RE: [ME/CFS Centre] Digest for mecfscentre@googlegroups.com - 4 Messages in 1 Topic

[Linda J. MacDonald]

Priscilla

 

 

THANK YOU FOR THE USEFUL DOCUMENTS. I will try them out at my next specialist appointment and share them with others w. ME.

 

I am a little unclear whether one is supposed to check off several of the categories in the activities form, or whether those are meant to be a scale. I guess one can decide for oneself, but I would not mind a description of that if you have one.

All the best,

Linda

 

---

From: mecfs...@googlegroups.com [mailto:mecfs...@googlegroups.com]
Sent: Thursday, February 23, 2012 3:08 AM
To: Digest Recipients
Subject: [ME/CFS Centre] Digest for mecfs...@googlegroups.com - 4 Messages in 1 Topic

 

  Today's Topic Summary

Group: http://groups.google.com/group/mecfscentre/topics

§                           ME(cfs ) Impairment Profiles FAQ [4 Updates]

 ME(cfs ) Impairment Profiles FAQ

Priscilla Ling <pris...@mecfshints.com> Feb 22 07:00PM +1100  

The symptoms and impairments in ME(cfs ) are hard to explain to give a
full picture of how one is, especially in the limited time frame usually
available. They often need to be repeated, and as a consequence, lead to
frustration and exhaustion, especially when unwell.
 
These Impairment Profile-General and Impairment Profile-Activity forms
have been designed as additional tools to use when talking to families,
friends, practitioners, service providers and members of the public.
 
Please disseminate this information widely for others to also benefit
from their use.
 
The link to ME(cfs ) Impairment Profile FAQ is at:
 
http://mecfshints.com/impairment-profiles-faq/
 
Priscilla

 

Josephine Hewitt <ban...@hotmail.com> Feb 23 10:45AM +0800  

I'd be happy to find someone who actually cared!
 

 

 

"bsam" <bsam...@bigpond.net.au> Feb 23 03:06PM +1100  

Hi Josephine,
 
Those of us who suffer with ME/CFS do care, that's for sure.
 
I'm sorry that you don't have caring people around you- that makes it very
hard for you.
 
Regards, Elene
 

 
_____
 
From: mecfs...@googlegroups.com [mailto:mecfs...@googlegroups.com] On
Behalf Of Josephine Hewitt
Sent: Thursday, 23 February 2012 1:46 PM
To: Kirsty Best
Subject: RE: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
 

 
I'd be happy to find someone who actually cared!
 

 
 
> Priscilla
 
> --
> You have received this message because you are subscribed to the "ME/CFS
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Messages will be archived and made publicly available.
> - To unsubscribe from this list, send an email to
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> == The ME/CFS Centre is located in Second Life
(http://tinyurl.com/mecfscentre). Our website is located at
www.mecfscentre.org The calendar of events can be found at
www.mecfscentre.org/calendar-of-events ==
 
> Time zones for events are listed as Pacific time (San Francisco, USA)
since this is the time in Second Life. To convert to your own time zone, use
this calculator: http://www.timeanddate.com/worldclock/converter.html
(choose USA-California-San Francisco). Or use this calculator:
http://www.worldtimeserver.com/convert_time_in_US-CA.aspx (set the event
time in the first window, then press submit).
 
--
You have received this message because you are subscribed to the "ME/CFS
Centre" mailing list.
- To post a message, send an email to mecfs...@googlegroups.com .
Messages will be archived and made publicly available.
- To unsubscribe from this list, send an email to
mecfscentre...@googlegroups.com

== The ME/CFS Centre is located in Second Life
(http://tinyurl.com/mecfscentre). Our website is located at
www.mecfscentre.org The calendar of events can be found at
www.mecfscentre.org/calendar-of-events ==

Time zones for events are listed as Pacific time (San Francisco, USA) since
this is the time in Second Life. To convert to your own time zone, use this
calculator: http://www.timeanddate.com/worldclock/converter.html (choose
USA-California-San Francisco). Or use this calculator:
http://www.worldtimeserver.com/convert_time_in_US-CA.aspx (set the event
time in the first window, then press submit).

 

Priscilla Ling <pris...@mecfshints.com> Feb 23 04:33PM +1100  

Hi Josephine,
 
Most of us would probably agree with your sentiments, especially when we
can't get appropriate treatment from the medical profession, and have
access to support services in the community.
 
However, there is much understanding and support between ME(cfs)
sufferers if well enough, but there are also some who may be bedbound
and homebound who are too ill to post to provide support at all.
 
The ME/CFS Centre is a good place to start if you would like to
communicate via email with others for social support. Also there are
lots of groups you can join if interested.
 
If you have any concerns you'd like to raise please feel free to do so,
as there are over 60 members on this group who may just be able to have
input.
 
Priscilla
 
 
 
 
 
On 23/02/2012 1:45 PM, Josephine Hewitt wrote:

 

You received this message because you are subscribed to the Google Group mecfscentre.
You can post via email.
To unsubscribe from this group, send an empty message.
For more options, visit this group.

--
You have received this message because you are subscribed to the "ME/CFS Centre" mailing list.
- To post a message, send an email to mecfs...@googlegroups.com . Messages will be archived and made publicly available.
- To unsubscribe from this list, send an email to mecfscentre...@googlegroups.com
 
== The ME/CFS Centre is located in Second Life (http://tinyurl.com/mecfscentre). Our website is located at www.mecfscentre.org The calendar of events can be found at www.mecfscentre.org/calendar-of-events ==
 
Time zones for events are listed as Pacific time (San Francisco, USA) since this is the time in Second Life. To convert to your own time zone, use this calculator: http://www.timeanddate.com/worldclock/converter.html (choose USA-California-San Francisco). Or use this calculator: http://www.worldtimeserver.com/convert_time_in_US-CA.aspx (set the event time in the first window, then press submit).

[Priscilla Ling]

Hi Linda,

Yes, you're right, the form is not meant as a rating scale, as it is a set of impairments ( please add your own ) experienced by those with ME(cfs ) which impact and limit on their ability to carry out daily activities. Just check mark as many impairments across the top of the page against each daily activity, as appropriate to your situation.

I would be interested to have some feedback on what you think of the form after your next specialist appointment and from others.

Must sign off to rest and get cool as the temperature is climbing steadily.

Priscilla

[Linda J. MacDonald]

HI again ME centre group,

 

In addition to these impairment profiles some patients might find it useful to use those provided at this Lyme Disease site. They are attached.

 

Please sign the petition below. Getting the IDSA to change its diagnostic and tx criteria for Lyme could help with diagnosis of Lyme, ME, and related illnesses.

 

http://www.lymedisease.org/petitionscript/index.php

 

Linda

 

---

From: mecfs...@googlegroups.com [mailto:mecfs...@googlegroups.com]
Sent: Thursday, February 23, 2012 3:08 AM
To: Digest Recipients
Subject: [ME/CFS Centre] Digest for mecfs...@googlegroups.com - 4 Messages in 1 Topic

 

  Today's Topic Summary

Group: http://groups.google.com/group/mecfscentre/topics

§                           ME(cfs ) Impairment Profiles FAQ [4 Updates]

 ME(cfs ) Impairment Profiles FAQ

Priscilla Ling <pris...@mecfshints.com> Feb 22 07:00PM +1100  

The symptoms and impairments in ME(cfs ) are hard to explain to give a
full picture of how one is, especially in the limited time frame usually
available. They often need to be repeated, and as a consequence, lead to
frustration and exhaustion, especially when unwell.
 
These Impairment Profile-General and Impairment Profile-Activity forms
have been designed as additional tools to use when talking to families,
friends, practitioners, service providers and members of the public.
 
Please disseminate this information widely for others to also benefit
from their use.
 
The link to ME(cfs ) Impairment Profile FAQ is at:
 
http://mecfshints.com/impairment-profiles-faq/
 
Priscilla

 

Josephine Hewitt <ban...@hotmail.com> Feb 23 10:45AM +0800  

[Linda J. MacDonald]

Here is that document I meant to attach (not very good cognitively tonight).

[Karen Lambert]

"Lab 257", written by Michael C. Carroll, has appeared at a time when hundreds of thousands of people are searching for answers about Lyme disease, (which may soon become one of the largest epidemics of all recorded time.)  The book reads better than your favorite spy thriller, but finishes like a horror novel instead of a documentary.    http://www.lymediseaseresource.com/Lab_257.html   http://www.michaelchristophercarroll.com/work1.htm --- On Fri, 2/24/12, Linda J. MacDonald <ljm...@telusplanet.net> wrote:

Time zones for events are listed as Pacific time ( San Francisco , USA ) since

Time zones for events are listed as Pacific time ( San Francisco , USA ) since this is the time in Second Life. To convert to your own time zone, use this calculator: http://www.timeanddate.com/worldclock/converter.html (choose USA-California-San Francisco). Or use this calculator: http://www.worldtimeserver.com/convert_time_in_US-CA.aspx (set the event time in the first window, then press submit).