The Placebo Effect of Fighting ALS
“I’m afraid you have amyotrophic lateral sclerosis.” My neurologist continued, “Anyone can get it, even myself,” and like Charlie Brown in the classroom, I shut him off completely, reducing his vocal output to a series of horn mutes.
I then went home and googled ALS. Devastated by what I found, I leapfrogged the first three stages of the Kübler-Ross grief cycle and found myself simultaneously consumed by depression and acceptance. And, at that moment, acceptance metastasized into giving up.
Thankfully, I had a second-opinion appointment. As I was no longer in a “Charlie Brown in the classroom mode,” I was able to interact productively. I learned of the systemic research underway and some disease intervention attempts by other ALS patients. Perhaps there was a way to fight.
The war may be fought by employing two strategies. The macro strategy seeks to benefit the entire population of people with ALS. The battle also may be waged at the micro level, aiming to slow the beast for the individual patient.
The best way to simultaneously impact both the macro and micro fronts is through clinical study participation. There may be no more profound contribution to neutralizing ALS than by demonstrating the safety and efficacy of a therapeutic treatment.
Recruitment for one or more trials is happening all the time. In fact, researchers lament the slowness of enrolling the required participants. Both the ALS Therapy Development Institute and the ALS Association provide a comprehensive listing of open trials. By participating, you will be helping to advance the science necessary to arrest ALS, and for the duration of the study, you will receive state-of-the-art attention.
Of course, the macro attack is fueled by funding. Donate if you can. Take part in fundraisers, if you are able. Both serve to push the needle our way. Plus, you will enjoy the mutual benefit from interaction with similarly circumstanced people. We are not alone.
Victory at the macro level will require navigating the regulatory “chutes and ladders” path. Although well-intended, the rigor demanded before the approval of a new therapy puts anticipated availability beyond our ALS-altered life expectancy. Legislative initiatives like the “right to try” bill and concepts such as “international drug reciprocity” need to be aggressively enacted.
Right to try would give terminally ill patients the right to seek treatments that remain in clinical trials but have passed the safety phase of the Food and Drug Administration’s approval process. Reciprocity would allow treatments that have been approved in Europe or in other developed countries (such as Japan) to be approved for, and to made available to, patients in the United States. Communicate with your elected officials to demand that they adopt a time-is-of-the-essence mentality, and prioritize any measures enabling terminally ill patients to access treatments of promise in an accelerated manner.
What can one do from a micro perspective? Be ever curious and open-minded. There is no scientifically published way to halt ALS, and some folks have resorted to “off-the-beaten-path” treatment methodologies. Although the evidence is anecdotal, it’s often superficially compelling. The trick becomes how to parse the sincere from the exploitive and the beneficial from the ineffective, or worse yet, harmful.
ALS Untangled is a good place to start. It is a compendium of many of the interventions purported to have yielded positive outcomes, some of which have been scientifically reviewed. ALS Worldwide is also a useful resource. Patients Like Me offers a ready population of people with ALS to query and compare notes with.
I have relied on those three sources, and some other trusted subject-matter inputs, as I’ve attempted my own anti-ALS “cocktail” of treatments. Coincidentally or not, some were accompanied by symptoms improvement and/or periodic condition plateauing. I have also experienced some measure of stability during clinical trial participation, fundraising efforts, and when pushing for therapy approval regulatory overhaul. In short, any time that I fight.
From my second-opinion appointment to the present day, I have fought. Sure, I get angry, particularly as a new symptom manifests itself. Occasionally I experience a brief wave of depression. But mostly I fight. I believe that it has added days to my life, and life to my days.
***
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.
About the Author
Comments
Charlie
Dear Author,
Do your activities enhance longevity or is this perceived enhancement, in reality, the rate of your ALS progression?
Charlie
"l have also experienced some measure of stability during clinical trial participation, fund raising efforts, and when pushing for drug approval regulatory overhaul. In short, any time that I fight."
This is encouraging, but adopting a more scientific approach to this particular claim must surely mean that symptom stabilisation can be completely secured by 'fighting' all day, every single day.
Charlie
Our best of all hopes remain situated in the research labs.
Failures of technical drugs such as Tirasemtiv, and pixie dust such as Lunasin show that we have a way to go yet.
If researchers lament the poor rate of enrolment in trials then I suggest they distribute the trials on a very much wider geographic basis.
We can be forgiven, I feel, for thinking that the first rule of a Clinical Trial for most pALS, is that it won't be carried out anywhere near their home town.
If the researchers cannot do that, it suggests to me that there is simply insufficient technical skill scattered around the map.
Charlie
I think ALS Untangled provides an excellent public service. It mostly sets out a Rogues Gallery of many products and approaches which are clearly designed to show pALS who exactly wants to take as much money as possible from them before they lose the physical ability to reach into their pockets.
Mary Ellen Fitzpatrick Dennard
Charlie, I think you are right about this. I am outraged by the Radicava $147,000 price tag. That's crazy. Its is not even close to a cure. I could not tolerate the older drug. Thanks for sharing ALS Untangled; I will look them up. As my symptoms progress I am more and more isolated, and depressed. Well, some days are better than others.
Take it easy, Mary Ellen
Celeste Lamosse
I am wondering why Radicava hasn't been pulled yet? It was an obviously an attempt of Big Pharma to steal as much as possible before it becomes well known it doesn't slow down anything for almost anybody? Why is this info still hidden (Radicava does not work). Everything so hush hush...ah...the power of Big Pharma.
Charlie
Clinical trials are the cleanest dirty shirt in the laundry.
You try and get into a trial and you see that you have 'missed the boat' on several that have already started. You apply to some others that are recruiting but by the time the trial starts your symptoms have crossed a disqualification line.
Ultra slow progressors are probably the best suited for inclusion in clinical trials, but then of course the outcomes might result from that slow progression rather than from efficacy. It's a conundrum isn't it?
I don't know the answer, that's for sure.
What worries me most is that neither do the researchers.
Charlie
Don't be in too much of a rush to promote the 'Right to Try' facility. The loudest noise will be the clatter of Big Pharma leaving the room as they try to evade it. For example: Just one Serious Adverse Effect of a drug taken under Right to Try before attempting Phase 3 success would set back serious attempts to take that drug through Phase 1/2/3 in the usual way. It might make it but it would take a much greater amount of time than the already snail-like pace of current trials.
A death from taking a RtoT would play right into the Big Pharmas' hands and they would say 'Told Ya So.'
The biggest beneficiaries would be the shareholders of 'supplement' makers who play up the claims of efficacy whilst offering harmless vitamin dust.
Researchers may well look down their noses at things like Lunasin, but I say to the researchers 'you aren't breaking any speed records and you definitely are not coming up with any half-way useful treatments.'
Thirty minutes reading reports of lab findings here on ALS Today shows that research is finding even more baffling aspects of ALS every week.
Nothing usable has come out of the labs as yet in 2018 and it has been a terrible year for ALS research.
Dr Brian C Davis
I was diagnosed with ALS Oct. 2017 and advised to put my affairs in order, as there is no cure for this devastating diagnosis. I ran the Boston Marathon in 2014 and know how to push my 70 year old body to new challenges. ALS was no different. Just an other challenge to overcome. I adopted to an ketogenic diet, exercise plan and started researching treatments for neurological disorders.
The first thing I did was to start Edaravone infusions. I live in Nova Scotia, Canada and our province allows our local hospitals to do the IV infusion of the Edaravone drug free for us. I go up to the local hospital each morning 4-5 days a week for an hour appointment for the IV infusion of the drug. Health Canada allows ALS patients to bring a 3 month supply of the drug into Canada for personal use tax free. We get the Edaravone vials right from the neurologist in Japan who discovered the value of the drug for ALS treatments, for $3,200 Can for a three month supply.
Edaravone is not a cure for ALS but it is a free radicle scavenger and slows the progression of the disease by 33%. I have been on Edaravone for 5 months and have experienced benefits in bladder control and overall stamina. The progression continues as time goes on.
One week ago I had my first deployment, with my own adipose tissue derived stem cells. This was done at a stem cell center here in Canada for a nominal fee, $6,300 Can and I am over the moon with excitement, as an ALS post just came out with an announcement, the a possible cure for ALS is stem cell treatment combined with Edaravone.
The surgeon said it may take 2-3 months to start to see changes and I am happy to wait and see what happens. I keep a daily journal of my symptoms and will send progress notes off to the Stem Cell Centre each month.
The local ALS society is watching me with excitement to see what my treatment will do for me and if it is successful. I'm a believer and plan to run another Boston Marathon in the future.
I pray that a year from now, will be a new and exciting outlook for all ALS patients.
Remember, you are not alone. We are all in this together. At some point soon we will find the "cure".
Dr Brian C Davis, Lunenburg, Nova Scotia, Canada (the best country in the world)
Charlie
Doc says "I was diagnosed with ALS Oct. 2017"
This is a newly diagnosed pALS and as such was 'eligible' for Radicava.
Health Canada, I have discovered, will infuse patients at no cost, providing they buy the gloop out of their own personal funds.Some patients in Calgary are also doing this.
Those pALS who have over 15 months after diagnosis are not recommended to take Radicava as it is proven to have no effect.
Doc is doubling up with private stem cell treatment at personal cost which has no approval as yet from Health Canada. If Doc is feeling better I guess everyone would want to know is which medicine is doing the good yards or is both as a combo doing good? Stem cell treatment in Canada is thus a form of 'Right To Try'
Charlie
"I am over the moon with excitement, as an ALS post just came out with an announcement, the a possible cure for ALS is stem cell treatment combined with Edaravone."
Doc, could you post your reference for this 'post' please?
Hopefully it will not be a product of a sales force for either or both of the two businesses.
Posts are one thing, supportable repeated results are what is needed
Charlie
I think the Doc is describing a total outlay of $9500 CDN for three months of treatment.
Does the stem cell treatment have to be repeated?
Charlie
Doc says "I pray that a year from now, will be a new and exciting outlook for all ALS patients."
Whilst you are down there praying, Doc, spare a though for those pALS diagnosed before Oct 2017 for whom a year will be far too little time.
For many it will be far too late.
Charlie
Keep us informed Doc. Good Luck to you.
My own family's experience suggests that science is the best entity for supplication, as the 'big guy upstairs' appears to be non-existent(ref: the thousands of millions of prayers offered up to 'heaven' over the last 100 years or more from ALS patients and their families.)
Massimo Bianchi
L'effetto placebo per questa malattia NON ESISTE! Non è che lo status del paziente vari a seconda del proprio eventuale autocondizionamento!