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

[junkcrap50]

I'm curious how other people keep track of their research and readings. I think this topic may also help others too who are new to ME/CFS, those who are beginning to research their illness, those who have gathered some research, or those who want to organize what they have more neatly. Good notes also end up being helpful when revisiting an old topic or reviewing for new treatment ideas.

I'm frequently impressed with some posts that are filled with tons of information that summarize particular topics and research. They are really helpful for the community and are often filled with lots of references and hyperlinks. Other times, a user is just very smart and knowledgeable and drops a lot of good information. Often these posts are done by a few super users like @Hip, @mitoMAN, @Pyrrhus, @nerd, @necessary8, @Martin aka paused||M.E., @frozenborderline (or Walker's other username?) @Learner1, @pattismith, @Sushi, @Gingergrrl , @jenbrea, @Jeff, etc. Any others I'm missing? (I'm sorry to tag you.)

Even if you're not a super poster, the brain fog and memory issues have to be problem for many. So what approaches and tricks do others have found helpful to keep track of everything?

Hows:

• How do you do your readings?
• How do you do your research?
• How do you keep track of what you read and want to save?
• How do you keep track of what you want to know?

Do yous:

• Do you take notes? If so how?
• Do you print out papers and articles?
• Do you take handwritten notes? Or do you type your notes?
• What computer software do you use for note taking?

Others:

• Other strategies on where or how you look stuff up?
• What do you do when you do not know what to research specifically, but are looking broadly at what would fit certain symptoms?
• What other communities besides PhoenixRising do you follow and participate in?
• How do you keep up-to-date with all your other communities/support groups?
• Do you abuse "Ctrl+F" as much as me to skim papers?
• Do you start searching on the Phoenix Rising Forums first?
• How do you access full research papers? (Now that Sci-Hub is gone).
• How do you research drugs and their potential use?
• Do or have you ever emailed researchers or doctors asking question about, respectively, their papers or treatments?

Specifics:
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.

Convincing Your Doctors:

• How do you convince your doctors of disease possibilities, tests to do, treatments to try, etc.?
• Do you just print out several papers that are relevant?
• Do you highlight the papers for your doctor?
• Do you write mini "research papers" with references summarizing the relevant literature (that's a lot of work!) or bullet point summaries of the papers?​

Anything else?:

• Is there anything else or other tips you use?

 

[junkcrap50]

In my case, I wish I began a more structured process for taking notes from the beginning. I'm now thinking I should probably improve on how I do things. What I do now is basically as follows: read a lot, only try to remember stuff that applies to me and my situation, bookmark stuff poorly and unorganized in my browser, print and highlight only VIP stuff & good review summaries, and email relevant quotes with links from papers on a particular topic to self/caretaker(s)/doctor(s) when necessary. I've just been relying on memory and having once been smart at one point. I forget some specific details and lose info over time that may end up helping me later, which is especially true if a topic doesn't really apply to me.

I usually first do a google search & read "health articles" for quick overview summaries. Then usually search the topic in Phoenix Rising. Usually, others have posted about the topic on here, and this way sort of filters it specific for ME/CFS. Then I go to pubmed & read papers. Depending on the topic, I also search longecity, all of reddit, certain reddit's subreddits (cfs, nootropics, peptides), and the few discord groups I'm apart of (me/cfs & peptides). I don't do facebook but I probably should try it. I’d be open to learning of which facebook groups to join that provide good content & info.

 

[wabi-sabi]

I tend to check social media for new research papers. I'm always happy to see when people post research papers here, since that's often how I find them. I try to follow as many of the ME/CFS researchers and docs that I can. For example David Tuller just retweeted an article posted by Dr. Leonard at DePaul University. It's a really good one about stigmatization of ME/CFS.

Link here: https://journals.sagepub.com/doi/10.1177/13591053211027631

Once I've found a good paper I save it in a citation software called Zotero. It's free to download. It lets me save all the papers I want to with just a click. Them I can go back and read them whenever I feel able. I don't take notes since it's just too hard.

If I want to look for papers on my own I go to PubMed or every one in a while JSTOR for more humanities based articles. Conferences are also a good place to find info, like the Stanford conference or the NIH conference. I watch these when they've been posted to youtube. It's often easier for me to listen to a presentation by an expert than try to read the paper.

 

[Hip]

Do you take notes? If so how?

I mainly keep notes on the various topics connected to ME/CFS by creating a folder on my computer for each subject. So I have folders for numerous topics, to give some random examples:

• Folders on relevant medical areas like: the vagus nerve, autoimmunity, mitochondria, basal ganglia, bacterial toxins, cytokines, inflammation, anti-inflammatories, neuroprotection, ion channels, HPA axis, ME/CFS statistics, lab tests, etc.
• Folders on ME/CFS symptoms like: PEM, brain fog, sleep issues, gut issues, etc
• Folders on ME/CFS drugs and treatments like: interferon, tenofovir, Valcyte, IVIG, oxymatrine, B12, methylation protocol, LDN, etc.
• Folders for each of the pathogens linked to ME/CFS like: EBV or coxsackievirus B.
• Folders on comorbid diseases like: POTS, allergies, MCAS, SIBO, IBS, depression, anxiety, etc

When I read studies or medical articles, if there is something I think is important or useful, I will place a weblink to that study in the appropriate folder (or download the whole study as a pdf), usually creating a snappy cause-and-effect title for the saved study document, like "Vinpocetine ⬇ voltage-dependent Na ion channels".

I use the arrow symbols ⬆ and ⬇ in study file names as a shorthand to mean "increases" or "decreases".

I may also copy bits of useful text from Phoenix Rising and place that in a folder, or place a link to a relevant PR thread in the folder.

I usually place closely associated documents together in little groups in each folder. So when you open up a folder in a new window, different areas of that window will contain sub-topics and groups of files relating to that sub-topic.


In each folder, I will often place aliases (shortcuts) to other relevant folders, so that you create up a web of interconnected info on your computer.

My folders get built-up over many years. When I read interesting new info about a subject, I will add that to an existing folder. This is quick and easy to do, as when you are reading a study, you just save a link to it in the relevant folder, an create a snappy title.


Sometimes I will write notes in a text document, and place that in the relevant folder.

 

[wabi-sabi]

https://pubmed.ncbi.nlm.nih.gov/

https://www.jstor.org/

Web of Science or CINAHL are also good databases, but you may need to go into them through your local library website rather than just online yourself.

 

[Learner1]

So what approaches and tricks do others have found helpful to keep track of everything?

Good questions all, and I think this is an important point if one wants to get better. Sitting and waiting for one's doctor to come up.eiyh all the answers is a surefire recipe for failure, I have to say. (Having just spent a good chunk of my day at one of the top medical institutions in the world to get less than adequate help...)

I've copied your questions here and tried to answer:


Hows:

• How do you do your readings?

I have some stuff coming to me that I signed up for, which has provided really great papers over time, like academia.edu, MedPage Today, Peter Attia The Drive, etc.

Then there are very meaty topics that I keep coming back to and finding new papers or chapters of textbooks to read.

This is on top of my studying for a couple of nutrition coaching certification programs and an immunology class for doctors which have both given me a good foundation of knowledge. And going to conferences, where I could learn from experts, ask questions of researchers and/or clinicians and make connections that I can ask questions of later.

• How do you do your research?

Most of the time it's prompted either by investigating my own health issues or another patient approaching me with questions. Either I remember something I read and go back to it, I search on health websites I trust, do Google searching on the topic from some different angles, or ask my connections to help me by explaining something or pointing me toward good info or someone else.

I also look on my favorite websites, one specific to particular topics, or general ones that have a lot of good information collected and summarized (Science Direct, SelfHacked, GreenMedInfo, Linus Pauling institute, U Maryland, U Maryland, Sloan Kettering, any ME/CFS researcher.

I'll look at labs and/or genetic or other testing to see if anything I'm reading matches, to try to piece together the puzzle so I can see and analyze it.

• How do you keep track of what you read and want to save?

Having seen things disappear from the internet, I make a PDF of everything I want to keep, name it with keywords, dates, author, or other identifiers, do that I can use Google Drive Search to find it again later.

For good webpages, I may make a document on a topic and put all the good links I can find in it, then store that on my Google drive

• How do you keep track of what you want to know?

On my Google Drive. I also find key diagrams that clarify things for me, name them and save those, too.


Do yous:

• Do you take notes? If so how?

Not really, unless I'm analyzing sonething

• Do you print out papers and articles?

Yes, I read them best that way. I'm.loudy at filing and indexing them and find it best to read it 2-3x to understand it

• Do you take handwritten notes? Or do you type your notes?

Nope. Too much work.

• What computer software do you use for note taking?

N/A


Others:

• Other strategies on where or how you look stuff up?

Covered above.

• What do you do when you do not know what to research specifically, but are looking broadly at what would fit certain symptoms?

I don't find looking at symptoms

• What other communities besides PhoenixRising do you follow and participate in?

FB groups on oxalates, 3 different genetic mutations

• How do you keep up-to-date with all your other communities/support groups?

It's not easy. Ideally, they poke me to read, otherwise,I rotate between them.

• Do you abuse "Ctrl+F" as much as me to skim papers?

Probably not. I do it on my Android phone or iPad, mainly, and use the Find in Page or Search function.

I typically read the abstract and conclusion, look at the diagrams, glance through the experiment, then read the discussion, noting any insights or flaws.

• Do you start searching on the Phoenix Rising Forums first?

Not usually. I like to go my own digging, then see what others have said

• How do you access full research papers? (Now that Sci-Hub is gone).

Yes, as much as I can

• How do you research drugs and their potential use?

Google them. Look for drug interactions, which CYP

• Do or have you ever emailed researchers or doctors asking question about, respectively, their papers or treatments?

Specifics:
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.

Android phone, PDF viewer and Google Drive.

Convincing Your Doctors:

• How do you convince your doctors of disease possibilities, tests to do, treatments to try, etc.?

Take them papers, summarize for them as I hand them over

• Do you just print out several papers that are relevant

Yes

• Do you highlight the papers for your doctor?

Sometimes

• Do you write mini "research papers" with references summarizing the relevant literature (that's a lot of work!) or bullet point summaries of the papers?

Nope I think it's better to just read and save diagrams and papers.

Anything else?:

• Is there anything else or other tips you use?

Keeping my labs handy on my Google drive is helpful to, so I can look things up as unread them.

Keeping it simple and loose let's me quickly save and find info, letting Google do the work

In my case, I wish I began a more structured process for taking notes from the beginning. I'm now thinking I should probably improve on how I do things. What I do now is basically as follows: read a lot, only try to remember stuff that applies to me and my situation, bookmark stuff poorly and unorganized in my browser, print and highlight only VIP stuff & good review summaries, and email relevant quotes with links from papers on a particular topic to self/caretaker(s)/doctor(s) when necessary. I've just been relying on memory and having once been smart at one point. I forget some specific details and lose info over time that may end up helping me later, which is especially true if a topic doesn't really apply to me.

I usually first do a google search & read "health articles" for quick overview summaries. Then usually search the topic in Phoenix Rising. Usually, others have posted about the topic on here, and this way sort of filters it specific for ME/CFS. Then I go to pubmed & read papers. Depending on the topic, I also search longecity, all of reddit, certain reddit's subreddits (cfs, nootropics, peptides), and the few discord groups I'm apart of (me/cfs & peptides). I don't do facebook but I probably should try it. I’d be open to learning of which faceboo

Don't beat yourself up! There's a lot to learn and now, and even our doctors don't know everything. I think being organized in the way that works for you best is what you should do.

I have found certain Facebook groups helpful. Most, however, tend to have a lower level of discussion then I find I can have here. A lot of very uneducated people, so there's a lot to weed through to find the few nuggets that are there.

 

[Martin aka paused||M.E.]

I think here is a misunderstanding … I don’t even come close to users like hip or learner1 when it comes to knowledge about ME and medicine in general. But ok:

I only read what applies to me. That means I have a certain problem like now Coxsackie B4 then I crawl the web for every study I can find. Then I sort them by relevance (not interested in abstract theories, less in in vitro studies, a bit more in mice models when the EC50 is given, interested in human studies/clinical trials). I also inhale specialists experienced (like now Dr. Chias) and in terms of research I almost only use PR to check if this fits the users experiences.

I’m not interested in studies that might be an interesting read but don’t offer you any treatment possibilities. Then I just skim them or don’t read them at all. I don’t want to spam my brain with all those million theories about the etiology of ME. That's what I learned in law school... Bc German law is a ridiculous amount of information you have to read and remember you have to choose wisely what is relevant and could serve you. The rest is spam. And I don’t have enough energy for spam (very severe).

If I think a paper is or might be important I give it a simple name and save it in my cloud. I have multiple folders. I’m never taking notes. My brain works quite well.

I would probably be more encouraged in organising my stuff, taking notes and learning stuff on a academical level if I were better. But I have to limit my time reading as I’m very severe. Otherwise I’ll crash and that’s the worst treatment ever.

 

[heapsreal]

One problem i find is even if i come across an interesting study, its almost impossible to get the appropriate testing to see if its related me.
Maybe why ive looked more at pharmacology etc to see how a drug might work and its side effects and safety profile and then trial a drug or supp. Its upside down world when its easier to get many different meds but get testing is 100 times harder.

Try the red jelly bean today. Next day, that didnt work, leys try the green jelly bean. Then theres combos of jelly beans. Before you know if a cupboard full of mostly useless things

 

[Learner1]

One problem i find is even if i come across an interesting study, its almost impossible to get the appropriate testing to see if its related me.
Maybe why ive looked more at pharmacology etc to see how a drug might work and its side effects and safety profile and then trial a drug or supp. Its upside down world when its easier to get many different meds but get testing is 100 times harder.

Try the red jelly bean today. Next day, that didnt work, leys try the green jelly bean. Then theres combos of jelly beans. Before you know if a cupboard full of mostly useless things

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.

 

[Learner1]

think here is a misunderstanding … I don’t even come close to users like hip or learner1 when it comes to knowledge about ME and medicine in general. But ok:

I only read what applies to me. That means I have a certain problem like now Coxsackie B4 then I crawl the web for every study I can find. Then I sort them by relevance (not interested in abstract theories, less in in vitro studies, a bit more in mice models when the EC50 is given, interested in human studies/clinical trials). I also inhale specialists experienced (like now Dr. Chias) and in terms of research I almost only use PR to check if this fits the users experiences.

You are too kind
I'm very impressed with how much you know, considering you're having to read a lot of very technical information in a second language.

I think you make a good point, that one doesn't have to be a scientist to do one's own research on one's own problems. It is extremely useful to read all one can, even difficult information, try to understand things. At least, it might prompt questions to ask one's doctor, which might lead to the doctor having some insight and running some tests or trying some treatment that could be helpful. Or, it might leave one to seek out one of the authors of an article to ask a question or even for care, if an author is a clinician.

I’m not interested in studies that might be an interesting read but don’t offer you any treatment possibilities. Then I just skim them or don’t read them at all. I don’t want to spam my brain with all those million theories about the etiology of ME. That's what I learned in law school...

As I've read more and more science, I found how interconnected it all is. And, with ME/ CFS being a multi-organ system disease with multiple etiologies, and multiple metabolomic abnormalities, It is useful to delve into many medical topics, learning about them individually, and then as one learns more, to understand how they fit together and interact with each other.

The way conventional medicine works is they have divided the responsibilities of doctors into different organ systems, so you have the eye doctor, the kidney doctor, the infectious disease doctor, the neurologist, and they pick off various pieces of you to treat. This is not so helpful and a complex disease like this. As patients, we need to challenge this paradigm, and bring up things that fit within their organ system as well as another one and ask them how it's interconnected, pushing them to look at us as an integrated system of systems, and not just our kidney or our eyeball... This leads to better answers to help us, although it is an uphill battle given the current paradigm.

 

[YippeeKi YOW !!]

The way conventional medicine works is they have divided the responsibilities of doctors into different organ systems, so you have the eye doctor, the kidney doctor, the infectious disease doctor, the neurologist, and they pick off various pieces of you to treat. This is not so helpful and a complex disease like this.

STELLAR !!!

I've had that same thought for quite a while now.

Imagine if you had to take your car to one mechanic for an oil change, another for your windshield wipers, yet a third guy for a tune-up, a different one for your clutch (I've always had sporty manual shifts, hate large cars and automatics), someone else for your car's electric harness, another guy for flushing your transmission ..... and then when your engine blew you realized that you'd gone to the wrong mechanics and none of them knew squat about engine warning signs and malfunctions.

This is the situation we find ourselves in, apparently even with Drs who 'specialize' in ME/CFS because generally they're all working on their own pet theories, and may not be looking at, or even willing to consider, other possibilities in their determination to prove that they're right ....

Will have to come back to answera few of the questions tht @junkcrap50 asked, and I really ppreciate everyone's answers here.

The short version (and this may be the only one I can manage right now) is that:

• I only research issues that have personal relevance to my ME and particular symptoms, tho sometimes I'll research an issue someone else has raised that may not apply to me directly, because I find it interesting, and might be able to help. This only happens on my 'good' days.
• I generally start the same way @junkcrap50 does: with general articles in publications like ScienceDirect and Live Science et al, and other light-weight sources, expand that to more specific sources, usually NIH or PubMed, sometimes an India-based research source (can't remember the name and it's stored on my other browser which I can't open simultaneously with Chrome without crashing my system) and an interesting Taiwanese research source ...
• I use the references on any research paper I've read for further, deeper or more specific info ...
• When I find something I want to be able to refer back to or find again, I enter the title and the link on a Word doc, along with any brief notes on it that will refresh my memory when I'm searching for it ...
• I use specific file name headings so that all info on a specific topic is saved in Word together, like: Health - Immune system .... or Health - Ivermectin Trials, etc .... or Health - HBOT studies. This way, I just go to 'Health', and the topics are alphabetized for me, so relatively fast to find the specific word doc that will have all the research links on that subject .... not quite as easy to find the specific link that I need that's saved in that doc ...
• 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 ...
• I sometimes do follow-up searches Longecity, and sometimes initiate deeper searches in HealthRising or Sci4ME, because I find real gems of info and research papers and articles there ... and of course, anything I find there goes into a carefully named Word doc ...

If I can think of anything else, I'll be back.

 

[Hip]

The way conventional medicine works is they have divided the responsibilities of doctors into different organ systems, so you have the eye doctor, the kidney doctor, the infectious disease doctor, the neurologist, and they pick off various pieces of you to treat. This is not so helpful and a complex disease like this. As patients, we need to challenge this paradigm

Unfortunately the only way you are going get a medical professional to become an expert in all areas of the body is by genetic engineering of a breed of super human beings!

We would need to genetically engineer super-humans who can store 1000 times more medical information in their brains, and learn this information at a 1000 times faster rate. Then they could become experts at neurology, immunology, cardiology, etc, etc.

Of course, an appointment with one of these super-human doctors might be challenging, as they might also speak 1000 times faster!


In the 17th century, it was still just about possible for one person to know everything there was to know. But knowledge has exploded in a way that now makes it impossible for one person to learn anything but the tiniest insignificant fraction of the total knowledge of humanity.

Thus is it impossible to avoid specialization of knowledge, given the limits of the human brain.

Pharmaceutical companies and medical research institutions are well aware of this problem, and it has been noted that now, most new drug discoveries are occurring not within the boundaries of a given discipline (because single disciplines have been well-explored and most of the low-hanging pharmaceutical fruit within them harvested), but rather new drug discoveries are now often occurring at the boundaries between two different intersecting disciplines.

So for the purposes of advancing medical science, it is important to place experts from different intersecting medical disciplines into close contact.

Some pharmaceutical companies are doing this just by arranging the seating plan in their offices and laboratories. If you can sit experts from different intersecting disciplines next to each other, then just by normal office chat you get a cross-fertilization of ideas.

Ideally, for certain diseases, you would want this interdisciplinary approach in clinical medical treatment, when you visit the doctor. However, I think only a billionaire could afford to a whole team of such experts attend to their case.

 

[Martin aka paused||M.E.]

Unfortunately the only way you are going get a medical professional to become an expert in all areas of the body is by genetic engineering of a breed of super human beings!

We would need to genetically engineer super-humans who can store 1000 times more medical information in their brains, and learn this information at a 1000 times faster rate. Then they could become experts at neurology, immunology, cardiology, etc, etc.

Of course, an appointment with one of these super-human doctors might be challenging, as they might also speak 1000 times faster!


In the 17th century, it was still just about possible for one person to know everything there was to know. But knowledge has exploded in a way that now makes it impossible for one person to learn anything but the tiniest insignificant fraction of the total knowledge of humanity.

Thus is it impossible to avoid specialization of knowledge, given the limits of the human brain.

Pharmaceutical companies and medical research institutions are well aware of this problem, and it has been noted that now, most new drug discoveries are occurring not within the boundaries of a given discipline (because single disciplines have been well-explored and most of the low-hanging pharmaceutical fruit within them harvested), but rather new drug discoveries are now often occurring at the boundaries between two different intersecting disciplines.

So for the purposes of advancing medical science, it is important to place experts from different intersecting medical disciplines into close contact.

Some pharmaceutical companies are doing this just by arranging the seating plan in their offices and laboratories. If you can sit experts from different intersecting disciplines next to each other, then just by normal office chat you get a cross-fertilization of ideas.

Ideally you would want this in clinical medical treatment, when you visit the doctor. However, I think only a billionaire could afford to a whole team of such experts.

In Germany their is a famous special clinic with those interdisciplinary experts. It’s covered by insurance

 

[Hip]

In Germany their is a famous special clinic with those interdisciplinary experts. It’s covered by insurance

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.

 

[Martin aka paused||M.E.]

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.

Yep. It’s very hard to get into this clinic and they have a waiting list …

 

[godlovesatrier]

I use one note at work. For ME I've got google drive but I don't take research notes really, just treatment and potential root causes down as notes.

If you can't get OneNote, you could try evernote: https://evernote.com/ it has it's drawbacks sadly, I discussed this at length with someone awhile ago. OneNote sort of came out on top. To b e honest text files backed up (Hip's approach) is still a very good approach. I do like the extra things OneNote gives me though for colour coding and adding images and stuff like that. But even OneNote has a few little quirky design features that are irritating.

To be honest I usually can't remember where the note is I need, but one note's search is excellent, or just keep them all in text files and folders on your computer and you can then search that way too for what you want.

But personally I find it even harder to remember things unless I am repetitively doing the same thing all the time it doesn't really tend to go in. For example I read copious books on IP law for the entertainment industry when I was producing feature films back in 2008, while I've got a lot of that stuff photocopied, I couldn't remember it all now. It definitely got a lot harder with the ME, but my ability to recollect has never been too hot in general.

On a side note to the above replies, I think division is what really keeps us apart from doing the best and most that we can as a human species. Either the arrogance of one person or a group of people to believe they don't need other people, or the fact that people don't like other people but would never say it out loud and therefore that also increases the division. I think as a species we will probably rely heavily on computers, for our own basic failing, which is to unite together as one species across all creeds and colours and unite together against ALL the things that threaten to destroy us. I can't see the pace of technology and change in the direction of an over reliance on those things really changing much.

 

[Hip]

But personally I find it even harder to remember things unless I am repetitively doing the same thing all the time it doesn't really tend to go in.

My increasingly failing memory is another reason why I have to make notes. I could not function at all without noting things.

Almost every post I make on PR I first have to refer to the notes on my computer to remind me of the basics. So my computer has become a sort of artificial memory, or a prosthetic brain!

A terrible memory does make reading into ME/CFS research a lot more difficult, and a more lengthy process, since everything important has to be noted, because when I come back to the same subject in a weeks's time, I will have forgotten 90% of it. But by having notes, you can spur your memory and remind yourself of the basics.

 

[godlovesatrier]

Yep back before I had ME I used to use loci palaces to remember workshops or speeches, I found loci palaces fantastic for that purpose.

When it comes to notes I think visual depiction was probably the best. But for complex systems not unlike the ones mentioned in ME I get a tad lost, when it gets into metabolites and what not. It's the same level of complexity in many IT systems, I find them incredibly hard to visualise usually.

At any rate my memory is very bad, I often sit at my desk trying to remember what it used to be like before ME, I often can't really remember. I'm dyslexic anyway so short term memory has always been a massive problem for me. And the brain is not exactly naturally self organised in dyslexia either. That is we are not the most organised of people. There's no doubt the fatigue of ME on body and brain 100% make this much much worse. I struggle with it on a daily basis anyway at work, no doubt about that. Healthy people have no idea how good they've got it to be honest.

 

[Hip]

I used to use loci palaces to remember workshops or speeches

That's a fascinating technique, though unfortunately never worked for me, as I don't have a visual brain: I cannot willfully make visual images in my mind (except of course during dreaming). Apparently the inability to create visual images in the mind is common in scientists.

It was Francis Galton who first investigated this, asking his friends whether they could conjure up an image in their mind, and finding his scientific friends generally could not, but his non-scientific friends could.

 

[Rufous McKinney]

But I have to limit my time reading as I’m very severe. Otherwise I’ll crash and that’s the worst treatment ever.

Its really hard when you can crash from simple cognitive exertions....whats described here by others is really wonderful, but I can't imagine having the cognitive ability to- do most of what is described.

I am In an intense PEM right now from one hour of dealing with banking passcodes. What is it about thinking intensely in a certain way, can make somebody this sick? It just shocks me, still, when this happens.