In this case, I actually did create it that quick while lying in bed, and used nothing more than IFTTT and a Google Spreadsheet. I probably should have mentioned "without coding" in the original tweet to be clear about that, cause I think it's a pretty big factor.
Literally anyone with the least bit of tech savvy and a recent Android phone could do this, and it's actually more effective than the original web app I used.
And actually it was even simpler than that. No coding involved - I did this with nothing more than a handful of IFTTT recipes. Hook it up to Google, listen for "Home" commands, and send them to a Google Spreadsheet. I have one for each type of entry I wanted to log - meals, symptoms, medications. Planning to add activities and some general exercise capturing when I have another 20 minutes (ha).
And I'll add some biometric logging, although my ultimate goal would be to actually script that to get data directly in from my BP monitor and a scale automatically. Same with sleep data from the app I use to track that. Both would be easier if I were using one of the devices or apps for tracking those that IFTTT supports.
The idea is to set up and collect as much as I can with as little manual entry (i.e., typing) as possible, with as little coding as possible.
> First, the indicators could be used in the future to help diagnose the condition, as they were present in 83 percent of the patients with chronic fatigue syndrome. Second, it suggests that diet and things like probiotics may be a way to help treat the disease by getting the gut microbiome back in balance.
This kind of reporting bugs me. They might have found a possible correlation here, that's all. Yes, that first item is a possibility because the correlated indicators could be used to detect conditions related to CFS, but the second item is pure speculation about cause and effect, and is jumping to conclusions about it pertaining to treatment.
Personal anecdotal insight - I have a genetic condition that affects both my gastrointestinal system and causes chronic fatigue-like symptoms. I'm treating both separately but because there's an underlying condition affecting both independently (probably), it doesn't mean that treating one will improve the other. It's a longshot possibility, but saying "may be a way to help treat the disease" is just interpretation and overly-optimistic hype.
The indicators they found do sound really interesting though. If validated it would be an amazing benefit to patients just to confirm that there's a biological factor to these conditions.
I did an IgG food allergy test recently that I was extremely skeptical about in advance, but the results were consistent with my own observations over the past few years - namely that I was having severe reactions to some dairy. The tests showed exactly that as my issue. So I've eliminated dairy from my diet and I'm seeing what effect it has.
The general impression I got from my research is that some of these tests can be useful, but only when used in conjunction with other observations and case history. I do agree that some can be pretty scammy though - especially in their claims of the things they can fix. So like the parent poster, I'm really eager to see how these actual science-backed and FDA-approved solutions do for people too.
Also, stress and burnout are certainly a big factor in depression and fatigue, but these autoimmune problems are very real and can also have similar effects. I personally have a diagnosed autonomic nervous system disorder that apparently contributes to both the autoimmune and gut issues I deal with, as well as my severe fatigue and impaired mental state. I don't know that those areas - the gut, energy, and brain - are directly related on their own (the doctor I'm working with thinks they are), but I'm happy to try anything that might help any of them, and see what happens.
Just bear in mind that autonomic dysfunction happens in everyone after acute stress, and it is common in chronic fatigue syndrome [1]. It looks like autonomic dysfunction is perhaps just a symptom of fatigue (or, it is caused by the same part of the brain that generates the sensation of fatigue).
I'm not aware of any research showing that dairy intolerance can cause fatigue and depression. There is some stuff about casein acting like dopamine, but it seems to be pseudoscience.
We do know that stress definitely causes gut issues (changes in motility, absorption, and bacteria). Whether there is any causality in the other direction (apart from when you have an active infection), however, isn't really clear.
It can be difficult to definitively figure out whether or not you are actually intolerant to something. I thought for a while that I was intolerant to potatoes, but further research shows that I'm not. (Right now I eat them regularly and have zero problems). If you're interested in really figuring out whether dairy is causing you problems, try introducing small amounts of dairy when you're feeling great and see if anything changes. (Just make sure you're not lactose intolerant before doing that!)
Right, you've described my current plan - to eliminate it entirely for a while to see what happens, then slowly reintroduce things to see if I get any reactions. Besides the IgG test some of my own observations were acute reactions in my mouth from certain cheeses, and things like that - so I'm certain there's some kind of allergic reaction to... something going on. (The test I took specifically did show that casein was the problem in my case. We'll see.)
And agreed that stress can cause those issues with the gut - and for me at a minimum exacerbates other things already going on - but yeah, I'm seeing and hearing a lot about how it goes the other way but I'm not seeing the science or experiencing it yet in my case.
Also - in my situation the autonomic dysfunction has a strong biological component. I have postural tachycardia and peripheral neuropathy caused by a genetic collagen issue (Ehlers-Danlos), so I know that there are major physiological factors going on and contributing to all my various issues. And then stress - which is aggravated in my case by wildly fluctuating heart rate - compounds all of that, creating a whole vicious cycle of impairment. Unraveling this whole web and picking away at parts of it at a time is my current challenge. But I am pretty confident that while depression contributes in some ways to my fatigue, it's also majorly impacted by my heart rate and probably some adrenaline issues common in Ehlers-Danlos.
(I appreciate this discussion and your thoughts, by the way.)
>I'm seeing and hearing a lot about how it goes the other way
Well, you need to be careful who you listen to. There are an infinite number of dubious naturopaths (and many MDs) who buy into dubious theories and spread them. There are a lot fewer people who will tell you "stress causes burnout, which causes POTS, ANS dysfunction, depression, chronic fatigue/pain, digestive problems, etc.", even though this is based on a more correct understanding of how the body works. The USA seems particularly bad for MDs believing dubious theories, for a number of reasons.
> acute reactions in my mouth from certain cheeses, and things like that - so I'm certain there's some kind of allergic reaction
If it is an allergic reaction, it will show up on an IgE. Bear in mind, though, that some cheeses are just sharp.
>Also - in my situation the autonomic dysfunction has a strong biological component. I have postural tachycardia
The autonomic nervous system is biological/physiological, but is modulated by stress. It doesn't really make sense to separate these systems into "biological" or "psychological".
Postural tachycardia and depressed parasympathetic nervous system are typical symptoms of CFS caused by burnout from stress. I had these symptoms myself, very severely (I had periods where my digestive system didn't move at all, and where I had atrial fibrillation due to the tacycardia). However I've recovered completely from it now and have no symptoms.
>caused by a genetic collagen issue (Ehlers-Danlos)
Did you suffer from these symptoms your whole life? If not, I'm not sure how it fits. Typically CFS comes on suddenly and/or you have relapses and normal periods...if that's how your illness manifests then I don't see how a genetic collagen could explain it. Also, allergies are a different issue to a genetic collagen problem (and neither really explains depression). I have a moderately severe allergy (hay fever), but zero depression or fatigue from it.
Owning a rabbit isn't hard or dangerous to them, but yes - letting them have free reign of a room means completely bunny-proofing it. I've lost so many cords...
I have an autonomic nervous system disorder (postural tachycardia) that causes my heart rate to skyrocket at any kind of physical or emotional stress. Basically it's like my fight-or-flight response is broken and over-reacts to everything (even from seeing blood or just standing up). Serious emotional issues can triggers panic attacks for me pretty easily.
I went through a battery of heart tests that all turned up normal and I was diagnosed with anxiety, until years later when someone thought to test my nervous system. So yeah, I can relate.
But those heart tests even included wearing a monitor that didn't tell them anything useful other than that it was elevated at times... but not that there was a real physiological underlying cause beyond simple anxiety. Not sure they'd put any more interest in a Fitbit's data.
I don't have your condition but on its worse times my circular system was about to shut down, my 4 limbs were cut to sustain the rest. For months Any activity in one part of my body would cause the rest to feel numb. Even typing with two hands would saturate my brain. The story makes them smile as in "you wouldn't be speaking anymore if you experienced this". If I had a trace of the sudden lack of blood pressure they'd at least have something quantitative to consider rather than borderline incoherent speech. That said most generalist wouldn't consider it anyway as you said.
That's really interesting - I havent heard of those kinds of problems outside of autonomic issues. You actually got diagnosed with something else related to cardio that causes that?
And yeah if it's low blood pressure-related that's hard to show them, since it changes so much and will be different in the doc's office than normal, and because there's no real way to do continuous BP monitoring the way you can with heart rate. Luckily in my case there's a simple test you can do at home or in a doctor's office to see the BP drop quickly.
So far not, I have tests booked next week. My 'wikipedia' self diagnosis was something similar to takotsubo syndrom. Emotional pain -> hormone flush -> broken heart muscle functions -> BP shut -> vaso-constriction reflex attempting to restore BP. Few weeks later I had a feeling of 'clogged artery' on my left side. No pain though, otherwise I'd have gone to a hospital because it would have seem like an infarctus. Looked like a very bad BP, very bad diet (sadness->eating shit), fat deposit, occlusion, near infarction. I suspect it affected my brain too, I lost control of my left side for sophisticated movements, for months I couldn't type with both hands while reading what I was typing (had to alternate one word, check, next word). Things are coming back now but still I'd love to have a full checkup (angiography, brain scan) to avoid pushing too hard on my system before the time is right, problem is no doctor will send you for such tests unless you're crashing in front of them. Takes time. For a year I wished for more non invasive medical monitoring and tests..
Yep. I've been diagnosed with orthostatic hypotension too. I have bouts of low blood pressure, so it can drop when I stand too quickly or for too long, or when I exercise. My resting pressure doesn't read as low but I still feel the effects of it and treatments for low BP help my other symptoms...
There's no cure or anything, just a handful of treatments for the symptoms and to keep things under control. For the heart rate issues I take Xanax periodically as needed - it keeps anxiety from building up and setting off my heart rate (which then feeds the anxiety in a vicious circle).
The autonomic problems also cause periodic drops in blood pressure so I take a medication for that, but also have weird treatments for it like a high-salt diet and compression stockings I wear very day. I also take an ADD med for the cognitive impairment that comes along with drops in blood pressure.
I also have major on-going fatigue and gastrointestinal issues related to the autonomic problems (turns out your autonomic nervous system runs EVERYthing), and I'm about to be tested for food sensitivities to see if changing my diet might help those.
I recently learned how the SNS, pSNS and SNS are linked to every part of your body. Changed my mind about the potential spread of psychosomatic disorders.
I think it's people usually don't get that these are often just random and not always tied to an event, but vice-versa. Certain situations and interactions can lead up to or trigger attacks, but when it's a real disorder with the fight or flight mechanism, there's often no rational meaning to the sense of panic.
In my case my attacks turned out to be related to a disorder of the autonomic nervous system, which (among lots of other things) results in my response system overreacting to stimuli. It took me a long time to get diagnosed and I've learned to cope by rationalizing my panicky feelings as nothing more than flawed biology. I know that there's nothing really wrong, and I can calm myself down, telling myself it's just my screwed up vagus nerve, before an attack becomes full-blown. Thanks to that I was eventually able to taper off taking Xanax regularly.
But while going through that process I had days where I couldn't even work, and even had a boss drive me to an urgent care place once in a full-blown attack. The work at the time was definitely stressful, but I think the panic attacks exacerbated the work more than the other way around.
I've been wondering how good the continuous readings were on it. I'm actively considering the best device to track my really complex heart rate issues (I have postural tachycardia).
But I don't use an iPhone, so Watch might be off the table for the near future.
My personal experience is that the Apple Watch's heart rate readings are usually within 5 minutes of my AliveCor. Unfortunately, none of the Android watches currently on the market have a sensor that's particularly reliable. For now, I'd say a Garmin device or an AliveCor are the best bet for non-iPhone users.
This is a very valid concern because I used to own a Zeo headband that did a lot of the same stuff, and when the company went belly-up the cloud service disappeared, leaving all their customers with a useless bedtime fashion accessory.
Really encouraging to hear the developer's reply that the their APIs will be accessible over wifi and that they'll even be open-sourcing some of their stack. Wonder if they specifically learned from what happened with Zeo. I'll definitely consider this as a replacement.
Actually Zeo had a very nice serial connection and I never uploaded any of their data, pushing it in realtime to my HA system. But yeah, I cry a lot that they are gone, it's almost impossible now to get a headband replacement.
Seems like the experience is pretty similar with a lot of these disorders. I have an autonomic nervous system problem that overlaps significantly with "chronic fatigue," and I've seen a lot of patients go through similar "why can't you just..?" discussions with family and friends. I've also had similar experiences to what you describe with your school situation, but also with employers. It's a special kind of stressful when your livelihood is on the line and your employer won't take your issues seriously, and you have to struggle to medically validate your circumstances when you can't find a doctor who understands it either.
For most people with poorly understood issues like these, getting an actual diagnosis is like an emotional and social breakthrough - complete validation that something's really wrong.
I recently found a book that's all about these kind of diseases ("invisible chronic diseases") - it has whole chapters dedicated do dealing with the problems you described.
In this case, I actually did create it that quick while lying in bed, and used nothing more than IFTTT and a Google Spreadsheet. I probably should have mentioned "without coding" in the original tweet to be clear about that, cause I think it's a pretty big factor.
Literally anyone with the least bit of tech savvy and a recent Android phone could do this, and it's actually more effective than the original web app I used.
Edit: clarified the time it took