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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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where to start......?

Messages
9
Hi,

Ive been trawling the internet for years and cant understand why I didn't find this site earlier.

I thought I knew stuff until I saw the forum - extensive is the only word for it.

so extensive I'm not sure where to start.

can anyone point me in the direction of the best posts to start with regarding treatment.
also is there a glossary of all the acronyms


A bit of background, I believe ive had ME/CFS for about 10 years, i have taken various supplements, cant find a GP that can help me or diagnose me but have done a lot of research on the internet but find it difficult to know what to believe or how to proceed
 

alkt

Senior Member
Messages
339
Location
uk
a difficult question because as you said the site is quite large .you could start with the road map for m.e thread .there is a link to it under some of the signatures of members. i would try in the community lounge segment first. best wishes.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Welcome, @dazzammm — I was in exactly the same boat not so long ago. I 'found' PR at the start of this year after being ill for about 13 years. I couldn't believe I hadn't noticed it before. I think I might have read some of the articles but somehow never noticed the forum. Put it down to brain fog.

It takes a while to get a feel for the place. The Roadmap mentioned above is good. Otherwise just make use of the site search to look for answers to questions about symptoms / doctors / medicines / therapies that are familiar to you. You'll soon find yourself hopping from one thread to another. Before you know it you'll have 50 threads bookmarked and be thoroughly confused. But stick with it. Things start to crystallise after a while. Good luck.
 

Effi

Senior Member
Messages
1,496
Location
Europe
@dazzammm welcome!

a list of acronyms here: http://forums.phoenixrising.me/index.php?threads/acronyms.11510/ (maybe a bit dated though?)
you could start with the road map for m.e thread .there is a link to it under some of the signatures of members.
The roadmap is in member Hip's signature. Link here: https://sites.google.com/site/cfstestingandtreatmentroadmap/

There's so much info it's hard to know where to start, but I'd take it one symptom at a time and slowly work your way through it all. :) Good luck!