The aim of Mendus is to bring research within reach of those who need it.” Joshua Grant
Hey, when the powers that be aren’t helping out, you innovate. You find new ways to do things. You break new ground. You fill needs.
Largely shut out of the medical mainstream the ME/CFS and FM communities have been breaking new ground for decades.
- Co-Cure – A Listserv to get the word out for ME/CFS patients. (Notice that fibromyalgia does not have a Co-cure, while ME/CFS does. Why? Because someone in the ME/CFS community saw a need, had an idea and stepped forward with it.)
- Microbiome project – ME/CFS patients crowdfund to raise money for ME/CFS research.
- HealClick – allows patients to track symptoms and treatment results.
- Phoenix Rising – a place for patients to interact with patients to get answers.
- Health Rising –patients producing blogs to provide up to date information on research and treatment topics. Now a place for patients to interact, review treatment results, check out recovery stories and resources.
- Canary in Coal Mine/Blue Ribbon Projects – ME/CFS patients team up with filmmakers to produce films.
- OpenMedNet –The feds were unwilling to build a patient tracking network so the Open Medicine Institute does.
- Solve CFS Biobank – a non-profit, not an academic institution but a non-profit – sees a need and opens its own biobank
It’s happened again. Joshua Grant is a neuroscientist with ME/CFS. He saw a need and he’s filling it.
Joshua knows how to conduct research. What he doesn’t know – and would really like to know – is what works in ME/CFS. He knows studies on the vast majority of treatments will never get done, and those that do get done are usually too small to account for much. He knows he often has to rely on anecdotal reports.
He knows that doesn’t work very well, but the studies he needs to produce good results are too expensive – or are they? Hey, when a pressing need is present you get creative. You start to think outside the box. Who said studies had to be expensive? Who said they had to be associated with academic centers? Who said that patients couldn’t run their own studies? Who said that? Where is the law saying you can’t do that?
Enter Mendus (“Mend Us”)
Enter Mendus – a website to enable patient produced studies. Researchers provide the guidance. Mendus provides the base of operations. You – the patient community – provides the ideas and the patients. You suggest a study. People sign up for it. You confer with a researcher about how to produce it.
Once enough people sign up for a study it begins. Once enough data is collected statistical analyses are done by the researchers. Meanwhile the “study” remains open and as more data is collected, the analyses are done again, and the results get more and more reliable. `
A survey form might suffice for many studies. The rapidly emerging world of apps that can monitor all sorts of functions (sleep, heart rate variability, activity levels, etc.), on the other hand, makes a finer-tuned (and more powerful) assessment of many symptoms and factors possible. The emergence of online labs where you can order your own laboratory tests (without a doctor’s prescription) could take the process to an entirely new level.
These analyses won’t end up in scientific journals (probably), but they’ll provide solid bases for treatment recommendations. If they’re big and complex enough they may even generate new insights.
It’s a Brave New World indeed. If the medical community won’t do it – and they won’t – the patients now can. The possibility of producing good, trustworthy patient produced ME/CFS and/or FM studies just opened up.
Joshua Grant on His ME/CFS Experience and Mendus
“I’m tired of wasting time” Joshua Grant
I talked with Joshua about his experiences with chronic fatigue syndrome and starting Mendus
Can you say something about your ME/CFS experience – what happened and how you’re doing now?
It’s hard to say exactly when my CFS started. My best guess is 25 years ago. I had a relatively strong case of mononucleosis at 16 or so and feel like I may never have fully recovered. From that time until about 2 years ago I was typically sluggish and had a lot of pain as well as gastro issues.
But I was also single for most of that duration and able to sleep as much as I needed. So, for a long time, I was keeping everything in check (more or less) by just sleeping a ton. That’s my post-hoc guess, at least.
But once work became a career and I gave up my bachelorhood and had children, things changed. I was no longer able to sleep 12 or 14 hours a day if I needed. I quickly deteriorated, losing weight, becoming incredibly irritable and impatient, and of course completely exhausted and in pain.
What led me to the CFS diagnosis, though I had been thinking about it for years, was the post exertional malaise (PEM). I can no longer do even menial activity without having muscle soreness and stiffness that can last for over a week and which brings on intense brain fog. My gut feeling is this symptom (PEM) is going to be what eventually brings down the CFS mystery.
Where am I at now? It helps knowing what it is. Though that’s also the discouraging part because, of course, there is no agreed upon treatment or cause. But at least it gives me a place to start, which is where the idea for Mendus came from.
Surfing the web you come across all sorts of obscure studies and wonder, maybe that’s it, maybe they figured it out. You get a bit of hope, perhaps order whatever it was you read about, take it haphazardly for a little while and make some kind of unclear assessment of it’s value. Maybe other’s don’t operate that way but I do and I’m tired of wasting time.
I’m getting worse and worse and from my training in neuroscience I know the only way to really evaluate a treatment is to properly record everything. Treat it like a scientific study, plan it out, try to control as many surrounding variables as possible.
So I started planning and was about to start my CFS Diet Study alone. But then it occurred to me that opening it up to the public could be huge. It could help a lot of people and also motivate me to do it properly.
Then that idea morphed into creating a website where all sorts of patients could come, propose studies, participate and see their results. So actually, I haven’t gotten very far in my own quest as all my time has been preparing the site. But as I learn to automate it I’m finding more time to actually test myself. As long as I refrain from doing anything physical I’ve been able to continue to function. I’m hoping after a couple Mendus studies I’ll be able to bike with my kids. That’d be nice.
What kind of studies do the available apps lend themselves to? So long as you’re able to monitor symptoms could you conceivably fit just about any treatment in – given enough people are available?
There’s a few answers to that question. First off, I’ve never had a smart phone and until recently had never even used an ‘app’. I’m new to all of this and it’s mind blowing how much is out there. This is why it’s imperative that people get involved. I know about research but not necessarily about everything we could use for the research. I think the creativity of the community in using many of the free products that exist out there is part of what makes this exciting.
Likely, most of our studies will focus on treatment, perhaps comparing treatments (so called clinical effectiveness research), rather than explaining what underlies the disorder. Though our results could certainly guide future work on the mechanisms.
I think the Diet Study is a great example. If we were to show that maybe sodium intake, or a particular mineral or vitamin, has an impact on a specific CFS symptom then this can be followed up in the more controlled environment of a research lab. In the lab researchers can manipulate much more than we can voluntarily online.
That said, there is no reason why more extravagant studies can’t be organized. Past medical records could potentially be used. People could request certain tests or treatment options from their physicians in a coordinated fashion. I’m willing to tackle just about anything. Why not?
You make a good point though. Enough people need to be interested in a particular study. Some studies may be a lot of work for me to prepare and I can’t possibly do every one if it’s just for a single person or two. Plus, to be statistically meaningful, you typically need a fairly big group of people. That’s one of the cool things about this endeavour. Once built these studies could sit online and collect data from new people for years, which would lead to more and more reliable results! This really has the potential to impact the disorder.
What kind of studies do you see in the future?
I’m going to creatively dodge this question and say, it’s up to you. The whole point of Mendus is that the community should dictate what will be studied. If I say where I think it’ll go I may inadvertently extinguish the creativity of others in taking it to new levels. As I have written elsewhere, the sky, and the motivation of the community, is the limit.
All that’s needed is participation. You might participate for any number of reasons. Maybe you, too, are tired of relying on anecdotal reports. Maybe you’re jazzed by the idea of getting together with others to forge a new era of patient supported studies. Maybe you have a hot idea for a study. Something worked for you and you think it might work for others. Or you think something might work for you.
Maybe you want to show the medical community that their inattention won’t stop us; if they won’t help out – we’ll do it on our own. (How’s that for a bunch of “malingerers”?).
Maybe you know that being in a study with a bunch of other patients would help you be more disciplined. You know you’re too haphazard in your approach. You try something for may be a couple of weeks (maybe a couple of days) and then let it go. You’re not sure you have the right dose (and probably didn’t check). You might not have the right supporting treatments. You know you could do better, and you would if you were part of a group that was counting on you. You need that edge. (That’s me.)
Or maybe you simply want to be part of making a difference. Of making the lives of those who come after you a bit easier.
Whatever your reason, if you’re interested head over to Mendus, register, indicate what studies you might want to participate in and suggest ideas for others and then spread the word.
Anything is possible. Starting on a new protocol? Grab some patients and start a study. How about a new diet? How about Dr. Courtney Craig’s idea of short fasts. Do they really work? I’d like to give a ketogenic diet a try. I’d definitely need to be a group to get through that.
Mendus currently has two study ideas on the books; a diet study and a D-Ribose study.
Health Rising is going to keep a close eye on Mendus. Coming up next – the Mendus Diet study and the “Quantified Self” movement that inspired its creation.