Please help with survey in analysis of PACE trial - urgent

[Cfswombat]

i have also already done this on the thread. do i need to do it again?

 

[Graham]

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!

 

[eric_s]

Hi Graham

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.

 

[Yungas]

Moderate.
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

 

[Graham]

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.

 

[anne_likes_red]

Graham - have just emailed you

 

[Graham]

Thanks Anne

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!

 

[eric_s]

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.

 

[November Girl]

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.

 

[November Girl]

I'd appreciate a form to fill out as well - not sure I have my numbers in right order.

 

[November Girl]

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.

 

[Graham]

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.

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!

 

[Graham]

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.

Hi November Girl

Thanks for the suggestion - I have done what you suggested. But an easy way is to send me an email (graham.mcphee@gmail.com) 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?

 

[Deatheye]

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...

 

[valentinelynx]

A group of us from Phoenix have almost finished an analysis of the PACE trial - one that takes a critical eye over what has been claimed, but in a more easy-to-read manner. We want it to create a big impact. It has high-level backing and is almost ready.

We have been using the results from a survey amongst members and friends to highlight the problems in the assessment methods they used, and have now got 62 very useful replies. But the PACE trial had 160 in each of the 4 groups, so we would like to bring our total up to at least 100 to give it more weight.

It would be great if you felt you could take part. The original thread is here, but you don't need to go there. It is much easier than it looks, and don't agonise over your answers - part of the analysis is to do with how difficult it is to answer accurately.

First of all tell me whether your are mild, moderate or severe, where mild is defined as being able to lead a reasonably normal life, moderate is defined as not being able to work, and being able to do less than 50% of what you could do before you became ill. Severe is defined as being able to do less than 25% of what you could do before you became ill, and being dependent on other people for activities such as cooking and shopping.

Then score the answers to 11 questions, 0 which means better than when I was healthy, 1 which means similar to when I was healthy, 2 which means more of a problem than when I was healthy and 3 - much more of a problem.

Chalder Fatigue Scale

Do you have problems with tiredness?
Do you need to rest more?
Do you feel sleepy or drowsy?
Do you lack energy?
Do you have trouble starting things?
Do your muscles have less strength?
Do you feel weak?
Do you have difficulty concentrating
Do you find it more difficult to find the correct word?
Do you make slips of the tongue when speaking?
How is your memory?

Please send me three lots of scores - one for this week, one for a bad patch lasting a week or more over the last year, and one for a good patch.

My Score:
Graham - moderate - today 2,2,2,3,1,1,1,2,2,2,3 bad 3,3,3,3,2,1,1,2,3,2,3 good 2,2,2,3,1,1,1,2,2,2,3 (yes, I'm on a good patch at the moment).

Some people have copied and pasted the questions and put their score beside them - whatever works for you! Make it easy on yourself.

You can post your scores here, send them to me in a private message, or email them to me - graham.mcphee@gmail.com

If you find this confusing, send me an email, and I will send you a form to fill in, which is easier.

Thanks in anticipation.

Graham

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"

TODAY
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

GOOD PATCH
Tiredness: 2, Rest: 3, Sleepy: 1, Energy: 2, Starting: 1, Strength: 1, Weak: 1, Concentration: 2, Word Finding: 2, Tongue Slips: 1, Memory: 2

 

[November Girl]

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]

 

[Graham]

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...

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.

 

[Graham]

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.

 

[svetoslav80]

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...

Oh man ...

 

[Sushizim]

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.