ME(cfs ) Impairment Profiles FAQ
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Priscilla Ling
Feb 22, 2012, 3:00:12 AM2/22/12
to mecfs...@googlegroups.com
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.
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
Feb 22, 2012, 9:45:30 PM2/22/12
to Kirsty Best
I'd be happy to find someone who actually cared!
> Date: Wed, 22 Feb 2012 19:00:12 +1100
> From: pris...@mecfshints.com
> To: mecfs...@googlegroups.com
> Subject: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
> From: pris...@mecfshints.com
> To: mecfs...@googlegroups.com
> Subject: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
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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).
bsam
Feb 22, 2012, 11:06:13 PM2/22/12
to mecfs...@googlegroups.com
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
Priscilla Ling
Feb 23, 2012, 12:33:19 AM2/23/12
to mecfs...@googlegroups.com
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
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
Josephine Hewitt
Feb 24, 2012, 6:16:12 AM2/24/12
to Kirsty Best
Thanks, Priscilla, for your response. It was was of those just write it and send it without thinking it through comments. I have done the on-line thing but it doesn't meet the needs. It's to have someone - anyone close close who is loving and supportive or even pop in and make me an "all encompassing" cup of tea. This isn't done because it would mean acknowledging that I need assistance. There is lip service and those lovely chain emails that people let you know how much of a friend you are but rarely lift a finger to help. Too busy. Too busy. Sign of the times, I believe.
Better news, is I have seen a Freo side of town GP/naturopath (recently) who told me that my results showed that I was bedridden (but not when you've got to look after yourself) and that I was very very ill. Thank you doctor for saying it out loud. Not much good sharing this info with anyone. I have, but for what end, I really don't know.
Cheerio, J
Date: Thu, 23 Feb 2012 16:33:19 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: Re: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
Better news, is I have seen a Freo side of town GP/naturopath (recently) who told me that my results showed that I was bedridden (but not when you've got to look after yourself) and that I was very very ill. Thank you doctor for saying it out loud. Not much good sharing this info with anyone. I have, but for what end, I really don't know.
Cheerio, J
Date: Thu, 23 Feb 2012 16:33:19 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: Re: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
Josephine Hewitt
Feb 24, 2012, 6:50:34 AM2/24/12
to Kirsty Best
Silver lining, if I'd didn't have this, I wouldn't have started painting. Josephine/Rozanne 
Date: Thu, 23 Feb 2012 16:33:19 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: Re: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
Date: Thu, 23 Feb 2012 16:33:19 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: Re: [ME/CFS Centre] ME(cfs ) Impairment Profiles FAQ
Karen Lambert
Feb 24, 2012, 8:41:42 PM2/24/12
to mecfs...@googlegroups.com
If you like CFS research, these are two great documentaries.
1) "House of Numbers" - an award-winning documentary about how the HIV/AIDS Story is being rewritten. A 2.5 min movie trailer can be viewed here: http://www.houseofnumbers.com/site/
2) "Beyond Treason" http://www.beyondtreason.com
I borrowed them from my public library. I tell everyone that same thing: your tax money pays for your library, so if they don't have copies in circulation, go to the Reference Desk and request that they order them.
|
Priscilla Ling
Feb 25, 2012, 5:17:41 AM2/25/12
to mecfs...@googlegroups.com
Hi Josephine,
You are another talented artist who is able to express through painting the impact of having ME(cfs ). I was bedbound for over 12 months back in 2002, so am able to identify in the painting of the person lying in bed with outstreched hand reaching for help, and the person sitting on the chair appears uncomfortable with the situation, looks away. All so symbolic. It would be good to hear other people's impressions too.
Are you able to get in some government funded help or any type help on a weekly basis with household chores, which could take the pressure off the daily grind, so to speak. For instance, I get council home care fortnightly which helps a lot. Easing social isolation for the bedridden and homebound is a more difficult problem to overcome, although joining different groups to connect with people is one way, if well enough. There are also home visiting programs you may like to look into depending on where you live.
Do other people suffer from social isolation too?
Priscilla.
You are another talented artist who is able to express through painting the impact of having ME(cfs ). I was bedbound for over 12 months back in 2002, so am able to identify in the painting of the person lying in bed with outstreched hand reaching for help, and the person sitting on the chair appears uncomfortable with the situation, looks away. All so symbolic. It would be good to hear other people's impressions too.
Are you able to get in some government funded help or any type help on a weekly basis with household chores, which could take the pressure off the daily grind, so to speak. For instance, I get council home care fortnightly which helps a lot. Easing social isolation for the bedridden and homebound is a more difficult problem to overcome, although joining different groups to connect with people is one way, if well enough. There are also home visiting programs you may like to look into depending on where you live.
Do other people suffer from social isolation too?
Priscilla.
On 24/02/2012 10:16 PM, Josephine Hewitt wrote:
Thanks, Priscilla, for your response. It was was of those just write it and send it without thinking it through comments. I have done the on-line thing but it doesn't meet the needs. It's to have someone - anyone close close who is loving and supportive or even pop in and make me an "all encompassing" cup of tea. This isn't done because it would mean acknowledging that I need assistance. There is lip service and those lovely chain emails that people let you know how much of a friend you are but rarely lift a finger to help. Too busy. Too busy. Sign of the times, I believe.
Better news, is I have seen a Freo side of town GP/naturopath (recently) who told me that my results showed that I was bedridden (but not when you've got to look after yourself) and that I was very very ill. Thank you doctor for saying it out loud. Not much good sharing this info with anyone. I have, but for what end, I really don't know.
Cheerio, J
>
>
> --
> 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).
--
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).
--
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).
Josephine Hewitt
Feb 28, 2012, 10:42:18 PM2/28/12
to Kirsty Best
Hi Priscilla
The first five or so years of the illness were when I really really needed assistance, but without an advocate, any weak pleas I made fell on deaf ears. Living in a lower socio-economic area the home care assistance is stretched too thin. By the time my sister decided that she would get home help to follow-up, the woman who came out to do some housework made me feel so uncomfortable, mainly because I don't look incapable and as a friend's father so eloquently said the other day, "you look the same. You sit there and crack jokes and smile and you just don't look like you're ill." I'll always crack a joke maybe annoyingly whenever possible! (Old survival mechanism.) But I can now call upon the Home Help service when I need a lift for any hospital appointments, which is a relief as it was like pulling teeth to get anyone to give me a lift. I'm living at about 8% of the function from when I was well, which is the time anyone sees me. (Taking into account I was working full-time, which is way beyond my imagination now.) I have joined the local Art Society and try to be a part of that.
Anyway, that's enough from me.
Thank you for caring.
Kind regards, Josephine
Date: Sat, 25 Feb 2012 21:17:41 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: [ME/CFS Centre] Social Isolation
The first five or so years of the illness were when I really really needed assistance, but without an advocate, any weak pleas I made fell on deaf ears. Living in a lower socio-economic area the home care assistance is stretched too thin. By the time my sister decided that she would get home help to follow-up, the woman who came out to do some housework made me feel so uncomfortable, mainly because I don't look incapable and as a friend's father so eloquently said the other day, "you look the same. You sit there and crack jokes and smile and you just don't look like you're ill." I'll always crack a joke maybe annoyingly whenever possible! (Old survival mechanism.) But I can now call upon the Home Help service when I need a lift for any hospital appointments, which is a relief as it was like pulling teeth to get anyone to give me a lift. I'm living at about 8% of the function from when I was well, which is the time anyone sees me. (Taking into account I was working full-time, which is way beyond my imagination now.) I have joined the local Art Society and try to be a part of that.
Anyway, that's enough from me.
Thank you for caring.
Kind regards, Josephine
Date: Sat, 25 Feb 2012 21:17:41 +1100
From: pris...@mecfshints.com
To: mecfs...@googlegroups.com
Subject: [ME/CFS Centre] Social Isolation
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