PACE Trial and PACE Trial Protocol

[Sean]

Vent away!

 

[aimossy]

Thanks!!!!! I appreciated it loads!
I keep wondering if there is any decent research done with regards to cognitive testing.neuro psych type stuff with regards to function. I know for sure I would completely bomb in anything to do with behavioural working memory/sequencing.and a few other types of assessment. I wonder if anyone has come across any yet in their searches.
I also I wonder how we would go on these types of tests before exercise and after.

 

[Graham]

There's something called the "two back test" that is "fun". I tried it recently and was a real wreck, but I'm sure I would have been alright before. There's not much research on it for people with ME though as far as I know. It would particularly interesting if we had time machines and could do a before and after comparison.

 

[Graham]

Actually, thinking about it, I can do a before and after comparison. I've taught maths for 40 years, and it has always been my "thing". Before ME, I would read a long A-level question, take it all in, form a strategy (which sometimes meant answering subquestions in a different order), then answer it, checking back on the question for details. Now I have to read a question several times to make sure that I haven't misread it, and work through it step by step, answering one part at a time and checking back regularly to keep that part in my mind. It hasn't damaged my ability to solve the problems, but it has damaged my working memory.

It has also damaged my total thinking stamina. After the A-levels in June, I would sit down one weekend with perhaps 12 hours of paper in front of me and turn out specimen solutions (we used to meet up, get and give feedback from the boards), often more or less in one sitting with breaks for food. Probably about 8 hours' careful work. Now I can only work at them for an hour at a time at most, possibly two in a day.

Of course it will be put down to age. That's why so many people must dread reaching 50, as I went down with ME when I was 49, and by the summer when I was 50 I was transformed. It couldn't be the ME, could it? Or perhaps it is psychological: I have a dread of maths questions, so much so that I still do some private tuition. (What is the emoticon for - warning, cynic here?)

Perhaps that is why I find it so hard to read these scientific reports.

 

[aimossy]

problem with cognitive testing though with respect to proof of deficit is that we would be accused of faking.
our working behavioural memory/ and sequencing seems to be sorely affected in a lot of people. mentally the fatigue seems to me like neurogenic fatigue. and I mean that with respect to not even taking the physical parts into account.

 

[aimossy]

I feel that's the beauty in the exercise pem testing.it can not be faked!! the mitochondria stuff which my brain has partially forgotten and this pem exercise stuff will continue to stick they can not argue it. it is not subjective and its great cos its like flipping the cynics the bird!! hehe

 

[Graham]

Suggestions please. I am working on videos 6 and 7 on recovery and the PACE trial, and am looking for labels to put at the top and bottom of the fatigue and the sf-36 scales. Obviously, "Healthy" can be put at the top, but what could be clear and unambiguous for the bottom. I tried "Housebound" but it isn't right. An additional problem is that the fatigue level clumps at the bottom, in other words it doesn't register the true severity of a bad patch, whereas at the bottom of the sf-36 scale it does represent someone who has severe difficulties in washing and dressing.

 

[Esther12]

I'd include info on how they're scored in the comments descriptions (like your video on SF36-PF scores already does).

Wouldn't zero be like 'Total Disability' or something?

 

[biophile]

100 = No limitations.

0 = Maximum disability.

 

[Dolphin]

100 = No limitations.

0 = Maximum disability.

Seems reasonable for the SF-36 PF. I doubt anyone who took part in the PACE Trial scored 0 or even less than 15 before the start of the trial.

 

[Purple]

Suggestions please. I am working on videos 6 and 7 on recovery and the PACE trial, and am looking for labels to put at the top and bottom of the fatigue and the sf-36 scales. Obviously, "Healthy" can be put at the top, but what could be clear and unambiguous for the bottom. I tried "Housebound" but it isn't right. An additional problem is that the fatigue level clumps at the bottom, in other words it doesn't register the true severity of a bad patch, whereas at the bottom of the sf-36 scale it does represent someone who has severe difficulties in washing and dressing.

There was a graph - somewhere on this thread maybe - that showed the distribution of the SF-36 scores on a column chart. How about adding up the percentages of the lower scores on the graph than the average/mean in the trial and saying something something like 'more physically disabled than at least X% of the population' for the bottom SF-36 value?
(Hope this makes sense!)

 

[Graham]

Thanks for the suggestions. Sorry for the delay in replying: my brain has been stagnant. The problem is that on video 6, which starts with a song, I have written an overview of how they defined recovery, and merged the fatigue and sf-36 scales into one diagram. Although, as Dolphin suggested, few would have been at the bottom of the sf-36 scale (severe difficulty in dressing), lots were at the bottom of the fatigue scale. That would prevent me from using Purple's suggestion. Total/Maximum Disability" can't apply, otherwise they would not have been able to take part in the trial.

Of course, you could just tell me that I was daft to incorporate the two scales. What happened was that the full explanation was too lengthy, so that went into video 7, and video 6 just has a simpler version. I was hoping for something more generalised, like "struggling to get by".

In video 7, where the two scales are separate, I can be more specific.

OK, I admit it: I'm just an awkward old geezer. Thanks for your help.

 

[Esther12]

'Best score' 'Worse score'?

 

[Graham]

Ah! Esther triggers a thought. If I label it "worst score" it won't convey how ill that is, but if I can label the entry level score (6 bimodal for fatigue and 65 for sf-36) then it will automatically convey that the bottom of the scale is much worse. I know (recent reminder from Bob) that 65 or less is "severely impaired physical function" and 70 is "substantial physical function", but is there a similar expression used officially for a bimodal fatigue score of 6 or more?

 

[Dolphin]

Ah! Esther triggers a thought. If I label it "worst score" it won't convey how ill that is, but if I can label the entry level score (6 bimodal for fatigue and 65 for sf-36) then it will automatically convey that the bottom of the scale is much worse. I know (recent reminder from Bob) that 65 or less is "severely impaired physical function" and 70 is "substantial physical function", but is there a similar expression used officially for a bimodal fatigue score of 6 or more?

Don't think so - not sure I've seen the threshold of 6 being used before (perhaps the FINE Trial did also to match the entry criteria for PACE Trial).

The threshold of 3-4 in the bimodal scale is often called a test for "fatigue caseness". The phrase "significant fatigue" for scores of 4+ comes to mind as something that I think has been used.

 

[anciendaze]

Hi Again, Graham,

Your "two-back" test reminds me of a test a psychologist tried on me years ago, without knowing my background. During an intense period in the army, I ran an artillery fire-direction center (FDC). It was important to take a call for fire off a noisy radio channel the first time you heard it, at any time, day or night. The meat of this stylized communication involved 12 decimal digits of information. If you could not write it down immediately, you needed to retain this accurately until you could write it down, while also setting in motion several other activities. Anyone who could not do this could not be left in charge. We never wanted to ask callers in dire situations to "say again". (There are reasons you never say "repeat" on an artillery fire net unless you want something devastating to happen.) At one time, I ran a battalion FDC with three simultaneous fire missions, and did not drop a digit, 36 digits in short-term memory.

The psychologist was measuring "digit span", how long a string of digits it took to bury earlier memories. She had strong theoretical reasons to believe this was limited by "The magic number 7 + or - 2" in short-term memory. She was also convinced this could not be changed much by training. She gave up before I reached a span of 15 digits, while still going strong.

Today, I have to ask more than once for telephone numbers.

 

[Graham]

In contrast, my memory of numbers has always been so bad that I used to carry my own home telephone number around with me for about 15 years before I actually remembered it, and I never remembered the number of the school where I taught. My memory of names is equally bad.

 

[anciendaze]

It depends on whether you are able to tie numbers or names to meaningful long-term memories. This meaning doesn't have to make a great deal of sense, as you can learn if you read "The Mind of a Mnemonist" by Alexander Luria. The person in question was beyond ordinary weird, constantly experiencing synesthesia. (Just by accident, I found out some years ago that the physicist Richard Feynman saw the indices of Bessel's functions in different colors. No wonder he couldn't teach his special abilities to manipulate mathematical expressions.)

In my case I had no trouble recognizing the number 1729 in Futurama as the Hardy-Ramanujan number: 1729 = 10^3 + 9^3 = 12^3 + 1^3. It is the sum of two perfect cubes in two ways. Considering the implications in number theory of numbers that are the sum of two squares it is easy to understand why Ramanujan would be interested in this, in a search for higher reciprocity laws. (Unfortunately, this doesn't give me a clue about how Ramanujan found his series for 1/Pi which adds 8 digits per term. I'm told this was derived from the observation that e^(Pi*Sqrt(58) is almost equal to 396^4 - 104, which might make sense if he were familiar with Minkowski's Geometry of Numbers. Getting beyond the first term requires dealing with a nasty modular relation which most likely would not have a solution. Simply guessing that it exists is surprising. There is even a paper which claims to explain the subject clearly. My problem is that Ramanujan appears to have recorded this result in notebooks made before he went to England. Minkowski had not published, and Ramanujan certainly did not have class number theory or, probably, his own mock theta functions, used in the above paper, which seem to have been the result of later work.)

Now back to your regularly-scheduled program.

 

[Graham]

Yes, I know of the method of tying numbers/names to something meaningful in order to remember them. My dad taught me that when I was quite young: he got me to learn the names of the roads and towns that we had to pass through to go on holiday by building up a story around them, so that I could navigate for him, The trouble is that I am too quick at that. What happens is that if I say get confused over a person's name (David or Eric), before I have had a chance to find out which is correct, my mind has already come up with a way to tie both of them to him. Then I can't remember which is the right tie. And for those of you who think I am joking, I'm not. Of course, the best way is to tie the name to the person right at the start when introduced, but by the time the introduction is completed, I have already forgotten the name.

On the other hand, before ME, I did have a very good memory for structure. If I took something apart, I could always put it back together even after some time had elapsed. That's because there was only one structure. It was the same if I drove somewhere new once, I could always find my way there again, even if there had been some road changes. Hence Maths!

I'll accept that I'm weird. But I'm in good company.

 

[anciendaze]

I'll bet you would have no trouble remembering a curious relationship I ran across recently concerning plane curves and analytic geometry. For reasons which are irrelevant here I became interested in confocal coordinates. The classic system uses ellipses and hyperbolas which are orthogonal. Ellipses are defined as the locus of points such that the sum of distances from the two foci is constant. Hyperbolas keep the difference of distances from the two foci constant.

There is another plane curve defined as the locus of points such that the product of distances from two foci is constant, the lemniscate. It just happens that inverting a lemniscate with respect to a circle will give you a hyperbola. Does this have any relation to the integral of 1/r dr = log r + C and log(a) + log(b) = log(a*b) ?

Meanwhile, I have a confession. As happens regularly when I get impressed with myself, I just made a demonstration of the difference between recall and performance intelligence. I arrived at a place I am supposed to be on Saturday. When I asked "What does that expression mean?" the person there told me it was Friday. It seems the last time I filled my pill box I made a mistake, and I've been a day off since Wednesday.