Hi All,
Ty to
@Ember for posting.
Since this introduction was meant to be rigorous I'd thought give it a bit of explanation: I think one of the issues that bedevils our disease, and attempts to advocate for it, is that there is so much misinformation; especially, but certainly not limited to, sites like the Mayo Clinic, Medscape, CDC (which are broadly viewed, by the public, media and most likely new patients, as trustworthy).
Just to share a bit of my own story ( I assume it will ring familiar for many ) when I got sick I had to rummage through a ton of websites looking to answer the to question: “What am I sick with?” ...and once diagnosed with ME by a specialist...still it turned out many support sites had unreliable information, or even misinformation.
At that time, even things viewed as very reliable ( such as co-cure ) were not necessarily helpful since they only policed tone. And, more importantly, the posts were things of interest to specific persons, or organizations–rather than “newbie help.”
I remember even support and advocacy organizations often had conflicting information about the disease, how to diagnose it, what the prognosis was, treatments…Sources like immunesupport (prohealth), aboutmecfs (phoenixrising), the ME Association, MERGE (ME Research UK), CFIDS Assoc. Of America (Solve ME/CFS Initiative), RESCIND, MESA ...and many others often offered flatly contradicting views.
For myself, making sense of all this was a
major task. One had to sort opinions... from facts... from personal experience which was generalized. If we could spare new and future patients that with a referenced introduction I thought it would be a worthy endeavor.
This introduction was written by myself and Maryann Spurgin. I tried very hard to make it:
- Concise.
- Facts rather than Opinions.
- Referenced.
- Thorough.
Also, there is an opinions section where both facts we couldn’t fit into the narrative and opinions ( in my view: opinions which have strong reasons for accepting them ) are presented but labelled as such.
Hope people, especially new patients ( for whom the history can be overwhelming ), find this useful!
thanks,
-jd
While it probably can't be changed in the short-term it would be nice to get feedback (both kinds) so I'm tagging some people who I remember are on this forum:
@alex3619 @Janet Dafoe (Rose49) @Liz Willow @JayS
Lastly, I hope this introduction ( or a slightly modified form ) could be useful to new doctors and researchers too...