Censorship: The uphill struggle for ALS-Lyme awareness
I have been kicked off alsforums.com, the largest ALS forum on the web. My transgression? I was giving away copies of my free eBook "When ALS is Lyme". The book presents peer-reviewed published medical research, my own original research, anecdotal evidence from scientists, patient blogs and forum postings to make the case that a significant percentage of ALS cases is caused by Lyme disease. I worked for months on that book, and I think it could be instrumental in helping to save the lives of quite a few "Lymies" misdiagnosed with ALS. Or, if you will, of quite a few ALS patients who have received the wrong diagnosis.
I was prepared for hostility, as I am familiar with the initial fate of every unorthodox idea. I am not made of porcelain so I thought I was prepared for a hearty discussion of the ideas and arguments presented in the book. Instead there were ad-hominems and allegations of malfeasance.
The essence of the now deleted thread went like this:
Me: "If you want my free book on Lyme as a possible cause of ALS then email me."
(My email address was deleted within a day.)
FM1: "Your book must be nonsense."
FM2: "Post your book here, I'm interested."
FM3: "You are rushing us, and you are spamming, and we don't trust you."
Me: "Sorry. You keep the PDF forever. No obligations of any kind."
FM4: "Post your book here. We won't email you because we don't trust you."
(Up to this point, I had intended to start selling the book in 2012 for 19 dollars until I had recouped my pre-paid five-year registration and three year hosting for this domain, and then offer it for free or reduce the price to a few dollars. But I really do not need the money and I decided that, faced with so much scepticism, it would be a better idea just to make the book free, so that more people would be able to benefit from it.)
Me: "OK, I'll make the book free forever, it has no ads, here is the download link."
(This posting was soon deleted)
FM5: "You are a fake research journalist with a sorry excuse for a book. You used Wikipedia and Google, which is wrong. Facts can only be found in libraries, and by talking to professors. I will use your book to make fun of you with my friends. You made everything up. You are trying to rob people with ALS of hundreds of thousands of dollars and get them killed faster than ALS already does."
FM6: "You have a pair of great big fuzzy testicles. You plagiarized your book with your crazy theories. You are a Copyright violator. You have no decency. You reproduced some usernames from this forum in your book. You are despicable. I will warn the ALS Untangled forum to pre-ban you. You are a quacktard. What guts you have to come here."
FM5: "Quacktards.... I am sooooooo stealing that!"
Me: "Of course I mentioned my sources, that's customary in research and journalism."
FM7: "I did not see your book but you clearly are a hopeless amateur."
FM8: "I'll shut the tread down. You stole some blue from this forum, which is illegal. Your book contains a link to your wellness site, which is spam".
(Not true, the only link in the book is a link to this site and not to the commercial part of my web presence. One day after the thread was closed, it was deleted, but I saved a copy here.)
After I recovered from the shock, I forwarded my husband the thread and he discovered that the forum members who had ganged up on me were routinely doing this to many first-time visitors like myself. People asking whether their symptoms could be ALS, people asking for possible causes of ALS. He showed me this posting, where an apparently severely ill person was mocked and insulted by the same person who had mocked and insulted me. Some hours later, this posting appeared, again highly abrasive and insulting to a newbie, again the abuse was from the same forum member. And there we have the problem with forums: They need moderators because otherwise they'll be swamped by spam and trolls. But not all moderators have the wellbeing of the community in mind. Some have their own agenda, are not fit for the job or worse: Bullying is their favorite passtime. A forum frequented by dying people is perhaps not a very tolerant forum. A forum with a lot of bitterness. So I understand.
The irony is that while the forum moderators falsely accused me of spamming with financial motives, ALSforums.com makes money peddling expensive quackery to ALS- and Lyme patients, and they stuck their commercial rubbish right into my posting:
The first commercial product he is making money with (he will receive up to several dollars for every click) is for "resonant light" that should cure Lyme disease. He also makes money when you click on a link that sells super-expensive treatment that claims to improve ALS for a few weeks. I conclude that alsforums.com is a company that makes money being an advertising platform for questionable products that capitalize on the gullibility of their readers, and that they like to keep it that way. For the rest - people haven't changed - banishment by the inquisition is now called "moderation".
ALS.net has classified a mention of this site by one of its members as "Irrelevant to ALS". ALS.net is a for-profit organization, trying to patent their own symptom relievers for ALS. Therefore, ALS.net has a financial stake in ALS not being curable with antibiotics. ALSuntangled.com has dismissed my book even before they read it. A statement on their site reads: "There is no convincing evidence that ALS can be caused by Lyme disease". This in spite of the half dozen published, peer-reviewed medical articles in my book that prove otherwise! Clearly a site with a hidden agenda, when they deliberately lie and deny the evidence in medical literature that Lyme in some cases causes ALS. ALSuntangled is funded by, and a front for organizations that have a financial stake in ALS not being curable by antibiotics, because they're working on patentable symptom relievers. There is a lot of money to be made with symptom relievers for ALS, especially because the WHO predicted that we will see ALS grow exponentially to epidemic proportions in the the coming years.
The moral of the story is that if you want to figure out what at least some manifestations of ALS are caused by, an ALS support forum is not the place to go to. Try a Lyme forum instead. Someone posted today on one of those ALS forums: "Is als-cure a scam?". What kind of scam would that be, when the site or the book isn't selling anything? You think I would spend an entire summer researching and writing a book that has no advertising, downloadable for free on a site that has no advertising, paying for research papers, the site and the ISBN number, out of a perverse sense of satisfaction to sow doubt in the mind of sick people? If there is a scam, it's als.net, alsuntangled.com and alsforums.com. They are the ones censoring peer-reviewed, published medical articles, and then lying in your face, claiming that no such research exists. When eleven pALS say they got cured with antibiotics, the ALS forums claim that I am making that up - in spite of me providing the names and websites of the ALS patients involved. Educate yourself before it's too late. I never claimed to have evidence that all ALS is caused by Lyme neuroborreliosis. Just a significant percentage. It would be better if people would read the book - all of it, including the materials linked to in the more than 100 footnotes - before censoring all mention of it and shouting "conspiracy theory" or "scam". If you are a member of a Lyme-related forum: Please post a link to this page, the site or the book. It is a disgrace that neurologists keep refusing to (properly) test for Lyme disease but arrogantly and lazily hand the patient their death sentence. Six out of seven neurologists never test an ALS patient for Lyme. This is not a number I made up - it comes from self-declared ALS experts themselves and the figure is documented in my book.
UPDATE: The companies that run the ALS forums have banded together in an attempt to find ways to remove this site and the book from the Internet. Even though everything in the book is protected speech under Fair Use, they hope they will be able to somehow find a way to get rid of the book by claiming privacy-, TOS-, or "look and feel" violations. It shows how desperate those multi-million dollar corporations are to hide at least part of the truth about ALS. It's not a crazy opinion they're trying to bury - it's peer-reviewed published medical research, key ALS/Lyme data points and the statements and experiences of people with ALS and Lyme.
Rob Goldstein's company has been very active in fundraising. In fact, their fundraising team looks bigger than their science team. Is that because they want to find the cause or cure for ALS, or because they like money? From his CV: "Job entails working closely with the board and senior management to develop and execute a myriad of promotional and marketing projects. Print and Online Marketing/Advertising, Corporate Cause Marketing, Corporate Sponsorship, Government Representation and Affairs, Media Pitching and Press Relations." and "...with whom I worked closely with to grow fundraising activities, create new programs helping to triple its annual income three-three fold to nearly $1.5 million in 2006." Do the people involved in the ALS-Lyme censorship have ALS at all? How could they be running those companies and forums all those years? ALS-TDI is a "non-profit", meaning the profits disappears in the pockets of people such as the management team. Non-profits don't pay any taxes, isn't that great! And focusing on the non-existing genetic etiology of sporadic ALS safeguards the inflow of cash until their retirement - or until people stop donating to what can at best be called pathological science.