http://www.the-scientist.com/?articl...self-Medicine/

Do-It-Yourself Medicine (Cover story, The Scientist)

Patients are sidestepping clinical research and using themselves as guinea pigs to test new treatments for fatal diseases. Will they hurt themselves, or science?

By Jef Akst | March 1, 2013

Editor's Note: The author of this article, The Scientist editor Jef Akst, has launched a blog about her research into this story. Read more about Eric Valor and other patients taking a more active role in their own care at DIY Medicine.

On August 10, 2011, Joan Valor Butler diluted a solution of 5 percent sodium chlorite in 1 gallon of slightly salted water, and slowly injected 1 liter of the mixture into her 42-year-old son’s feeding tube, at his request……

……….. While the ALS community has taken do-it-yourself (DIY) medicine further than most, patients across the board are starting to play a noticeably bigger role in their own care. “There’s a new model of medicine in my opinion,” says neurologist and clinical researcher Richard Bedlack, director of the Duke University ALS Clinic.

“Once upon a time we had a very paternalistic system, where patients would come, and they would have a set of symptoms, and doctors would ask all the questions and give all the answers. And in the past decade things have really shifted almost to the other side, where a lot of medicine is autonomous now. You see these DIY programs where patients are deciding, after doing an Internet search, that this is what they want to do; they go get the medicine; they take it; and they log their own output measures.”…. (lengthy article follows)…

Readers say:

Fantastic article!!
What I find astonishing is that in the minds of academics and medical professionals there is still a debate over whether terminally ill people should experiment on themselves, or even healthy people for that matter.
There never has been such a debate. People have always experimented on themselves and they always will, but they rarely share this with their physicians for fear of criticism.
The only debate is whether we want to capture this information and learn from it.

March 1, 2013
the reason we are forced to do this is the glacial pace at which development progresses. We can't wait 10 years for the process to play out. and with the Lithium project, we had first urged the powers that be to take action. When that request was refused we took it into our own hands. What we found, aside from the futility of lithium, was that we forced quick action from the clinical community. We won't hesitate to do it again. The paradigm of helpless patients quietly dying is OVER.

March 6, 2013
What a great article. The same thing is happening with autologous stem cell treatment. The FDA is regulating our own stem cells if they are manipulated so as to make them clinically relevant as drugs. Terminally ill patients are being denied access to potentially life saving therapies even though there is very little risk.
The dirty little secret that no one wants to talk about is that billions of dollars are at stake. Those in research, Big Pharma, FDA, politicians, charities, all have conflicts of interest. They stand to lose a lot of money if patients can be treated by a doctor with something as simple as their own stem cells or something such as sodium chlorite that Valor was was self administering. Look what they've done to fish oil. $130 a bottle for Omacor because it's FDA approved. Sick people are worth a lot of money.
The public is gullible. They still believe that the FDA, academia, medical professionals, charities are all working to help find cures. It simply isn't so and sick people are paying for it with their lives.

Excellent article Jef Akst! Eric Valor is a true warrior in the ALS battle. ALS is cruel and unusual as far as diseases go. In reading his story you can't help but place yourself in his shoes and think "what would I do?" The Multiple Sclerosis disease community finds itself in a similar situation. I was diagnosed with MS in 2004. We only have FDA approved drugs to treat the 1st stage of MS (Relapsing Remitting) There are up to 3 more types/stages of MS that have NO FDA approved treatment (other than 1 chemo drug that treats PPMS) How is the MS community handling this? We are becoming medical tourists and seeking Adult Stem Cell therapy in other countries by the thousands. We have been criticized by many for taking matters into our own hands, but "what would you do," when a nursing home or death might be in the near future?! Some of the FDA approved MS drugs available carry a black label warning, and side effects can be things like leukemia, and herpes! Being treated with our own cells is far safer then the FDA approved drugs for Multiple Sclerosis.

Gregor Mendel, the posthumously hailed father of genetics, manipulated his pea plants in his garden —was he not doing-it-himself? (That was a previous century. Today we have Aunt Bean.)

Folks, when Science magazine devotes an issue to do-it-yourself medicine and citizen scientists, the medium being the message:

- the idea is going mainstream and Main Street; Science magazine would not devote an issue to it if it was just some tree-hugging hippies eating organic turnips; magazines such as this do not take risks;

- Doing your own Medicine is now openly sanctioned by many and encouraged by a few;

- the enthusiasm is building because it works

- it is not a contradiction of what exists; it's a new stage in the dazzling victories of science, and it keeps speeding up. It's another big victory in the making;

- somewhere big bucks will get involved, once the free volunteers have shown the way. The data, provided by patients and care-givers and citizen scientists, will someday attract big bucks. That's one reason the stampede is starting. Information is not always power but it is often profit.

Go for it, America! This is another moon-shot, an American specialty. Americans surf tsunamis of change, century after century.

Check out the enthusiasm of the Editor:

Editorial by Jef Akst, Science magazine: (a short while ago, this would have been blasphemy to the religion of science):

Today, citizen science is a widely discussed movement in biology. Headlines regularly report news of community residents monitoring bacteria in a local pond or playing protein-folding video games in their living rooms—all in support of rigorous scientific research. A small, but growing, number of community laboratories now offer equipment, space, and safety training to support the biocurious. Do-it-yourself biology (DIYbio) has become so trendy that the predominant response to breakthrough genetic studies of the H5N1 avian influenza virus was fear that the information, if published, could be used maliciously by bioterrorists or by amateurs not following proper safety protocols.

Recognizing the importance of these trends, The Scientist editorial team decided to devote a special issue to the topic of DIYbio. The conundrum we encountered, however, was how to define a do-it-yourselfer. Most obvious are the untrained devising homemade experiments. But there are also formally trained scientists working outside a conventional research setting, or developing new equipment from a hodgepodge of supplies in the lab. And if we want to call this a new movement, we have to somehow differentiate these groups from the founding fathers of science, like the great thinkers of ancient Greece or the gentlemen scientists of the 18th and 19th centuries. Gregor Mendel, the posthumously hailed father of genetics, manipulated his pea plants in the garden of his monastery, where he served as a friar—was he not doing-it-himself? What about Englishwoman Mary Anning, who collected and sold fossils in the early 1800s—and just happened to unearth some of the most influential specimens from the Mesozoic? (See “A Sea Dragon Revealed.”)

Indeed, DIYbio is not new. Even into the 20th century, when it came to procuring research tools and equipment there was little that wasn’t do-it-yourself. Before made-to-order cell lines and microarrays, researchers had to make their own cell culture media, customize their own reagents, and even wash their own test tubes and beakers.

Today’s DIYers are different, however, because they are not following mainstream science. In the last half century, as technology grew prohibitively expensive, researchers were forced to turn to central funding sources, and science became increasingly institutionalized. Tinkerers were no longer welcome. The 21st-century DIYbio movement is now challenging that dogma.

In “Biology Hacklabs,” Megan Scudellari reports on the creation of DIY wet labs that support both established and amateur scientists in fields that were once out of reach for garage innovators. And even in the lab, scientists are once again doing more on their own to avoid spending precious dollars on equipment they can build or repair themselves. (See “DIY in the Lab” and “Sticky Lithography.”)

Of course, the resurrection of DIYbio has the scientific community discussing the risks and regulation of such activities. (See this month’s Critics at Large, “DIYbio: Low Risk, High Potential” and “Regulating Amateurs.”) One arena that has raised particular concerns is clinical research. More than ever before, patients are connected to new scientific information and to each other, and as I report here, they’re taking the initiative to track down promising experimental treatments, dose themselves, and record their results. Could these patient efforts accelerate the drugs’ path to the clinic—or derail FDA-sanctioned trials?

I thought I’d been born too late to be surprised by what science can accomplish, but the exponential growth of a research community outside of an institutional setting is, to me, entirely unexpected. I already knew science was fun; I just didn’t know so many other people thought so too.

Jef Akst News Editor
Special Issue Coordinator eic@the-scientist.com

(I meant to look up all the url's for each company listed below, so you could just click on them, but I got lost clicking back and forth)

From the same issue of The Scientist:
Groups or companies already active in gathering information from the actual end-users of the entire system: the patients.

Sage Bionetworks
Collects data from patient networks and clinical studies and combines them in a platform that allows researchers to run their own analyses. Also allows patients to donate data, in the form of photographs of their melanomas, for example, or lab reports from their doctors.

PatientsLikeMe
Users share personal health information, which company researchers analyze for potential trends, or sell to interested parties.

23andMe
Customers contribute their genomic and phenotypic information to research projects organized by the company.

Cure Together
Gathers survey data from patients about symptoms, treatments, and outcomes, then allows users to compare themselves to others (Note: 23andMe bought Cure Together in July 2012.)

Genetic Alliance
Collects patient blood and tissue samples and stores them in disease-specific biobanks, while serving as a networking organization for patient advocacy groups, universities, companies, and more.

Personal Genome Project
Gathers full and partial genome sequences from volunteers, as well as trait data.

Cancer Commons
Hopes to track genomic data from cancer patients and us rapid-learning algorithms to generate regularly updated models of cancer progression and response to treatments’. (Full disclosure: Cancer Commons' executive director is The Scientist's former editor-in-chief, Sarah Green.)

C3N Project
The collaborative Chronic Care Network (C3N Project) combines data from medical registries and patient records -- and hopes to soon supplement with patient-contributed data on diet, exercise routines, etc. -- and make those data available to the patients' doctors.

NextBio
Provides a platform for biopharmaceutical clients to search databases of clinical and molecular profiling data collected by hospitals, contract research organizations, and public databases.

Genomera
Provides an online platform for user to launch their own crowd sourced health studies; organizers come up with the questions, develop protocol, and invite other Genomera users to take part.

And this has just started.
Reverett123 has been right for years

... and we have our very own PDMeasure:

http://www.parkinsonsmeasurement.org/PDMeasure

This lets you input PD data about yourself and details of the meds you take. You can take a test that helps to assess the severity of your motor symptoms.

See the article about it on the MJFF blog:
https://www.michaeljfox.org/foundati...with-parkinson

You can enter data NOW.

Data is entered anonymously.

The data is open to everyone: take it, analyse it, report back.

The software is open to everyone: take it, do it better, report back.

The big advantage PDMeasure gives is that it provides a platform from which we can run mini-trials. I'm putting the finishing touches to the protocol for a study of the effectiveness of curcumin, which I hope to start next week. In the meantime, if you want to be involved, please get in touch.

John

Yesterday, went to an organic grower school to learn to grow turmeric (curcumin). Very excited about being able to grow one more of the supplements that we have to buy at this time. Long growing season (but do-able with greenhouse space) Excited!

When I developed Pernicious Anaemia just under a year and a half ago, I was surprised to find my doctor asking me whether I knew anything about my long term PD meds, and whether they could have caused it. This on the basis that I am not a vegan (I am an occasionally lapsing vegetarian) and should not have developed it. Not often that docs ask such questions. Anyway I looked it up, first finding that long-term l-dopa use had been found to be significant in a study of longterm users now in elder care facilities. Further enquiries led to an advisory by Kathryn Holden, the PD dietician.

When I looked into the non-PD situation of those with pernicious anaemia I found that their case is even worse than ours! There has been, largely due to folic acid supplementation of wheat flour, a masking of the condition which does not show up on tests if folate levels are ok. Leaving millions of people with a deficiency medicine has largely forgotten, only treats in a generic way and does not even care to tackle.

So patients are doing it! Lobbying governments, learning about it, establishing the facts, and supporting what few professionals there are around to campaign for better treatment. Just like the PD community. And many other communities of people with conditions that really adversely affect quality of life. In the case of Pernicious Anaemia patients are learning to self inject the B12 that they need to raise their quality of life.

With PD we are constantly telling health professionals that our quality of life is deteriorating, often to be met with the bland statement, 'you are looking well today'....... so we go away for another 3 months or a year, or whatever gap there is till the next appointment, when we get more of the same.

Other people also looking really hard are all those with auto-immune conditions that are only partially responsive to treatments, those with orphan conditions that get little publicity, those with conditions where the treatments are frankly harder to tolerate than the condition, which is bad enough for people to take the medicine anyway.... conditions which medicine is still debating the existence of, and which medical insurance companies love to support denial of.

All in all a lot of people actually pushed into having to move into DIY medicine in order to find something, anything, that will give them some kind of quality of life by boosting their energy, decreasing their pain, allowing them to move more freely, or function better.

Time, I think, that medicine and science started to acknowledge that there are people out there, struggling with conditions of all sorts, who are not malingerers, and not deluded, and who need them to listen.

On the other hand there is some good thinking by the white rats and citizen scientists in our midst, and hurray for them, they give us the impetus to question treatments with unacceptable side-effects, and try things that can and often do help. Nowadays ginger is often recommended as an anti-sickness measure in all sorts of situations, including ante-natal. Because it is safe and effective. Ordinary people knew this. Drug manufacturers on the other hand were happy to foist thalidomide on people around the world, and people took it, trusting in modernity as having the only answers.

Today we know that science is answering lots of questions, but that treatments are slow to emerge. We also know the things that help us, and when there aren't any, we look for ones that might. Largely because what is prescribed often brings problems of its own.

Is this because the right questions are not asked of the right people? Do we need to be part of a movement that is talking about these things, something bigger than the PD community?

i agree with you 100% that we have to take the initiative, which explains the huge business in alternative medicine and supplements. this board wouldn't exist if we weren't trying stuff on our own, you can only discuss sinement, amantadine, agonists so much. surveys have shown most pd'ers are trying alternative treatments. i think most aren't posting here.

there have been a lot of clinical trials trying vitamins and other supplements but i assume most md's and neuros don't want the liability of prescribing them and might not trust the studies, many are overseas. just speculation there. i do know that if i mentioned to my neuro that some supplement had benefitted me he would be very interested. i will throw out IV glutathione as an example, it was hyped and still is as a treatment but when a clinical study was done by HAUSER at the USF it was found ineffective. so i can see where neuros/GPs might be a little skeptical.

i have the same experience, my neuro and GP really don't ask me "how are you really doing?", my neuro also says i look good, my GP doesn't even ask me about my PD. I really don't blame them as much as our way of reimbursing doctors, they have to have a diagnosis and approved treatment to get reimbursed by insurance companies, so they might not want to try a lot of alt. treatments since insurance won't pay for it nor will the patient. when you think about it, conventional medicine is leaving a lot of $$$ on the table by not offering alternative treatments which from my experience of going to alt-med practioners can be incredibly expensive since they seem be willing to try an endless number of supplements/treatments, many requiring lab tests at independent labs, none covered by insurance.

i hate to say it but i'd rather see the big research money going towards the "cure" rather than trying to test supplements that might have a minor affect. and neuroprotection is very difficult to prove, look at how much TEVA spent on their azilect study and yet the results are still being debated. vitamin C, E, selegiline, sinement, agonists, creatine and other supplements/drugs have been evaluated for slowing progression and nada.

and i'll be a broken record, lack of volunteers is holding back pd research as much as anything else and it's very hard to prove a benefit in a progressive disease with no biomarkers and multiple causes, and still not sure what exactly causes the progression.

bastyr university is a large alternative medicine organization here in seattle area. i haven't visited them but they do clinical trials, they are doing one testing intranasal glutathione. i don't think i'll apply since the IV trial showed it wasn't effective and i might get a placebo.

http://www.bastyr.edu/research/studies
http://bastyrcenter.org/content/section/3/183/

it would be interesting to see their approach to pd and how much it would cost, don't remember anyone posting ever going there but if there is an organization that should offer an integrative approach they're it.