Discussion in 'General ME/CFS News' started by oceanblue, Apr 29, 2012.
How can one be sure there is nothing else?
Thanks, Marco. Searched the Harms paper for 'deconditioning' and found lots of references, mostly about muscle metabolism, but nothing that seemed to link deconditioning in healthy individuals to CFS-like symptoms - at least not in the abstracts I checked.
Someone sent me a link to a NASA review of the impact of bed rest on healthy volunteers: NASA Technical Reports Server - Recovery After Prolonged Bed-Rest Deconditioning, which looks interesting but I haven't been up reading it yet
Thanks for the Brain paper and Hippocrates quotes to re appropriate acitivity levels for the individual based on their particular condition. Haven't seen that one cited by proponents of the biopsychosocial model...
This may be of some (morbid) interest :
Doesn't mention pain though!
Something that's just randomly occurred to me is what we don't get. When I was in hospital for a couple of days last month for cholecystectomy, they put compression socks on me. I think this is standard when you're going to be on bedrest for even a short time because of the risk of DVT and stroke. I don't know how common those actually are with standard patients on bedrest, but I've never heard of them happening with ME patients, not even the ones who are totally bedbound.
This is one of the biggest damages that the proponents of the BPS models caused, in my opinion.
They created a cynical simplistic and grotesque image of what bio-psycho-social really is with their "one size fits all" approach.
I don't have any statistics for clots in ME patients but you would think that a percentage of us would have higher risks because so many of us test positive on the ISAC hypercoagualtion test from Hemex labs. I had to have months of heparin injections because of this and need to continue with herbal blood thinners.
If I remember, something like 80% of ME/CFS patients test positive on this test which was devised for this community.
And then had it implemented by morons in a system without appropriate systems of control and regulation!
Even if all their beliefs about CFS had been accurate, it still would have been a disaster imo.
Psychol Med. 2001 Jan;31(1):107-14.
Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity.
Bazelmans E, Bleijenberg G, Van Der Meer JW, Folgering H.
Source: Department of Medical Psychology, University of Nijmegen, The Netherlands: Jan 2001: http://www.ncbi.nlm.nih.gov/pubmed/11200949
Chronic fatigue syndrome (CFS) patients often complain that physical exertion produces an increase of complaints, leading to a greater need for rest and more time spent in bed. It has been suggested that this is due to a bad physical fitness and that physical deconditioning is a perpetuating factor in CFS. Until now, studies on physical deconditioning in CFS have shown inconsistent results.
Twenty CFS patients and 20 matched neighbourhood controls performed a maximal exercise test with incremental load. Heart rate, blood pressure, respiratory tidal volume, O2 saturation, O2 consumption, CO2 production, and blood-gas values of arterialized capillary blood were measured. Physical fitness was quantified as the difference between the actual and predicted ratios of maximal workload versus increase of heart rate. Fatigue, impairment and physical activity were assessed to study its relationship with physical fitness.
There were no statistically significant differences in physical fitness between CFS patients and their controls. Nine CFS patients had a better fitness than their control. A negative relationship between physical fitness and fatigue was found in both groups. For CFS patients a negative correlation between fitness and impairment and a positive correlation between fitness and physical activity was found as well. Finally, it was found that more CFS patients than controls did not achieve a physiological limitation at maximal exercise.
Physical deconditioning does not seem a perpetuating factor in CFS.
American Journal of Physical Medicine & Rehabilitation:
January 2009 - Volume 88 - Issue 1 - pp 66-77
Literature Review: Aging
Rehabilitation for Hospital-Associated Deconditioning
Kortebein, Patrick MD
Kortebein P. Rehabilitation for hospital-associated deconditioning. Am J Phys Med Rehabil 2009;88:66-77
Functional decline associated with acute hospitalization may be termed hospital-associated deconditioning. This seems to be a relatively common problem, with older adults most frequently affected.
As the older adult population in the United States is projected to double by 2030, the incidence of this condition is likely to increase in a similar manner.
Despite the prevalence of hospital-associated deconditioning, there is a paucity of research examining the functional recovery and rehabilitation of these patients.
The available evidence to date indicates that acute inpatient rehabilitation seems to be effective for improving function in patients with hospital-associated deconditioning. However, there are no studies examining other rehabilitation programs or long-term outcomes after rehabilitation in this patient population.
The purpose of this article is to review the current state of knowledge regarding the rehabilitation of patients with hospital-associated deconditioning, including terminology, epidemiology, etiology, current rehabilitation recommendations, and future areas of research.
Occup Med (Lond). 2010 Jun;60(4):249-54.
Return to work following sickness absence due to infectious mononucleosis.
Koopmans PC, Bakhtali R, Katan AA, Groothoff JW, Roelen CA.
ArboNed Occupational Health Services, Statistics, Paterswoldseweg 808, PO Box 141, 9700 AC Groningen, The Netherlands. firstname.lastname@example.org
Epstein-Barr virus infectious mononucleosis among adults is notorious because of the prolonged incapacitating fatigue it causes.
To investigate the duration of sickness absence and return to work following infectious mononucleosis.
Episodes of sickness absence due to infectious mononucleosis were selected from an occupational health services register. The duration of sickness absence and return to work was assessed with Kaplan-Meier survival analysis.
Two thousand one hundred and thirty-seven episodes of absence due to infectious mononucleosis had a median duration of 91 days. Young employees (aged 15-24 years) had the highest return to work rates. Women had longer sickness absence than men. Employees working in small companies were absent longer than employees in large companies.
Occupational physicians should advise gradual return to work, starting 4 weeks after the onset of the illness, in order to prevent physical deconditioning and prolonged illness.
The answer is no methinks. Mind you I've only done the same as you probably and visited Google University and then only for a few minutes. Good questions though
The Nijmegen one isn't looking at performance on day 2 or day 3 compared to the controls, of course! (Because as far as they're concerned, PEM as we know it doesn't exist.)
And none of them account for most of the symptoms we get. The entire theory of deconditioning being a significant factor in ME/CFS is pretty ridiculous.
Thanks for those, Firestormm.
The Dutch researchers don't seem to have figured out that to find a causal role you need not just correlation but a time sequence too (Vercoulen's 1997 model paper makes causal inferences from a cross-sectional study - and is the basis for the current Dutch CBT method).
Also, I find it rather odd that some CFS patients were in better shape than healthy controls, makes me doubt the data.
This is just my own experience and belief... off topic. I think people can tell the difference when it's deconditioning-related fatigue. However I think if someone develops myalgias, they will almost definitely have pain from them, and fatigue. I think deconditioning can contribute to myalgias but they are different and often labelled wrong. IMO myalgias usually start from car accidents and other jarring injuries, but possibly from periods of inactivity, say having to lie in a hospital bed for weeks. IMO my myalgias worsened due to dehydration, poor nutrition, my attempts to compensate for OI, being forced to exercise, and pushing physically.
Another complication to this discussion comes for those of us who have Ehlers-Danlos syndrome. (I do) If I don't move regularly, I get a lot of pain. I am luckily able to do some anaerobic exercise without getting PEM, but if I weren't, I'd be in pain trouble.
This is a most interesting thread. I have not had a chance to read all the references but will bit by bit.
I believe any illness like ours has to cause a bit of deconditioning. However, it's vitally important to find out how much a person can tolerate, analyze the risks vs. benefits and this varies greatly among individuals. What can cause a flare one time will not another.
I know one person, bedbound, who would raise her arms and write the letters of the alphabet in the air.
It's next to impossible to know when something will drain you to the point where you feel like a vampire has sucked the life force out of you and this can be very frustrating.
I also worry about blood clots and don't know if the aspirin I take in the morning (when my IBS isn't flaring), will help that.
I was at my daughter's helping her with my grandkids for a few days, at least help as much as I could. (she finally GETS THIS!!!) It was a situation where any help was beneficial for my daughter. That was several weeks ago and I still haven't recovered. I spent most of this weekend in bed and a lot of pain. If someone offered me a million, even a billion dollars to get out of bed and do something simple (for normals) such as take a walk to the mailbox, I wouldn't have been able be to do it.
I did get short term counselling several years ago by a nurse/therapist who works with chronic illnesses. It's was nothing like what I hear about CBT and it was actually helpful. No blame just suggestions that have helped others in the same situation. I also had Physical Therapy by a therapist who specializes with FM/CFS/ME patients. I had warm water therapy which was of some benefit however I am usually too tired to actually go to the place.
It's the old catch 22 and exercise is not going to cure us (a big red raspberry to people who think CBT and GET will). I also think that increasing the level of exercise will not necessarily help for some of us. For some it will but I don't think any of us will end up running a marathon.
Okay, I'm ranting. It would be so nice if things were black or white wouldn't it?
In so many ways I am blessed that I finally have great health care. I didn't in the past and can understand other's frustration over this.
I broke my pelvis several years before I got CFS. I had to stay in bed for a few weeks, so I became deconditioned, but as soon as I recovered enough I started swimming as I had before my accident, gradually working up to a mile. The experience of being injured and deconditioned was not like the experience of illness with CFS.
To the original poster. I do think I remember seeing a study on exercise increasing pain tollerance at some point.
Im glad you aknowledged we are all different in your post. I myself have found that exercise which is causing only very short term issues.. over time impacts me longterm... seems to have me go gradually downhill. (its like a very slow slide at a rate of which isnt hardly noticable to me, until I start comparing the before and after of exercising a few months).
There is also the possibly we cant get the normal long term benefits from exercise. When I was able to exercise daily ... and did that for a few months. I had no noticable benefit in my fitness level at all (I couldnt run any further or longer then I could to start with). I couldnt actually do anything more then I was doing before, nor did I get any stronger.
It has also been found that our bodies respond physicologically differently to exercise then normal healthy peoples do eg a normal person exercising gets increased oxygen delivery to their muslces.. with ME/CFS.. the exercise response is impaired oxygen delivery. Exercise can actually damage our bodies.
Many of those long term benefits which exercise is supposed to do, arent accessable to many of us which many of us have found out, our bodies dont just respond "normally".
That's one of the things Ive thought about too before but find irronic.
Years ago I was in hospital for a week for my back and hence bedridden from that.. they fussed so much about me the risk of DVT due to that. That all seemed ridiculus seeing I'd been left bedridden due to ME in the past for 9mths with no doctor caring about me or things such as DVT, I used to often sleep up to 3 days without even waking.
I really wonder why we arent hearing about DVT issues in our community esp since there is also more hypercoagulation in our community we SHOULD have more of this happening then the normal population.. IF we are having less DVT.. why????? (maybe this would be worth studying if we are actually having abnormally low amounts)
*one study I think showed that up to 90%?? of us have hughes syndrome.
I agree completely. Pushing myself makes me feel like crap in so many ways. But briefly stretching muscles or doing a few leg lifts when I'm well rested feels GREAT. Same thing when I've had a brief remission and been able to use and build up muscles a bit ... it's sore, but compared to ME pain it just feels so so good.
Only an idiot doctor could confuse ME pain with deconditioning pain!
Thanks, I've seen that one quoted too, by someone hoping to imply that means deconditioining reduces pain tolerance, but the deconditioning version of that experiment doesn't seem to have been done. In any case that would change pain thresholds, not cause pain itself.
Haven't time to read all of this one Blue but it seems to have tried and defined the extent of 'deconditioning' in relation to the condition although it does conclude with a GET recommendation
I'll keep looking but I have a feeling it's one of those things that is just accepted. Long term illness especially one that leaves you hospital-bound and in bed leads to deconditioning. I think it's perhaps easier to think about what 'conditioning' is i.e. a healthy body able to and actively exercising. So 'exercise' would seem to be the common denominator - or lack of it.
If one is unable to move then things like e.g. atrophy can and do occur which will lead of course to the symptoms you describe.
Anyway, have to leave it there for now. Back to bed for me :headache:
Chronic fatigue syndrome: physical and cardiovascular deconditioning.
F De Lorenzo,
Z Kadziola and
V V Kakkar
+ Author Affiliations
Thrombosis Research Institute, London, UK.
We investigated whether chronic fatigue syndrome (CFS) patients have physical and/or cardiovascular de-conditioning, in 273 CFS patients and 72 healthy controls.
We used laboratory tests to assess haematological, biochemical, endocrinological and immunological systems. The cardiovascular system was assessed by echocardiography and carotid echography.
Body composition was determined by dual energy X-ray absorptiometry (DEXA). CFS patients had smaller left ventricular end systolic (p < 0.001) and diastolic (p = 0.008) dimensions but thinner posterior walls (p = 0.02) than corresponding values in healthy controls.
Left ventricular mass was also reduced in CFS patients (p = 0.006). Both maximum (p < 0.001) and minimum (p < 0.008) diameter of the carotid artery were smaller in CFS patients.
The laboratory screening tests showed significant differences in serum albumin (p = 0.05), phosphate (p = 0.02), HDL-cholesterol (p = 0.03), HDL:total cholesterol ratio (p = 0.01), triglycerides (p = 0.02), neutrophils (p = 0.01) and thyroid-stimulating hormone (p = 0.04) between CFS patients and controls.
Male CFS patients had an increased percentage of fat mass compared with healthy male subjects (p = 0.02).
This large group of CFS patients had evidence of physical and cardiovascular de-conditioning, suggesting that in these patients a graded exercise programme could lead to physical reconditioning and could increase their ability to perform physical activities.
It is very hard to differentiate between the effects of a serious illness/ medications and those of deconditioning.
So, this is an inherent problem of many of those studies.
The remedy for true deconditioning is indeed gradual exercise.
A young athletic person whose leg is put in a cast for a few weeks, will have what is called-disuse atrophy. It will be evident even by just looking at the difference between his legs.
Within a short while of gradually using those muscles again, there will be a buildup of the muscle mass, with return to the initial strength and endurance.
A child with Duchenne's muscular dystrophy who plays with a ball will gradually have more weakness of the dominant leg (the one he uses more). An MDX mouse (the animal model of DMD) will have a much more rapid deterioration if he is made to exercise regularly. Yet, there are certain types of exercise which will be beneficial for those children. So, those children need a special exercise plan, and can't just play ball.
quite likely, if a child with DMD breaks his leg and has it in a cast, he can't be treated with the same exercise regimen one would use with a normal healthy boy.
When exercise becomes a medication, it has to be used like a medication.
You have to specify the dose, route, duration, frequency and type. You have to assess improvement and possible worsening as well as unexpected side-effects.
Graded Exercise Training is a very vague and therefore a meaningless term.
It's like prescribing "antibiotics" without specifying which (penicillin or azithromycine), without saying how ( IV or oral), without saying how many times each day, without saying for how long and without knowing what to look for in order to assess if this treatment is effective or not, without knowing how to detect possible short or long term side effects. Or "deciding" that a rash can be a side effect, but joint pain can not.
You get the gain with no or minimal pain, only if you know what you are doing, know how to monitor and know when to stop. You get the pain without the gain if you don't.
Some form of exercise may or may not help preserve or possibly even improve strength and endurance in CFS. Other forms of exercise may make things worse. There may be differences between different groups of patients. Possibly certain nutritional supplements or symptomatic treatments can improve the ability to exercise in a beneficial way. But, no study has seriously looked into that as was done and is being done in DMD, ALS and other conditions and diseases.
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