@all, incl. @ModSupport…
Always new threads are good, reacting is good, often meandering around on topics time and time again is good, continuing narratives like my blog/diary/journal are - hopefully - good (for me it’s replacing my pain diary and summarizes my sleep & gut diaries) and I’ve started systematic overviews like on cryotherapy, but I’m missing
some reference- and resource easy lists (symptoms alphabetical, treatments alphabetical, treatments in groups) or
more complex like a small encyclopedia (symptoms with their treatments as keywords, treatments with their symptoms, &/or possible adverse effects as keywords, with links to more in depth overviews and threads).
What are your suggestions/ideas on this? What would you wish for? Would that be OK/right here?
I’m not sure if the technical side/purpose of a forum is the right place for this - a wiki would praps be more suitable. But if any forum, then this one, because of Discourse Hub allowing editing for a long time after. And I’d prefer to stay at home here with things like that…
Edit: Silly me, it’d probably be easiest just to continue the Symptoms-List thread with these kind of lists… O.o - any other suggestions tho?
There are lots of ways to go about this, and we don’t have any Standard Operating Procedures that we use for that (or much else, for that matter). We depend on members and moderators to decide what works for them and their community. So in the case of a reference system, whatever works for you works for us, as long as it conforms to norms, logic and law.
That said, we do have a bottom line: Ben’s Friends’ approach is that we “deal” exclusively in conventional evidence-based medicine. We are also happy to have members share complementary therapies, that is to say, ones that aren’t validated in conventional medical terms, but nevertheless which people find make them feel better. These, we keep in their own silo, “Complementary Therapies”, always with the prominent caveat that members should inform their doctors of everything that they do/take in this regard. Easy enough.
So how would you like to organize this? I’m tagging @Davey02766, and @Annette78, who are your Moderators. You also have at your disposal Modsupport (Sharon and Merl) as well as Admins TJ and Seenie (who also do ModSupport).
Would you like a section for reference work? Can do. Do you want to create a wiki-like document? Can do that too (something like that might be done most effectively on a document that is shared by author(s) and then open to read-only by anyone with the link.)
It’s up to you, the mods and your fellow members. Let us know how we can help.
I’d need to hyperlink the items of a A. symptom-list to a B. trigger-list and a C. treatment-list, systematical one each, then D. an alphabetical register as pointer. (Pinpointing & alleviating triggers is a form of preventative treatment.) Each item wd link to a description with explanation plus personal experiences, containing hyper-links.
I’d need to be able to ‘hide details’ like in normal posts.
Pointers wd of course always be careful, balanced, neutral, with disclaimers, medical and otherwise, plus a balance of ‘cd. be fms’, ‘cd. be x’, ‘cd be sth. else’, ‘check with your doc’ as regards symptoms, similar for triggers/treatments.
Evidence-based? - for fibro?!
Healthline has labelled the article Plant Paradox Diet with "“Evidence based”: What Is the Plant Paradox Diet, and Does It Work?. What the label here means is not that the treatment is evidence based, but that it is considered from a neutral, critical and not missionary point of view. That’s agreed…
***Trying to get a feeling for sub-sections, categories etc...***
(Not sure if these are helpful) https://youtu.be/NnXh9dnzYgE?t=974 As one type of category starting point I’ll perhaps develop Rachel Lynch’s categories of ?treatments/triggers/symptoms (in A. she mixes symptoms and body parts, in B she mixes treatments with triggers and in C she takes emotional to also mean psychological and cognitive):
A. “Mechanical” - “physio”
B. “Biochemical” - diet, toxins, pills: meds/herbs/supps
C. “Emotional” - self-care, CBT, letting go, sleep hygiene.
Something general above a section about triggers → Pinpointing (= cognitive/mind, sort of C) ← → Diary-types (which wd also be part of a general section about symptoms as well as treatments)
a. Hypotheses about how fibromyalgia generally comes about is one thing (CSS (central sensitization/sensitivity syndrome), AI (autoimmune), ATP/mitochondria, SFN = small fibre neuropathy, cytokines (cf. FM/a test), neuroinflammation),
b. long term ‘causes’ like (psy. trauma, stress (biochemical:) toxins and ? genes (or is that not biological/biochemical but socio-psychological?) another, and
c. direct short-term day to day triggers.
Not sure if a is “pathogenesis”, or just b?
Seems as if these 3 types of causes cd all just belong in the “(Cause?/)Trigger”-section.
Jay, I’m going to draw TJ into this coversation, he’s our boss of all things technical and medical around here.
He will no doubt have some things to say about “evidence-based-ness” and how best to organized your resources. TJ has a lot of things on his plate right now, though, so he may not respond immediately. I’ll offer apologies, in advance, on his behalf.
Really nice to hear from you again. Is Cologne resplendent with spring flowers these days?