Speak Comfort to Me Jacob
This article deals with themes that some readers may find disturbing so reading discretion is advised. For those of you that continue, you will find some very good information plus exclusive access to a very damming document on the pharmaceutical industry.
Ah, Dickens’ famous “Christmas Carol.” Who hasn’t seen this classic at least once in their lives and many watch it religiously every year. One particularly poignant part is where the ghost of Scrooge’s former partner, Jacob Marley, frighteningly confronts Scrooge in the dank, dark rooms of Scrooge’s London abode.
Cowering in fear Scrooge cries out “Jacob! Old Jacob Marley, tell me more! Speak comfort to me, Jacob!” With that the ghost candidly replies, “I have none to give.”
This line echoes in my mind almost daily. Why? Well, frankly I get asked to speak comfort to someone almost daily. Despite the lull times in advocacy throughout the fluoroquinolone (FQ) community the never-ending stream of contacts by those newly or chronically floxed goes on. This last week I was averaging at least a new contact a day, either from someone who was recently floxed, had connected the dots in their long battle with health problems, or a family member of someone suffering.
Many times, the folks are scared, some half out of their wits, and almost all are asking for me to speak comfort to them.
Yes, I do feel terrible.
Yes, I do sympathize with their predicament, having been there myself.
I reach down and struggle to find what words of comfort I can, but I cannot lie. I will not. Often, like Marley, I have no comfort to give. The truth and comfort collide. FQ Toxicity aka FQAD is ugly. It’s terrible. And for some, it’s hell on earth.
While it is true that some do heal or at least gain some semblance of normalcy in their lives, the hard-cold truth is, for many, that it does not go away, or worse yet comes back after they thought it was gone. I am so sick of seeing this happen to good people. This is why I maintain this website as opposed to just walking away.
You see, I have learned enough about this condition, for myself. I have made enough contacts and know enough about my own health problems brought on by FQAD to walk away for good.
But then comes along one more, another victim, shocked and reeling, wondering how this could have happened to them. From doctors to average folks, they come looking for answers, directions, and comfort. Some answers I do have and I can usually point them in the right direction. Comfort on the other hand, that is a hard one to sell. What do you tell someone who just ruptured both Achilles tendons, or worse yet is showing sign of severe neurological trauma? I can express my sorrow and show brotherly love, I can share statistics, but I cannot promise them that it will be okay; that everything will be alright. Again, some heal, some don’t it is the nature of this tragedy.
What makes this a tragedy of epic proportion is that it is hiding in plain sight. How one of the most commonly prescribed antibiotics is undermining the health of the world. And no one suspects, UNTIL it is too late and happens to them or a loved one.
Maybe We Should Just Remove Them
I used to be a proponent of allowing the FQ’s to remain on the market. To allow them to be used in institutionalized setting with informed consent in life or death situations. But responsible use of the FQ’s is eluding us and is nowhere on the horizon.
Take Levaquin for instance, it is still massively prescribed, with doctors doling out 32 million prescriptions for the drug only in the US in 2015 (1). Despite warnings and a admirable and loud outcry, the prescription rate only dropped about 10% in 2016 (1), with around 30 million still be dolled out.
“It turns my stomach,” as John Wayne used to so powerfully say.
On my website, My Quin Story, I have a small poll in the right hand column that asks, “Were you previously Floxed, thought you recovered, only to have symptoms reappear later?”
Of the respondents so far 91 people or 96% have answered yes, while a mere 4 or 4% have answered no. To be fair, the website deals with those chronically impacted by the FQ’s, but I get my fair share of the newly floxed as well. I am sure the numbers will change but you get the general idea. People’s live are being permanently altered.
The Crux of the Problem
One of the most damming documents I have read in a while comes from the Journal of Law, Medicine and Ethics from 2013. The article is titled “Institutional Corruption of Pharmaceuticals and the Myth of Safe and Effective Drugs.” The three authors are from Harvard, Rowan, and York Universities. The title speaks for itself but let me quote the introduction, “Institutional corruption is a normative concept of growing importance that embodies the systemic dependencies and informal practices that distort an institution’s societal mission. An extensive range of studies and lawsuits already documents strategies by which pharmaceutical companies hide, ignore, or misrepresent evidence about new drugs; distort the medical literature; and misrepresent products to prescribing physicians. We focus on the consequences for patients: millions of adverse reactions. After defining institutional corruption, we focus on evidence that it lies behind the epidemic of harms and the paucity of benefits.” (2)
The “paucity” of benefits. In other words, an epidemic of adverse events versus few benefits.
Documented in this paper is the shocking statistic: 30 Adverse Drugs Reactions occur for every one that leads to hospitalization. About 81 million side effects are currently experienced every year by the 170 million American who use pharmaceuticals. (2)
One of the authors Donald W. Light, from the Edmond J Safra Center for Ethics and Harvard University, also wrote an article in 2014 entitled “New Prescription Drugs: A Major Health Risk With Few Offsetting Advantages.”
In this article he writes, “The pharmaceutical industry refers constantly to its “R&D pipeline” of new drugs under development. But there is a second, parallel pipeline—the trial-journal pipeline. It consists of randomized clinical trials designed with the marketing departments to produce evidence that their drugs are more effective and safer than unbiased trials would show. Commercially funded clinical trials are at least 2.5 times more likely to favor the sponsor’s drug than non-commercially funded trials. The FDA accepts these biased trials and uses them to approve drugs.” (3)
While some of us in the FQ community are resting on our laurels there is the silent pushback happening against our meager strides forward.
Despite our communities’ valiant past efforts, I, and a few others, have noted that the term FQAD (Fluoroquinolone Associated Disability), which was coined by the FDA on November 5, 2015 is being slowly redacted across the Internet.
In addition, you remember those commercially funded clinical trials that Donald W. Light mentioned above? Here is one sponsored by Janssen Research & Development, LLC to study FQAD.
They are going to study participants who were exposed to an oral fluoroquinolone (FQ) with an occurrence start between 2007-01-01 and 2015-12-31 (inclusive) and are between 18 and 65 years of age (inclusive). Participants exposed to an oral FQ will be observed. The oral FQ included are Levofloxacin, Ciprofloxacin, Moxifloxacin, Ofloxacin, Gemifloxacin. Participants will not receive any intervention as a part of this study.
The official title of the clinical trial is: Fluoroquinolone Associated Disability
The Study runs from May 17, 2018 through July 21, 2018
Let me make it clear that I believe the purpose of this study is to disprove FQAD. It is to pushback against the FDA’s acknowledgement and coining of the phrase “FQAD”.
Remember “Commercially funded clinical trials are at least 2.5 times more likely to favor the sponsor’s drug than non-commercially funded trials.”
Beatrice Golomb at the University of California, San Diego, says that investigating medication that has been on the market for years isn’t a priority for research agencies, and scientists are reluctant to publish results that drug companies might find unfavorable. (1)
There’s a long history of adverse action against people who expose drug and chemical harms,” says Golomb. (1)
Where Does That leave Us?
The detractors are out there, and they are many. From the pharmaceutical companies that spend untold millions to dissuade through tacitly controlling research and phraseology, and formulating the very thought process used by the medical establishment, to websites that ‘candy coat’ the reactions by focusing away from the ugly truth. Using dismissive phraseology and denying the ugly reality is both a misrepresentation and an insult while there are people at risk or suffering. It plays right into the hands of entities that want to continue to roll in the obscene profits and shields those who do not want to look at the actual horror that is ruining human lives.
I have already been asked, on more than one occasion, to ‘tone it down.’ To present the FQ’s in a more favorable light. To not tell the truth as I see it.
Let me throw in a caveat about hope. I believe in hope and find my solace and meaning through Christianity. I will not however lie. Lying sets up people for further disappointment and prevents changes from ever happening by downplaying the ugly truth.
Our politicians and law makers must see the ugly truth in order to enact change. If they believe things are ‘not that bad’ they will not have the impetus to enact change.
In the mean time you have a duty to warn. If you are reading this for the first time remember, the FQ’s are indiscriminate in their ability to damage the human body in numerous ways from metabolic to genetic. For many these drugs are the difference between good health and bad. They have the ability to manipulate our genes via epigenetic changes and direct DNA interaction. There are NO ways to determine who will have an adverse event to these drugs and there are NO ways to determine how severe or long lasting an adverse event will be.
The best defense is information. Often, there is a safer alternative. So, do yourself, your friends, and your loved ones a favor, become informed.
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