Dear brothers and sisters,
Please review the attachment/article, well all I can say about yet another bogus, don't get out of line, hopeless message ... -- WELCOME TO THE 21st CENTURY !! -- The Old Way of Doing Things Are Almost over for you guys. As Stephen Byer articulately pointed out the Internet is king, no longer will people be blindly corralled like cattle to their doom, at least not progressive minded fighters .
Articles like this are just a last, desperate attempt by the ALS establishment to keep control . For too long they've been making us believe that, the end all gospel of medical evidence and facts, are in the hands of the holy Grail = "experts" and no one, especially mere mortals who surf the Internet, should ever dare try their hand at questioning /challenging the established order.
Let's face it we (PALS) have been at the mercy of waiting for unending research, big pharma interest, orphan disease politics, etc. They also think that calling something a "myth" will belittle the efforts of those who educate themselves & fight for their own health freedoms. Sorry, that may have been last century, but not this one.
I love this statement from the article/attachment (Red):
We need to do a better job of distributing information to PALS on the many benefits of attending specialized ALS clinics, on the many benefits of participating in the research studies offered there, and on the dangers of self-experimentation. We should refrain from off-label prescribing of unproven therapies. Most importantly, we need to educate PALS on how to distinguish myth from realityAllow Me to Sort This Ridiculous Paragraph into Sections
1. Do a better job of distributing information to PALS??? -- What information are they referring to? Oh, let me think of a classic "Mr. Johnson, your breathing capacity has dropped to dangerous levels, you may want to consider a trache" but then again only 10% of all patients at this neuromuscular center have ever taken that option. WOW! Could you repeat the second option again? Or what about this priceless tidbit (information distribution ) -- Mr. Johnson there are no available treatment options except Rilutek/Riluzole , which is highly recommended by this neuromuscular team, nevertheless you probably have anywhere from 2-5 years of your life left, I suggest you get your affairs in order.. would you like to speak to our an M D A representative?.
2. Many benefits of attending specialized ALS clinics -- Oh Really, Would You Care to Expand on What They Are? --I am not clear what are the benefits of specialized ALS clinics. Oh, I know, refills for Rilutek, prescription for XYZ depression, anxiety, order lab work to check if my liver is cooked by so much Rilutek, prescription for drooling, referral to ENT, prescription for a wheelchair, or just to tell me every three months that my disease is progressing and there are no options/is NOTHING out there. I call that the trip to HOPELESS LAND...it is more of a hussle. A typical day at a neuromuscular clinic includes... bathing time, dressing time, loading time, driving time, waiting time, (in between specialist's) and finally it's time to see the "specialist/neurologists" to hear a 25 minute no-hope message that includes "see you in three months." So, if I am missing something, I need these authors to tell me what other benefits are there at specialized ALS clinics!!!!
3. On the many benefits of participating in the research studies offered there -- Which one? The one that generates the most donations or the one where I share a cage with the mouse? Tell me Mr. authors, which of the research studies are moving fast enough to generate my interest? What I see mainly is tons of money wasted by big name university researchers to ensure job security for centuries to come. Or the real warrior scientists wanting to participate on research funds that get push aside because they are not affiliated with a big name university or organization. How about "creating false hope" dear authors!
4. And on the dangers of self-experimentation. I recently heard of two scientists who have been spending their OWN money working around the clock to find a cure for ALS, out of their OWN pocket! They know that rare diseases like ALS will not be a one size fits all cure. We all know that ALS is just an umbrella term for a number of different types of motor neuron diseases. And with the exception of the 5% familial type, treatments will need to be customized to the individual and the only way is to do it on trial and error basis. If I am willing to use my body for science sake, why should any article stop me from doing it?
5. We should refrain from off-label prescribing of unproven therapies ... What ? ? ? -- Do these authors know that new drugs are often not tested for safety and efficacy specifically in children. Therefore between 50 percent and 75 percent of all medications prescribed by pediatricians in the U.S. are for off-label applications. Are they proposing to tell these pediatrician not to continue this practice? Another example, the standard of care for a particular type or stage of cancer involves the off-label use of one or more drugs. Another example is the use of tricyclic antidepressants to treat neuropathic pain. According to medical literature, this old class of antidepressants is now rarely used for clinical depression due to its side effects but the tricyclic are often effective for treating pain on those patients with neuropathic conditions. Should we share the authors recommendations with the neuro community too? Oh forgot, how about Provigil an off label drug used for MS patients....the list goes on and one. Do we stop this practice all together for everyone or are the authors suggesting just IPLEX for PALS to be restricted and not prescribed off label. THAT will be discrimination BIG TIME!!!! Law suit, law suit....
6. Most importantly, we need to educate PALS on how to distinguish myth from reality - MAN!... Does anyone else feel insulted?... what about Rilutek/Riluzole? -- Do they honestly think that PALS are a bunch of dummies without brain? Actually, PALS brains are very active and perform best without the distractions of the other body parts it is called ENHANCED functioning....and last time I check Rilutek was really a MYTH....prove me wrong!
Summarizing: These gents need to accept the fact that the world has changed, and the game is almost up. Blessed be cyber technologies that allow people to break through special interests, share information (good or bad) and take over a cause and become engaged activists. Next step, We All Write Letters to Those Well Intended Authors who are just misguided and cannot see that the world has changed and remind them that whenever writing an article just directed to PALS, they must be reminded that, although PALS bodily functions are steadily declining, the one thing that's left intact is the brain . Should our (PALS) families, not have the right to any and all possible therapies including stem cells, IPLEX, or whatever other reasonable therapeutic that might have even marginal efficacy? -- save our lives-? Should it not be our doctors responsibility to adopt the attitude that, all reasonable treatments/therapies including stem cell should be considered , instead of the fatalistic “oh sorry, Mr. Charlie - . Life isn't fair, that’s just the way it is, there's nothing we can do -- SEE YOU IN THREE MONTHS!!