Discussion in 'Action Alerts and Advocacy' started by Graham, Oct 1, 2011.
i have also already done this on the thread. do i need to do it again?
Thanks Eucalypta - you are number 82 on the list - we are getting there!
I noticed that on a bad patch your scores on two items are less. The same thing happens to a friend of mine. If you are up to making a comment about how this happens, I might be able to use it as a quote in the report. The quote will be anonymous of course - only I know the names. If you want to send it to me by personal message or email, that would be fine. And if you are not up to it - do not fret - there is no way in the world that I want to add to people's feeling of pressure.
cfswombat - thanks for checking, but there is no need to fill it in again. I haven't got an entry under cfswombat, so I'm guessing you gave me a name!
Here are my values. If you need my full name i could pm that to you.
I'm moderate, without a car and internet access i would probably have to say severe though.
This week: 1, 3, 1, 2, 1, 3, 3, 2, 1, 2, 2
Bad: 1, 3, 1, 2, 2, 3, 3, 3, 2, 2, 2
Good: 1, 3, 1, 2, 1, 3, 3, 2, 1, 1, 2
If you need any additional information, let me know. I don't feel tired in the sense of "sleepy". I had that many years ago, but it has gone away again. My condition is quite stable, i only have bad patches if i am more active phyisically or if i don't sleep enough because i'm sleeping in a noisy place, for example, or have to get up early. My main problem is not being able to sit or stand for a long time and not tolerating exercise. Before getting ME/CFS i had none of these problems and exercised a lot.
This week 2,3,2,3,3,3,3,2,2,2,2
Bad patch 3,3,3,3,3,3,3,3,2,2,3
Good patch 2,2,2,2,2,2,2,2,1,1,1
Thanks Eric and Yungas - numbers 84 and 85 - going great guns now!
I don't need your full name, Eric, thanks, just enough to know who to let know when the results are through. Your results form an interesting pattern! You and I seem to have moved to similar positions.
Yungas, hope you hit a good patch soon.
Graham - have just emailed you
It's picking up momentum now. I have sent you the form, and if you answer quickly, you will be 90. I bet that's a treat you have been looking forward to!
Graham, would you like me to look elsewhere for more participants? Or do you think 100 will be fine? Feel free to pm me, if you would like to talk about details (diagnosis of the participants, etc.). I'm already busy enough, but if you do this i would be happy if we can make it as good as possible.
I've written down my answers, then realized that the only reason I have some 1's and 2's is because I limit my mental and physical activities. If I tried to work an 8 hour day, even without ADA or commute, they would be way off the scale.
Even with my limited schedule, accurate responses would include "extremely difficult, and takes everything I have and leaves nothing for any other physical or mental activity - except laying flat in bed, too tired to even sleep" as well as "absolutely impossible"
And I have no clue what they mean by "do you have trouble starting things" I have no trouble if I have the energy to do them!! I'm really not sure how to answer that one.
And these days I only wish I felt sleepy or drowsy, I'm not getting near enough sleep, even though on a sleep med.
I'd appreciate a form to fill out as well - not sure I have my numbers in right order.
i see that some of the posters on the first thread simply pasted in the questions, and added their numbers to them. That I can concentrate well enough to do! Perhaps you could change your initial post to that method. I was trying to write the numbers separately, as shown in your post, and couldn't keep them straight.
Thanks for the offer. Personally I would love it for the numbers to be well over a hundred, and several of my friends have posted elsewhere for their friends to participate - in fact, at the moment, members from Phoenix Rising represent about half of the replies I have had so far. But almost all of the responses I have had are from people who, even if they don't know me, do have a direct link to me, through PR, Bob's chatsite, or the many ME support groups in the South-East that I advertise through my website.
This is never going to be recognised as a proper scientific study, as I have not attempted to check that the respondents match any criteria for ME, but I do look for consistency in the overall pattern of answers. But there is enough in the pattern and spread of the results that enables us to ask more penetrating questions about the validity of the interpretations of the PACE scores, so big numbers make it harder to ignore.
Anyone outside Phoenix though would have to email me directly so that I have a contact address to notify them when the report is ready, and they may be a bit wary as they do not know me at all.
So, if you have the energy, yes please, but in reality, I am not sure that you will get that many responses. Thanks!
Hi November Girl
Thanks for the suggestion - I have done what you suggested. But an easy way is to send me an email (firstname.lastname@example.org) and I will send you an Excel style questionnaire.
By the way, are you the same November lass that was in Bob's ME chat group?
What dies "Slip of tongue" mean? English is Not my Main Language
Also i'm generelle Not so surre what numbers to put there. I get Times where i have a really hard Time to remember my name, Cant lift a glass to Drink Causen of muscle weakness, Even colaps and can't Move any muscles, Eyes Not reacting to Light anymore... Cramps and muscle twitches and now seizures and an not normal unknown EEG paterns. Sleeping sometimes around 16hr a day without waiking up. Normaly is around 12 hrs.
Kinds Feeling like worst case everything would Be more then a 3...
Hmm. Well, first of all, whether I am "mild" "moderate" or "severe" itself varies from time to time!
I work sporadically and need a lot of recovery time if I work for a few days in a row. I guess I'd say I'm "MODERATE"
Tiredness: 3, Rest: 3, Sleepy: 2, Energy: 3, Starting: 2, Strength: 2, Weak: 2, Concentration: 2, Word Finding: 2, Tongue Slips: 1, Memory: 2
BAD PATCH = SEVERE
Tiredness: 3, Rest: 3, Sleepy: 2, Energy: 3, Starting: 3, Strength: 3, Weak: 3, Concentration: 3, Word Finding: 3, Tongue Slips: 2, Memory: 3
Tiredness: 2, Rest: 3, Sleepy: 1, Energy: 2, Starting: 1, Strength: 1, Weak: 1, Concentration: 2, Word Finding: 2, Tongue Slips: 1, Memory: 2
This is the first (and only) place I've used this screen name - decided I wanted something that wasn't as easily identifiable as my usual.
By the way, are you the same November lass that was in Bob's ME chat group?[/QUOTE]
A slip of the tongue is when, in your head, you are about to say something, but the wrong words come out. It happens to me a lot, or sometimes I just cannot remember a simple word.
Sorry to hear that you are so unwell. Lots of people like you have filled in the form with all 3s, and said that they needed 4s and 5s.
Thanks Valentinelynx, you are 91 on the list. I'm going to have a lot of work to do this weekend updating all the graphs and animations with all this new data. Not that I am complaining at all - it builds up a solid pattern of evidence.
Oh man ...
Very cool project. I emailed my numbers. I'm not sure if I remember 'healthy'. I have started to cringe when people ask me if I'm tired because if I say yes, the response is usually 'Ya, me too'. I recently interrupted a friend to say 'wait a minute... We are not on the same scale. So the questions make me nervous. Anyway, good job.
You can also try a Google Site Search
Separate names with a comma.