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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's usually a good idea to explain a few details about the study you are posting, and say why you are posting it.
I have ME/CFS from environmental exposure, namely moldy homes, all my research is centered around that, this pertains to the airways and mast cells, sorry, to much going on at the moment , I'm slow and everything takes a lot of effort and shareing my research beyond here gets taxing at times. I'll try to do better in the future
People have the agency and free will to share links however they like.
Perhaps rather than critiquing their style, @Hip, you could add a quick summary yourself if you felt so moved, thereby helping OP and all
They have, but it's good etiquette and good practice I think to guide your reader at least a little bit to the point you want to make. Most of us have brain fog here, and limited ability to read text and plough through papers, so given this audience, it would be a good idea just to provide at least some summary or explanation of the paper.
A lot of her threads only contain a URL, like these: 1 2 3 4 5 6 7 8
If I am researching a subject, I will spend several days or weeks looking at the topic, and then it will take me around a day to write up a post for a new thread on PR.
In the last month or so, @osisposis has posted over thirty new threads, with little in them apart from a single link to a study, but little or no comments, which seems a spammy to me.
I guess maybe @osisposis is too time limited or brain fogged, and is hoping that others will read the papers for her, and then provide a summary or viewpoint. But think @osisposis will get a better response from members if some initial context is given. Most readers want to know: does this study indicate a possible new treatments; or does the study throw new light on the nature of ME/CFS.
Also, since many of the studies posted are on the same topic, it may be a better idea to post these in a single thread on that topic, and develop the discussion on that thread.
Just my suggestions for creating better threads.
They have, but it's good etiquette and good practice I think to guide your reader at least a little bit to the point you want to make. Most of us have brain fog here, and limited ability to read text and plough through papers, so given this audience, it would be a good idea just to provide at least some summary or explanation of the paper.
in an ideal world yes, but just as many here dont have the energy to go and read everyones links, many here dont have the energy either to go and write summaries of explainations of why they are putting a link up.
If a very sick ME person has a link they think we may be interested in looking at, I'd rather see them post it then feel they cant post it as they dont have the health to explain it all themselves.
I suffered pretty bad brain injury, so don't judge my writeing because my research is good.
infection can set in this route sinus>brain/olfactory,frontal lobes,dura matter(myelin sleath,, pretty sure infection here and you will have re-accureing hot/sore spots on your scalp and no doubt suffered meningitis on top of everything else
and you may or may not of realized that that dripping or running watery stuff coming from your nose and maybe even ears was CSF but if you had it had it comeing out your ears when you would go outside and they would unswell shut and it ran you might put your hand up there and let it run onto your hand and see the white streaks of infection in it.
I appreciate that if someone's cognitive issues are significant, writing a long account of a study may be difficult.
But if you have read a paper and understood it — and I think @osisposis understands science well, so her views and comments would be valuable — it shouldn't be that difficult to provide a one sentence summary about why a paper is interesting.
ME/CFS patients are usually interested in possible new drugs or treatments, or new understandings of the biology of the disease. So for example you could summarize a paper in one sentence by writing: "in this paper, they are talking about using a new drug called X to treat MCAS."
But if @osisposis really does find it too difficult at the moment to write a descriptive sentence or two, then I do understand. I have myself had major cognitive difficulties in the past, so I appreciate how these cognitive issues can severely limit you.
What type of brain injury did you have, @osisposis? Was it meningitis?
I had what appeared to be an episode of viral meningitis 10 years ago (I think it was from the same Coxsackie B virus that triggered my ME/CFS). The meningitis caused some permanent brain damage and loss of mental faculties.
I developed severe ADHD after my meningitis, and as a result on many days, I was unable to read even a simple 3 sentence email. I had no problems intellectually understanding things, but the ADHD did not allow me to "input" written text into my brain. I still have trouble reading and inputing info from text sources, though I have improved quite a bit over 10 years.
Do you have any anxiety symptoms as a result of your brain injury? I developed severe generalized anxiety disorder after my meningitis. Anxiety = mental tension and/or excessive worry. In my case, the anxiety was constant severe mental tension.
My theory is that anxiety is often generated by chronic brain inflammation; in my case, long term brain inflammation resulting from my meningitis.
I finally found some relief from the anxiety via certain supplements such as N-acetyl-glucosamine which I think work by reducing brain inflammation. My anti-anxiety, anti-brain inflammation supplements are detailed here:
Completely eliminated my severe anxiety symptoms with three supplements!
Non-Standard Anti-Anxiety Treatment
Inflammation generally occurs in brain injury, so supplements that reduce brain inflammation may help you.
2001 when this happened to me there was no help , it took me 5 -6 years just to get to the point that I could get online and I joined the sbs group and no one had answers
I spent years rereading stuff trying to get it soaked into my brain, I had notes everywhere and still do, I have a hudge problem organizing but I have determination and I've also had to basicly learn ways to help myself
for some reason here when I try to post stuff if I don't post it one line at a time and try to post as I have it it gets all mexed up and in the order, why is it doing that?
I have anaphylaxis to mold extracts if that gives you a idea about my life and trying to avoid my triggers witch is pretty much impossible but you have to do the best you can.
I'm not going to opologize for how I write or spell or anything else, give me a break people,
I know that feeling, @osisposis: the first year after my meningitis was very hard, trying to get a damaged brain to work again.
Sorry I was demanding about your posts. I do now appreciate the difficulties you are facing, and if there is anything I can do to help, let me know.
Can you explain a bit more what you mean about getting mixed up when you post? Perhaps I can help explain how to use the the features of the post box and text editor of this site.
Did you have mold allergy before you were hit with meningitis, or did the mold allergy only appear afterwards?
You don't have to worry about spelling. After I was hit with meningitis, my ability to spell words greatly deteriorated. I found it much harder to type words after meningitis as well: I often type the letters of a word in the wrong order, because my brain seems to find it hard to send the signals to my fingers in the correct order.
Nowadays, I have to rely on the spellchecker to correct things. Every sentence I type has at least 5 or 6 typos or spelling mistakes. Thank goodness for spelling autocorrection.