Brainstorming ideas and possibilities group.

Would you be interested?

  • Yes

    Votes: 2 100.0%
  • No

    Votes: 0 0.0%

  • Total voters
    2

Folk

Well-Known Member
I've been thinking about creating a group on facebook (or would there be any better plataform?) for brainstorming ways to spread ME/CFS and FMS to get more attention, more money etc.

It won't be a group to just go in and post "I'm having a bad day today!" or to post new studies and findings (unless it has a reason). We have a lot of those already.

The focus is to post ideas for projects, actions and stuff to achieve the objectives listed above or smiliar to it. To see what people can do to offer help (like one knows how to produce and edit videos, other is a hacker (please let there be a hacker...) etc.) and how can we use that for our purpose.

So here I am to ask if you think that's something you would be interested in participating. If you have any ideas you would like to share.
And also, if yes, what's your facebook so I can add you to the group.

Think about it a "Brainfog Storm" could certainly make a mess. :p
 
Last edited:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have a plugin I can use...a jobs and skills plugin from wordpress - just need to configure it..

I don't understand page to a group? I don't know if we can form groups or do you mean something different?
 

Folk

Well-Known Member
I have a plugin I can use...a jobs and skills plugin from wordpress - just need to configure it..

I don't understand page to a group? I don't know if we can form groups or do you mean something different?
I mean, if you create a group on the Facebook you can only add persons, and the adress you gave was to a page.
 

Zapped

Well-Known Member
I've been thinking about creating a group on facebook (or would there be any better plataform?) for brainstorming ways to spread ME/CFS and FMS to get more attention, more money etc...
Think about it a "Brainfog Storm" could certainly make a mess. :p
I personally don't use Facebook much but like your idea. What's wrong with a sub-group right here? After all,
it's a dedicated forum=&

And are you suggesting ideas, questions that might lead to a practical source or mitigation of symptoms? For example,
I posted a question under a separate heading which didn't get responses - possibly because the heading was too
specific and onlookers thought about science rather than daily routines??? Here's an edited version of that post:

I have long been curious about commonly over-prescribed rxs being involved in SEID/ME/CFS, i.e those that directly or peripherally effect the brain and nervous system which in turn effect many of this illness' symptoms.

Has anyone looked into the long term effects of SSRI or SNRI antidepressants (or related classes of dugs, e.g. Z-pills
(Abiem, Klonopin et al), which have become ubiquitous since the 1980's, paralleling
the growth of the now officially recognized CFS era? [I would imagine that a large percentage of PWC's have had some experience with them as there are usually specific questions on them when signing on to more poll-like forums (or studies).]

BTW, as many may recall there were several books on this subject concerning their 'legitimacy' and warning of dangers, leaving us in a quandary, a la 'Prozac Nation,' 'Talking To (Back) To Prozac,' (Peter Breggin, Harvard MD), et al. I imagine
quick reviews are available online, maybe Amazon.
 

Folk

Well-Known Member
I personally don't use Facebook much but like your idea. What's wrong with a sub-group right here? After all,
it's a dedicated forum=&

And are you suggesting ideas, questions that might lead to a practical source or mitigation of symptoms? For example,
I posted a question under a separate heading which didn't get responses - possibly because the heading was too
specific and onlookers thought about science rather than daily routines??? Here's an edited version of that post:

I have long been curious about commonly over-prescribed rxs being involved in SEID/ME/CFS, i.e those that directly or peripherally effect the brain and nervous system which in turn effect many of this illness' symptoms.

Has anyone looked into the long term effects of SSRI or SNRI antidepressants (or related classes of dugs, e.g. Z-pills
(Abiem, Klonopin et al), which have become ubiquitous since the 1980's, paralleling
the growth of the now officially recognized CFS era? [I would imagine that a large percentage of PWC's have had some experience with them as there are usually specific questions on them when signing on to more poll-like forums (or studies).]

BTW, as many may recall there were several books on this subject concerning their 'legitimacy' and warning of dangers, leaving us in a quandary, a la 'Prozac Nation,' 'Talking To (Back) To Prozac,' (Peter Breggin, Harvard MD), et al. I imagine
quick reviews are available online, maybe Amazon.
Actually the goal would be to get more attention. Ice bucket challenge style.

To be noted, to draw money etc.

Got it?
 

Folk

Well-Known Member
I personally don't use Facebook much but like your idea. What's wrong with a sub-group right here? After all,
it's a dedicated forum=&

And are you suggesting ideas, questions that might lead to a practical source or mitigation of symptoms? For example,
I posted a question under a separate heading which didn't get responses - possibly because the heading was too
specific and onlookers thought about science rather than daily routines??? Here's an edited version of that post:

I have long been curious about commonly over-prescribed rxs being involved in SEID/ME/CFS, i.e those that directly or peripherally effect the brain and nervous system which in turn effect many of this illness' symptoms.

Has anyone looked into the long term effects of SSRI or SNRI antidepressants (or related classes of dugs, e.g. Z-pills
(Abiem, Klonopin et al), which have become ubiquitous since the 1980's, paralleling
the growth of the now officially recognized CFS era? [I would imagine that a large percentage of PWC's have had some experience with them as there are usually specific questions on them when signing on to more poll-like forums (or studies).]

BTW, as many may recall there were several books on this subject concerning their 'legitimacy' and warning of dangers, leaving us in a quandary, a la 'Prozac Nation,' 'Talking To (Back) To Prozac,' (Peter Breggin, Harvard MD), et al. I imagine
quick reviews are available online, maybe Amazon.
About it being a segment on the forum instead of Facebook group, for me that would be okay, what do you think @Cort?

I don't whats the best plataform for that kind of stuff.
 

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