Desperation, Science, Charlatans and Alternative Treatments

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Well, I close by saying that medical quackery in any form that it takes is absolutely harful an dangerous and should be dispelled immediately.

Sincerely,
longshot.

Can confirm the above quote .
Have seen and been victimized often by this quakery aswell . In several different fields , medically and even financially . And have suffered in unexpected ways in lifelong ways .That I had no intial knowedge of . Due to lack of experience and education that i was relying on the so called ,professionals to help with .

There is no real vaccines/autism controversy. The evidence is in. The scientific community has reached a clear consensus that vaccines don’t cause autism. There is, however, a manufactured controversy created by junk science, dishonest researchers, professional misconduct, outright fraud, lies, misrepresentations, irresponsible reporting, unfortunate media publicity, poor judgment, misguided celebrities who think they are wiser than the whole of medical science, and a few maverick doctors who ought to know better.

Thousands of parents have been frightened into rejecting or delaying immunizations for their children. The immunization rate has dropped, resulting in the return of endemic measles in the U.K. and various outbreaks of vaccine-preventable diseases in the U.S. Herd immunity has been lost. The public health consequences are serious
and are likely to get worse before they get better -- a load of unscientific nonsense has put us all at risk.

Industry has a corporate conspiracy . . .

Anyone who cites off-the-wall 'research' posted in a third-rate tabloid website is no friend of mine, either.

Facts do not care about feelings. There are several obvious corporate conspiracies, the aluminum one which I mentioned earlier, there is/was also a fiberglass conspiracy to downplay the effects of fiberglass insulation, as well as a Tobacco conspiracy to the point where even medical doctors were recommending cigarettes'. Its naive to assume corporations actually have a soul and will use that soul to put people above profits, tell that to all the clothing manufactures that outsource to sweatshops.

We live in the same society that hid the cure to cancer for 40 years and you expect people to not believe in conspiracies "just because"? Why, because fakestream media and fake news shames conspiracies?
https://www.youtube.com/watch?v=Ro8C75XykLo


Emotional blithering is not an argument... still waiting for an actual debate.

Well, that's liberty: people have a right to embrace irrationality, preach it, not give a crap about collective problems and ardently profess their rebellion against those who try to curtail their freedom in the name of science or the common good (like herd immunity).

A family from Texas is spending two weeks in New York to give their son who has autism therapy they say isn't available near them.

The therapy that 10-year-old James DePauw will receive is all in thanks to a local nonprofit.
James DePauw was diagnosed with non-verbal autism. His mother, Laurie DePauw, describes her son as a “sweet, loving little boy.”

"Children that have these disabilities can engage in unusual behaviors or behaviors that aren't entirely helpful. It's a lot of having to keep close supervision from the child," Laurie DePauw said.

The two-week intensive therapy program at The Melillo Center for Developing Minds is being paid for by Watermark for Kids, a national nonprofit associated with Watermark Retirement Communities.

The therapy involves brain development and stimulation, a therapy Laurie DePauw says isn't available close to their family and will consist of 20 sessions.

Four members of a Florida family were convicted Wednesday of selling a toxic industrial bleach as a fake COVID-19 cure through their online church.

A federal jury in Miami found Mark Grenon, 65, and his sons, 37-year-old Jonathan, 35-year-old Joseph and 29-year-old Jordan, guilty of conspiring to defraud the United States and deliver misbranded drugs, according to court records. That charge carries up to five years in prison. Their sentencing is scheduled for Oct. 6.

The Grenons represented themselves but declined to speak during the two-day trial, the Miami Herald reported. After the jury delivered its verdict, Joseph Grenon said they would be appealing.

Prosecutors called the Grenons "con men" and "snake-oil salesmen" and said the family's Genesis II Church of Health and Healing sold $1 million worth of their so-called Miracle Mineral Solution, distributing it to tens of thousands of people nationwide. In videos, the solution was sold as a cure for 95% of known diseases, including COVID-19, Alzheimer's, autism, brain cancer, HIV/AIDS and multiple sclerosis, prosecutors said.

What the Grenons were selling was actually chlorine dioxide, officials said. When ingested, the solution becomes a bleach that is typically used for such things as treating textiles, industrial water, pulp and paper, according to the Food and Drug Administration, which warned drinking it could cause dangerous side effects like severe vomiting, diarrhea, and life-threatening low blood pressure. Authorities said it is the same as drinking bleach and can be fatal.

Authorities said in July 2022 that they had received reports of people requiring hospitalizations, developing life-threatening conditions, and even dying after drinking the solution.

A Miami federal judge ordered the church to stop selling the substance in 2020, but that was ignored.

Besides the fraud convictions, Jonathan and Jordan Grenon were also convicted of violating federal court orders requiring them to stop selling Miracle Mineral Solution in 2020. U.S. authorities agreed to drop those same contempt charges against Mark and Joseph Grenon as a condition of their extradition from Colombia.

In the indictment charging the family members, authorities alleged that they were using Genesis II Church of Health and Healing, an entity they described as a "non-religious church," to avoid government regulation of the solution and to protect themselves from prosecution. The mineral solution could only be acquired through a "donation" to the church, but donation amounts were set at specific dollar amounts and were mandatory, the indictment said.

Thomas VanCott compares his son Jake’s experience with autism to life on a tightrope. Upset the delicate balance and Jake, 18, plunges into frustration, slapping himself and twisting his neck in seemingly painful ways.

Like many families with children on the autism spectrum, Jake’s parents sought treatments beyond traditional speech and behavioral therapies.

One that seemed promising was magnetic e-resonance therapy, or MERT, a magnetic brain stimulation therapy trademarked in 2016 by a Newport Beach-based company called Wave Neuroscience.

The company licensed MERT to private clinics across the country that offered it as a therapy for conditions including depression, PTSD and autism.

Those clinics described MERT as a noninvasive innovation that could improve an autistic child’s sleep, social skills and — most attractive to the VanCott family — speech. Jake is minimally verbal.

It was expensive — $9,000 — and not covered by insurance. “It’s too much for most things,” VanCott said, “but not for the potential of my child speaking.”

“It just did nothing,” Thomas VanCott says of the $9,000 MERT sessions his son received.

After raising money through GoFundMe, VanCott met with a doctor at a New Jersey clinic who described how MERT would reorganize Jake’s brain waves. VanCott does not have a scientific background, and the technical details went over his head. What he had was a severely disabled son he was desperate to help.

The doctor “seemed pretty confident. And his confidence gave me confidence,” VanCott said. “It made me think, tomorrow Jake’s gonna wake up and say a sentence.”

“There’s also a lot of pressure put on parents,” said Zoe Gross, a director at the Autistic Self Advocacy Network, a nonprofit group run by and for autistic adults. “People will be saying things like, ‘Time’s ticking, your kid’s missing milestones … you have to fix it now.’”

One therapy that often surfaces in Google searches, social media groups and word-of-mouth discussions is MERT, which is based on a brain stimulation therapy approved by the Food and Drug Administration for depression and obsessive-compulsive disorder.

Clinics offering MERT sell it as a “safe and effective treatment for autism” that yields “miraculous results” for kids on the spectrum.

Most compelling to many families is an oft-cited marketing claim that research has shown MERT to improve speech and eye contact in a majority of autistic patients, research that several clinics attributed to Wave.

The Times spoke to parents who said MERT caused positive, lasting changes in their autistic children’s sleep, communication and concentration.

Other parents told The Times they saw only minimal changes in their children’s behavior. Many, including Thomas VanCott, saw no changes at all. “It just did nothing,” VanCott said. And a few saw worrying behavioral regressions that persisted long after the therapy ended.

All remember being told by MERT providers that while results weren’t guaranteed, many patients saw positive results. When the dramatic changes they hoped for didn’t happen, these families left believing they were unlucky. Without quality data, it’s impossible to know if any of these outcomes are outliers or typical patient experiences.

Wave has not conducted any studies on whether its signature product works for autism. A Wave executive argued that the need for new autism therapies is strong enough to justify moving forward with commercial solutions before rock-solid evidence is available.

“Academics pointing towards insufficient evidence for clinical adoption may not represent a true reflection of clinical utility in a population where there are very few therapeutic options, great suffering, and a willingness of physicians and patients to seek innovative treatment choices with diligent clinical care and oversight,” said Dr. Erik Won, Wave’s chief medical officer.

For many parents, even a small possibility of a life-changing breakthrough is worth any price. Although some families have reported benefits from the treatment, no large scientific studies exist that show MERT is significantly better than a placebo, according to nine psychiatrists, psychologists and neuroscientists with expertise in brain stimulation and autism.

MERT is Wave’s trademarked version of a therapy called transcranial magnetic stimulation. The product of decades of research, TMS is approved by the FDA to treat major depression, OCD and cigarette addiction.

It is also used to treat conditions for which it is not FDA-approved, in what’s known as “off-label” prescribing. Off-label use of drugs and devices is a common practice in medicine.

Clinics offering cash-pay TMS for a variety of off-label conditions, including autism, have proliferated in recent years. MERT in particular has become especially popular among families with autistic children.

MERT patient first sits for a 10-minute quantitative electroencephalogram, a noninvasive test that measures the brain’s electrical activity, and an electrocardiogram, which gauges electrical activity in the heart.

Results are then analyzed by Wave’s proprietary software. If its algorithm identifies “areas of the brain that are not functioning properly,” clinic providers will recommend a protocol of TMS-style treatments. In these sessions, the provider places a magnetic coil against the patient’s scalp that emits a gentle electromagnetic pulse. Sessions typically last about 30 minutes and are administered five days a week, for two to six weeks.

Won, Wave’s president and chief medical officer, said the goal is “to help the brain function most efficiently as an organ. And the hypothesis was, if we improve the metabolic efficiency of the brain, would we see some changes in a variety of different medical conditions?

“As we sort of tested this, there was a realization: Wow, we can do something pretty special for autism,” he said.

A six-week course of MERT — the standard protocol Wave recommends for autistic patients — typically costs $9,000 to $12,000, families and clinic owners said, and is not covered by insurance.

MERT was originally developed as a therapy for post-traumatic stress disorder and traumatic brain injury. Since Wave’s inception in 2019, it has described military veterans as its primary patient demographic.

Wave is in Phase II of a clinical trial to test MERT for PTSD, Won said. The company has not conducted any clinical trials on autism.

“The strategic decision to focus on PTSD was largely dictated by market factors,” Won said. He added that his company is dedicated to helping those with autism and is working to obtain funding “for further studies and ultimately an FDA indication.”

Dr. Andrew Leuchter is the director of UCLA’s TMS Clinical and Research Service, which has provided FDA-approved and off-label treatments to more than 1,000 patients.

Given its solid safety profile and effectiveness at treating other complex brain-based disorders, Leuchter said that he and many other TMS clinicians believe the therapy could have benefits for conditions other than the few for which it is FDA-approved.

When a patient approaches the clinic seeking treatment for an off-label condition Leuchter believes could be helped by TMS, the psychiatrist reviews the case with his colleagues. If they decide to proceed, he explains to the patient that the efficacy of TMS for their condition isn’t proven, though there is reason to believe it is safe and effective.

But when parents call asking whether he can treat autistic characteristics such as sensory challenges, minimal speech or lack of eye contact, Leuchter says no.

“Off-label treatment can be just fine so long as there’s data to support this and the risks are low,” he said. For autism, he said, “the evidence base is not very strong. … And I don’t think that there is sufficient evidence to recommend the use of TMS for the treatment specifically of autism.”

Multiple researchers are currently examining whether TMS could improve certain symptoms of autism. But eight researchers interviewed for this article said there isn’t yet enough evidence to recommend TMS as an autism therapy, or to say with confidence that it works for that condition.

Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health, published a paper last year summarizing the current state of research on TMS and autistic children. Nearly all published studies on the treatment to date have been very small, open-label (meaning both patients and providers knew which treatment they were receiving) or focused on a very specific subgroup, she and her co-authors wrote.

Without large, randomized controlled trials — the gold standard in medicine — “broad off-label use of these techniques in this population is not supported by currently available evidence,” the paper concluded.

Won acknowledged that the company has so far not pursued such research on MERT and autism.

“We owe the community some academically rigorous science,” he said. “This is not going to be a panacea. I don’t want to misrepresent anything to the parents who are making these difficult decisions. But for a subgroup, this is clearly something that’s leading to a response.”

Medical research moves far more slowly than most patients and their families would like, and many are willing to try experimental therapies long before researchers and regulators are ready to sign off on them.

“When you’re a parent of a child and you think that this can help, it’s like, FDA be damned, right?” VanCott said. “If I think it’s gonna help my kid, I want to do it.”

Wave’s provider directory now lists more than 60 U.S. licensees and an additional 18 internationally. More than 400,000 MERT sessions have been administered to more than 20,000 people, according to the company.

Won said Wave does not maintain comprehensive data on patients treated at licensee clinics. In an interview, he estimated that about half of these patients were seeking treatment for autism. He later said that 20% to 30% was a better estimate.

Although some clinic owners said they treat few autistic children, staffers at multiple facilities told The Times that most or all of their patients were autistic.

To pay for the procedure, families have used savings or turned to crowdfunding. Others placed the treatment on credit cards. Their experiences vary widely.

Something that was once promoted for autism has been found to have amazing health benefits.

Saw a talk where a scientist reduced his biological age by 10 years after a few weeks in one of these chambers.

Not saying its any use for autism, just that its funny how these Dr`s contradict each other

Texas family travels to New York for life-changing autism treatment


His website
Shady as hell. This "center" is one office. You don't treat level 3 type autism in two weeks.