The aim of Mendus is to bring research within reach of those who need it.” Joshua Grant
When you’re on your own – you get creative.
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.
Mendus – a new way to do treatment trials and studies in ME/CFS and FM
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.
It’s a labyrinth out there…But does it need to be?
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.
Participation
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.
Always up for good patient research. had this disease since a child. Got worse till it tipped me over about 15 years ago. Have all biomarkers I don’t really understand why this is still so vague. Immune system under and over active , chronic inflamation cytikones,pet scan showing ms type white grey matter,nk cells below 10% working level below 10% band t cells,heart abnormalities and cns, exhaustion pem, Now for the second time this weekend diagnosed with another cancer this one is thyroid three years ago was kidney. This disease has wrecked havoc on my body. What is missing here in biomarkers? There all there. p
I have had this dam disease for almost eight years now and nothing has helped. I just keep getting worse and worse. I’ve slowly gained weight as my activity decreased. Last winter I ballooned up from overweight to obese. A nurse practitioner, I know carrying the extra weight is bad for me on all sorts of levels, but what can you do when you can’t exercise without crashing.
The Mendus study came along at just the right time. I decided I had to get serious about tracking my intake as that was just about the only variable I could control. My first week’s data is in. It amazes me that I can eat less than 1300 cal/day and still gain weight. Gotta love cortisol and what it does to a body. (sarcasm)
Initially, it was a pain to track my meds, supplements, food, activity and sleep. But with a solid week under my belt I feel I have a good handle on it now. I’m able to seamlessly use SparkPeople and the Mendus CFS site from my PC, Kindle Fire and iPhone. Since I’m homebound, it’s easy for me to note what I’ve eaten.
I live in northern Wisconsin and can’t participate in many other research studies–either too far away or too old–but I feel that anything I can add to the knowledge base will be useful.
Thanks Ellie,
Glad to hear it’s getting easier. It was the same for me. Keep plugging away. I think the second week starts to show patterns a little more clearly. I’m grateful for all your feedback. It’s important at this stage especially.
I’d love to hear from people about the types of things they would like to see, or look for, in their data. As far as know (which isn’t very far) studies typically look at a variable (say pain) before and after being on a diet. Statistics for those studies are simple and clear. Tracking things day to day like we’re doing is very new and could show a lot more than the way it’s normally done. I need to find better ways to get the most out of our analyses.
As I develop or find new methods I’ll keep updating the data (new and old).
Thanks again and good luck,
Joshua
Hi
Just a thought, but when we could not get my daughter well for some years after becoming ill (at 13 years old) we invested in a whole body vibration machine which creates muscle contractions without the physical exertion. (Perhaps you could discuss this with someone as to the suitability for you personally. Too much vibration is not a good thing either!)
Perhaps there are others who have tried this method.
Thanks, Linda. I will look into it.
I think this is a fantastic idea!! I’m very excited to participate in the studies and see the results!
All Power to Mendus. Brilliant. Joshua, great thanks and to Cort and supporters as well, always. The powers that were have lost their grip on blocking individual initiative. A great wave of health and recovered quality of life ability is in the works.
One thought re: aspects of internationally-renowned Dr. Martin Pall’s unique work: If there is some optional support system that does not require cell tower radio frequency energy (smart phones, tablets, etc.), that would be ideal. RF does not support recovery and is indeed implicated in the rapidly growing number of cases of diseases like these; I am told cellular/mitochondrial function is disrupted by such technology. Let those who have ears hear. Thinking outside the box — anything healthily new paradigm — might includes options for those with MCS and neuro issues who are particularly vulnerable so they will not be left out of this new wave of sovereign people power. As the folk saying goes, you don’t have to eat the soup as hot as they serve it to you.
Hi,
The only thing I can suggest at the moment, to try to minimize radio frequency exposure and still take part is to keep track of everything manually, that you need to submit for a given study, and then submit it all in one go. The technology is what is making the endeavour possible so we can’t really avoid it completely.
Joshua
This is brilliant, thank you, thank you, thank you! This quote perfectly explains my approach since I became sick “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 am from a scientific background as well and I know this approach won’t work but I didn’t know a better way. I’ve wasted so much time and money.
I am so excited about this new venture. Thank you Cort and Joshua for reaching out to find answers…I have had FMS and CFS for 40+ yrs. What a rough road I have traveled for these many years. Pain, brain fog, fatigue, and many of the other problems attached to these illnesses. Had a good Dr. Until he retired 2 years ago. Now I have the problem of trying to train another one. Have to be the one to tell him that my body reacts badly to so many things that are on the market for FMS and CFS I have just learned to plow through the many bad days with only a few good days. I hope to post and help others by telling what has helped me these many yes. Keep up the good work Cort I have been helped a lot with your posts. Look forward to them everyday. Thanks also to Joshua for attempting new venture I will help as much as I can.
Thanks Joshua and Cort! I will definitely participate in Mendus. I echo Molly’s sentiments – everyone I know has a (well intentioned) idea for what I should be doing. Everyone has an anecdote about someone who was cured of something by something. And I don’t have the time, energy or $ to figure out what might actually help me from the quackery. I’m not a scientist but am wondering – can or will the studies account for the other non-controlled remedies that all of us are trying all the time? Or is that too complicated and too much to expect?
Hi Jody,
You might not ‘technically’ be a scientist but you seem to think like one! You raise an incredibly important point and one that needs a lot of thought.
How do we determine that supplement X (the one we’re interested in) has an effect when you’re also taking supplement Y, narcotic Z, etc etc.
Well, it’ll be tough. There are two basic options and I think it will ultimately be up to the individual to decide for themselves which to choose.
Obviously we need some kind of baseline in order to see what supplement X does. It would be nice if that baseline was free of all other treatment effects. But this is pretty hardcore. It would involve participants going off all of the things they’re currently on. Further, it might take some time for those treatments to washout. The up side is you’d have a clean baseline. The downside is you may throw yourself into a pretty crappy state which could be damaging. I don’t recommend going that route. At least not yet. The other option is simply to leave everything else as is and try to maintain the other treatments as steadily as possible. Try not to miss too many CoEnzymeQ10s because the results of the study you’re in could be influenced not by the new supplement you’re trying but by the fact that you missed you Q10.
There are a ton of issues like this that will crop up and are important to deal with. Hopefully we can have some nice discussions to try to sort them out.
Joshua
I’ve wondered for a long time about how to have studies organized by patients. But always thought that would seem utopic.
Totally excited about seeing this finally happening.
I think LDN is a great candidate for this.
Brilliant idea. Take our future into our own hands as well as the medical community begins to (slowly) understand the devastation of ME/CFS.
I’ve already done my own diet “study” and know absolutely cutting out all of my food intolerances (I had my blood tested) drastically improved my IBS and helped decrease pain and energy. I’m not anywhere close to being healed but my stomach doesn’t cause me grief very often. I had lost 25 pounds in a year (down to 85 lbs) but gained it back after cutting out my intolerances. I still need much more energy and struggling to find solutions to help.
I would participate in an energy study, (not exercise study). Maybe wearing a heart monitor, finding a way to check O2 levels on a day to day basis, find out what happens when we struggle through an “ordinary” day. We already know quite well what exercise tolerance tests do-they nearly kill us. I know as I had to participate in one as a back to work assessment.
Hi Katie,
If you’re not already signed up you should be! Great ideas.
An activity study could actually be completely non-strenuous if people just carried around their phones in their normal daily routine. As I mentioned to Cort, that study might actually blow a lot of people’s minds! If we could show that the amount of walking around the house predicts fatigue either same day or perhaps the next day. It might tip a few people off as to how serious this really is. Assuming the study worked of course. 🙂
Love the idea of figuring out a way to measure O2 levels.
Joshua
Thanks for your positive comments Joshua. I remember taking a kinesiology course many many years ago. We measured our Vo2, not via a machine but an equation of some sort that of course I do not remember. I’ve played around with a heart monitor app and I can plainly see walking up the stairs pushes my heart rate (and I assume my respirations) almost into my aerobic zone. For so many years I was very active and was committed to increasing my aerobic activity, now I’m totally opposite, trying to keep under my aerobic zone which really is so against my normal philosophy. I go visit my doctor and I always look the same, I do not look sick. Having concrete objective day to day data may be invaluable in so many ways.
I don’t understand the “Co- cure, List Serve” business. I am a Fibromite and wanted to cry when I saw we weren’t involved. 🙁
Sheryl, we just opened up our fibromyalgia community at Mendus. Maybe we can do some of what you were hoping for with Co-cure on our own.
Joshua
Hi, the “co-cure” listserv is “ME/CFS and Fibromyalgia Information Exchange Forum” and info about fibro is posted almost as often as info about ME (not as much info lately).
I believe the name came from the idea of ME and fibro cooperating together for cures.
One can sign up here, if interested:
https://listserv.nodak.edu/archives/co-cure.html
All the best
Cort, I think you should correct your description of Co Cure. It does publish FM articles.
Janelle quotes the Co Cure purpose statement. I remember when I decided that because I did not have FM, I gave myself permission not to read the FM articles, as my brain fog and cognitive issues get worse. There is, from my measure, plenty to skip about FM, thus plenty to read if that is your issue.
Sarah
Excited about Mendus and glad to participate.
My 10 year old son, myself, as well as an aunt and two cousins have CFS/ME following EBV infection. Antivirals and antibiotics have significantly helped my son. We also have co-infections.
Great idea. I too think LDN is a good candidate for this. The following article about Apple’s research app is sort of related.
https://www.yahoo.com/tech/apples-researchkit-takes-medical-research-years-117781601479.html
I found the fact that Apple released that about a month after I launched Mendus very comforting, in that I must be thinking clearly enough to be at the edge of what’s new and what people want. But at the same time… how can I compete with Apple!!! I’m just one guy… with CFS. 🙂
Joshua
had this for 20 years and hashi since 13 and cfs been so unwell I would love to do a trial need to read how to do it when awake lol
While I think it’s a good idea to ask patients in informal studies like this, to see how they compare with regular scientific studies, I’m left wondering why they’re not challenging the established way of gaining information. Why the reliance on fixed questionnaire questions of a similar nature to others ie reliance on asking about core symptoms, with the same answer suggestions ie fatigue-poorly defined fatigue too? Open questions, would be better, being mindful of the weakness of only asking already biased questions. Some discussions would aid understanding, but make it difficult to collate the information, I guess.
Hi,
Part of the reason for using fixed questionnaire questions is so that new research can be compared with old research. Another is reliability. As an instrument is used more people understand it’s responses better and are more confident in it. That said, I think no one would argue that there would be more information in an open ended question. The problem is how do you analyze that data in order to test your hypothesis? There are ways to do it but they’re difficult and often do not lead to a quantity, which is how we assess pretty much everything.
Joshua
Thank you Joshua and Cort. How I appreciate this great leadership. I ran an active, large support group for 13 years, but now too disabled to do much. Very frustrating. Joshua, I think I have some important ideas as to the characteristics of the susceptible group for CFS/FM. Will check in at your site.
Great!
I was heavily involved in research for 30 years. 15 years ago, my mother became “afflicted” with a condition that has been referred to as “Morgellon’s Complex”. Being Mr. Science, I mounted my white steed and prepared to plunder the nefarious illness.
ONE THING became immediately apparent. People with little or no science background seemed to say one thing that got my attention, “Gee.. I never noticed that until you mentioned it”. This concerned me and I looked at that aspect of the illness a bit closer. It became obvious that while there were clinical indicators, a substantial number of case fell under what is termed “Folie Aux Deux”. This means people who become symptomatic because they read about it.
The internet is a fertile ground for wild imaginations. Contrails have become Chemtrails and drinking Sodium Hypochlorite will make your body alkaline and cure everything. NOT.
The majority of CE/CFS/CVID patients I hardly consider to be prone to an increase in symptoms merely by reading about it.
That being said, I suggest that these data not be made available to the participants, until they have been compiled and written as a cohesive report. Many people will be wondering if other suffer in a similar manner, but I maintain that the cross patient sharing of information has the potential to negate the credibility of any final written product.
Hi Gary,
You definitely raise some important concerns. I can’t say I have great answers/solutions to them but I have thought about them.
I agree, simply by hearing/reading about what is supposed to be wrong with you could lead you to actually having those symptoms. Everyone knows of placebo but there is also the concept of nocebo. Where expectation of harm or worsening leads to exactly that. I also agree the internet has made this a big problem. I’m hoping we can provide a bit of objectivity to weed some of that out when people are trying to evaluate their treatments through our studies.
I’ve chosen, for various reasons, to approach Mendus as a platform where self-experimenters can pool their results to then end up with group data. As a scientist I don’t necessarily expect to publish this work. I think the potential to have publishable research is extremely high though. But too many differences will exist with the established way for most journals to consider us. Having accepted that, my goal became fuelling future research. We may not get the Nature paper for a huge finding, but a group in a lab that were to replicate our results ‘for real’ might. That’s me dreaming. All that to say, I chose to loosen the control, necessarily in most cases, in order for this thing to fly. I completely agree that not letting participants see the results (of others) until after they’re done the study would be better. But, that may mean we don’t have a study at all because people aren’t motivated enough to do it. This isn’t all that different than traditional research where patients are informed a head of time that the durg or supplement is ‘promising’. Further, we won’t likely have enough people right away to have sufficient statistical power for each study. My intention is to leave these studies open indefinitely to acquire data. It may take a couple years for the less popular ones to get a full sample and withholding the results until the end will surely mean the study never gets finished.
So, how do we deal with the issue you raised then? Maybe merging a bunch of burned out CFS and FM minds together we can come up with creative solutions. Are people serious enough to try a ‘self-randomization’ trial? Depending on what we’re studying it wouldn’t be too difficult to have a partner or friend help you acquire and implement a suitable placebo. Then after a set period of time it is revealed to you (and Mendus!) which condition you were in. Then, if you had been in the placebo you could run the active condition. If people are serious about this I think nothing is insurmountable.
Certainly much more could be said about this topic. I’m also considering how to acquire control groups where possible.
Joshua
Measuring the outcomes seems the largest challenge to me. The studies done by researchers use subjective patient observations. I was once in a study, long ago, and being asked the same questions every week or two, it got boring. I could not observe myself that way, meaningfully. Some objective measure, like actometers or step counters or something else I have not read about would make me more likely to believe that some intervention or medication or supplement made a difference to any group of patients. Plus, of course, any immediate negative impacts that caused the patient to stop doing / taking the proposed treatment.
Added to keeping things constant, test one treatment at a time.
Except for diet. My digestive tract stopped functioning altogether — no nutrition taken from food, no function at all. That required six months to make a total change over in diet, to establish homeostasis and a diet I could eat. I did that under doctor supervision. As the rebuilding phases proceeded, I added one food at a time, to see if there were negative reactions to that one food. The doctor cut out several large categories of food I used to eat, so those were not even tested during those six moths. He knew my digestive tract could function but with a limited diet. It was hard — harder psychologically to make the changes (emotional ties to food!) than to follow his program. If I go off that program even a little, I repeat the horrible symptoms that brought me to that doctor. Changing just one food would not have helped me, as I did not conceive how extensive my problem was.
Lots of folks with SEID / M.E. would rather suffer than give up the food, or eat different food than the rest of their family eats. Well, lots of people means me before I hit the wall, and a few people who post openly about eating food they know makes them worse, unwilling to give it up.
I guess all of that means it will be hard to see results on one-food-at-a-time studies. It is easier to make a list, as has been done from time to time, of what people have tried, and their subjective views of no effect / harmful / helpful.
Sarah
Hi Sarah,
i personally know a lot of people with ME/SEID who give up many different kinds of food and try all sorts of comprehensive dietary plans in an effort to alleviate suffering, with varying levels success (or non-success). I also know people whose carers won’t make them different food from what the rest of the family eats, or who can’t do for themselves and don’t want to impose such a burden on their carer. I have never met anyone who simply didn’t want to try giving up a food or multiple foods.
best,
Janelle