MEA: Make M.E. Better campaign

[RogerBlack]

Deconditioning is not clearly defined, so it will mean different things to different people.

I was using the term to mean what Crawley et al seem to use it to mean, and the divergance from what an exercise physiologist might.

I have not asked one, but suspect they would come up with something like:

Lessening of the capacity for activity due to changes in the musceloskeletal and nervous system, combined with lack of cardiac training. Leading to normal effects of muscular overwork when desired activities are attempted, and needing an extended period of exercise to get to desired activity levels.

I absolutely of course accept this is real.
Do too much, and you get everything from swolen sore muscles that were exercised the next few days to the possibility of damage due to torn tendons or other things.

I have never found a concrete definition of deconditioning in the Crawley et al literature.
It seems never to be used without the concept of 'fear/avoidance beliefs'.

The implication of the term as it is used seems to be intended to be:

Patients noticing normal response to exertion after their illness, and assuming that this normal response is in fact due to their illness. Then entering an OCD type state where they form strong long-lasting habits of avoiding activity on the basis of the normal response to activity, when in fact simply exercising to become 'conditioned', or therapy to understand this is not real would fix them.

Of course you can't compare (well, ideally) long-term CFS patients with healthy controls, but want an activity matched set.
Deconditioning (in the first definition) is a symptom, not causal.

I would be really quite surprised if there is a substantial number of CFS patients that are significantly limited beyond their CFS due to classical deconditioning.

Crawley et al very much do not seem to use the term as only being applicable to the bedbound.

It's a bit insane that they can hang pretty much their entire case off a term they don't define.

 

[Barry53]

Deconditioning is not clearly defined, so it will mean different things to different people.

Most patients are not bedbound and walk around and do some stuff. If deconditioned is defined to mean the lack of fitness of a certain severity seen in patients that are bedridden then most patients are not deconditioned as per this definition.

Of course having this illness doesn't magically make one immune to the effects of reduced activity. It seems however that in ambulant patients (for example PACe trial participants) that there is very little to be gained from exercising.

My wife can get about reasonably, but very slow walking pace, very limited endurance - and of course pays for it afterwards. She will be deconditioned to a fair degree - there must be a whole spectrum. Exercising beyond what she can do would be completely disastrous.

 

[trishrhymes]

Some interesting studies of the effects of prolonged bed rest on physiology have been done by NASA to help with understanding physiological changes in astronauts.

I don't suppose they have done metabolomics, but it would be interesting to know whether they have useful data for ME/CFS comparison. If they're still doing them, maybe ME researchers could ask for some blood samples.

I googled NASA deconditioning, and found a few studies.

Haven't got the energy to read them now, but I have a hazy memory of a TV program about someone who took part in one of their prolonged bed rest studies. I remember when he first got up he had bad orthostatic intolerance, and had to get up in stages, I think over several days. He did highly monitored re-conditioning exercises and was back to normal activity levels within a few weeks.

 

[Artstu]

I appreciate what you are saying, but I am interested to understand. How can you tell you are not additionally deconditioned, as well as having the fundamental ME/CFS problems? I do not see (and by that I really do mean I am not understanding, not that I obstinately disbelieve ) how anyone could know they are not consequentially deconditioned, whilst suffering from ME/CFS. I would have thought one masks the other.

I know I'm not because when my symptoms are in a better period and I'm fully rested I can function at a level similar to what I believe I would if healthy.
I have good muscle mass and can get my heart rate up to around 80% of max for reasonable periods, I can walk at 4 mph if I wish.
What I don't have is the ability or certainty to function at times, and at those levels for very long,
I also believe my fitness is higher than most healthy people of my age, however maintaining a low level activity for a long period is where a healthy unfit person is going to highlight my illness related limitations.

 

[Barry53]

I know I'm not because when my symptoms are in a better period and I'm fully rested I can function at a level similar to what I believe I would if healthy.
I have good muscle mass and can get my heart rate up to around 80% of max for reasonable periods, I can walk at 4 mph if I wish.
What I don't have is the ability or certainty to function at times, and at those levels for very long,
I also believe my fitness is higher than most healthy people of my age, however maintaining a low level activity for a long period is where a healthy unfit person is going to highlight my illness related limitations.

That is really interesting. I would guess (only a guess) that because you have times where you can function well for a while, those periods of activity are enough to keep you in good shape. I would imagine that for people who cannot do this, then their underlying fitness would decline. But not entirely sure.

 

[arewenearlythereyet]

I am currently "in remission" and I can currently fit in a 20 minute gentle walk below aerobic threshold 4-5 days a week. I fit this in whenever I can at lunch time. Due to other events going on ( losing my job) I recently cut out my normal lunch time walk to conserve energy during the consultation period on top of my normal pacing. When I went back to fitting the walk in, I definitely noticed a lack of fitness compared to before even though the exercise is gentle and I only stopped doing it for 4 weeks. This was mainly noticeable as aching muscles (normal muscle ache not CFS pain if you know what I mean) a little nausea/fog straight afterwards and feeling like I am more tired at the end of the day. so I guess you could call that deconditioning of a sort even though there was very little strenuous exercise involved ( I keep my heart rate below below aerobic threshold). It took me a couple of weeks to get back to where I was before I stopped completely.

 

[Hutan]

At times when I was well but work was demanding, I worked long days sitting in front of a computer and then came home and did the housework and gardening and looked after children - but had a husband and a cleaner to do some of that work too. So my physical activity level at those times wasn't particularly high, but when I had to do field work (often in remote tropical (hot) areas) or wanted to dance the night away, I could do so easily.

Now that I have ME and no longer work, I still do the housework and gardening but I have to spread it over the whole day, with periods of lying down. I don't have a cleaner, my husband works overseas, my teenage son is sick and so needs care and I have a dog which I try to walk every morning for around 20 minutes.

So, in terms of physical activity, most days, I am actually just as active as during some extended periods when I was well. The big change has been in my mental exertion - it's pretty minimal now whereas before I thought for a living. And, I no longer have the capacity to 'go into fourth gear' for sustained physical activity, when I need or want to.

Indeed, just walking up the couple of steps from the garden often takes conscious effort. And I walk up those steps many times a day. The morning walk has not got easier over time as it would if I was just unfit. Some days it is easy, others it is so hard that I get a little way and turn around.

Of course, I only have mild ME (although the impact on my life has been big). I think I do as much physical activity as many women my age. I'm not deconditioned.

 

[barbc56]

me interesting studies of the effects of prolonged bed rest on physiology have been done by NASA to help with understanding physiological changes in astronauts

Interesting you should bring this up. I completely forgot, but the other day I glanced at an article about a recent study, don't know if it's still ongoing. about an astronaut who was in space for a year compared to his identical twin. The only thing I remember is that the twin in space shrunk and the twin on earth grew. I don't know by how much. I'll have to look it up. If someone finds it go ahead and post.

I had another point but will expand on it later as I would like to know the medical definition of deconditioning. I think it may play a miniscule part but becoming conditioned will not cure us.

I'll look for the article and if I have enough energy after vacuuming, tap dancing and hiking, which will take some time as I live in Illinois, flat as a pancake so would probably have to go across states lines to find a decent hill, will reply later today.

People have many levels of deconditioning in the well population.

I think deconditioning would make a fascinating subject to study.

Edit. I may have repeated what others have already said. Didn't realive this thread is long.

 

[AndyPR]

https://www.nasa.gov/feature/how-st...an-body-we-now-have-a-peek-into-what-the-nasa, would guess this is what @barbc56 is referring to. A quick glance through doesn't seem to say anything about deconditioning but I may have missed it.

 

[trishrhymes]

Interesting you should bring this up. I completely forgot, but the other day I glanced at an article about a recent study, don't know if it's still ongoing. about an astronaut who was in space for a year compared to his identical twin. The only thing I remember is that the twin in space shrunk and the twin on earth grew. I don't know by how much. I'll have to look it up. If someone finds it go ahead and post.

I think it's the other way around. People 'grow' in space because without gravity the discs between our vertebrae in our backs become fatter. This wears off after a few days or weeks back on earth as gravity means the body weight when we stand squeezes them back down again.

I think people on prolonged bed rest also get temporarily taller for the same reason. And I seem to remember reading somewhere that we get slightly taller overnight, though I might have dreamed that last bit.

 

[barbc56]

@AndyPR

This article goes into more depth. Interesting. It doesn't say anything about height, unless I missed it. I so want to look that up.

Yeah, I didn't see anything about deconditioning. Thanks for finding this.

@trishrhymes , wow, taller overnight. I could use some height. You may be right as we get shorter as we age.

Edit, I did misread the article.

"In space without gravity, everybody stretches. But when you get back to Earth, gravity has this effect on you and it pushes you back. So by the time he got back to Houston, they actually measured both of us at about 3 in the morning after he got back and we were exactly the same height again.

http://www.npr.org/sections/thetwo-...ity-mark-kelly-talks-about-nasa-s-twins-study

 

[PhoenixDown]

Robert Naviaux et al study, which forms the basis for this new UK research initiative:

More than 2 million people in the United States have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Can you really agree with that prevalence of 2 million? That's 0.61% of the US population. Applied to the UK that's (0.61% of 65,500,000) = 399,550 ME/CFS patients in the UK. That's way higher than the MEAssciation's already inflated figure of 250,000. Sounds like an over inclusive criteria to me.

 

[me/cfs 27931]

Can you really agree with that prevalence of 2 million? That's 0.61% of the US population. Applied to the UK that's (0.61% of 65,500,000) = 399,550 ME/CFS patients in the UK. That's way higher than the MEAssciation's already inflated figure of 250,000. Sounds like an over inclusive criteria to me.

"Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are debilitating conditions that affect somewhere between 836,000 and 2.5 million Americans." - Institute of Medicine report

https://www.ncbi.nlm.nih.gov/books/NBK284905/

2 million is in the high end of this range, but just as plausible as saying 1 million.