Stamina levels before ME/CFS?

chrisb said:
I didn't but could have worked 12 hour shifts. One of the most annoying statements I have come across recently in the old papers is:

Treatment therefore must take into account the need to break this vicious cycle of deconditioning by initiating a graded programme of exercise which by small increments slowly restores the patient to physical health. It may be difficult to fulfil the patients' expectations of what their level of fitness should be since patients have an exaggerated perception of their pre morbid level of fitness.

Treatment of chronic fatigue syndrome. SJ McBride DR McCluskey
British Medical Bulletin (1991) vol 47 no 4 pp 895-907 @900

I have seen this quoted by others. How do they know? I am convinced that just before I became ill I was very fit. It takes a very strange sort of intellect to feel able to make generalisations of this sort about people in a supposedly in a class which has not even been accurately defined.
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A comment of mine from 2008 on this subject:

https://pubpeer.com/publications/FF00A8557ACE2BE7D3A9D383189CD8
Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill
(This is a comment originally posted in 2008. However, the change meaning it's not formatted on the site http://www.biomedcentral.com/1471-244X/6/53/comments means few will read it there. Also, many may not see it there)

The main finding in this study is that "patients with chronic, unexplained fatigue rated themselves as more active before their illness (p < 0.001)" and that "these differences remained significant for the subset of patients who met strict criteria for chronic fatigue syndrome or fibromyalgia"[1]. The authors then spend a lot of time speculating about whether this could have been an "overestimation of previous activity" and giving the "altered perception" hypothesis.

Given that they only had self-report data to go on, it is interesting to read a recent prospective population study on the illness[2]. It followed 4779 people from birth for the first 53 years of their lives. At age 53, 34 reported a diagnosis of CFS. Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS." As it was a prospective study, there was no issue of recall bias. It also wasn't simply self-rated, as it also involved reporting by a teacher at age 13. Also they used the subject's BMI index - patients who went on to have CFS at age 53 had a (statisically significant) lower BMI than those who did not go on to develop CFS at ages 36 and 43 (before they had CFS). The authors say this "this may provide some indirect but objective evidence of increased levels of activity at these ages, especially as this difference had resolved by the age of 53 years" (when the people with CFS were no longer more active).

In the current study[1], the authors say "the only prospective cohort study of risk factors for CFS found that sedentary behavior at 10 years of age doubled the risk of self-reported CFS in adulthood"[3]. I thought I would give more information on that finding as it only related to a small percentage of the "CFS/ME" patients and doesn't show that on average patients were more inactive: in response to the question, about the amount of sport played in spare time at 10 years, 16% of the people who ever had CFS/ME by age 30 were in the "never or hardly ever" category compared to 8% in the people who didn't go on to have CFS/ME (so 8% more than expected - but it still meant that 84% in the "sometimes" and "often" categories). However the authors of the study[3] didn't combine this data in some way with a question on sports played within school: for the category "Played >2 hours/week of sport at school at 10 years", 52% of those who ever had CFS/ME by age 30 were in this category compared to 44% of those who never had CFS/ME by age 30. The unadjusted OR for this at 1.4 nearly reached statistically significance (95% confidence intervals: 0.9 to 2.2). Some sort of combination of the two pieces of data would have been preferable - a person's body doesn't distinguish between activity done within schools hours and in their spare time.

In the current study[1], the authors point out that their "findings are congruent with those of 3 retrospective studies reporting that CFS patients perceived themselves as more active before their illness began than healthy controls"[4-6]. They also said that "the high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents."[7]

With all this evidence from various sources about pre-morbid levels, researchers perhaps need to start showing more evidence before they will convince many of us of any speculative theories about CFS patients misperceiving how much activity and exercise they used to do.

References:

[1] Smith WR, White PD, Buchwald D: A case control study of premorbid andcurrently reported physical activity levels in chronic fatigue syndrome. BMCPsychiatry 2006, 6:53. http://www.biomedcentral.com/1471-244X/6/53

[2] Harvey SB, Wadsworth M, Wessely S, Hotopf M: Etiology of Chronic FatigueSyndrome: Testing Popular HypothesesUsing a National Birth Cohort Study. Psychosom Med. 2008 Mar 31

[3] Viner R, Hotopf M: Childhood predictors of self reported chronic fatiguesyndrome/myalgic encephalomyelitis in adults: national birth cohort study.BMJ 2004, 329:941. http://www.biomedcentral.com/pubmed/15469945

[4] Riley MS, O'Brien CJ, McCluskey DR, Bell NP, Nicholls DP: Aerobic workcapacity in patients with chronic fatigue syndrome. BMJ 1990, 301:953-6.

[5] Van Houdenhove B, Onghena P, Neerinckx E, Hellin J: Does high"action-proneness" make people more vulnerable to chronic fatigue syndrome?A controlled psychometric study. J Psychosom Res 1995, 39:633-40.

[6] MacDonald KL, Osterholm MT, LeDell KH, White KE, Schenck CH, Chao CC,Persing DH, Johnson RC, Barker JM, Peterson PK: A case-control study toassess possible triggers and cofactors in chronic fatigue syndrome. Am J Med1996, 100:548-54.

[7] Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommnen H:premorbid "overactive" lifestyle in chronic fatigue syndrome andfibromyalgia: an etiological relationship or proof of good citizenship? JPsychosom Res 2001, 51:571-6.
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arewenearlythereyet said:
Prior to getting ill in my 40’s I was working 10-12 hr days with no breaks for years (I worked in food retail/manufacturing) coming home, going out etc

I never really did sports or understood the point of it really since it seems an unnecessarily unproductive waste of time (I realise I’m probably in the minority on that one) I’ve always felt kind of sick after sports but was able to do it ok when forced. I conclude I don’t make endorphins or they don’t register like other people, so I don’t get an exercise high.

The 5-10 years before getting ill I was doing up our house which was a wreck that needed everything doing to it ...so I would leave for work 7:30 am drive an hour, work until 8 pm with no break, drive the hour home, have a quick tea and then be up stepladders sanding drilling scraping etc until midnight, have a couple of glasses of wine go to bed. I did this for years no problem, slept fine felt refreshed in the morning had loads of energy. Weekends were more diy. One Sunday I had hardcore and pea gravel delivered to finish off the drive that my wife and I dug out by hand (13 skips worth). My wife had to be away for the weekend and I was left to hand shovel 8 tonnes of rock and stone on my own. I did this and hammered it down with one of those vibrating plate things in a couple of hours.

Nowadays I can carry 2 kg for around 3-5 mins now without getting PEM.

I work 8 hrs now desk bound with 2 trips to the loo (120 steps each) The journey time is 3 mins by car and I have breaks throughout. I have no spare energy for anything other than that and my exercise for the day is having a shower and the steps to and from my car to front door and car to desk at work.

Weekends are mainly feet up with maybe some light pottering around the garden (1 hr of non resting time per day). I don’t go out and my wife and son go out and do most weekend activities on their own.

I am older than I was then (I’m 50 now) but my illness progression although gradual over a year was a massive difference to where I was over that period.
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You have some work ethic, both before and after ME. I hope your wife and family appreciate you (no need to reply on that).
 
Almost limitless. I always had pretty bad sleeping problems that lead to sleeping very late in my teenage years but whenever awake I used to have unlimited energy reserves and was more of a night owl so it may mostly be a lopsided sleep cycle.

For me it's the most annoying part of the CBT/GET paradigm. I never needed a coach or motivator or whatever to do stuff. I never needed someone to tell me when to stop either. I like doing stuff, lots of stuff, as much stuff as possible. Which includes relaxing so it's not like I ever overdid it. I just need variety and always had the energy for more.

The drive is still all there, but energy levels are 1-5% of what they used to be.
 
I've always need a lot of down time, so a doctor's call schedule - or even just medical school - would have been unsustainable.

In college I was highly motivated and had an earned reputation for a solid academic work ethic. I also lifted weights religiously - and none of those sissy machines! - Chalky, sweaty barbells loaded heavy for squats, deadlifts, clean and jerk, etc.! On the flip side, I went to bed at 10pm, sleeping 9-11 hours/night. I never drank, did any drugs, or 'partied' (loud noises, tons of people, no thanks. And too many girls swarming me - sooo annoying!). I got work/studying done early so I could chill as much as possible in the evenings. On Friday and Saturday nights I typically sat alone in the library basement doing nothing and zoning out completely. I needed all of this recovery/down time to avoid physical and emotional burnout. Having written this, I think I was born to be a monk.

So I've pushed as hard as I could in a youthful, healthy state and I can say that I could never have stood up to what some here have described as previously just an ordinary day.
 
I don't think I ever had superior cognitive stamina. I would often need to take power naps while reading during law school and would have bad lulls in the afternoons when working as a lawyer. On the flip side, my physical stamina was always very strong. I keeping thinking, "I do not have the natural disposition for this disease!" Joking aside, I truly miss athletics...I love the push and a feeling of accomplishment. It's horribly ironic that I now have a disease characterized by some as exercise avoidance behavior. I designed my life around athletics, no matter what job I had.
 
Cinders66 said:
I was wondering if people can think back to their pre illness levels of energy. Do you think you could have regularly worked 12 hour shifts?
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This is not even theoretical on my part. As a software engineer there were definitely periods when I worked 12 hour shifts for many months in a row. Plus extra time on the weekend.

I'm not recommending this kind of work schedule! I had a terrible work/life balance in my early twenties. But I did work a lot of hours in my early 20s.

I also had days where I'd work a more normal 8-9 hours, drive an hour to the Columbia River Gorge, hike with friends for 2+ hours on a trail loop that was about 5.5 miles with loads of elevation gain (forgot numbers), drive an hour to get home, and eat dinner at 9:30 or so. Then I'd get up the next day at 6:30 for another work day. No problem.

I had loads of energy and stamina in my early twenties. I got sick at age 29 in Jan 1990 after some kind of viral illness in Dec. 1989.
 
chrisb said:
Treatment therefore must take into account the need to break this vicious cycle of deconditioning by initiating a graded programme of exercise which by small increments slowly restores the patient to physical health. It may be difficult to fulfil the patients' expectations of what their level of fitness should be since patients have an exaggerated perception of their pre morbid level of fitness.
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Oh my goodness. (trying to keep my language clean)

Sheesh! When I first got ill I had trouble walking across the room. I am still unable to stand long enough to take a shower due orthostatic intolerance. If I just had a level of "fitness" that would match your average couch potato (work at a desk job, be able to buy groceries or take a shower without it being a HUGE energy drain), then I'd be happy.

This is very different from having fitness expectations that are too high.
 
I was fit and active, played social squash and volleyball 3-4 times a week (had access to free courts). My main transport was a pushbike, 5-10km rides were common and no problem at all. Where I live has a very good bike path network, and I used to do a long ride most weekends just for pleasure. Resting heart rate was around 60. Sleeping like a baby. Worked full time and studied part-time as well. Used to do volunteer work for the Red Cross one evening a week. Etc.

Clearly no problem with stamina before getting sick.
 
I was working full time with frequent overtime, walked everywhere (e.g. 1 hour to work each way - people thought I was mad), went swimming every day and trained for a 5km charity run.... I gave myself a goal of running it in twice the world record time but soon found (after about 4 weeks training) that it was too easy so I aimed for 1.5x the world record time. Went country walking every weekend (around 20km - which astonished my friends who couldn't fathom walking that far), some long distance hikes too. Normal running of the household and hobbies on top of that.

Then one day, I suddenly couldn't run (in the gym) and kept on collapsing after 2 minutes. The gym running machines showed my heart rate approaching 200. I thought there was something wrong with the machines (yes, all of them) and carried on pushing myself until I collapsed even after walking a few meters. Then lied down on the pavement before carrying on walking, walking a few hundred meters in half an hour or so - people probably though I was drunk, lying on the floor. To get to this state took about 10 months.

One day, before I had any noticeable symptoms, I collapsed inside a pool during a water aerobic class (my favourite) and had to be carried out and lied by the side of the pool for ages until I could move again.

I was at an age when it was starting to show who looks after their bodies - I was healthier than my peers who drank to excess/smoked/ate junk food.

My motivation and perseverance were to my detriment, looking back now. Doctors were just useless, lecturing me about motivation and lack of self-esteem, and not running any tests and asking about my so-called 'adverse' childhood. I realised I had ME long before doctors did... or rather my friends/co-workers did because they have seen what was happening to me to be the same they have seen in others (their friends/family). They warned me not to push myself so that I don't become more ill. As a previously completely healthy person, I thought that meant maybe cutting down on my gym/running sessions. I ended up bedbound for more than a decade.

(edited: missing word)
 
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I've just remembered some somethings re my preME fitness activity levels. I used to walk, run and cycle everywhere. In my childhood/teens walking 10 miles a day was not unusual, doubling it was uncommon but did happen with no issues. When I was 18 I got a placement with IBM and lived approximately 5 miles away, I cycled to and from work and came back for lunch every day, within my lunch hour.

The bit that triggered this memory was that some nights I used to cycle down the Winchester to Southampton road to get fish and chips for tea. This is a road with a number of significant hills, and although I didn't realise it at the time, about 10 years later, whilst on holiday, I had a motorcycle and measured the distance, it was 12-13 miles, which I had done both with no real effort and fast enough so my tea was still hot when I got back. Most weekends I would cycle somewhere of passing interest, an example being Stonehenge, just for something to do.

ETA - Holy $%^& - I just asked google how far it is from Otterbourne (where I was staying when on placement to IBM) to stonehenge, it says just under 40 miles (depending on route), I knew it took quite a while but I had no idea it was that far, maybe the roads were different, and shorter, 30 odd years ago. I went there and back on an old raleigh 3 gear bike in the same day, on at least 2 occasions.
 
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thanks everyone.

It seems I was especially weak. Perhaps that's why I succumbed as a teen , most people commenting got sick well into adult life.

However playing sport and being active I think is different to the demands of a junior dr. The program I watched had a dr booked as a surgeon and consultant for twelve hours. Near the end of her shift she had to attend an emergency to learn a procedure, she went into overtime stitching up a mans face on about hour 13 , off to do paperwork then a few hours kip and back the next day with a smile. I find that staggering. But maybe I was always fatally weak , I wish I'd ever known that degree of vitality tbh.

I could happily play sport or hike all day so I didn't feel weak but clearly I regard as super human what others regard as normal. I simply could not have sustained the above happily but I Also do think a lot of jobs, e.g. some Teaching, 5 hours class room, 5 hours prep aren't at that stress /demand level of JD for comparing. I was contemplating teaching as a career and the hours/ demands felt doable.
 
Cinders66 said:
thanks everyone.

It seems I was especially weak. Perhaps that's why I succumbed as a teen , most people commenting got sick well into adult life.

However playing sport and being active I think is different to the demands of a junior dr.
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I worked on a hospital switchboard for 3 years, and felt really bad about disturbing junior doctors when they were trying to sleep, to tell them about a patient having a heart attack, for example. I knew all too well the stress they were under.

They used to come into the switchroom to change their bleeps, and often chatted to us then. (It was the 80s - things are probably very different now.)

They often succumbed to drink, drugs, etc., just to survive the punishing regime. A lot of errors were made - predictably - despite their best efforts.

And still it goes on. I find it incredible and outrageous.

I doubt if you were especially weak, by the way.
 
Cinders66 said:
It seems I was especially weak. Perhaps that's why I succumbed as a teen , most people commenting got sick well into adult life.
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I don't think you are necessarily weak just because you thought a doctor's training schedule was too grueling. I would never want to do that type of schedule, either!

But some folks might be energized by that type of environment and enjoy the adrenaline rush. Different careers draw different types of people.

I thought you were just commenting on the general idea of working 12-hour shifts so that's how I answered. The stress and mental pressure (responsibility) of a medical resident is quite different from the stress of my old job even if sometimes I worked those kind of hours.

Also, I don't think getting ME as a teen says anything about how weak or strong you were before. At least, I've never seen any data on that.
 
This is an interesting blog everyone has a different past in such different ways before ME. Thanks @Cinders66 .

I worked 12hr shifts for 22years but not without extreme struggle. I didn't understand my difficulty was ME of course.

Through college (late in life age 26-34)I had to work so hard to get through...than start the 12 hr shifts, part of the job.

My story (not to sound pathetic, just truth). I had to survive alot of abuse as I grew up. At first I survived by riding my bike walking miles and miles. I played softball and basketball.

Then as things got worse, it was drugs and alcohol abuse that was my escape. From 12 yrs old until my first kid at 23.

After 8yrs of working 12 hr shifts I had (didn't know what it was then) my first severe ME episode. Went through a million tests, one doc diagnosed me with CFS and sent me on my way. My primary diagnosed me with depression started antidepressants and he sent me on my way.

I went back to working 12hr shifts, got warnings for too many absences, got fired for too many absences, finally 22years later my PR diagnosed me with ME.

So even though I put myself down for being a wimp for all those years..... I now know I couldn't do 12hr shifts, in fact I finally couldn't handle working at all.

I don't know if it was the long shifts that caused my first ME crash or not. I know that trauma can be an ME trigger and I had plenty of that too. Plus the drugs and alcohol I did. I also had a GI infection when I was 20ish.

Tough to know. I think my energy level was like your average person until I started the long shifts. My energy. Went way down after that first 8yrs.

Sorry so long everbody...geez. :slugish: :sneaky::whistle:
 
I used to leave for work at 06am, come back between 6-7 pm, eat, go train for 1 hour, come back and continue. I had 2 kids and had separated from their father, so did everything on my own. I would do bike training on the week-ends and sometimes work 10hoirs or more. For a few years I went to university on top. I had a house to take care of. And 2 dogs.

I had a very high level of stress at work, and lots of responsibilities. I had to answer calls and emails even after leaving the job.

I was okay until I got my first viral infection that led to ME. Then I started going downhill.
 
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