Note Taking - Do you do it? How do you keep track of all your research & reading?

[Rufous McKinney]

whether they could conjure up an image in their mind, and finding his scientific friends generally could not, but his non-scientific friends could.

wow- what is the brain doing if there are no visual images....?

seems to me visuals / internal movies and illustrating a thought happens constantly.

 

[godlovesatrier]

@Hip these are the people I work with every day. My complete opposites 🤣 I've always been able to visualise. My brain is definitely not adept at logical systems. Yet it's where I find myself and with ME there's no hope in hell of finding a new profession. Maybe a cure will come along and change that. We can hope.

I could not remember the man's name but yes I remember reading the research many years ago. Sometimes I'll speak to someone at work who is basically your a typical scientist in the sense that there brain is wired one way. I come along with my creative mind and I often get a look of sheer horror or total confusion! Different minds haha. It certainly makes work..... interesting.

@Rufous McKinney god that sounds horrible. I must admit mentally I've always been able to keep going on the whole. But physical tasks can still knock me down quickly. Simple stuff nothing major. I definitely seek to be more physically effected.

You could also look at xmind @junkcrap50 which lets you build mind maps with nested statements. It's easy to use. I am pretty sure it's free. I don't use it but someone I know does.

 

[Hip]

wow- what is the brain doing if there are no visual images....?

Good question!

Speaking as someone who seems to have a more mathematical-logical type brain, rather than a visual imagery type brain, I tend to think in terms of the functional features of objects, rather than their visual appearance. So I tend to notice what objects do, rather than what they look like.

So for example, if you take an electrical wire and a water pipe, these look fairly different visually.

But in terms of what they do, they share certain functional characteristics: they transport a substance from one point to another along their length (that substance being water or electrons), with the substance pushed along by a force (either water pressure or electrical voltage).

I think mathematical-logical thinkers tend to see and classify the world in terms of how the various elements of the world function and interact, rather than what they look like.

If I see something new, but it has functional features similar to something I already know about, I will get a feeling of "resonance" in my mind, as I observe that the functional features of one object nicely map onto the functional features of another object that I am already familiar with.

I could not remember the man's name but yes I remember reading the research many years ago. Sometimes I'll speak to someone at work who is basically your a typical scientist in the sense that there brain is wired one way. I come along with my creative mind and I often get a look of sheer horror or total confusion! Different minds haha. It certainly makes work..... interesting.

I think you can be a creative type in both the logical and visually artistic worlds. But they are different sorts of creativity.

Some scientists have little imagination, and just like the empirical facts. Other scientists like to use their imagination to create interesting theories. So usually the theorists have more imagination and creativity than the empiricists. Though science needs both types, because imaginative theories ultimately have to be tested against empirical facts.


But people can also be creative with visual imagery and design, and conjure up beautiful things. They can start with a blank canvas, and their visual ideas just flow from their mind, filling up the canvas.

I think we need more visual thinkers designing the world around us, to make it more beautiful.

I am not a fan of modern architecture, those nondescript glass and steel office buildings, new airports, new sports stadiums, etc, which look to my eye cold, clinical and logical. I think architects these days spend to much time designing buildings on CAD computer software, a logical process which I suspect kills their organic visual artistic creativity. It's hard to find a modern building which is warm and homely, and reflects human emotions or the human soul.

 

[Rufous McKinney]

I think architects these days spend to much time designing buildings on CAD computer software, a logical process which I suspect kills their organic visual artistic creativity. I

Nobody can afford to pay for pretty, or creative any longer. Gone are gargoyles and stained glass. No Carved Bear is on the end of the new bridges, they are just ugly cement strips.

Some scientists have little imagination, and just like the empirical facts. Other scientists like to use their imagination to create interesting theories.

There is alot more than just those two ranges of being within the land of science.

Being acutely observant....is a major aspect science. Being acutely inquisitive.

 

[godlovesatrier]

@Hip you have a very good point about architecture. Manchester is always being redeveloped/developed at an almost constant rate since the IRA bomb rejuvenation went into full swing all those many years ago. You certainly don't see greenery used to good effect, in fact the council are hell bent on cutting down all the trees - which just makes it even more depressing. Not that the city is depressing, but there were some rather nice very old trees, now all cut down - not all replaced by worthy saplings.

 

[junkcrap50]

I believe there is one in the US too, run by the NIH, which deals with patients whose illnesses don't seem to be understood or treatable by regular hospitals.

Wait really? There is an NIH clinic for any regular patients who have difficult cases? Damn, wish I started there. I wonder what their workups are like. They must end up ruling out EVERYTHING.

So my computer has become a sort of artificial memory, or a prosthetic brain!

Haha. I call my parents my "back up hard drives" when they come to doctors appointments with me (I'm much too old to have parents come with me) to help remember the research.

 

[junkcrap50]

I am not a fan of modern architecture, those nondescript glass and steel office buildings, new airports, new sports stadiums, etc, which look to my eye cold, clinical and logical. I think architects these days spend to much time designing buildings on CAD computer software, a logical process which I suspect kills their organic visual artistic creativity. It's hard to find a modern building which is warm and homely, and reflects human emotions or the human soul.

Nobody can afford to pay for pretty, or creative any longer. Gone are gargoyles and stained glass. No Carved Bear is on the end of the new bridges, they are just ugly cement strips.

I totally feel the way. There is an aesthetic health crisis in today's age/society. I don't know if it does or would cost extra to incorporate beauty in building. Was it more expensive in the past? Today, new, modern buildings still end up costing outrageous amounts and they couldn't be more plain. Check out https://twitter.com/wrathofgnon/ and https://mobile.twitter.com/SCP_Hughes/ . They post about this sort of stuff if you're interested.

 

[Hip]

I totally feel the way. There is an aesthetic health crisis in today's age/society. I don't know if it does or would cost extra to incorporate beauty in building. Was it more expensive in the past?

Yes, I'd like to know why aesthetics and ornamentation on buildings is harder to find these days. Was it because manual worker wages were much lower in the past, so in the past you could afford to have ornate designs? Or do people just not care for style and aesthetics on the exterior of buildings these days, preferring a clean unadorned look with no real style features?

Check out https://twitter.com/wrathofgnon/ and https://mobile.twitter.com/SCP_Hughes/

Some lovely architectural images in those Twitter accounts.

 

[Pyrrhus]

Wait really? There is an NIH clinic for any regular patients who have difficult cases? Damn, wish I started there. I wonder what their workups are like. They must end up ruling out EVERYTHING.

Don't get your hopes up. The "NIH Undiagnosed Diseases Program" has been, well, not nearly as successful as the NIH hoped it would be back when it was launched in 2008:

"A small number of patients suffer from symptoms that do not correspond to known conditions, making their care and treatment extraordinarily difficult. However, the history of biomedical research has taught us that careful study of baffling cases can provide new insights into the mechanisms of disease - both rare and common," said NIH Director Elias A. Zerhouni, M.D.
[...]
"The NIH Clinical Center, the nation's clinical research hospital, provides an extraordinary environment for excellence in both patient care and collaborative clinical investigation," said Dr. Gallin. "This new program will capitalize on a rich set of skills already at the Clinical Center to help patients with unusual medical conditions. These patients often partner with us in clinical research to identify new diseases or new treatment."

source: https://www.genome.gov/27026388/2008-release-nih-launches-undiagnosed-diseases-program

The problem, it turned out, was that it was neither "a small number of patients" who were "baffling cases" nor was it the case that undiagnosed patients represented "unusual medical conditions".

The NIH Undiagnosed Diseases Program was inundated with thousands of applications, of which the program was able to accept only a couple hundred cases. In 25-50% of those cases that they accepted, they were able to provide a diagnosis, which may or may not have been accurate...

 

[SNT Gatchaman]

Computer software:
I'd really like to know if there is or anyone uses any specific software people use for organizing note taking. That’s the only way I can think people can manage their notes easily and pull up so much info so quickly to post. I know there are various programs for writing novels, writing term papers, writing research/scientific papers, other research. But, I have no familiarity with them. I was taught the Notecard System and would use literal note cards if I had to write a big research paper. Now people use software.

I'm new to this disease and just starting my journey of learning its intricacies. I've always used MediaWiki (free/open-source, as created by Wikipedia and used by ME-pedia) to organise my own professional medical notes, references and other resources. You can then link to research and other articles and write comments just for you. The software makes linking and referencing other pages easy and quite sophisticated and it can quickly search your whole second brain when your primary one is on a go-slow.

If you want to use MediaWiki like this, you need a server. You can do this for free on a home computer if you are technically savvy (or have such friends), but most people would use a paid hosting service, allowing them to access it from anywhere. While "cheap" (e.g. $10-20/mo), that extra monthly cost may not be feasible for many people.

A hosting service like this usually gives you one-click install for software services like MediaWiki. You would then almost certainly want to hide it behind password access - for your eyes only. This would be particularly important if you wanted to upload copyrighted material like journal articles for your easy reference.

There are many alternatives to this type software, including those running locally on your device. On the Mac I can think of DEVONthink although it's over a decade since I last used it. I would expect its modern incarnation to be a good fit for this task, but others may be able to comment on their experience. If you opt for this style of local software, make sure your computer is properly backed up (PDF).

 

[hapl808]

I use mainly Evernote as my memory has become pretty poor. People still think I have a good memory, but that's mainly because like Hip said I can quickly open Evernote and review the same thing I reviewed every week for the last 3 years but keep forgetting.

I've experimented with Notion as Evernote has gotten successively worse and glitchy in the last several years, but making the switch is just too daunting and I don't have the energy.

Sometimes I also write things in a Google Doc with hyperlinks when I'm trying to work through something. By explaining it to myself I can make sure I understand. But in recent years again I just don't have the energy to try to understand etiology so I just look for potential treatments and try them.

 

[heapsreal]

I have seen some good testing from Australian patients. It's not easy anywhere, but I've found taking studies to a doctor can convince him/her to run a test has worked. And, if they won't, I try a different doctor, which I know isn't optimal, but can result in the results I need.

Unfortunately, pharmacology can end up with taking one drug to solve the symptoms produced by another, and then you need another drug to deal with that. This is called polypharmacy. And, worst case it can end up in pancreatitis. I'm not particularly happy about the drugs that I take and wish I didn't have to, but I very carefully research each drug before I agree to take it, and understand the risks, the potential benefits, the mechanism of action, and the ingredients as I'm allergic to some common drug ingredients and do not want carcinogens and other toxins that seem to be ingredients in many drugs.

I see testing people get in other countries that i think would be helpful for my case and they are standard tests. I cant get viral titres test just positive or negative igm or igg. Even contacting our main infectious disease pathology lab i just got a no, only if you have HIV can you get that testing.

The other test, nk function test i got in a cfs study and they continue to do studies testing nk function. It can only be done in a research setting. I even said id pay for it and got a no. Now i cant enroll in their studies as im on antivirals.

The tests that arent mainstream arent covered by our health system so you have to pay upfront and most arent cheap. Ive payed for some testing but its still limited.

But one positive is that one can get a fullblood count with liver and kidney function tests done atleast twice a year to keep general health parameters within range. So that's helped me avoid medication issues, so far🤞

My plan is, when the world opens up, I plan to holiday in Thailand and get some dental work done as well as some blood work. Believe it or not in 2019 it was cheaper for me to holiday in thailand for 16nights in a resort and dental treatment of 6 crowns and a few fillings, flights, spending money for my wife and myself was significantly cheaper than if i had that dental work only back in Australia. So covid as got in the way for me to investigate things further.

 

[pamojja]

Unfortunately, all my early research is saved as 'Favorites' on my IE browser, which will soon be defunct, and I dont know that I'll ever have the energy to sort thru hundreds and hundreds, possibly thousands, of those saved articles, research, etc ...

Could be wrong, but usually there is an import-function of favorites in browsers. To keep it easy for me, I work with a portable version of Firefox, whch runs of a SD-card. So it a computer goes blanck, still have it all with me on a card for the next. Of course Firefox itself could be synchronized online too.

One extremely versatile kind of a swiss-army knife note-taking tool is https://tiddlywiki.com/, which is a single Html file including javascrpt to make it sort of your personal 1-file note collecting software, right in your favorite browser. Only disadvantage is that it takes a littlle of a steep learning curve to use it to its full potential than just taking notes. And with advanced security in different browsers the saving of the html file does need additonal add-ons installed for being able to save made changes again within any browser.

 

[godlovesatrier]

You're right @pamojja there definitely is.

Depending on what version of IE (if you go to you use @YippeeKi YOW !! I'd be happy to PM you a link to the correct guide. You can find the version by clicking settings or the cog and then about internet explorer. Maybe PM me the version if you need help.

 

[Pyrrhus]

I've always used MediaWiki (free/open-source, as created by Wikipedia and used by ME-pedia) to organise my own professional medical notes, references and other resources. You can then link to research and other articles and write comments just for you. The software makes linking and referencing other pages easy and quite sophisticated and it can quickly search your whole second brain when your primary one is on a go-slow.

A hosting service like this usually gives you one-click install for software services like MediaWiki.

If you use MediaWiki software, then definitely use the one-click install option that those hosting companies provide, as @SNT Gatchaman suggests. Trying to install MediaWiki without the one-click option can be a nightmare if you're not a computer programmer.

Here is a list of hosting companies:
https://www.mediawiki.org/wiki/Hosting_services
(Look for "1-click setup" under notes.)

Note that the "Citoid service" that the MediaWiki software uses relies on the Zotero automatic citation software.

 

[Rufous McKinney]

The problem, it turned out, was that it was neither "a small number of patients" who were "baffling cases" nor was it the case that undiagnosed patients represented "unusual medical conditions".

That sentence is almost Very Funny.

 

[Wishful]

Being offgrid, with an inverter only on when I need it, I keep notes on paper. It does get a bit difficult to go far back in my notes. They also get quite smudged and hard to read. They've been quite useful despite that.

 

[Wishful]

Yes, I'd like to know why aesthetics and ornamentation on buildings is harder to find these days.

One possibility is personal pride. With a smaller population and much lower connectivity between people, people and organizations could feel that what they created was important. Today, everyone is too busy looking at the latest building or whatever somewhere in the world, on social media to bother noticing carvings on a local structure. From the creator's perspective, instead of seeing pleasure on the faces of people walking/driving past, there's no feedback. The trivial extra cost is only a factor when there's no value seen from it.

I still remember the lions guarding the Lion's Gate bridge in Vancouver. Do kids these days still notice such things?