The Neuroinflammation, Pain, and Fatigue Laboratory calls it a chronic disease survey. I call it “The GREAT Survey”! The definition of great is “of an extent, amount, or intensity considerably above the normal or average” and it qualifies on all accounts. It’s longer, more comprehensive, and ultimately dives more intensely into the chronic illnesses than any survey I’ve ever taken – and I’ve taken lots of them.
(This survey was introduced in the recent Jarred Younger blog and is fleshed out more here.)
One clue that it’s a level above most surveys is that it’s using machine learning to uncover the gems it will produce. Machine learning is just like it sounds: in machine learning, the computer uses the data it gets to create its own algorithms – which it then uses to reanalyze – which provides the opportunity to produce an even better algorithm, and so on.
Throwing machine learning at a standard survey form would be like using calculus to answer a simple math problem. You only throw machine learning at complex data sets and this data set is intentionally complex.
Instead of focusing only on people with chronic fatigue syndrome (ME/CFS), or fibromyalgia (FM), or long COVID, this survey is embedding people with all these diseases (as well as Ehlers-Danlos Syndrome (EDS), Post Treatment Lyme Disease Syndrome (PTLDS), irritable bowel syndrome (IBS), multiple chemical sensitivity (MCS), multiple sclerosis, migraine, lupus, etc.) in the same data set and then is going to have “the machine” explore how they are related.
Essentially, everyone is getting thrown into the same basket – then the basket is going to get shaken up – and then the “machine” is going to put things together again. The specific aim is to better understand the big suite of pain and fatigue disorders (ME/CFS, FM, IBS, etc.) all of which (with the exception of long COVID) are damatically underfunded. We may see connections pop up that we’ve never suspected before.
It’s a very long survey, but you can stop and resume it at any time (using the same device). Some people finish in under an hour, but it will probably take between one and two hours in total. I did part of it about a month ago – clicked on the link yesterday – and was right back to where I had stopped. As always in these surveys, some of the questions are phrased in a kind of weird and off-putting way – that’s because these surveys have to use validated questionnaires that were phrased in sometimes weird and off-putting ways.
The survey can be completed on a smartphone, but a tablet or computer with a larger screen is probably best. Anyone, anywhere can take the survey.
Chloe Jones – the researcher running the study – answered some questions about herself and the survey.
Chloe Jones Interview
“My mother became severely ill with fibromyalgia and ME/CFS when I was 4 years old.” Chloe Jones
I asked Chloe Jones, the researcher behind the study about it and herself. It turns out she was inspired to take on these conditions through her mother – who has ME/CFS/FM.
What is your academic background?
I am currently a graduate student within the Neuroinflammation, Pain, & Fatigue Lab with Jarred Younger at the University of Alabama at Birmingham (UAB). I am enrolled in the Medical/Clinical Psychology doctoral program at UAB. Prior to UAB, I conducted cognitive neuroscience research at the University of Connecticut. I have been conducting neuroimaging research for the past five years and conducting neuroinflammation research with Dr. Younger for the last three.
How did you get interested in ME/CFS?
My mother became severely ill with fibromyalgia and ME/CFS when I was 4 years old. As many of your readers did, my parents became their own investigative team, as they received little help from clinicians at the time. From that age, I always tried to understand the illness, constantly making my own hypotheses, and always wishing that answers were near. I never stopped asking questions or searching for answers.
How is the survey different from others of its kind?
Thank you for your interest in the project! This survey aims to investigate different facets of illness that may exist between and across chronic illnesses, particularly pain and fatigue disorders that are poorly understood. Typically, researchers control as many variables as possible to isolate a factor of interest, but this is not always reflective of reality.
The complexity of patients’ medical histories and illnesses may be central to uncovering critical underlying features. Rather than trying to isolate a singular, distinctive, or unifying feature among all ME/CFS patients, (such as a particular genetic mutation or virus that could explain all patients), it may be more fruitful to investigate the various dysfunctions that might exist.
Furthermore, we can investigate if any of those identified facets overlap with other medical conditions. This is especially true in that our ‘label’ for ME/CFS is based on a clinically useful definition, but this label is not based on any clear biomarkers or etiology, and therefore might be applied to a variety of underlying causes.
Although there have been research findings identifying certain biomarkers of interest, these are not used clinically to diagnose patients. Some patients may receive different diagnoses but actually have a shared etiology, while other patients may be given the same diagnoses but have different underlying dysfunction. The complexity and diversity within the ME/CFS patient population has traditionally been a challenge in research, while this project embraces that complexity.
Why are you using machine learning? What is it and what does it bring to this particular project?
There are two main benefits to applying this type of analysis. One, this type of analysis can be applied to varied and complex datasets to uncover patterns that may not be readily identified with more traditional methods. It is particularly powerful with large datasets, and in this project we aim for a large sampling of a variety of illnesses.
Secondly, one goal of this project is to minimize the bias from typical research or clinical definitions that are often useful, but flawed. Rather than apply the traditional definitions of ME/CFS to patient groups, we can assess more nuanced connections with emerging patterns in the data.
What do you hope to get out of the project?
There are many research questions that we can investigate with this type of dataset, however, the main goal for this project is to identify facets of illness that exist between and across pain and fatigue disorders that may more accurately represent underlying mechanisms.
How many participants are you aiming for (and why), and how many you do have right now?
We currently have collected around 2,000 responses for this survey and hope to capture 10,000. Because we want to capture the true reality and complexity of humans’ health and functioning, we are interested in those with all different health conditions and health statuses to respond. That includes those with pain and fatigue illnesses like ME/CFS and FM, related illnesses like EDS, IBS, MCS, MS, SLE, as well as seemingly unrelated illnesses that are still informative to assess the relationships between and across disorders. Those without any medical conditions or health concerns are also encouraged to participate if interested.
Lastly – This is a VERY long survey – the longest I’ve ever taken. Why is it so long? How does its length support what you want to get out of the survey?
We understand that this is much longer than your typical online survey. I truly wish that we could capture this degree of detail in a fraction of the time, but we are aiming to collect information that is typically not asked, and may point us in important directions. This is a very comprehensive survey, and we are grateful to anyone who is willing to provide their data to this dataset. Each respondent is providing uniquely valuable data, and the more data we collect the more we may be able to uncover.
For those who are unable to finish, the amount of data they did provide is still very useful, even if they can only spend 15-20 minutes. There is a core question set that takes most users around 45-60 minutes and an extended set of questions afterward for those who would like to provide even more detail. The survey also varies in length depending on one’s responses. Thankfully, responses are automatically saved to the server and participants can take as many pauses as needed. 20 respondents will also be randomly selected for $50 e-gift cards of their choosing.
Plus, anything you’d like to add? 🙂
The survey focuses on ME/CFS, FM, and related disorders, but it is open to all participants who are adults and are proficient in English language, including those without any medical conditions at all. Some of the survey questions may seem strangely worded or confusing; unfortunately, this is usually because it is taken from a standardized instrument and cannot be changed. However, any feedback about any aspect of the survey is always appreciated. I would also like to say thank you to you, Cort! Thank you very much for your interest, your curiosity, advocacy, and outreach.
Use the link below to start the survey
60 minites survey for severelly ill ones? you can return but even then…I want to do it Cort but do not know how? 3 minites a day? that takes ages… could not read your blog, only title, survey and went straight to that and there i saw it…60 minites..Help!
Yes, it would be great for people who are severely ill to do the survey because they represent a unique group but I imagine that it’s beyond most of them. If enough people who have a more moderate illness do it, though, Chloe will have a lot of data to chew on.
I’m still plowing through it. 🙂
i will see what i can manage with 3 minites and really hope that the survey is not closed before i am able in time to end it. do you know when it will close?
🙂 As Chloe said, you don’t have to do all the survey for it to help. I will try and find out.
Chloe said they expect it to be open until summer and it may stay open a bit longer.
Thank you so much Cort!!! I will see what i can do.
Fantastic to hear that this research is being done. As an FM and CFS ‘sufferer’ for 34 years, I am more than willing to complete it (over a number of days). I look forward to learning from the results and, maybe, getting some better understanding and support from the medical profession.Thank you for doing this survey.
I started survey but didn’t get far. Put my phone down and browser was closed — how do I sign back into survey. Sorry my computer skills are sad and my brain is slow
You should just be able to click on the same link that you used to start the survey. If you clicked on Save and Continue your answers should be saved. If not – I’m not sure.
Is the survey intended for residents of the USA only, or can others do it as well?
Pretty sure it’s international / open to all. I did this survey when read about it in Cort’s earlier blog and am outside US. I agree it’s Great 🙂
I have mostly mild-moderate symptoms, and took 2-3 sessions to do the survey during a good week. It is full on and exhausting but you can just take as long as you need. Even if you only manage some of the Qs that will still be valuable.
I felt validated and empowered just being asked so many good questions – it was a useful process. Love how it is going to analyse and compare the various health conditions, thanks Chlöe and Cort
Thanks Louise for sharing your experience 🙂
It asks which country
I’m in Australia
It is open to everyone.At the end of the survey,you will be asked where you are from.
Yes, it is a beast of a survey and it took me two ‘goes’ to get the whole thing done.
One question that plagues me is why, if ME/CFS is usually considered a disease of exclusion, are people who have Ehlers-Danlos not excluded. It isn’t a disease, but a genetic condition (mostly agreed upon). With my symptoms, I’m always asking myself, “Is this from ME/CFS or EDS?”
The former assistant at Stanford’s Chronic Fatigue Clinic told me that a very high percentage (can’t recall now) of their patients also have EDS. For myself, I have always had less energy than my peers, but when I developed ME/CFS I had even less than that.
Apparently of everyone who has hEDS, about 1/3rd don’t have any energy problems, 1/3rd develop problems later in life, and the rest have issues from the beginning. These numbers are only guesses as nobody has done rigorous research on this. It may be that the ones who fit the EDS criteria but don’t have any issues are undercounted as doctors don’t routinely screen for this unless there is a complaint. And many doctors aren’t even aware of EDS or have a distorted idea of how it presents or think it is too ‘rare’ to consider.
Hope Jarred can help sort this out.
..”disease of exclusion” only means the diagnosis of ME/CFS is made by way of exclusion, meaning if other diagnosable diseases that cause fatigue ecc. can be excluded it is considered CFS/ME. This is due to the fact that there have not been found any biomarkers yet.
Do if a patient appears with debilitating fatigue lnesses like Lyme, EBV- MONO, Low iron have to be “excluded”.
That was LONG but quite comprehensive and I have high hopes for what they can mine from such extensive data.
No “gist” on your last 2 posts. Please bring it back for the sake of your brain-fogged readers.
The GIST took a little vacation – it will be back on the next blog 🙂
hihi !! what a cute reply, Cort! Love your sense of humor!
Phew, have done it. Pretty exhausting, however if it gives us some answers/ help in the long run, it was so worth it. Said I don’t get headaches, I’ve got one now, ha ha. Best wishes to everyone🙂
For those completing the survey, I would suggest you have the following information in front of you before you begin so you don’t have to spend time searching for it:
A list of your current medications and supplements.
A list of any medications you may have taken in the past but no longer take.
Dates of any illnesses, surgeries or hospitalizations you have had in your lifetime.
Family history of diagnosed diseases and ages at time of death if applicable.
Good idea, Pat!
Is it also suitable for ME/POTS patients? And for patients where pain is not the worst or oven absent? Are there also questions about breathing problems? Because the research takes so long, I am afraid that a selection bias may occur.
I also don’t understand that if you only fill in a part of the questionnaire it will help. This creates an incomplete picture in algorithms because a few completed questions can then become dominant.
if i have energy i try to participate in this research 🙂
I just completed it over two days and several breaks. Absolutely crashed now but really glad to be able to take part. I think we need more surveys like this. Can be a bit frustrating at times as you sometimes want more options but over all very good and hope we get to hear the results that they are getting. I’m in the U.K. for anyone wondering who can take part, so think it’s all inclusive no matter where you live. Thank you Cort for bringing us this kind of study.
it would be nice to do that and maybe help them notice any patterns that were somehow missed but it sounds like its too long and complicated. I have been moderate most of the time symptom and energy wise since the first year of the illness, but in the past year I started to really notice a set of odd new symptoms that I couldn’t really place e.g. acute episodes of dehydration by failing to retain water, easily sprained wrists that take ages to heal, neck sometimes becomes very sensitive to bumps when riding e-bike, a few months back this transitioned into chemical hypersensitivity on a new level that rapidly spreads from one thing to another e.g. laundry detergent s, sofas, tables, even air purifiers, I have no idea what the cause of this change is, i’ve been slightly sensitive to certain chemicals since 2 or 3 years into ME/CFS but it was always manageable and didn’t have a huge impact on my life until the past year. I also started getting random hot flushes of the face, asthma like breathing problem / reactions sometimes, and these reactions seem to be linked to food also, I was previously eating everything without much apparent issue, just did a food intolerance blood test and got 100 on a scale of 0 to 100 for antibodies to ‘cows milk’.
Look into MCAS (Mast Cell Activation Syndrome) if you haven’t already.
I can’t get back on and I’m not finished
My heart goes out to Chloe because her mother has suffered with severe ME/CFS for so long. I also applaud Chloe’s attempts to find information that may lead to diagnosis and treatment of fatiguing diseases like ME/CFS.
But, I believe there are some serious problems with this survey. Unless, I missed it, there is no privacy or confidentiality statement at the beginning of the questionnaire.
Second, the open-ended nature of the questions I went through will make it hard to query data, whether by machine algorithm or human evaluation.
Since 1990 our organization has run the National Birth Defect Registry, an online research project designed in collaboration with seven scientists. https://birthdefects.org/national-birth-defect-registry/
We collect data on all kinds of functional and structural birth defects and health, genetic and exposure histories of both parents.
The registry has identified links between patterns of birth defects and similar exposures. We have had a history of success with registry data which has been presented to the National Academy of Sciences; the EPA; congressional committees; the Veterans Administration and in national media forums.
I started this the day you posted it. I thought that since we can save & return, I could manage it over many many days. I did already put in a lot more time & energy than I really have, but wanted to help…….well, I just went back to do some more, only to find that it stuck me back at the very beginning, where you give consent. I did save it every time I worked on it, & previously it had allowed me to return to where I left off. So, now I don’t know if any of my effort was actually retained, or if I wasted all that time & energy. (I’m mostly bedbound & have no help, so it was really a major effort to do all I had so far.) And, btw, I already put WAY more than 60 mins into it, & the bar at the top showed I still had a long way to go, so it is NOT a 60 mins. survey.
Also, there are quite a few questions that do not apply but they did not allow for that answer. And, there are questions where you are supposed to slide a bar along to the amount that fits you – one had to do with how much sleep it takes for you to wake feeling refreshed….there was no option to say that you NEVER wake refreshed.
So, while I think this is a wonderful idea, I am really upset with it….and while I probably wouldn’t wind up being among those who get a gift card, & that is not why I worked on it, I am also upset by the fact that I probably do not have a chance at all for it now. I’m on SSDI & just my rent in a tiny apt is almost 150% of my income (yes, 150% – way more than my income), so any extra help, or even the possibility of it, is appreciated, & after doing all that only to be back at the start, well, again, it is upsetting.
I have not started the survey yet, ‘haven’t even peeked. BUT, in reading through the comments, I do have a couple of questions:
1) Does the survey request personal identification information; and if so, why? Where does this information go and where is it stored? Who has access?
2) If I’m going to sit down and fill out all of this information (for the millionth time), I’d like to have a hard copy for my records. Is there a way to print the completed survey?
Thanks, Cort, for your help. I would really like to respond because I’ve had many medical issues arise after having had Chronic Lyme for 50+ years. It’s A LOT of history.
J’ai répondu à presque toutes les questions mais il y a des problèmes de connexion et des blocages. Dommage, trop d’énergie perdue. Il faudrait que le système fonctionne convenablement.
Done. I feel I like a deserve a gold medal after that. That was a looooong survey 🙂 Hopefully it helps to spark some areas to explore.
Using firefox browser, clicked to return to the survey and it sent me back to the start, have contacted them about this, I hope all the answers won’t be lost I was nearly at the end, it took ages.