The Office of Special Council (OSC) published, then deleted, a press release today called “Flawed FDA Review Of E-Cigarettes And Other Tobacco Products Discouraged ‘Dissenting Voices’ On Harm“.
But wait, then they deleted it? Well, a flurry of screen shots and a couple downloads later, just below is the deleted ‘release’ from their website (It is deleted <- at that link).
***Note*** the revised 12/15/2022 release is here, and at the bottom of this blog:
The U.S. Office of Special Counsel (OSC) is “an independent federal investigative and prosecutorial agency”. Their primary mission is to “safeguard the merit system by protecting federal employees and applicants from prohibited personnel practices, especially reprisal for whistleblowing. For a description of prohibited personnel practices (PPPs)”…(Link)
The release also had two links: One being a letter to President Biden, here:
Now, I wonder, as anyone should, why those at OSC were interested in releasing this information, then compelled to delete it so quickly.
Dr. Califf has stated he wants to rely on integrity of science…
I promise each member of the FDA team and the American people my commitment to doing the best I can, relying on the integrity of science and the FDA’s continued application of science in meeting our awe-inspiring responsibilities.
Who, or what, is OSC protecting by deleting a press release? Was it premature to let it out? Will they re-release it with an edited version different from above?
We’ll see. Because if Dr. Califf wants to rely on “science” andcombat health misinformation, I hope there’s much more to the whistleblowing. Like a football game with lots of penalties.
Added 12/16/2022:
So they revised their release ‘not necessarily to e-cigarettes‘. Well huh. Above, I decided not to key on the statement that it left in the new release: “FDA scientists will still need courage to challenge a system that “discourages dissenting voices.” I wanted you to find that for yourselves yesterday… and exactly why do scientists need “courage”?
***Note*** the revised 12/15/2022 release is here:
“**UPDATED** to reflect that the substantial equivalence review process at issue applies to traditional tobacco products and not necessarily to e-cigarettes.” :
Is “public health” guided by a code of ethics? Do they manufacture fear, utilizing a ‘greater good‘ behavioral “science” theory as form of social control? Is adding ‘we can all agree’ to narrate manipulate public opinions changing health outcomes for the public at large?
Have expectations vs reality concerning what’s ‘best for you’ reared their ugly head(s)? Over time – trust, and the morality factor public health thrives on – had to come to light, eventually.
An Ethical Dilemma
Lets see if I have this right: #Science is science. Junk science isn’t science. Sociopolitical science isn’t science. Correlation isn’t science, pseudoscience isn’t ‘science’. Science-based isn’t science, behavioral science is pseudoscience, “trust the science” means there was no science, depending on someone’s interpretation, and eventually, presentation with a long silent wink of encouraged speculation.
“Their” science, and ethics should by always be questioned. Isn’t that how science works? Alas, my tobacco control math skill could be wrong, but I’ll get back to that.
Surely they all have a ‘code of ethics’ in their respective groups, but what is the standard? The definition of ‘research misconduct’ from the U.S. Office of Research Integrity is vague at best, as I point to:
(d) Research misconduct does not include honest error or differences of opinion.
Differences of opinion??? Huh. Think about that. If they ‘police themselves’, but “Hey, Bill, I appreciate your concern, but – we’ve always done it this way” is the norm, then what differentiates the norm?
I have an idea, do your jobs by properly informing consumers, displaying respect for human rights, scientific integrity, and of course, ethics. No more, no less.
Do we trust them? Even they don’t even think we do.
Theoretical rhetoric, narratives, and public opinion
Yep, you read that right. “Theoretical rhetoric“.
Last week I noticed trust in Truth Initiative, and their narratives, has fallen. Dramatically. I’m unable to pinpoint how (or when) it happened, or for how long, but I can point to a specific moment I noticed the general public has turned on Truth Initiative. (So have I, here, and here.) Don’t get me started on them terrorizing the juvenile delinquentschildren™.
I’m not unhappy about this revelation, but I’ll try not to gloat.
Definition of truth: the quality or state of being true.
I don’t pay attention to Truth Manipulative’s Facebook posts any more. I used to search them out like a crazed madman playing “whack-a-mole”. I would see the occasional familiar face on a post, but didn’t recognize anyone in this “Truth” >sponsored< post and Facebook thread. These people didn’t mention synthetic nicotine in their comments, they didn’t even mention vaping. Yet, trust seemed sparse all along the watchtower of their non-profit political front group threads.
Jim said “Keep the government out of people’s personal decisions.”
Andy said “How about if you just let people make decisions about what they want to consume for themselves?”
Ray said “Leave people alone, who made you the morality police.”
As I wandered down the rabbit hole, I found this post was also full of unfavorable comments and public opinions. Then I saw it again on this post as well.
***************************
Added 7/28/2022:
Speaking of Truth Manipulative, I cannot ruin it for you, but here’s an excerpt from Marc Gunther at Filter Mag:
“We’re not talking misinformation. We’re talking disinformation. This is willful misrepresentation of facts. It’s mind-blowing.” ~ Sally Satel (@slsatel)
My preface: The not-so-intricate connections between orgs, pseudo, sociopolitical “science” – silencing #science… and is far more important than what you’ve read thus far:
Writing this down. One of the most effective tactics of the Tobacco Control establishment has always been to fabricate a public outcry about vaping in the media when, in fact, no such far reaching public concern exists.
While drafting this blog, it seems there are some distracted tobacco control “experts” recently feeling as if they’re being intimidated, and “it disrupts their work“.
“Over two-fifths of participants reported either experiencing one or more of these more covert intimidatory tactics directly or were aware that another member of the tobacco control community had been intimidated”
Tobacco control math: 23 participants. Two-fifths. Sounds scary.
A survey – imagine – showing “Twenty-three participants from five WHO regions” had “experienced intimidation. The most frequently reported forms of intimidation were discreditation on social or traditional media“.
In typical form, ‘we’re being bullied’ from the bullies, and – in classic tobacco control generalization, suddenly an anecdotal self-reporting survey is absolute. And reliable? But vapers testimonies are not? Huh.
I say, after all these years – To see the public lose trust in the ivory tower that is “public health” in any form, stand UP and explain their disdain is a welcome sight and sound. It’s not about time to start calling them out, it’s long overdue.
The Commissioner of the FDA, Robert Califf, mentioned misinformation on February 17th of this year, and now has announced an investigation of his own agency.
Pardon my skepticism, this should turn out well under their own scrutiny, then manipulation of the findings….
— Chelsea Troy @heychelseatroy@social.clawhammer.net (@HeyChelseaTroy) July 16, 2022
Last But Not Least
As a recent guest of Son of Liberty Radio, American Council on Science and Health author, Cameron English has produced a growing list of top junk science used here.
Does it concern you that legal child abuse and terrorizing children about nicotine has become acceptable, ethical and permissible? Is convincing other children tobully and shame each other now mainstream? Is fear-based embarrassment and coercion promoted by adultssuitable for children?
The recent reported physical and mental child abuse, and terrorizing children about nicotine has me asking questions.
Oh, and it’s pissing me off.
UPDATE 3/09/2022:
Turns out they were LYING.
Now there’s a study. It states:
“However, e-cigarette use was not related to the development of depression symptoms over time.”
Are campaigns like “depression stick” belittling and stigmatizing children, who may already be dealing with depression and mental illness, a truly proactive or healthy approach? Is it acceptable to stigmatize someone who might be self-medicating (and doesn’t realize it) because they suffer from depression or other mental health issues?
What happens when non-profit political front groups lie about #nicotine, and a child, using it to cope with feelings of depression & anxiety, is pressured to stop using it, and does something drastic?
Who encourages that? Narcissists.
Contradiction Of Themselves
Truth Initiative states in 2016 here: “Nicotine is used for a number of reasons“, stating “Some nicotine users benefit from self-medication effects for alleviation of stress, anxiety, depression, and other mental health and medical conditions, including schizophrenia and Parkinson’s Disease.”
What if these kids
have food insecurities
have parents who ignore them
experienced verbal or sexual abuse
are from broken, one-parent homes
have depression, or PTSD from unknown reasons…
Have you heard “nicotine” ‘alters’ teens brains? Yeah, me too. They didn’t tell you the ‘teens’ were MICE, did they?
What about humans?
Well, put your coffee down. No?
It’s VERY clear in humans: “Preclinical models and human studies have demonstrated that nicotine has cognitive-enhancing effects, including improvement of fine motor functions, attention, working memory, and episodic memory.”
Meanwhile, nanny-state adult(s) who know all, didn’t talk with them to understand or recognize why? Instead, they’re told to stop what helps them cope… and to belittle others, because caregivers didn’t think to ask WHY they are (were) using nicotine (or any other substance), didn’t trouble themselves to seek answers to all the possibilities of underlying issues? Is this the best we can do? Really?
Promoting Bullying
At the beginning of the year, The City of Jacksonville, Florida launched a $200,000 campaign, deciding it was a healthy approach to encourage children to stigmatize, demonize, and bully other children.
Mayor Lenny Curry stated, ironically: “This isn’t about shaming young people,” said Mayor Lenny Curry. This isn’t about putting them down” and more in this article. I’ll let you decide if it isn’t about encouraging the shaming of others.
They released this video:
Exploiting Children
How about tasing kids?
This summer in Maryland, use of force on teenagers by police included one teen being tased, tackled, and hogtied by police. Another teen already on the ground was kneed by an officer.
How about photos under a bathroom stall?
In Auckland, New Zealand, a principal of a school was photographed peering under stalls in the bathroom “in order to be assured it is a healthy and safe environment for our students and staff” she said.
Still agreeable to the atrocious behavior displayed by the adults?
Would a complete misdiagnosis have occurred had it not been for propaganda?
I’ll repeat this: “There has been speculation that Kyle’s brain injury was due to a reaction from nicotine, but the autopsy showed that no nicotine was present in his system.” A child died due to deliberate #propaganda.
“Recently in Twin Falls, a teen was allegedly pulled into the office of an establishment and questioned by the owner over vaping in the bathroom.” Is this acceptable? That’s here.
“These devices are so easy to conceal, so one of the thoughts we had was, well … if they have enough metal components … would a wand work?” Carlson said.
Research shows @ParentsvsVape, @truthinitiative, & @TobaccoFreeKids sociopolitical opinions increase voyeurism, restricting bathroom access, dropping pants, brute force & tasing as socially acceptable punishments for children caught vaping by 100%.
They’ve utilized physical, psychological, sociopolitical, and psychotic measures. They’ve installed ‘vape’ detectors to try to catch those pesky 11% who have vaped once in the past 30 days, and the 3% of those kids (with allegedundeveloped brains) who actually vape daily, clearly, and quickly, have outwitted the adults.
Iowa’s Attorney General Tom Miller wrote, and I quote:
“The most intensive adolescent e-cigarette users are far more likely to also be smokers. They may potentially benefit from e-cigarette use. There is no ethical basis for ignoring public health harm reduction benefits to those under 18.”
Unpopular opinion: I am totally fine with vaping among teens. Nicotine is a performance-enhancer (like caffeine in many ways) and the fewer teens smoking cigarettes, the better for public health.They are practicing #harmreduction.
“How could the same compound associated with so much death and disease be so safe that you can buy it without a doctor’s prescription?” he asks. “The answer is that it’s about the delivery mechanism, not the drug.”
Note: The article does not say what the ‘substance’ in the illegal vape sale was. That’s part of the problem.
I’d like to congratulate Bloomberg, Tobacco Free Kids, PAVE (Parents VS Vape), Truth Initiative, Nancy Brown of the American Heart Association, Harold Wimmer of the Lung Association, and Gary Reedy of the American Cancer Society and all the subsidiaries of their non-profit political front groups who are free to turn a blind eye to the consequences of prohibition:
I’ve been searching for quite a few years for someone louder in the tobacco control and public health sectors, for a hero. Someone to correct easily repeated disinformation and outright lies. Someone with balls. Cliff Douglas notes harm reduction with precision.
In a surprising tweet, Cliff Douglas did just that. How? He released a document titled “It is Time to Act with Integrity and End the Internecine Warfare Over E-Cigarettes” in a tweet (here) on March 4th, 2021. It’s about damn time.
In dealing with e-cigarettes, he explains the tobacco control community is “letting down tens of millions of adult smokers, their families and friends”, along with “healthcare providers, and government decision-makers.”
He calls to “pursue rational, social justice-oriented approaches to tobacco harm reduction” and later states: “This is clearly a social justice issue.”
“opposition to even considering positive scientific findings related to the promise of vaping for cessation and harm reduction is widely reinforced by confirmation bias“…
Crafted with direct language to his colleagues, he’s quick pointing out valid concerns for vaping products not being ‘approved’ by the Food and Drug Administration (FDA), but states the issue is “factually separate from whether these products are in fact helping a significant number of adult users quit smoking“. That’s harm reduction.
Also discussed is the rise in cigarette sales due to a massive “negative coverage on e-cigarettes” and bans on “all flavors” in e-cigarettes because of youth use (<– that’s an important link), while ignoring adults wanting to choose safer alternatives.
Not mincing words on the 2019 “Evali” fiasco, he states: “To be clear, EVALI is caused by vitamin E acetate added to illicit THC vaping products“, adding his niece returned to smoking because of the misleading headlines.
“Stop skirting the truth when it feels inconvenient”
Is this statement from Cliff Douglas too late?
I certainly hope not. During the middle of a real health crisis – the covid pandemic, politicians are distracted by pushing for a vape mail ban to restrict access to adult consumers, and because of pubic opinion of a fake ‘epidemic‘, outright flavor bans are still being pushed to ban less smoking by politicians like Senator Mitt Romney and Congressman Raja Krishnamoorthi for products children cannot legally obtain.
Blackballing – Blacklisting
With the leadership Cliff Douglas portrays, I hope to see others willing to have the courage to speak out. I say that because fear of being shunned – literally blackballed by their professional peers for explaining data, research, and science, is a thing.
I say again, blacklisting – that’s a thing in the public health sector. I’ll let two examples from professionals – where they will turn, with vile contempt, on themselves…
In 2009, Dr Michael Siegel explained his experience of stepping out of line with the anti-smoking narrative:
“Importantly, only one perspective on this issue was presented to us in the trainings. There was no room for disagreement or challenge. These ideas were presented as scientific facts, not subject to debate. In fact, if we were to challenge the ideas, the implication was that we – ourselves – might be accused of working for Big Tobacco or receiving secret payoffs.”
Highly respected public health warrior, Dr. Marewa Glover, (Centre of Research Excellence, Indigenous Sovereignty & Smoking) – knows all too well how vindictive the community can be. After decades dedicating her life, well respected experience, the damage already done, she was eventually given an apology (here).
She also gave Patrick and I keen insight to fundamentalist anti-tobacco stigmatization – cynical optimists I call them, who use deliberate behavioral methods – to ‘help’ and manipulate smokers with cognitive dissonance, projecting a ‘spoiled identity’, “barbarian whipping school” style – on Smoke Free Radio last year (here).
What about employees of big, bad tobacco companies? Do they get their say? Well, personally, as much scrutiny as they’re always under, (and public health isn’t), I trust them way more than you might think.
Speaking of being under a microscope, Dr. Gilchrist, the head of Scientific and Public Communications for Philip Morris International… Her twitter says she’s an “Advocate for “better”. Science Lady” (who I admire and follow on Twitter):
I can think of countless times when others in the scientific community have been afraid to support us publicly – despite supporting our smoke-free vision and the evidence – because they feared for their reputation, job or funding if they were to do so.
Next, from Nicotine Policy, Neil McKeganey and Christopher Russell:
There is a real danger here of creating an academic environment in which allegation or suspicion has supplanted proof when it comes to scientific misconduct.
Like most of my regular readers, I’ve searched for – and found – a few individuals in the public health and tobacco control sectors willing to stand up, unabashedly state facts, call out the preposterous junk science, and stop the manipulation of information about vaping products.
Then they’ve been ostracized. Who wins? Certainly those valuing their pride overrides the very public’s health they’re paid by and employed to, to “protect”.
Consumers need the truth
If less smoking “at any cost”, is the “end game”, and is their only goal, they’ve done a piss poor job of trying to convince me and millions of smokers and families looking for answer(s) buried in their constant attempts to be the “popular kid” on campus spewing contrived sociopolitical and pseudo “science”. That’s not harm reduction.
My hope is this powerful statement by Mr. Douglas encourages others in all facets of leadership roles in public health, to do the same. I’ve revised my statement: “I’m for whatever works for the informed consumer. Patch, gum, Heat Not Burn, vaping, snus, acupuncture, books, hypnosis, counseling, Hale, Juul, etc. Do I “like” them all? No. It’s not about or me, or what “I” like. What may work as a choice for a consumer is first.” That’s harm reduction.
I implore EVERYONE in public health to consider what Mr. Douglas asks in his tweet below. His paper is linked for your convenience just below his tweet.
To my friends on both sides of the internecine divide over tobacco harm reduction, I'm pleased to share my brief, personal commentary calling for collaboration, honesty and integrity on the part of all stakeholders. Please feel free to share it. Thank you. https://t.co/mg3SvSNW9Y
I’ll repeat myself: If less smoking, “at any cost”, is the “end game” and is their only goal, the words in the tweet below should be used at all times. “No neighbor left behind”. That’s harm reduction.
A focus on significantly reducing the death & disease caused by smoking & other dangerous ways of using tobacco (Stuff like Indian chewing tobacco).
Basically it’s the opposite of “Quit or Die.” Seeking a better way for those struggling to quit.
I’ll paraphrase Skip Murray (I affectionately call her #CrankyOldBroad). None of this should be “us” against “them”. It shouldn’t be about who’s “winning”. It should be about helping one another. Period. That’s harm reduction.
Like my last blog, it’s a matter of public health, and it’s personal.
Let’s get to work, public health.
Added March 10th, 2021:
This is Philippines, not USA...
but gives insight to the obvious influence of “non-profit” “charitable” organizations…
“Suansing noted that in addition to receiving funds from the BloombergInitiative, the FDA also admitted to soliciting and accepting funding from another anti-tobacco and anti-vaping organization, The International Union Against Tuberculosis and Lung Disease (The Union).”
In a perfect world, this blog would never have been sitting in a draft folder waiting for the results of a diagnosis – and finding the right time to talk about it. In an imperfect world, this blog takes a frustrating journey on memory loss, my wife, and me.
I can only assume what Janice and I experienced has happened in a similar fashion to more than 6 million people. In the beginning, small incidents we brushed off were, hate the word, anecdotal.
Memory loss is typical, we’re told, as we age. Things like forgetting why she went into the room. “I must be getting old” style excuses.
Those were types of comments from her (and snarky comments from me, of course) on occasion. Laugh as we will, I reminded her – my dad called it “old-timers” disease… Not outright denial, but – Nah, couldn’t be.
1992
For background
Early in 2014, Janice worked in retail. She’d been “short” on her drawer, considerably over the $5.00 limit. Her boss -gave- her a week off while they “investigated” the shortage. While she knew there was no money “stolen”, the fact remained her till was not accurate. I wasn’t overly concerned but would find myself ultra-aware about my wife’s issues…
1992
Hey, wait a minute…
My son went with her to the grocery store she’d been going to for 15+ years. Not only did she pass the grocery store, she forgot where she was going. My son, intrigued by his mother’s forgetfulness, took great pride in telling the story. Again, one incident didn’t correlate with another, and it didn’t really – well, she’s not old enough to… Wait, brain issues??? Well, she’s too young to have a cognitive loss. Let’s press on.
In another instance, Janice took Dustin somewhere. It was mentioned she was had been “drifting” into the other lane – so much he grabbed the steering wheel to keep her in her own lane. She’d done it before. Now that’s not funny.
Suddenly, “little things” started adding up. Occasional frustration while using the microwave. She mentioned she couldn’t focus on traffic lights, looking at the one ahead rather than the one she was approaching. She’d find her chair behind her before she’d sit down…Seemingly ‘anecdotal’ things I (we) had brushed off – now deserved my dedicated attention.
Denial isn’t an objective option. Something’s going on. I (we) decided to stop her from driving. (I’ll get back to that.) We didn’t know – what we were looking for. Imaginations can and did run pretty wild…Parkinson’s? Brain tumor? Alzheimer’s?
So many questions
Fast-forwarding beyond the primary physician, a recurring question asked was “Has anything traumatic happened in [your] her life” or any “big changes”… Well, we’re pretty boring but had struggled in ways like anyone else over the years, nothing either of us considered traumatic in the sense they were looking for.
The best we could come up with was we had quit smoking about a year before… It’s at this point – I was trying to understand if it could be due to the absence of smoking (and all the chemicals) and the issue at hand. Was there a connection?
By 2015, appointments with a recommended neurologist brought multipe things – cat scans, blood tests, ultrasounds, thyroid, heart tests, electroencephalogram (EEG’s), magnetic resonance imaging (MRI’s), and led to eye tests (new glasses), ear/hearing tests, overnight monitors with cords strapped to her head to monitor brain waves (think Medusa!), and cognitive skills tests, were suddenly a partial list of our routine.
1999
Frustration
It is time-consuming, frustrating (and necessary) to figure out what is happening. Now, I’m not saying the first neurologist was behind the times, I’m just saying the equipment seemed antiquated – something that looked like it was from the 1970s.
He didn’t “find” anything, we had to keep making more appointments.
In the middle of 2015, we decided to get a second opinion to verify there was “nothing there” or found. Still, without an official diagnosis, she was prescribed Donepezil (Aricept) by her primary doctor, it immediately gave her vivid dreams and leg cramps.
I’ll be clear:
Donepezil is not a cure, and it states it does not cureAlzheimer’s disease, but it may improve memory, awareness, and the ability to function.
I’ll be more clear:
It also may NOT improve memory, awareness, and the ability to function, at least for my wife. Her symptoms remained – a lack of balance, depth perception, memory.
This is where I coined my phrase
“Treating the symptom, not the cause – is never an effective outcome.”
2011
Being dismissed
Off to a second neurologist. There was, of course, further testing (mostly the same, because the 1st neurologist didn’t want to share records with the 2nd neurologist (((WHAT???))). By the time we could be ‘seen’, it was spring of 2016.
More of the same tests were conducted, which now also included an Ear, Nose & Throat (ENT) examination for equilibrium – and a cardiologist. No unusualproblems. Fast forward for time and space, this doctor said they couldn’t find anythingphysicallywrong. Stay with me…
A recurring statement was ‘[you’re] “she’s too young” for Alzheimer’s. Janice was not in her 60’s – she had just hit her 50’s. For the vaping and smoking readers, I inquired on the 2nd visit with him about reducing nicotine and/or the possibility of her not smoking and symptoms appearing a year or so after quitting – if it were possible that…
I was abruptly interrupted with arrogance and superiority by a rehearsed condescending blowhard. I could tell… I was conversing on, and with, very thick-headed ice.
So, we were told (by two “professionals”) at this point: “She’s too young to have memory problems”. Based on her MRI’s brain scans – the second doctor emphasizedhe couldn’t see anything unusual or physically wrong with my wife, insinuating symptoms indicated a mental problem. The “problems” were “all in her head”. Still with me?
I’ll repeat that: They couldn’t find anythingphysically wrong with Janice, but of course – encouraged follow-up visits to see if her condition ‘changed’.
Wait, what? If you can’t find anything…why would I schedule…. never mind. I wonder why the medical community wonders why patients don’t trust their doctors.
My (and her) response was asking if the diagnosis was mental… Not in defense, but my natural reaction was, and I did, tell this second doctor – if I thought something was mentally wrong with her, I’d have said so and taken her to a psychiatrist. After 20 something years – I’d have noticed. But, I could be wrong.
On the diminishing trust of the “professional”, we halfheartedly took his advice and went to the psychiatrist, once. Just in case. I wasn’t ‘allowed’ in. This ‘professional’, in one visit, determined he wanted her on more medication, immediately.
We didn’t fill the prescription, we didn’t go back.
Towards the end of 2016, and distraught, we weren’t giving up, and decided on a third neurologist. Now, two have “found nothing“. Considering her age at the time of whatever this “is” started at about 50, two professionals said she was “too young to have memory problems“.
Well, not according to my accounts. Her symptoms were still a lack of balance, depth perception, memory.
One of the motor skills and problem-solving evaluation tests was re-ordered. I find this of interest because she hated the test, but we both really liked the doctor, a psychologist. He remembered us, understood our frustration, and he listened. He asked what I thought were pertinent questions. Professional inquiries, standard as with others. He also asked what it was I first noticed – to prompt us on our quest.
I thought about it after explaining a few things – forgetting to turn off the stove, the frustration of not remembering to pay a bill a couple times, driving incidents, all seemingly minor details but way out of Jan’s detailed character over the years…
One thing I thought was minor, piqued his interest. I explained we shared a computer and when I came home – the screen was always turned to one side and not straight. Kinda lopsided.
A light-bulb went off just above his head. He said it was very interesting about the depth perception…………..
Perception. Depth. Dementia… Huh. I was catching on.
With 2017 and 2018 having various tests, appointments, and guesses eliminated, we found she had diabetes. Medication takes care of controls diabetes. Also along the way, the third neurologist sent her to an eye specialist – where he found – and then did cataract surgery for her in both eyes.
Having multiple MRIs obtained, the third doctor instead, (and thoughtfully) ordered a positron emission tomography scan (PET) scan (not covered normally by insurance, and it should be). Note, dear reader, the other neurologists nevermentioned a PET scan. Once ordered, it was approved after a 2nd try because a PET scan is not, we learned, an “approved” method for determinations…(?!?!?). MRI’s were also hard to approve years ago, and now PET scans are still considered “research”.
Once approved, The doctor assured us it wouldbe definitive, and show (if any) anyabnormalities. Meanwhile, another on-site standard memory test (taken a few times already) was performed at his office by a practitioner. He got the results, and it brought him quickly into the room where he exclaimed to Janice: “You’re no longer allowed to drive”… We explained she hadn’t driven since around 2014. (Told you I’d get back to that).
The PET scan was approved – and results in December of 2019 clearly showed abnormalities consistent with early onset Alzheimer’s. That was a definitive answer. They can’t pinpoint any specific ‘stage’, but is considered: Stage 3. The definition fluctuates between 2, 3 and hovers around 4 on occasion.
“There are drugs to treat the symptoms of early and mid-stage Alzheimer’s.”
Knowing there is no cure, there are experimental drugs and studies that she can participate in, Janice decided to decline both.
Life is not without incidents, struggles, and frustrations. We were searching for, and finally found the cause of her issues. Steps for balancing diabetes, cataract surgeries, and other issues have seemed to make day-to-day life – better. I say ‘better’ with emphasis and reason. More than anything, it was a sense of relief to know. Had we dismissed these signs at the beginning, we’d be quite a few years behind for a diagnosis.
In fact, if we were just starting to notice (and possibly ignoring) things, the behavior pattern today would make me think – something might be wrong with her. Now, after more than 29 years, there are very good days, and on occasion, not so good days. In my mind, we’re about 5-7 years ahead of the curve.
Final thoughts
2018
We are relieved knowing what it is, but not relieved by what it is. What is sad is three professionals inappropriately predetermined an answer, gaslighted, stigmatized, and embarrassed my wife, then left us to search for an answer for what seemed like an eternity.
This has been a long journey from the questionable – subtle – and not so subtle – symptoms, questions, appointments, fear, testing, analysis, discovery, and diagnosis.
Jan & our Grandson
In an imperfect world, there are things we cannot control. In a perfect world, you must live your life making decisions that control what is best for you and your loved ones.
It isn’t the end. While the future may be challenging, this has been a 29+ year path of old memories – between my wife and me.
U.S. Surgeon General Jerome Adams faces charges in Hawaii after “a little bit of fun” while visiting a closed park in August with two others, violating COVID19 rules.
He “didn’t know“???
The article said Adams “didn’t know parks were closed“… but “provided a phone number” to the officer, “the same number Adams listed on an email to state officials seeking an exemption for Hawaii’s quarantine on arriving travelers.”
Interesting wording… the email – he provided – confirmed an exemption for quarantine for traveling – that included “links to rules”. Well… I didn’t see that juvenile behavior coming. Was he confused?
For some time, Adams has been pushing gaslighting the public to take personal responsiblity for stopping the spread of COVID19, tweeting “tips” such as “#COVIDStopsWithMe”. It seems he chose to ignore his ownadvice while traveling, opting for his original official statment, assuming immunity, deciding not to heed the emergency order.
Interestingly – at the bottom of the article, it states “According to the complaint, Adams put a mask on.”
He could have referenced the CDC website he linkedhere in early August about travel restrictions. (There’s a section covering “restrictions” here).He must not have thought to conduct a simple google search about Park Closure Hours. It boldly mentions, in red, at the top:
*City parks, botanical gardens, community gardens, certain park facilities, and beaches reopening Sept. 10, 2020 for individual activities in accordance with Emergency Order 2020-26.
But wait (bold/italics my emphasis), there’s more… To point out Jerry’s indifference… it says “the surgeon general was cited for accidentallyviolating the mayor’s emergency order, due to his misunderstanding of the law“.
Accidentally? Misunderstanding? Huh.
I’ll reference a quote from David Bachert:
“Well, when it happened “due to his misunderstanding of the law”, it would be best to lift the burden of the office from him, henceforth he might be able to commit himself to further studies of “the law” – or at least the content of e-mails he receives. #FireTheSG“
Covid19, and restrictions in place around the country aren’t something ‘new‘. While the city of Honolulu has issued “more than 10,000 such citations“, 2,203 were dismissed by June.
Wait, was Jerry confused?
If he’s confused, are we still expected to take his position or “advice” seriously? I’m not surprised Jerry doesn’t do his research, or that he is… well, it’s common knowledge Jerry doesn’t open emails. As much as he likes google, he didn’t take time to check?
Here’s my condensed version of just a few of Adams key sentences in a COVID19 press conference with President Trump earlier this year.
With a history of confusion, Jerry, as former Indiana State Health Commissioner – and in chargeof that state’s Tobacco Prevention and Cessation Commission, seemed stunned after reading “his own” latest Surgeon General ‘report’ on smoking. He stated “I didn’t even know until this report came out that you can add as much as 10 years, a decade, to your life expectancy by quitting smoking”.
What?
Now changed, this was his personal Twitter profile description at one time.
Do as I say, not as I do
It’s unnerving to see -0- accountability from the Surgeon General both personally and professionally, acting ‘unaware’ while misinterpreting data, science, and now laws the public he’s supposed to serve – are expected to abide by.
After breaking at least one law while sightseeing, he appeared at a news conference giving the public advice he didn’t heed himself:
“And to the people who are lapsing a little bit, I want you to understand that a little bit of fun right now can result in shutdowns further on down the road. It’s important that we all do the right things right now, even if we don’t feel we are personally at risk.”
The violation for “a little bit of fun” he mentionedreportedly can include “fines of up to $5,000, up to a year in jail, or both”.
I suggest both.
In the most basic observation of this puppet, I (rhetorically) wonder why the public health community is concerned about the public’s lack of trust in the people like Adams, who are ‘in charge’, and their inability to do their job(s) is questioned.
I’m also curious as to why Jerry didn’t take a selfie with the nice officer. I’ve repeatedly invited Jerry to be a guest on Smoke Free Radio to discuss a potpourri of subjects with Patrick and me.
To date, he has not responded.
It’s FREE, have you joined CASAA? Have you added your testimony here?
The use and consequences of nicotine have been investigated by award-winning Milwaukee filmmaker Aaron Biebert with his latest film, “You Don’t Know Nicotine“. The original release (originally scheduled to premiere in May) will premiere Saturday, September 26th.
The scenario of a full audience inside a theater can not happen, so with ingenuity, it will be shown outside, drive-in style, where social distancing can be adhered to. Following the film, there will be a “question and answer” session held with the director and possibly other members of the crew/cast.
Since the mid-eighties, anti-smoking messages of “nicotine” being addictive and evil have been around (and widely accepted) since I can remember. The most popular description of nicotine (above any other) is that it is dangerous, and “more addictive” than heroin. That’s life-altering.
What is the truth about nicotine? What is being suppressed, and why? Do we know the truth? I’m sure I cannot know everything about nicotine, but I, and the public certainly wantdeserves to know more. You Don’t Know Nicotine is about to tell the world.
What Are The Questions?
What will we learn from this film?
How addictive is it?
Does nicotine cause cancer?
What does it do to a teenager’s brain?
Are there benefits for adults using nicotine?
Good or bad, no matter what I think I know, I want the truth. So with that: I asked:
What is your goal for this film? Here’s his response.
“I want the world to know that issues surrounding nicotine affect more than just those who use it. There are many important issues being discussed right now around the world, but this topic has to be wrestled with in a more thoughtful way. We believe this movie can help jump-start that global conversation. We’re excited for people everywhere to see it.”
The fact that addiction may or may not be true is now trivial to me but I still want to know many things. Is it ‘hooking a new generation’ or is it experimentation? Is it really dangerous or addictive on its own? What, if any, are the benefits of nicotine?
I have selfish motives for supporting this film and its topic. Not really ‘public’ until now, my wife has Alzheimer’s. I know of research being done with nicotine to fight Parkinson’s and schizophrenia.
I am intrigued, and want to know if nicotine is what we’re told it is: addictive and evil. I also want to know if they are concealing or suppressing life-altering information.
I can’t tell which ‘side’ is right or wrong, and I’m not sure who’s going to appreciate the outcome of this film. With an open mind, maybe we all will.
Good or bad, I am looking forward to the findings of this film even if it may make some (including me) uncomfortable. What I expect from Aaron Biebert and his seasoned team is thought-provoking truth.
Vaping In The News covers media stories on smoking, vaping, snus, heat not burn, e-cigarettes, exposing tobacco control, public health, government, regulations, policies and more worldwide.
“The largest threat to Public Health is an informed consumer.”
Angry Vapers Force Australian Health Minister to Back Down ~ Health Minister delays ban on prescription nicotine-based e-cigarettes ~ Perverse Psychology ~ Trigger ~ HK Ban Prop Dropped ~ First PMTA from an Indie Vape Manufacturer Submitted ~ David Dorn’s “The Pleasure Principle” revisited ~ Associations of Flavored e-Cigarette Uptake With Subsequent Smoking Initiation and Cessation ~ The past is not the future in tobacco control ~ Slice & Dice | Vape Crusader Fights Toe-To-Toe | RegWatch
Angry Vapers Force Australian Health Minister to Back Down
On the 26th of January, in fast and accurate form as always, Jim McDonald breaks down the FIGHT in Australia.
If that didn’t trigger you… (Blame Michelle Minton, I warned you), I’ve made a nifty-diftly little meme for you to connect the dots from the FDA, flowing through non-profit political front groups posing as “public health”.
They’re blaming YOU in business for something THEY created – and they’re getting away with it. But, think for yourself. I’m here to help. You’re welcome.
HK Ban Prop Dropped
“It welcomed the science-based approach that embraces the concept of tobacco harm reduction”… see what Dave has to say:
Greg Conley @GregTHR at the #GFN20. See conference video. Greg is one of the most prominent defenders of vaping in the US and has appeared on CNN, Fox News & MSNBC – as well as at the White House. His talk? ‘Powerful forces not always benign’ https://t.co/73DnKq4wRO
— Global Forum on Nicotine (@GFNicotine) June 24, 2020
First PMTA from an Indie Vape Manufacturer Submitted
— Charles A. Gardner, PhD (@ChaunceyGardner) June 28, 2020
The Pleasure Principle revisited…
David Dorn, if you remember, was at the Global Forum on Nicotine in 2016. He made a speech. Now in June of 2020, Samantha below finds it, loves it, and explains it. David’s work did not, and will not, go unnoticed or forgotten as long as I’m around.
THIS is another reason I love Twitter and do what I ‘do’.
The Pleasure Principle, love it! This NEVER enters Public Health rhetoric. There is zero understanding that smokers ENJOY smoking and that ex smokers who switch to vaping, enjoy it EVEN MORE….@LegaliseVapinghttps://t.co/63oBqOi83X
Associations of Flavored e-Cigarette Uptake With Subsequent Smoking Initiation and Cessation
17,929 participants? Nice! It’s not as large as Dr. Farsalino’s largest ever found here with 69,233 participants, and submitted to the FDA as Docket No. FDA-2017-N-6565_FARSALINOS.pdf. (We’ve NEVER heard a word since that I’m aware of).
“In this study, adults who began vaping nontobacco-flavored e-cigarettes were more likely to quit smoking than those who vaped tobacco flavors.”
'Flavored' e-cigarettes = 2.3X more effective for smoking cessation than tobacco flavor. Yes.
Finally, I hope you can bear an hour and a half of listening to me with Brent Stafford of RegWatch, he invited me (yay!) on to discuss a few things… I was honored to be invited and followed a great number of people I’ve admired over the years on his show.
I want to thank Cindy Schmidt specifically for reminding me of the reason I do what I do, and the perspective and kind words she had at the beginning of the show, and for Mike Peterson’s words and of course, vapers.org.uk.
Among other topics Brent Stafford covers, are you familiar with hundreds of guests in the vaper space from consumers, industry, and public health experts appearing on RegWatch?
Vaping In The News covers media stories on smoking, vaping, snus, heat not burn, e-cigarettes, exposing tobacco control, public health, government, regulations, policies and more worldwide.
“The largest threat to Public Health is an informed consumer.”
Louise Ross: Pragmatism versus dogma ~ Global Forum on Nicotine ~ The Unlikely Savior ~ Don’t Ban Today What May Have a PMTA Tomorrow ~ R.J. Reynolds Wants Out of Historic Tobacco Settlement ~ Anti-Drug Warriors’ Crocodile Tears ~ Snus ~ Butthurt Stan ~ No Flavour Gateway
Louise Ross: Pragmatism versus dogma
A pioneer (and someone I adore) speaks at the Global Forum on Nicotine, and Clive Bates covers it:
Here’s a subtle observation about #GFN20 each year. Those claiming to be “experts” have an open invite, yet are not speaking or attending to share their ‘knowledge’.
Those experts who ARE attending & speaking? I’ve never seen ONE of them proclaim expertise.
Maybe it’s simply because smokers are already forced to be anti-social by being put in smoking areas. Maybe it’s the nicotine, or some other constituent in cigarettes… either way – I know the tobacco CONtrol and anti-nicotine crowd have (depending on where you’re from) – their panties, knickers, or shorts in a knot about even imagining nicotine has a “good place” in the world.
That’s how I like to picture them: uncomfortable, scratching their heads and picking their asses, in public.
I’m not sure how many times I’ve said this: If you are IN this industry, you MUST have working knowledge of your local (and state) representatives (and opposition). You MUST be PROactive. You MUST be JUST as concerned about THEIR concerns and answer those questions before your 3 minutes at a podium ticks quietly by on deaf ears. Certainly, out of breath – I’ve covered these and more as a consumer, HERE: Vaping Industry Trade Associations.
So this caught my eye, and you, in industry, should read it. Your business, your choice. The deadline is looming, and I’m still rooting for you.
“It is reasonable for states and localities, which can often move faster than federal regulatory bodies, to regulate tobacco products in a way that suits their constituents.”
I adore Michelle Minton. She wrote (among many things) this. This time she covers virtue signaling and disingenuous crocodile tears… from those who openly perpetuate the problem.
Just the title alone should’ve brought you this far down the page… It seems Professor Puff-N-Stuff in in need of a little ointment and of course, more funding.
Vaping In The News covers media stories on smoking, vaping, snus, heat not burn, e-cigarettes, exposing tobacco control, public health, government, regulations, policies and more worldwide.
“The largest threat to Public Health is an informed consumer.”
Ray Yeates ~ Global Forum on Nicotine ~ Harry’s Blog #101: The New Colonials ~ In the UK National Health Service, Staffers Benefit From Subsidized Vapes ~ WHO Uses World No Tobacco Day To Attack Vaping ~ Experts accuse WHO of encouraging smoking to waste more lives
Ray Yeates
The fundraiser for Ray has raised $5,627 raised of $10,000 goal. Jaye Blancher has organized this fundraiser on behalf of Ray Yeates. If you can’t donate, please share.
This is an unprecedented opportunity ***this week*** to virtually attend a meeting I’ve wanted to go to since its inception in 2014. If you can, register and join!
Scheduled to appear are a who’s WHO of harm reduction idols of mine, and likely yours. Here’s where you can register:
Vaping Links And More 