENE), something not every criteria requires. To learn more about the ICC go to: http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria
Your subheading The good news is these patients dont die is misleading and is not born out in the experience of the patients. The higher prevalence of cancers and heart problems in this population means a higher death rate at an earlier age. Because of the devastating impact of ME, suicide is a significant issue among this population. This is often directly tied to the abuse at the hands of doctors who have, as stated in the article, used the harmful CDC guidelines.
Many of us on the front lines, can attest to the constant struggle ME patients have overcoming the stigma perpetuated by uneducated doctors and poor reporting. The difficulty finding knowledgeable doctors is a serious problem and, as mentioned in your article, the NIH has been negligent in their past response and only a change in attitude away from psychosocial causes at HHS and significant research into the biological nature of this disease will bring progress in this field.
One more thing on a more personal note: For those who are newly ill, like the persn in your story, some of us old timers recommend applying for disability as soon as possible as the process takes years. The hope being by the time the process is complete these patients will go into remission or recover and will no longer need the assistance. But, if like many of us, the disease continues they will be in the system and better prepared to thrive despite the disabling nature of this disease.
Thank you so much for this fantastic coverage of ME/CFS and for including a personal story of debility for others to relate to. It is rare for ME/CFS to be represented so thoroughly with fact based information. This is greatly appreciated.
I have two comments to make.
1) It is preferable to refer to ME/CFS as a disease rather than an illness. This community continues to fight a 30+ year battle for recognition of the physiological nature of ME/CFS and calling it an illness undermines that to some degree. There is a distinction - one can be ill without having a disease and one can have a disease without feeling ill.
2) In this sentence in the 5th paragraph, Unlike other illnesses, doctors have no way of diagnosing ME/CFS; tests like blood work dont reveal anything. Combining these two clauses into one sentence sends a confusing message. Its one thing to state that although we are close there is not yet a biomarker or diagnostic lab test for ME/CFS. Its another to say that blood work doesnt reveal anything. There are many blood work abnormalities. Stating it the way it is here leads the reader to falsely believe that patients have perfectly normal blood work, therefore this cant possibly be diagnosed through a lab test. Researchers at Griffith University in Australia believe they'll have a diagnostic lab test within 5 years and perhaps others are even closer.
Thank you again
Thank you for a thorough and well-researched article. I am very impressed.
The amount of funding allocated for CFS/ME research is shameful at $7 million.
Obesity is funded at $931 million. MS is funded at $98 Million. HIV/AIDS is funded at $3 Billion. And it is wonderful that headway is being made on treatments for those diseases.
How can CFS/ME make progress toward a cure at this level of funding? Why isn't the research giant UPMC doing studies for CFS/ME patients?
Many of us are aging with CFS and the prospects are dismal.
It is very difficult for PwCFS to be their own advocates. We need help from outside the patient cohort. https://report.nih.gov/categorical_spendin…
Between the ADA and the FHA, the requisite laws are already in place for both housing and every type of business and government building. Every detail of accessibility for the built environment is covered in those two laws as *minimum* required standards. Some municipalities, such as San Francisco, have more stringent requirements, but that baseline already exists.
What is necessary is to have a building department that will actively *enforce* them.
ADA accessibility law is all about the built environment - which is what the building inspector should be dealing with, along with the rest of the building code.
Nothing that does not meet ADA accessibilty requirements building code should ever get a building permit to start with, and businesses (including multifamily housing) that are not in compliance must be cited, fined, and compelled to comply. It shouldn't take any new laws, just a directive to the building inspector.
ADA is part of the building code in every inch of this country. When there's a violation, or even just an unsafe condition of any sort, it''s the building department that should be responsible for investigating and dealing with it.
I can tell you from personal experience that they do not in this town, which is shocking and unconscionable.
Wendy Hoechstetter, CAPS, Allied ASID
Looking for Answers
ME/CFS was first investigated by the Centers for Disease Control in the 1980s, when 160 residents of Lake Tahoe, Nev.s North Shore came down with a chronic flu-like illness.
Davis, the geneticist, was part of the IOM panel that examined 9,000 publications about ME/CFS over the course of more than a year.
Davis has also been reaching out to patients who have recovered from ME/CFS. Hes asked them to send him emails about what they think they did that got them over it. But he says he received as many possible treatments as the number of emails, because patients can provide only correlational data: They usually think about the last thing they did before they recovered, but in reality the cure could be something they did two months earlier that helped them start moving in the right direction.
You would think people have done something that makes them get better. Its just possible that theyre not aware of it, Davis says. They think of it as some supplement they took, but its totally possible that theyre just not aware of what they did.
This strategy Julie Rehmeyer is using is based on the very first clue that started "The Chronic Fatigue Syndrome" -Erik Johnson
These disputes are heartbreaking when the needs of CFS patients are so great. Even the high-quality treatment I got from Klimas helped me only slightly. A year after I saw her, I heard from some patients who had significantly recovered from CFS through assiduously avoiding exposure to mold and other environmental contaminants. Although I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. Two years later, I can go running, write articles and travel with my new husband. Every time I do, it feels like a miracle
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