Author: KATHY DURKIN
Date: Jun 7, 2010 23:00
I was so tired on Sat., had to go somewhere, that I forgot how to use a mouse to work on the computer. I just sat there staring at it. I've had a computer since 1998!
And again, no matter what I do, only three hours of sleep two nights in a row. Was I ever working on caffeine and adrenaline, the worst.
--- On Mon, 6/7/10, Maija Haavisto WRITEME.COM> wrote:
From: Maija Haavisto WRITEME.COM>
Subject: Re: Brain Fog
Date: Monday, June 7, 2010, 10:09 AM
> In the last 20 years of CFS I haven't found something that really hasreversed this problem. What are these dozens of treatment options(besides "nimodipine," "dexedrine" and "ritalyn" type of drugs)? Ithink my prozac helps me think a bit more clear. It makes me feelbetter, but it's certainly not a "fix-all!"
Besides nimodipine, nootropics or cognition enhancing drugs are the most
important treatment for cognitive problems in CFS/ME. This drug class is
much more popular in Europe and Asia, though even in Europe many doctors
don't know these meds. In the U.S. they're mostly OTC, but elsewhere they
tend to be Rx only. These drugs aren't "uppers"; they work mostly by
increasing acetylcholine levels, improving brain circulation (many different
mechanisms for that) and by some other mechanisms, sometimes partially
unknown, often many mechanisms for the same drug. They tend to be very
well-tolerated and often work synergistically together.
|Show full article (5.96Kb) |
Date: May 13, 2010 23:06
Does the UK's "leading M.E. charity" Action for ME put financial savings on
their publicly ME Observatory before the needs of severely affected ME
All members of Action for ME, AfME may have received their quarterly
InterAction magazine for members in the post from AfME. Included with the
magazine is a poster for an AfME conference to be held on the 25th of
September about AfMEs research Observatory and welfare benefits.
The conference venue is the offices of Allen & Overy a firm of solicitors
and one of AfMEs Trustees works within the building.
This venue has been used for various AfME Observatory meetings over the
course of the last 3 years and AfME have received complaints that this venue
does not provide disability access in relation to entering the building from
the street as well as navigating around the building to various conference
and meeting rooms and toilets.
The reason why AfME have used this venue for Observatory meetings is simply
because they can use their Trustee to book certain meeting rooms within the
building and they obtain the use of those meeting facilities free of charge.
|Show full article (6.42Kb) |
Author: Rita Joy
Date: Jan 29, 2010 12:50
Thanks Bobbie, I can access it from your reply.
QUITE FRANKLY, IF SOMEONE DOES NOT HELP ME, AND SOON, THIS BLOODY ILLNESS
WILL KILL ME. CANT TOLERATE CANCER DRUGS. CANT STOP TAKING THEM. HAD SEVEN
LESIONS AND VASCULAR INVASION, LESIONS THROUGHOUT THE TRUNK, WHICH HAVE NOT
BEEN DIAGNOSED ACCURATELY. THE GLAUCOMA EYEDROPS "XALATAN" latanoprost
CAUSE SEVERE INFLAMMATION OF THE MUSCULATURE AND NERVES, I CANT WALK. THE
PROTON PUMP INHIBITOR SENDS ME TO BED 18 OUT OF 24 HOURS, AND IF I DON'T
TAKE IT, I AM IN SUCH PAIN AND CANT BREATHE, AND CANT EAT, AND THE PAIN
CAUSES DEPRESSION !! ALL IN ALL, I AM A WRECK. I THINK I AM JUST ABOUT AT
THE END OF MY TETHER, AND THE COLD WEATHER DOES NOT HELP. DON'T SUGGEST I
STOP TAKING THE DRUGS. I HAVE NOT YET LIVED !!
JUST DOWN-LOADING MY LOVELY JOKES FROM FRIENDS, AND THEN SEND AN
ADVERTISEMENT TO THE LOCAL PAPER FOR 5 DAYS A WEEK AFTERNOON HELP. BEEN
WAITING NINE DAYS FOR LETTERS THAT THE DOC SAID HE WOULD ORGANISE. YOU BET
YOUR SWEET ASS, I AM FED UP !! THE DOG NEXT DOOR IS CONSTANTLY BARKING AT
EVERY PASSERBY AND THE POSTMAN TO MY HOUSE, AND WAKES ME .!! Yes, I have
|Show full article (2.68Kb) |
Author: Kim Abbey
Date: Jan 28, 2010 22:15
Since I haven't seen any other answers to your question, let me give you my take. Marc has his own view of things, and as you say, it is apparently rooted in some sort of conspiracy theory, with possibly some inaccurate masonic stuff thrown in.
No particular dis-respect intended to Marc, but I find his posts totally incomprehensible and cannot connect them to what we are trying to accomplish. When I first joined here I thought they were a joke. Or paranoid rantings. Frankly, when I read them now, it's for entertainment value. Usually I just ignore them. That's what my delete button is for.
Everyone is entitled to their own opinion, and I certainly have mine. We are all also free to take what is helpful to us, and leave the rest.
This is a good place -- lots of good advice and experience here. It's been very helpful to me. Just being in touch with others who share my difficulties is supportive. So, trust your instincts and do those things that feel right to you. None of us has all the answers, but collectively there is a lot of good stuff here.
Whether you think you can, or think you can't....
You're probably right
--- On Wed, 1/27/10, Joyce S GMAIL.COM> wrote:
From: Joyce S GMAIL.COM>
Subject: Re: [CFS-L] Another Freemason code found in the XMRV-paper
Date: Wednesday, January 27, 2010, 10:46 PM
I am relatively new to this website. I guess I just dont get the point of
what you are saying. Are you suggesting a wide conspiracy of folks trying
to do us in?
|Show full article (4.27Kb) |
Date: Dec 26, 2008 04:33
Hi Rita -
It was a few years ago that I saw Dr. Martin Lerner. He had me take Valtrex.
He prescribed 6 grams per day (weighed almost 200 pounds - UGH!). I took it
for about six months (that is all I could afford) and I DID feel somewhat
better. I knew for sure it was the Valtrex because after I stopped it, I started
feeling bad again a few months later. It would appear that the "bug" or
whatever it is, had an opportunity to multiply again in my system. Dr. Lerner
wanted me to stay on it for at least a year (but, see, it was six months at
first!!!). There was no way I could afford it. GlaxoSmithKline was "donating"
one 500 mg tablet per day, I believe it was. I only had Medicare Plan "D"
insurance and now I have no money!!!
Three days after I stopped taking it, my urine turned dark. I have never had it
checked out, but after reading your message and going to the site, I have
written to GlaxoSmithKline and asked them about it. I should have an answer,
hopefully sometime next week. OR after the first of the year. I also have an
upcoming doctor's appointment and hope that I will remember to ask him to
check it out for me. If I haven't remembered in a few years, I don't know
what makes me think I'll remember this time!!! HOPE SPRINGS ETERNAL!!!
Date: Dec 26, 2008 03:45
I "think" I have figured this message out and that you were the contributor of
> So, please remember that words and feelings reverberate way beyond our
> saying of them. If you feel you have to vent anger, throw ping pong balls or
> marshmallows at the walls...
I want to thank you for this. This is something that I need to remember all
the time. I get tired of apologizing and know that I wouldn't have to if I could
just stop the words in the beginning. And I also sent it to almost my
entire "address book" because the advice is so important.
Date: Sep 20, 2008 17:44
copied from http://medicine.ucalgary.ca/events/cfs_public
Public Lecture on Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
Start: 2008-11-09 13:30
End: 2008-11-09 16:30
Research Update and Clinical tips from the experts
Of interest to patients with CFS/ME and other fatiguing illnesses,
their families and the general public
Sunday, November 9th, 2008
1:30 - 4:30 pm
Libin Lecture Theatre, University of Calgary
Dr. Nancy Klimas, President of the International Association for
Chronic Fatigue Sydrome/ Myalgic Encephalomyelitis (IACFS/ME), co-
author of the Canadian Consensus Guidelines for the Diagnosis and
Treatment of ME/CFS, and faculty at the University of Miami School of
Medicine will present a world wide research update on CFS/ME.
|Show full article (1.64Kb) |
Author: Roger Burns
Date: Sep 18, 2008 21:18
Forwarded from email@example.com:
copied from website meandme.ca
Do you have questions about your M.E./CFS, Fibromyalgia and/or MCS?
Want to learn more about M.E./CFS?
Join us on September 20th when a panel of experts will answer your
The M.E. Association of Ontario's Annual General Meeting
Saturday, September 20th, 2008
in the Auditorium at
Women's College Hospital
76 Grenville St.
Panelists will include:
Dr. Alison Bested
Dr. William H. van Hoogenhuize, Allergist
To submit a question for the panel please email it to: info@MEandme.ca
Admission is FREE
|Show full article (0.66Kb) |
Date: Sep 17, 2008 21:09
I received a message from a former member of our list asking
if I could remove his message from the archives. Has anyone
else received this message? Should I do this, as I am always
afraid to click on any link from someone that I don't know. I
don't know why he couldn't of just emailed Roger and asked
a member of his moderators to do it. So what should I do? I
guess I'm being paranoid, but I wanted to make sure before
I am on digest, so you can email me directly. Thanks Roger,
Bobbie or anyone else that knows.
This is what he wrote to me:
I hope this address is still active and this message gets through to you, and finds you in decent health.
I am a former member of the alt.med.cfs usenet newsgroup and am in the middle of deleting Google Groups search results showing up under my name. They are proving as problem in looking for a new job as employers seem to Google all applicants.
Using Google removal tool I can only personally delete messages which I posted myself.
There is a message posted by you which quotes my message and name in it, and therefore shows up in search results.
|Show full article (1.67Kb) |
Author: Lydia Neilson
Date: Sep 16, 2008 17:32
Please note that, effective immediately, the NEW address of the
National ME/FM Action Network is:
512 - 33 Banner Road
Nepean, ON K2H 8V7
Tel. (613) 829-6667
New Fax No. (613) 829-8518
Please adjust your records accordingly.
Lydia E Neilson M.S.M.
National ME/FM Action Network