PACE trial TSC and TMG minutes released

[Trish]

I wouldn't suggest anyone with ME do the step test unless they have such mild ME that going up and down two flights of stairs within 2 minutes is easy, something they regularly do, and know it doesn't bring on PEM. When I suggested we get people to try it, I meant healthy people.

Edit - I've been told that should be 3 flights of stairs. I remember having to climb 3 flights of stairs once to attend a meeting when I was mildly affected and still working - wiped me out for days, even though I had an hour sitting in a meeting to recover before going down again. Those PACE participants must have been very mildly affected if they could do that in 2 minutes - or they went home and crashed badly.

 

[Lucibee]

I wouldn't suggest anyone with ME do the step test unless they have such mild ME that going up and down two flights of stairs within 2 minutes is easy, something they regularly do, and know it doesn't bring on PEM. When I suggested we get people to try it, I meant healthy people.

3 flights of stairs. THREE!

I wouldn't do that!

And I'm ... errr.... not really very healthy!

 

[Trish]

Oops, sorry, I was guessing higher ceilings! I'll change my post.

 

[Lucibee]

Oops, sorry, I was guessing higher ceilings! I'll change my post.

How tall are your ceilings????

 

[Trish]

I live in a 60's bungalow with ordinary ceiling heights. I've just counted and measured the stairs to the upstairs room which I rarely visit. It's 13 steps 20cm high, so 2.6 metres. I should know that as I designed the staircase - I even made a cardboard model of it to show the architect to prove it would fit properly the way I wanted it. So yes, I agree, 3 flights of stairs.

 

[Inara]

You know what? I really wouldn't, unless you can normally cope going up and down 3 flights of stairs. Because that's what it's equivalent to.

In general, going stairs is hard for me. If I can rest in between and go slow, it should be ok. But I think, after Graham's posts, the experiment isn't needed anymore. Or is it?

Edit: I've just seen the above posts. So I retreat the offer

 

[Graham]

This is a strange one - I could go up three flights of stairs and only be puffed temporarily. I'd not be able to run up them two at a time like I used to: it would be a steady plod. And yet so many of you have so much difficulty with that, it makes me feel as if my ME must be mild. Yet it has had profound effects on other aspects of my life.

I think it could be this inconsistency of how it affects us differently that makes us such good candidates for the mind games that CBT plays: do we really struggle badly to walk several hundred metres? What are we comparing this with? I'd really have trouble with answering the sf-36 questions. I can take the dog out for a walk of around a mile, to a mile-and-a-half most days. We are slow, and we have lots of sniffing stops (well, the dog does, not me). Is that moderate difficulty or severe difficulty? When I compare it with when I was fit, it is severe. When I compare it with many of you, it's just a mild problem. It's easy to see how a dozen sessions of mind games could get me to change my answer.

 

[Adrian]

This is a strange one - I could go up three flights of stairs and only be puffed temporarily. I'd not be able to run up them two at a time like I used to: it would be a steady plod. And yet so many of you have so much difficulty with that, it makes me feel as if my ME must be mild. Yet it has had profound effects on other aspects of my life.

I think it could be this inconsistency of how it affects us differently that makes us such good candidates for the mind games that CBT plays: do we really struggle badly to walk several hundred metres? What are we comparing this with? I'd really have trouble with answering the sf-36 questions. I can take the dog out for a walk of around a mile, to a mile-and-a-half most days. We are slow, and we have lots of sniffing stops (well, the dog does, not me). Is that moderate difficulty or severe difficulty? When I compare it with when I was fit, it is severe. When I compare it with many of you, it's just a mild problem. It's easy to see how a dozen sessions of mind games could get me to change my answer.

But Graham as you get older everyone has problems with walking what your experiencing is just normal - don't you want to get better? If I got a CBT therapist to repeat this to you in sessions over a year would you change your view of what is difficult and change the box you tick? If you did I think we could call that the PACE effect.

 

[Invisible Woman]

But Graham as you get older everyone has problems with walking what your experiencing is just normal - don't you want to get better? If I got a CBT therapist to repeat this to you in sessions over a year would you change your view of what is difficult and change the box you tick? If you did I think we could call that the PACE effect.

That is so true. The scary thing is that is what I said to myself as it got harder and harder to do the exercise I used to love. Then it got harder and harder to manage the basic necessities of life. I was in agony. I kept telling myself, no, it's normal as you get older to slow down and have aches and pains. I was barely 30 .......

 

[Inara]

@Graham, I have nearly no problems with walking on even ground, but uphill and stairs are really hard. I think we are all a bit different, and I don't know how much can be deduced from this concerning severity.

 

[Daisy]

Adrenaline can mask symptoms sometimes to a significant degree. If a patient is continually pushing themselves it can take a long wind down period of weeks or even months before there is a stabilisation.

I have been fairly stable over the last month or so but over did things on Friday and Saturday. Yesterday I felt dreadful. Today I feel a bit better. But today my heart rate variability measurements are much worse. My SNS scores are elevated, and PNS scores depressed.

So although subjectively I feel a little better today physiologically I'm worse. My heart rate has also been very spiky both days, another indicator that I'm not stable.

I think that it is only when ongoing subjective and the objectives measurements (including sleep) start to tie up over a long period of time that any useful conclusions can be drawn.

 

[Graham]

It's strange, but I seem to have a 45 minute battery. I can potter along for about that amount of time, then I need to rest. So that's how long I take the dog out for a walk: that's my maximum driving range: when I used to work at maths problems, that was my limit before I stopped being able to do basic arithmetic (e.g. checking that 3x3 was 9 on a calculator!). But as long as I stick to that, have an hour or so as a break, and don't do more than three or four sessions a day, I am pretty stable at that. Obviously it's not quite that clear-cut and simple, but, as Adrian so tactfully reminds me, now that I am rather decrepit in age, that factor is beginning to kick in as well.

But if, after 19 years of it, I still don't know where I would put myself on the mild/moderate/severe scale, despite being able to "detach" my emotions from analyzing my performance, how on earth can anyone trust people's subjective assessments?

 

[Barry]

@Graham, I have nearly no problems with walking on even ground, but uphill and stairs are really hard. I think we are all a bit different, and I don't know how much can be deduced from this concerning severity.

To me this comes back to power demand again. On straight and level the power demand (i.e. the rate at which you are consuming energy) is significantly less than when going uphill. I think for many PwME, one of the core issues is a severely restricted ability to convert energy at the demanded rate. I came to this conclusion a long time back now, when walking with my wife. With frequent stops (taking photos etc) she can walk slowly over a couple of miles, maybe three. But the she simply cannot use energy at anything like the rate she once would have ... or her mind desperately still wants her to. We invariably talk about "energy", but I think it is more significantly about power - the rate at which PwME convert energy ... i.e. very slowly.

 

[Adrian]

but, as Adrian so tactfully reminds me, now that I am rather decrepit in age, that factor is beginning to kick in as well

I wasn't intending that rather to echo what I thought a therapist may say to convince you that your levels of activity are normal and hence change your scores.

how on earth can anyone trust people's subjective assessments?

If we know we our own judgement on these things are contextual and difficult then we cannot trust subjective assessments

 

[Adrian]

To me this comes back to power demand again. On straight and level the power demand (i.e. the rate at which you are consuming energy) is significantly less than when going uphill. I think for many PwME, one of the core issues is a severely restricted ability to convert energy at the demanded rate. I came to this conclusion a long time back now, when walking with my wife. With frequent stops (taking photos etc) she can walk slowly over a couple of miles, maybe three. But the she simply cannot use energy at anything like the rate she once would have ... or her mind desperately still wants her to. We invariably talk about "energy", but I think it is more significantly about power - the rate at which PwME convert energy ... i.e. very slowly.

I think this exposes other issues with SF36 as a scale. Really to be a scale there should be an expected order and linearity of response but if people find (and judge severity) different activities have different difficulties then its not really ever going to be a scale. There is no expected ordering of answers. I did do a cluster analysis of the SF36 score answers for people with around the midpoint on the ONS survey and there was little consistency.

 

[Barry]

I think this exposes other issues with SF36 as a scale. Really to be a scale there should be an expected order and linearity of response but if people find (and judge severity) different activities have different difficulties then its not really ever going to be a scale. There is no expected ordering of answers. I did do a cluster analysis of the SF36 score answers for people with around the midpoint on the ONS survey and there was little consistency.

I've been muttering on about this for quite a long time. Their whole rationale (not!) seems to tacitly presume nice simple deterministic relationships between self report answers and things like physical function and fatigue, relying primarily on magic it would seem, rather than biology and physics.

 

[Amw66]

I've been muttering on about this for quite a long time. Their whole rationale (not!) seems to tacitly presume nice simple deterministic relationships between self report answers and things like physical function and fatigue, relying primarily on magic it would seem, rather than biology and physics.

I think the gist is that they do not think about what they are actually measuring.
There are many assumptions on linear relationships that are simply not there - it seems that once you have converted something to a figure it loses its identity as a thing in itself.

 

[Barry]

I think the gist is that they do not think about what they are actually measuring.
There are many assumptions on linear relationships that are simply not there - it seems that once you have converted something to a figure it loses its identity as a thing in itself.

Yes, they seem to think that if you pin a number on something then it becomes a "magic number" ... ... suddenly endowed with clairvoyant abilities to perceive relationships that other's cannot reach. Who needs biology and physics when you have psychiatrists.

 

[Solstice]

It's strange, but I seem to have a 45 minute battery. I can potter along for about that amount of time, then I need to rest. So that's how long I take the dog out for a walk: that's my maximum driving range: when I used to work at maths problems, that was my limit before I stopped being able to do basic arithmetic (e.g. checking that 3x3 was 9 on a calculator!). But as long as I stick to that, have an hour or so as a break, and don't do more than three or four sessions a day, I am pretty stable at that. Obviously it's not quite that clear-cut and simple, but, as Adrian so tactfully reminds me, now that I am rather decrepit in age, that factor is beginning to kick in as well.

But if, after 19 years of it, I still don't know where I would put myself on the mild/moderate/severe scale, despite being able to "detach" my emotions from analyzing my performance, how on earth can anyone trust people's subjective assessments?

Subjectively I'm the batman, objectively I'm a fat 30something-yo mostly couch-bound man that's starting to go bald. I'd still fill in batman though if ever surveyed about my health-status.

My point offcourse being that if you're gonna use questionnaires to measure people's health you should take in account that you'll probably get a lot of bullshit answers.

 

[Mithriel]

Now I'm severely affected (and all this may be why ) but I always found walking to be quite easy especially compared with standing or a complicated manoeuvre like getting on a bus, handing over money. I've seen ME described as being able to lift a bag of potatoes over your head once but not a spoon to your lips 3 times and that is exactly how things affect me. So walking was 1 thing, just start then the rhythm keeps going.

Even when started using a wheelchair it was for distance. We would go out and I would get out and walk up a steep hill. The steepness never affected me, flat or sloped it was the number of steps.

It probably helped that I am from a generation who walked everywhere. Even when I had ME I was walking far more than government guidelines, so I knew that deconditioning was not causing my ill health. (Though many times I walked to school or nursery to pick up my kids while I could barely see and had to use a walking stick to keep my balance)