Please help with survey in analysis of PACE trial - urgent

[Cindi]

severe

this week 3 3 1 3 2 2 2 2 2 2 2
bad 3 3 2 3 3 3 3 3 3 3 2
good 2 2 1 3 1 2 2 1 1 1 2

 

[allyann]

Moderate, borderline severe

This week 3313333333
Bad patch 3323233333
Good patch 22121222122

 

[Graham]

Thanks Susie (94), cindi (97) and allyann (98). Nearly at a hundred now - the numbers I mean, not my mental age. I've been feeling mentally over a hundred for a long time now.

I will let you all know as soon as the results and the report are ready.

I noticed, Allyann, that you score for today on starting things was "much worse", but only "worse" on a bad patch. Did you mean that? Odd things do happen on these scores, but I always check up so that if anyone challenges it, I have an answer. Feel free to send me a private message or an email if you would rather not answer that on this thread. (I have collected a few odd scores, and so far all of them have been justified - ME is so weird!)

 

[Deatheye]

now 2,2,2,3,2,2,2,2,2,2,2 bad 3,3,3,3,3,3,3,3,3,3,3,3 good 2,2,2,3,2,2,2,2,2,2,2

Did any one of you ever think about that such questions can cause problems in different ways?
First of all the last few months I noticed that what I personally call tieredness is a collection of sympthoms which not seem to define normal tieredness. For about 2 weeks I got imflammation reducing medicine. At that point I noticed a total different form of beeing tiered which was a convenient urge to go to sleep. Normaly tieredness for me means muscle weakness, lot of different worser getting pains, loss of cognitiv abilities, concentration problems... But cause I had this form of "tierdness" I wasn't aware anymore that this is not normal... I notice this with more and more stuff I so got used to that my definition of normal or lot of words changed of the years / decades. Till that point I totally forgot the about the existence of the normal tieredness but then I remembered as a child long ago I once new that form.

I also got used to have uncontrollable stool loss together with diarhea and gut cramps. A doctor once asked me why I never mentioned that. I just wasn't aware that that's not normal to have together with the other sympthoms cause I allready had it as a child.

Basically a lot of words for me changed there meaning beeing fine is by far not the same beeing fine from 20 years ago.

And doctor telling you that you just are too susceptible and should get yourself together also doesn't really help to notice such stuff...

I always wonder when I read something about a study if they ever check for stuff like that... I doubt it.

For the points I set: basically wih a biger score range you could put everything a number higher. I just thought it doesnt make sense to have 3 everywhere. There woudnt be much difference anymore between good and bad. I kinda tried to fit it in to the 3 point systems.

 

[svetoslav80]

For the points I set: basically wih a biger score range you could put everything a number higher. I just thought it doesnt make sense to have 3 everywhere. There woudnt be much difference anymore between good and bad. I kinda tried to fit it in to the 3 point systems.

Right. For severe cases even "good" days are "much more of a problem" on most questions, so how do they make distinction between good and bad days. Btw you didn't mention what your case is - mild, moderate or severe.

 

[Deatheye]

Right. For severe cases even "good" days are "much more of a problem" on most questions, so how do they make distinction between good and bad days. Btw you didn't mention what your case is - mild, moderate or severe.

Well how is mild moderate or severe defined? I assumed I need to get this from a doctor which I didn't till now.

 

[svetoslav80]

Well how is mild moderate or severe defined? I assumed I need to get this from a doctor which I didn't till now.

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.

------------------------------------

 

[Deatheye]

bhaa quote doesnt work. Thanks now that I see it again I allready read that.. lol forgott about it...
By that definition I'm in between moderate and severe. I'm missing the dependant on other peoples help. Basically caus I just dont eat and drink for days (noticed that not drinking anything for more then 2 days is a bad idea btw. but my brain did shut down so bad I didn't even notice it till after 2.5 days), not buying anything for weeks not doying basic stuff like taking a shower for weeks if it get's to bad... Or maybe that would qualify as severe? I'm technically dependent just not taking it?

Yeah I know I'm hairsplitting, but questionaires drive me crazy...perfectionism really likes to push me hard with those ^^'

 

[allyann]

Hi Graham, this weeks turning into bad patch, probably the worse I can remember, plus being pregnant doesn't help been feeling better lately so have overdone it.

 

[Graham]

Thanks for your scores Deatheye. You are number 101 on the list! Any more scores now are a real bonus.

I know what you mean about the questionnaire: the only consolation I can offer is that at least you don't have to work with it!

I also know what you mean about having symptoms that you don't bother mentioning to the doctor because you live with them for so long, you take them for granted. It's so confusing with ME.

Allyann, congratulations! My little baby is 30 now, but it's still magic!

 

[Enid]

Hoooray 101 so far - very glad to hear for you Graham.

 

[anniekim]

Have messaged you with my scores. THanks for doing this.

 

[Graham]

Thanks anniekim - number 102!

No need for thanks! I'm a stubborn old man, and can't bear to see the PACE trial get away with it. If this report can add to the avalanche of criticism and make an effect, I'll be so happy!

 

[TrishWillow]

PACE Trial Survey

I would like to participate in this survey. Thank you.

 

[Graham]

Thanks Trish: if you send me an email to graham.mcphee@gmail.com, I will send you a questionnaire. Or if you prefer, at the start of this thread there are the full questions and information on how to answer them.

 

[iwantsimple]

Hi. I'm new here, but I want to help!

My name is Michelle.

I am MODERATE.
Today: 3,3,3,3,2,2,2,2,2,2,2
Bad: 3,3,3,3,3,3,3,3,3,3,3
Good: 2,2,2,2,1,2,2,1,2,1,2


Hope it helps!

 

[Graham]

Thanks Michelle: you are number 108. I'm very honoured that your first post (of many to come) was to take part in the survey.

Because it cannot be a proper scientific type of study - I can't exactly come around and check that you all fit the official criteria for ME - having a large number of consistent results gives it credibility. In fact we are not very far out from matching the scores of the PACE patients at the start of the trial, so our results should have influence, and you have just added to that!

 

[Mary Poppins]

Graham, do you still need people for this? I'm happy to help.

 

[Graham]

Yes please Mary, the more the merrier. If you send me an email - graham.mcphee@gmail.com - I can send you a questionnaire, which is probably the easiest way.

 

[Mary Poppins]

all righty, I'll do that, Graham.