ALSUntangled prevents ALS cure by disinfo for profit?
ALSUntangled is a group of people funded by companies with a strong financial interest in developing and marketing symptom-relievers for ALS. ALSUntangled also accepts money from the Robert Packard Center, which in turn gets their money from the public.
In addition to that funding, donations flow out of the pockets of (deceased) ALS patients and into the pockets of an organization that plans to make money with symptom relievers for ALS or "find a cure", but nothing of substance, nothing that brings a cure closer has ever been offered in return for the countless millions donated, and it is now very clear that this will never change, because ALSUntangled, the "medical voice" of the organisations leeching off donated money has been forced by us to show their true colors publicly, which they did in Amyotrophic Lateral Sclerosis, 2012; 13: 487-491 in an article purporting to debunk our (free) eBook entitled "When ALS is Lyme", showcasing a plethora of varied evidence that many cases of classical ALS are caused by Lyme disease. Instead of refuting our arguments, ALSUntangled employed various fallacies and ad-hominems and concluded with: "ALSUntangled does not recommend Lyme testing for patients with classical ALS". The bottom line here is that in spite of overwhelming, undeniable proof that at least some cases of classical ALS are caused by Lyme neuroborreliosis, ALSUntangled prefers those pALS just to die. And they certainly don't want to test them for Lyme, God forbid - it may even turn out that we were right and they were wrong! The folks at ALSUntangled say that our book "fails in its attempt to argue that there is a connection between ALS and Lyme disease". And they certainly are not going to help us prove them wrong by endorsing a cheap Lyme test that may be the first step of a cure for a deadly disease, no sirree!
Whenever there is Big Money flowing into an organization, the people in that organization, the recipients of that money, will work to maintain the status quo. The Packard Center's officers appreciate your money, and they trickle some of that cash to any self-proclaimed ALS expert willing to support their activities and opinions. You scratch my back, I'll scratch yours. There is plenty of dough to go around, and let's not kill the goose that lays the golden eggs! (a cure for ALS would be exactly that).
The Motor Neurone Disease Association is another sponsor of ALSUntangled. The aim of the MNDA is "A world without ALS". In 2012, they received 12,715,265 pounds in mainly legacies and donations but only a tiny fraction of that, a small single-digit figure went into sponsoring research into a cure. Their financial statement for 2012 shows 788,080 pounds allocated for research, while the total cost of fundraising is nearly five times higher. The people raking in the millions are the fundraisers, while ALS research gets the crumbs that fell off the table: 788080 pounds is barely 6% of their total income!
ALSUntangled's most emphatic argument is that we are "conspiracy theorists". They wipe nearly two hundred pages of well-researched material off the table, a book solely about the ALS-Lyme connection with hundreds of footnotes to medical research and supporting evidence, a book highlighting dozens of cases of people with ALS diagnoses who greatly improved or even fully cured on antibiotics, a book full of new insights, hitherto unknown facts and many dozens of real-life cases that support our conclusions - not to mention hard scientific evidence - but ALSUntangled says we can safely ignore all that because we're just a bunch of kooks after all. And we're crazy, you see, because we believe crazy things, such as ALS being sometimes caused by Lyme disease. That's clearly a lunatic fringe opinion, otherwise the ALS experts would agree with us, right? And therefore we must be wrong and thus conspiracy theorists.
Falsehoods in ALSUntangled's "debunking" attempt of our free eBook "When ALS is Lyme":
1. They falsely claim that we are liars. They say that we wrongfully accused them of keeping their site registration anonymous, so that noone can find out who is running their organisation. They claim that their contact person is mentioned on http://www.whois.net/whois/alsuntangled.com. This is untrue, there is no such information:
However we found out that the Duke ALS clinic owns the site, and they want your money: http://www.dukealsclinic.com/you_can_help.shtml
Interestingly, this multi-million dollar corporation claims: "We start by confirming the diagnosis and excluding ALS mimics". This is a lie, because in their "debunking" article, ALSUntangled says they advise against Lyme testing for ALS patients! That clinic appears to be in business to diagnose as many people with ALS as possible, so they can make as much money as possible off them: "Just wanted to update everyone on our visit to the Duke ALS clinic. It was a very long day and my husband actually gave out before the Duke clinic did. Dr. Bedlack and his staff are awesome. Of course one final EMG was the slam dunk for my husband's ALS diagnosis. The doctor basically took a few more vials of blood on the 1% chance that it could be anything else and to do the test for a genetic link. We left with a definite ALS diagnosis and about 9 prescriptions, one for the Rilutek medicine and the others for equipment."
It is of course in the vital business interest of an ALS clinic that ALS is incurable, and of course, when it turns out that many cases are caused by Lyme disease, that would be a severe dent in their cashflow. We did not start the allegations of financial motives - we remind the reader that ALSUntangled accused us first of having financial motives in fabricating a Lyme-ALS link.
2. They claim that our website with our free ALS-Lyme eBook is a "marketing" website, they imply that we have financial motives to deliberately spread false information on ALS in order to gain financially from it. However, anyone can verify that absolutely nothing on als-cure.com and absolutely nothing in the book is selling anything, endorsing any product, linking to any product or trying to commercially benefit from anyone in any possible way. The reason we wrote the book is to create more Lyme-awareness, the main author being a neuroborreliosis patient herself. The fact that ALSUntangled clearly knows that their accusation is maliciously slanderous makes everything else they say suspect.
3. They accuse us of being "conspiracy theorists", because so many doctors can't possible be wrong, right? So that must mean that we are alleging a vast conspiracy, right? No - we wrote in our book that it's simple inertia that keeps medical dogma firmly in the saddle. No conspiracies required, the problem simply is that medical doctors are overworked bureaucrats, not scientists. ALSUntangled calls the hypothesis that MS is caused by Lyme disease a conspiracy theory, yet the distinguished microbiologist Judith Miklossy has published studies that give compelling evidence to this. She, and many other microbiologists. Who are ALSUntangled to dismiss legitimate peer-reviewed research as "conspiracy theories"? That word returns frequently in their debunking article. "Conspiracy theories" is usually used by those with an opposing view when they lack arguments.
4. They claim that their absence of evidence implies the evidence of absence. This is one of the simplest logical fallacies that doctors should know to avoid, but often do not. The fact that they commit this gross violation - let's call it rape - of logic shows that their hatchet job is intended for the general public and ALS patients in particular, not people in the medical profession or any other scientific discipline. They certainly do not have a high opinion of the logical reasoning faculties of ALS patients when their first paragraph commits one of the most blatant offences against logic and common sense.
5. They belittle our book that took months to research and write. They call it a "manuscript". A manuscript is always handwritten and therefore usually much less substantial or accurate than a book; it is commonly understood to be a first rough handwritten draft for example. Calling a book with around 170 pages, hundreds of footnotes to supporting material and a ISBN number a "manuscript" is one of the many cheap tricks ALSUntangled uses to convey contempt without legitimately addressing the substance.
6. They set up a straw man. From their article: "First, the Vaughters state that PALS have generalized brain damage including cognitive changes, and that those patients with Lyme disease also have generalized brain damage and cognitive changes. They go on to conclude from this "therefore most ALS patients have classical symptoms of neuroborreliosis" . This is one of many examples of flawed logic that appear in the manuscript."
This is just plain nonsense. All we did was draw attention to the fact that contrary to what the self-declared ALS "experts" tell you, ALS is not restricted to motor neurons. In fact, the neuronal damage in ALS patients is diffuse and therefore the favorite excuse of neurologists to deny PALS a Lyme test, namely: "We don't see Lyme-specific damage, this is classical ALS" is totally bogus and this is now an undisputed medical fact and we substantiated that. We never said "Because dogs have hair and cats have hair too, cats are dogs".
7. They cite studies of doctors that we exposed as controversial researchers as evidence for their claim that we are wrong. We refer to their reference (5) by Halperin. That is like saying: "Stalin wasn't a scary dictator - he himself says so!". Halperin is merely trying to cover his ass, for lack of a better expression. He once submitted an editorial with the title "enough is enough" saying that chronic Lyme patients should not be given antibiotics, and that he advised against doing medical trials with long-term antibiotic treatment for chronic Lyme disease. Of course, if his own research later shows that Lyme will progress into ALS, it means his previous stance on the treatment of chronic Lyme disease - namely, to withhold treatment - would make him at least ethically responsible for the death of countless people. Mr. Halperin has a political agenda to defend. The agenda of "Chronic Lyme disease should not be treated". We can only guess why. It can be that he is in bed with insurance agencies, it can be that he's trying to prevent malpractice lawsuits, it can be that he simply is not the brightest bulb in the box. Many explanations are possible, but anyone can see that when nearly all ALS patients in a study test positive for Lyme, that this is relevant and not a coincidence. For some reason, there is not a single neurologist in the Western world that dares to take Neuroborreliosis seriously. Syphilis, a closely related brain infection, is treated with years of antibiotics. Lyme is not.
8. They make false claims about Lyme disease to support their "debunking". One such false claim is that 90% of Lyme patients report a rash. This is a completely fictional number. The real number is much lower and in addition to that, most Lyme diagnoses are infamously conditional to the patient reporting such an Erythema Migrans, which is a scandal by itself.
ALSUntangled has trouble with logical thinking, and instead of debunking our points, they are reinforcing them. We argue that some ALS is caused by Neuroborreliosis that has not been diagnosed as Lyme disease because a sizeable percentage of Lyme patients never gets or sees any type of skin rash. ALSUntangled: "ALS patients rarely, if ever, report a skin rash". Duh! If they had reported an Erythema Migrans rash, they would not have been diagnosed with ALS in the first place!
9. They lie about the Kelly AFB case of more than 100 ALS cases. Our point is that there were a huge number of ALS cases there, and that the US military covered that up. ALSUntangled (paraphrased): "The military supports ALS patients, it's just that the 100+ Kelly AFB's casualties were not ALS". So in spite of overwhelming evidence to the contrary, ALSUntangled sides with Kelly AFB and not with the over one hundred ALS patients that worked on that base. That's not very helpful for those 100 PALS, ALSUntangled!
10. They slander Dr. David Martz, a medical doctor diagnosed with classical ALS but who, after many flawed Lyme tests that weren't worth the paper they were printed on, finally got a proper test (antibiotic-provoked), tested positive, was given a too low dose of antibiotics, nothing happened, then took a double dose for a very long time and he got fully cured of his ALS. ALSUntangled states that Dr. Marz probably lied about having ALS so that he could peddle ALS cures (something he never did). Yes, they really went that low in an attempt to sweep the evidence under the rug!
11. One fool can ask more questions than ten wise men can answer, and ALSUntangled has done something similar: They crafted a wall of dense, intelligent-medical-sounding prose, purporting to "debunk" our book. It is clear they spent a lot of time on it, and the number of falsehoods per paragraph is so great that it would take us much more time to counter-debunk their article than they spent writing it, which just isn't a productive use of our time because we're working on two more books, one on Alzheimer and Lyme (concomitant in approx. 25% of cases) and one on MS and Lyme (nearly 100% of cases). Just read our free books and our article on MS and Lyme, perhaps also read the material linked to in the footnotes and judge for yourself. We are glad to make people aware of a proven link between Lyme and ALS, and if we weren't making a difference, the established order would never have gone to such great lengths to smear us and our work. It is not us with a financial interest in preventing ALS patients from knowing that Lyme can cause ALS - it is ALSUntangled.
CRIMINAL PROSECUTION OF THE PEOPLE BEHIND ALSUNTANGLED?
No amount of rank-pulling by ALSUntangled (their article mentions a large number of names associated with them in an attempt to get more credence for their debunking claims) and no amount of namecalling and allegations from them against us will change the truth that they have a financial interest in not testing possible ALS cases for Lyme. Let's remember those names. These people are now all on the record as being against Lyme testing for ALS patients. If a single ALS patient dies and an autopsy finds Bb s.l. in their brain, those people have blood on their hands. We urge the relatives of deceased ALS patients to let an independent pathologist do dark field microscopy and PCR testing on the affected brain tissue and, when sufficient evidence has been gathered, we encourage a class action lawsuit against ALSUntangled and all people whose names were used to support the article. Because they have been informed by the material in our book, yet they chose to go on the record saying it is all bunk and Lyme tests should by no means by performed to exclude Neuroborreliosis as the cause of signs and symptoms (about to be) diagnosed as ALS. That makes them culpable when an ALS patient dies of Lyme disease and this patient has not been Lyme-tested as a result of their stubborn public refusal to acknowledge the facts. It is time that the medical profession is held to account. We do not forget and we do not forgive the suffering you have caused and will cause to Lyme patients and their loved ones worldwide! One day you may be held personally accountable. Laws may change when sufficient political, legal, grassroots patient-advocacy and journalistic pressure is exerted. You may not remain immune to prosecution forever. Blatant disregard of medical facts leading to the slow paralyzing death of people is a sign of psychopathy, should of course be a criminal offense, and the only suitable punishment is a life sentence in prison, preferaly doing hard labor, the proceeds of which donated to the families of deceased Lyme patients who have been misdiagnosed with ALS. You understand full well that even if only a small percentage of Neuroborreliosis manifests itself with ALS symptoms, that you are condemning those people to death. You accept those deaths, because it keeps ALS "its own disease" and you the masters of it, carving out a profitable niche as "experts" in yet another lethal neurological syndrome with unknown cause or cure.
We stress that our books are free, have always been free, will always remain free, do not contain product endorsements or advertizing of any kind and do not contain links to products, services or advertizing of any kind. The books are published on sites totally separate from any of our commercial activities, because it is our commercial activities that allow us to spend months on writing free books, not the other way round. Why are we banned from posting on all major ALS forums? Why are neurologists so insistent on preventing a proper Lyme test (antibiotic-provoked Igenex PCR) being done on people with ALS symptoms? 85% of ALS diagnoses in the US are done without ever having done a Lyme test. This figure is admitted and defended by US neurologists and I link to the source of this figure in my free PDF.