Please help evaluate the Chalder Fatigue Scale

[Graham]

You know I won't be able to keep a straight face when I get another 10 entries, thanks to you! But it always sounded better in French.

Boule de cendres

 

[Boule de feu]

Let me know who the lucky winner is...
... And we will have a good laugh with him or her. LOL
Keep up your good work.

 

[Boule de feu]

Boule de cendres ?

Wasn't it boule de suie ?

 

[Graham]

My French is from my days as a schoolboy - and I finished in 1967. Obviously I'm pretty rusty, as I put de instead of des, and I had to look up suie! Perhaps it should have been boule de rouille (thanks Google)

I did go to France a couple of times (as a teacher with a school trip). On one occasion I was map reading for the driver - it was his first time abroad with a coach - and I saw a large sign on the motorway - Bouchon 6 km. I looked all over the map, couldn't find Bouchon. Then the next sign - Bouchon 4 km. Beginning to worry now that I had put the driver on the wrong road and we were on a different part of the map altogether, I hurried to the back of the coach to check with the teacher in charge. Oddly enough, she laughed at me!

(For those as linguistically challenged as me, Bouchon means cork - i.e. a traffic bottleneck ahead. That's one word I haven't forgotten)

 

[Boule de feu]

My French is from my days as a schoolboy - and I finished in 1967. Obviously I'm pretty rusty, as I put de instead of des, and I had to look up suie! Perhaps it should have been boule de rouille (thanks Google)

I did go to France a couple of times (as a teacher with a school trip). On one occasion I was map reading for the driver - it was his first time abroad with a coach - and I saw a large sign on the motorway - Bouchon 6 km. I looked all over the map, couldn't find Bouchon. Then the next sign - Bouchon 4 km. Beginning to worry now that I had put the driver on the wrong road and we were on a different part of the map altogether, I hurried to the back of the coach to check with the teacher in charge. Oddly enough, she laughed at me!

(For those as linguistically challenged as me, Bouchon means cork - i.e. a traffic bottleneck ahead. That's one word I haven't forgotten)

:Sign Good one::Sign Good one::Sign Good one::Sign Good one:
OMG I laughed so hard that I peed in my pants... I'm glad it was only a "bouchon" and not something else like a fallen bridge... It could have been pretty disastrous!
I wrote boule de suie because I thought you meant the French novel we have to read in high school. And since cendres is close to suie, I thought this is what you were referring to. You were right about boule DE cendres. It is an exception and we must not use DES in this case. See, you are still pretty good at it! Good job!

 

[alex3619]

Hi Graham, under the ICC ME criteria I am moderate, but I have always thought I was moderate verging on severe and constantly crossing over that line. I am housebound 99% of the time, but rarely bedbound.

So, the answers.

Now: 2,1,1,2,2,2,2,2,2,2,2

Bad: 3,3,3,3,3,3,3,2,2,2,2

Good: 1,1,1,2,2,2,2,1,1,1,2

The problem with this whole concept is that I don't really identify with fatigued or tired, its something else entirely. Secondly, the last really good day I had was 2001, and most of my answers would have been zero for several hours. I really doubt the usefulness of this scale. For one thing, post exertional/post infection scores are more or less bad days, and good only occurs when I have been pacing well.

The other problem with need rest or being sleepy or drowsy (questions 2 and 3) is that "now" is an hour by hour thing. Several hours ago I was 3,3 not 1,1. Some of this is circadian, some is related to how well I have slept. So I had a nap and dropped from 3,3 to 1,1.

Bye
Alex

 

[Graham]

Thanks Alex - you are number 60 on the list.

Can you shed some light on the zeros for me please? I commented before on Notsonelly scoring a run of zeros, and I fear I may have put my foot in it (which is not unusual for me - with the sensitivity of a hippo). A zero is when that condition is better than when you were last healthy, and I don't understand how anyone can put more than the odd zero under certain circumstances. Part of my analysis assumes that zeros are quite rare (which they have been, apart from Notsonelly and your comment), so am I missing something?

On the French front, at school we learned to read and write in French, but very little conversational stuff. Then in the sixth form all scientists were required to continue with French, so we studied some science history from French textbooks, which means that I can read a moderate amount of French, but am unable to understand spoken French unless it is very slow and clear, and I have very few useful everyday words in my vocabulary.

In my defence, I would like to point out that I am actually bilingual, and that English is my second language. Mostly I talk in Utter Rubbish, at which I am truly fluent, admired by my family and friends. The only problem is that when I come across others speaking Utter Rubbish as well (say, psychologists discussing ME) I don't seem to be able to understand them. Do you think it is a question of local dialects?

 

[Boule de feu]

In my defence, I would like to point out that I am actually bilingual, and that English is my second language. Mostly I talk in Utter Rubbish, at which I am truly fluent, admired by my family and friends. The only problem is that when I come across others speaking Utter Rubbish as well (say, psychologists discussing ME) I don't seem to be able to understand them. Do you think it is a question of local dialects?

They do speak the same dialect. I believe your problem is caused by

A. A brain fog that is too severe to comprehend what is being said

B. A sudden episode of severe boredom - your brain shuts down, therefore you can't understand your own dialect anymore

C. Pure disgusted feeling - you feel sick to your stomach when you see psychologists and your brain withdraws itself from the discussion (to preserve you from the rubbish being said):In bed:

D. An allergic reaction because you have been exposed too much to their rubbish nonsense

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

Right answer: A
Because brain fog is a true symptom of ME

P.S. Can you tell I am bed bound again? So bored... I'm talking rubbish, too! LOL

 

[alex3619]

Thanks Alex - you are number 60 on the list.

Can you shed some light on the zeros for me please? I commented before on Notsonelly scoring a run of zeros, and I fear I may have put my foot in it (which is not unusual for me - with the sensitivity of a hippo). A zero is when that condition is better than when you were last healthy, and I don't understand how anyone can put more than the odd zero under certain circumstances. Part of my analysis assumes that zeros are quite rare (which they have been, apart from Notsonelly and your comment), so am I missing something?

Hi Graham, I have had a small number of remissions of my ME symptoms over the years, the last one I think was in 2001. What happens is all my symptoms go away for four to six hours, and then my brain kicks into gear - my cognitive function goes someplace off the scale, I can read a book in minutes, I can walk/run, whatever, I can do complex math intuitively, reason much more effectively, remember everything I read, etc. I also feel fantastic - not eurphoria probably, but close. I could not do any of this when I was "normal". So its an improvement. Hence the zeros.

There are several possible explanations. This is not a manic episode - I have the capacity but don't have to use it, I am not driven to use the increased capacity - the only reason it was really noticeable was that I was at university and had to study. So two major explanations come to mind. The first is that my "normal" is actually subclinical ME, a mild version, and not normal at all. The second is that my brain has adapted to long term brainfog, and when the fog goes away I experience that incredible oomph. I like the second one for its implications, but the first is more likely.

To me the main implication has always been that something chemical is stuffing me up and causing the symptoms, remove that and recovery is fast.

However we are talking about maybe sixty hours of this out of decades.

Getting that good, then losing it over several hours, is a big downer though. Its my brain slipping away all over again.

Bye
Alex

 

[SickOfSickness]

Moderate most of the time.
I'm not liking this scale, but here goes anyway.
Today moderate 3,3,3,3,3,3,3,3,3,3,2
Bad moderate but lean toward severe 3,3,3,3,3,3,3,3,3,3,3
Good moderate 2,2,2,2,2,2,2,2,2,2,2

 

[SickOfSickness]

I really doubt the usefulness of this scale. For one thing, post exertional/post infection scores are more or less bad days, and good only occurs when I have been pacing well.

The other problem with need rest or being sleepy or drowsy (questions 2 and 3) is that "now" is an hour by hour thing.

About the same here on these 2 points.

 

[Graham]

Yes, I agree. But we have to decide whether to spend our time picking the assessment processes to pieces, or use their own assessments (and ours) to hammer home the truth. I'm working on the latter, even though I am so tempted to do the former. Trust me on this one: using their own data is pretty hard-hitting when you present it correctly, especially when you can put it in the context of what this survey is showing.

I have now got 60 results, and am putting together three different sets of graphics that analyse the variations and difficulties with the scale and try to show them in a punchy manner. I am hoping to have that finished this week, and if I get any more responses, I will add them as time permits. Then we just have one last section to finish before we are ready to do a style check and rewrite, and let you have it all. I'm still hoping for a hundred or so results to give it a real punch, but they can be added as time goes on. Shouldn't be more than a couple of weeks - well it can't be, because my wife is having her knee replaced on October 8th, and it's got to be finished before then! Thanks for all your help to date. I may well make use of you as first evaluators of the project before it gets propery released.

(Lots of physical violence on this posting! Sorry about that, I got locked into boxing terminology!)

 

[Graham]

The frequency of responses is slowing down now, but we have over 100 now, so I have decided to stop at the end of Friday (14th Oct), so that I can start to process and analyse all of the data. If anyone is about to reply, please do so, because the bigger the number, the better.

Thanks to everyone who has taken part - now it's over to me to do justice to your efforts. I hope I can!

 

[Boule de feu]

The frequency of responses is slowing down now, but we have over 100 now, so I have decided to stop at the end of Friday (14th Oct), so that I can start to process and analyse all of the data. If anyone is about to reply, please do so, because the bigger the number, the better.

Thanks to everyone who has taken part - now it's over to me to do justice to your efforts. I hope I can!

Who got #69? LOL
Good luck. I can't wait to read your conclusions.

 

[Graham]

Ah now, I couldn't possibly say, but if you go to the later thread and scroll down to the bottom of the page ...

Who answered the survey of mine
Position of sixty and nine?
I'm told that that place
Puts a smile on the face
Depending on how you're inclined.

 

[sandralee]

Graham and Boule de Feu: You've made my day. I couldn't resist checking out the thread.

Good luck Graham, and thanks to you and the others on the project. You have a big task ahead of you.

Sandralee

 

[Boule de feu]

Graham and Boule de Feu: You've made my day. I couldn't resist checking out the thread.

Good luck Graham, and thanks to you and the others on the project. You have a big task ahead of you.

Sandralee

LOL! I had no clue that Graham was such a poet...

 

[Graham]

Thanks for the kind comments. I used to be a maths teacher - the subject that puts fear and loathing into so many people's minds. So I used to try to soften things. One way was in having a room full of fluffy penguins, and the other was in writing little poems in their books if they had really made an effort regardless of whether it was successful or not. The trouble is that you had to read the rhymes in a northern accent - that way "maths" rhymes with "laughs" - but down here in the south of England the rhyming goes all wrong. It didn't help much with the maths, but at least it made the atmosphere less hostile.

 

[Bob]

LOL! I had no clue that Graham was such a poet...

Graham is a poet,
but we didn't know it!

 

[taniaaust1]

You'll probably find my variations interesting as by what you said.. Im in the severe catagory (do far less then 25% of what I did when I was well) but can actually score very well at times hence most scales can appear rather deceptive in my own case. It all depends on how much Ive done as Im affected post exertionally eg If I havent been doing basically much at all, I dont feel tired at all, I dont "feel" then like Im lacking energy etc etc. My condition very rapidly and severely declines over if I choose to do anything much.

Today is 0, 0, 0, 0, 2, 0, 0, 2, 2, 2, 0 (score of 8) .. with a bad period (or if I do more) I score all 3s throughout.
A good period for me is 0,0,0,0,0,0,0,2,0,0,1 (score of 3) (This is due to my concentration issues are always present and memory issue always present to some degree but in all other areas I can "feel" completely good at times.. it all depends on how much Ive done that day and on the previous days).

Or maybe you'd score me a bit higher as I was confused at something.. eg the "do you need to rest more?" I said no on a good day so scored question zero, basing it on if my body felt like I needed to rest .. thing is I do enforced resting eg practice like agressive bed rest and try to rest before I actually feel I need to do so (so hence avoid symptoms) ... so Im resting yet not feeling like I need to do so .. so I didnt know how to rate that question.
(I couldnt possibly go a day without laying down, I do lay down several periods a day.. but I can feel like well by planning ahead and doing the things I would need to do eg rest, before I need to do them). I feel well and healthy if I dont do things which cause my health to fall eg dont do any normal life activities.

(my average day consists of getting out of bed at lunchtime.. sitting about and cooking 2-3 meals per day (but not always can I do that) but not doing any housework, not dressing, not showering, not doing my hair etc etc.. everything i do or dont do has a goal of trying to conserve my energy to avoid getting any symptoms .. so ratings rating symptoms gives my condition a false sense that Im actually well). I can avoid nearly all symptoms for weeks at times (except the concentration and memory issues) by doing nothing.

* Note.. my condition has been actually fairly stable at the level Im at for past year or two.. but as I said its all based on how much activity I do.

I was looking back at the posts and noticed it appears you never saw mine on the first page (you never commented back to me and and on page two you commented to another that they had to most variation you'd seen so far but the variation I get and had posted about on the previous page is worst so I assume you missed my post).

I did just note that variation is supposed to be over a year (I posted mine before for not over a year but it can be the same for a year too when I fully crash.. Im all 3s and at times of this illness have been at 3s long term when crashed suddenly down to a degree resting long term didnt help on). I spent 9mths fully bedridden at one point needing to be cared for (all 3s).

Anyway.. just wanted to point out my previous post due to just how much variation the ME does seem to have in my own case (and if I didnt listen to my body or was forced to work again eg if they cut my disablity.. Im likely to drop to a point of all 3s again all the time.. i know that as that is what happened in the past when I was forced to stop listening to my body).