27 Apr 2018
Author
Lala
Title

New Members

Body

I scanned new members also and I find they often ask through their personal statement in their account, e.g. Carrie Simpson: "I am so new at this I dont even know what all the acronims stand for. What is CAPS? I am getting ready to start Flagyli and am scared out of my MIND...after reading some of the posts here, i know there is a high chance that it will get worse before it gets better and how can I handle it getting worse?" But nobody answers I think.

Comments

Lala- I think we need a "welcoming committee" who scans through new members and sends them a greeting of suggestions about where to start, especially if they are informing us by their profile and not a regular posting. Any volunteers?

I will enable the "new members" sidebar box so we can all find them more easily. 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

I don't mind doing that.  I look everyday in any case ...  Maybe we could come up with a list of things to point out whatever the question might be.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS

Sussex, UK

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Jim, I don't know about needing a welcoming committee, particularly as the site grows exponentially. There's a point at which this becomes unwieldy, unless a form letter of sorts is drafted and automatically sent to anyone who signs up on the site.    I think maybe a way to facilitate new members' needs is to change the sign-up page and make it clear the spot for the 'little blurb about themselves' is only that and to direct them to ask their questions via the forums. 

As for Carrie, I replied to her via private message a couple of weeks ago and have yet to hear anything back from her.  Woody also posted the request for a doctor on a forum and got some answers.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Good grief! Image removed.  Mac is perfectly right here.  I have been a member since the start but I have never looked at the member's lists so I'm hardly likely to start now........Sarah

 

Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Oh. sorry Mac, I did not notice this post and I incorrectly supposed nobody noticed Carrie..probably you are right. But I think list of new users, which Jim made is useful thing.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

Lala, I think the list of new members is a very useful thing, but I also think a hint on the joining page to post questions either as a forum topic or a blog would be a better idea.  There might be so many new members in a short while that not even you and Michele could keep up with them.......Sarah

 

Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I'll add the comment to the sign-up page and try to direct people to make other posts to get attended to. Any volunteers can try the welcoming committee idea until it gets unwieldy. 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA