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Is there any evidence that deconditioning alone causes pain and fatigue?

Discussion in 'General ME/CFS News' started by oceanblue, Apr 29, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Generally only limited fatigue in healthy individuals after long-term bed rest

    Given the arguments about deconditioning, I had expected to find frequent reports of fatigue in studies of healthy volunteers who took to their beds for many months. But it turns out there are very few mentions of fatigue, though it wasn't specifically studied. As this type of research was mainly undertaken to understand the negative effects on astronauts abilitiy to work in space, fatigue probably would have been reported if it had been a signifcant issue.

    One very long-term study (n=5, 5.5-7 months) did comment that after bed rest:
    which reinforces the impression that fatigue is a minor side-effect even after spending 6 months in bed.

    An even longer term study (n=3, 7-8.5 months) did not:
    so perhaps spending well more than 7 months in bed can cause significant fatigue.

    Again, the evidence suggests that the level of resting undertaken by CFS patients regularly able to attend clinics as outpatients is unlikely to cause significant fatigue through deconditioning.

    For completeness, I did find one significant meantion of fatitgue was in a shorter, 70-day study. There were 15 subjects spread over 5 series (experimental groups); Series 1 had no 'countermeasures' such as exercise, so should lead to the most deconditioning - and there was no mention of fatigue.

    There were mentions of fatigue after the bed rest for series II, and during for series III and IV but no details are given of the countermeasures. Possibly the countermeasures contributed to the fatigue, particularly as other, much longer, bed rest studies did not report fatigue:
    Aside from these studies I couldn't find any mention of fatigue at all in the bed rest literature (as searched on google), so I assume it isn't a significant issue.
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  2. Valentijn

    Valentijn Activity Level: 3

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    Nice finds :)

    Hrm, maybe I should try 6 months of bed rest to get my fatigue down to "minor" :p
  3. Esther12

    Esther12 Senior Member

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    While I think that that misleading emphasis given to the role of deconditioning in CFS is quackery that has caused real harm to patients, I thought I'd still have a go at imagining a defence of it here:

    'We know that most people are able to rapidly recover from deconditioning with few problems. But most people do not get CFS. Following on from glandular fever, we know that, at most, 10% of people suffer from CFS. Looking at studies of small numbers of healthy patients who take part in these deconditioning studies is unlikely to stumble upon the small number of people for whom (for genetic, neurological, immune and unknown reasons) deconditioning results in serious and long term problems. The fatigue which results from deconditioning in these studies is also likely to be interpreted as far less threatening by patients, as it is known to result from the deconditioning they have just induced in themselves, and not result in fear of ongoing viral infection or some other unknown biological threat. It would indeed be foolish to claim that CFS could be consistently induced purely by deconditioning, but that is not what any psychosocial CFS researcher would say.'

    I actually found the studies of deconditioning in other conditions with fatigue particularly interesting (eg: post-stroke). There seemed to be the same desire to emphasise the role of deconditioning, despite the apparent evidence to the contrary. I've read some POTS papers which seem to try to dismiss the role of certain viral infections in favour of deconditioning alone, despite the evidence that these autonomic problems are triggered by certain viral infections rather than the deconditioning which results from them. Seems like a widespread cognitive distortion.
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  4. Don Quichotte

    Don Quichotte Don Quichotte

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    I think this is a very good point. ( I wonder if those are the same 10% that have worsening of cardiovascular risk factors with exercise, as opposed to most of the population).

    In general 5-10% of the patient population doesn't fit the common knowledge. (which, being fair does apply to 80-90% of the people). This may be due to relatively uncommon polymorphisms, previous enviromental exposure etc.
    Most reasonable physicians are quite capable of taking care of the vast majority of their patients.
    That is why it is relatively easy for them to dismiss those who do not fit, or even worse try to fit them into the Procrustean bed of what they know and works for most of their patients.

    that is why patients (who do not fit the common paradigms) have to be proactive and refuse to be treated like those who do fit those paradigms. This sometimes requires finding a more open-minded physician if you hit a brick wall with the one taking care of you. (it has nothing to do with how nice or compassionate that person is).
    It took me a long time (as a physician) to understand that. So, I am sure that it is much harder for patients with no previous medical training.
  5. floydguy

    floydguy Senior Member

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    Yes, the common mantra is generally summed up with "when in Central Park and you hear hoofbeats, think horses, not zebras". This works well when you're a horse but when you are that stray zebra you're out of luck.
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  6. oceanblue

    oceanblue Senior Member

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    Perhaps I should have been clearer that I think these bed rest studies tackle just one part of the deconditioning argument; not that bed rest studies should be expected to produce CFS in healthy individuals.

    The argument for deconditioning perpetuating fatigue etc in CFS and other conditions is that rest leads quickly leads to deconditioning and fatigue - in everyone, not just susceptible individuals (it's the maladaptive response of the naughty 10% that causes problems). It's striking that they never cite evidence for the claims of either deconditioning or the accompanying fatigue. The evidence from these studies is that extended bed rest doesn't cause substantial deconditioning, or fatigue or fatigability. These may become a modest problem after 6 months of bed rest, but that doens't apply to CFS patients in outpatient clinics.

    Agreed.
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  7. Don Quichotte

    Don Quichotte Don Quichotte

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    and even more so if you have stripes of unusual colors. zebra_001.jpg
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  8. oceanblue

    oceanblue Senior Member

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    Nice zebras, Don Q

    Here's something that contradicts the picture I've painted about bed rest:
    Physiological Basis of Fatigue : American Journal of Physical Medicine & Rehabilitation, 2007
    Unfortunately I wasn't able to access full texts - or even abstracts - for most of the references. What I can say is that:
    1. The authors have at the very least ignored many papers contradicting their strong claim
    2. Other references from the same paper that I could access only weakly supported the authors claims in other areas, making me rather sceptical of the claims about the VO2 max references.
    So I'm not convinced but include this for completeness
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  9. Don Quichotte

    Don Quichotte Don Quichotte

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    Disuse atrophy is the result of total disuse of a certain muscle or muscle group.

    It is a well-known phenomenon and one of the causes of difficulties in weaning patients recieving mechanical ventilation. There is indeed a deterioration in the muscle's endurance and strength with total disuse.

    But, this is not a linear effects. Therefore this does not mean that decreased use of the muscles leads to similar results or that the more you use your muscles the stronger they get.

    Also, there are zebras and colorful zebras in which using the muscles in what would be considered a normal way, paradoxically leads to decreased strength and endurance.

    Such zebras have to constantly find the optimal balance for not doing too little (to avoid disuse atrophy) and not doing too much (to avoid damage caused by exercise).

    When zebras and unusual zebras are recognized as such they can do very well.
    The problem arises when they are seen as striped horses instead.
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  10. oceanblue

    oceanblue Senior Member

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    Disability-Associated Deconditioning Syndrome, Rimmer 2012

    A recent paper (link above to its own thread) makes the case for deconditioning being a generic problem in neuromuscular disorders. It also serves as a useful summary of generally held view that inactivity leads to deconditioning which leads to more inactivity in a vicious circle. What isn't clear - due to a lack of evidence - is how much deconditioning actually occurs and how much it contributes to the inactivity. Similarly I have seen no good evidence of a vicious cycle, though it seems plausible and I'd be surprised if it wasn't true to some extent.

    I like the fact that this new paper makes regular use of words like 'hypothesis' and 'propose' rather than presenting the model as fact. More details in the thread.

    A good summary of the proposed vicious cycle was included in an earlier paper by the same author:
    deconcycle.jpg
    Reproduced with permission. The full original article with diagram (fig 1) can be found here.

    What this paper makes clear for me is that the idea of deconditioning playing a key role in perpetuating CFS is a specific example of a widely held view of vicious cycles. Though in CFS the role of deconditioning has been elevated to a primary role, at least in the GET model.
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  11. GcMAF Australia

    GcMAF Australia Senior Member

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  12. Valentijn

    Valentijn Activity Level: 3

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    There's a lot of people saying a lot of stupid things about the need to exercise. Fortunately the guy at that link doesn't even seem to be talking about ME/CFS. Or is he suggesting that diet, exercise, and his special massage techniques cure every "imbalance", including complex neuroimmune disease? Maybe even AIDS and cancer, for that matter?
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  13. GcMAF Australia

    GcMAF Australia Senior Member

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    CFS is mentioned in the "Understand" page.quite a bit of background. I have known Steve for nearly 20 years. I have cured a squameous basal cell carcinoma using a variation of his technique, A lot of research is coming out about the relatedness of diseases & inflammation, massage and some disease has been around for 50 years.Why does GcMAF treat cancer and viral infections etc ? Because there is a link, immunity. there is also some research on using a CFS treatment for paper, I think an antiviral treatment, in the US but I dont remember the researcher

    I did say appropriate exercise, I have 20 years experience with actin research, actin is a muscle protein. It also has many other roles. Who knows what the next 10 years are going to reveal. Companies spent billions working on ulcers, then an Australian found it could be cured by antibiotics.
    I have a working hypothesis, micro-chronic fatigue, That small areas of the body can be affected by some problem, then additional events can cause diseases. This is just a theory, but that is OK. It opens up new thoughts. A lot of diseases are autoimmune, or inflammatory. Diabetes, cancer etc. That allows for some common treatment.
  14. Valentijn

    Valentijn Activity Level: 3

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    Ahhh, right. It all comes down to pelvic imbalance. Thanks :p
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  15. GcMAF Australia

    GcMAF Australia Senior Member

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    Sorry this quote is a bit long:but illustrates the connection of inflammation/autoimmunity/immune dysfunction with disease

    http://debortgjemte.com/2012/06/07/the-drug/
    2004: Patient zero

    Anne Katrine walks into the Cancer Department at Haukeland University Hospital in Bergen in 2004 to get treatment against the lymphoma the doctors discovered one year earlier. After four rounds of chemotherapy the cancer seemed to be beaten, but suddenly it came back and she is in for her second treatment regimen.
    Anne Katrine also has ME/CFS since she suddenly fell ill with mononucleosis in 1997. For several years she had mostly been housebound with muscle pain, problems with sleep and great cognitive difficulties. An overwhelming fatigue and malaise has made her unable to leave the house for more than short periods of time.
    Five weeks after starting the new treatment against lymphoma, something unexpected happens. Suddenly she notices a marked improvement in all the ME/CFS symptoms that she has endured for more than seven years. She has never before experienced anything like this. Her teenage son had one time told her that he was not sure if he could manage to live with someone as sick as his mother. Now, they were able to go to Turkey together for the holidays.
    But suddenly it all comes back. The headache, the aching muscles, the cognitive decline and the devastating fatigue and malaise. Back to scratch.
    “When you had cancer, mom, we had the best dinners ever,” Anne Katrines daughter tells her after the relapse.
    Sitting in his office at Haukeland University Hospital, cancer specialist Øystein Fluge scratches the back of his head, puzzled. What really happened to his patient Anne Katrine?
    For years to come he cannot forget what he saw during these months in 2004.
    2009: Pioneering

    In October 2009 I sat in a small office at Haukeland University Hospital in Bergen, a city on the west coast of Norway. I remember it well. The two doctors enthusiastic telling of their surprising tale. I was in the very beginning of researching my book about ME/CFS when I came across a small pilot study from the very same people I was meeting for the first time this day.
    Even then, without the extensive knowledge about ME/CFS that I have now, I remember thinking: If this turns out to be true, it will change everything.
    It was a beautiful sunny day, with snow covering the peaks around Bergen. On my way to the meeting with professor Olav Mella and doctor Øystein Fluge, I saw signs pointing the public to the mass vaccinations against the swine flu. In a few weeks Norwegian authorities had spent more money on buying vaccines than everything the American government had spent on ME/CFS research for the last 25 years.
    I remember seeing that as a telling comparison pointing towards a still grim future for ME/CFS. But now, I was wondering if these two doctors story could be a turning point. After 25 years of controversies, lack of funding, maltreatment, ridicule and dashed hopes. Could this be the game changer?
    Dr Fluge was talking about Anne Katrines remarkable story of recovery from most of her ME/CFS symptoms, and after those months she had never let Fluge off the hook. She begged him to find out what had happened. And in the end, Fluge and Olav Mella, the head of the Cancer Departement at the hospital, decides to give it a try even though they have never before worked with ME/CFS, barely heard of it.
    “Our starting point was: Could this be an autoimmune disease? And if so, could it be that it was methotrexate in Anne Katrines treatment that was working on her ME/CFS symptoms”, said Fluge.
    Methotrexate is a medication which dampens the immune response. It is used in large doses in some cancer treatments, but it is also used in smaller doses against different autoimmune diseases, for example rheumatoid arthritis. Anne Katrine had gone through three different courses of cancer treatment, but only with one of them did she experience a near resolution of her ME/CFS symptoms. In that treatment she got methotrexate, something she did not get during the other treatments.
    “We could not know if this hypothesis was right, but our idea was to try to treat CFS with Rituximab, which is a medication that works directly on the B-cells in the immune system,” said Fluge.
    Like methotrexate, Rituximab is a medication that dampens the immune response, but through a different mechanism. It basically wipes the B-cells out for a few months before they slowly grow back. Both of these medications are used in the treatment of cancer and autoimmune diseases. In 2007, Fluge and Mella decided to do a small pilot study on three ME/CFS patients. One of the three patients they contacted was Svein.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks for posting this here, GcMAF Australia,

    I'd like to add some rambling questions and bounce them off you.

    Might some of these issues be relevant in the discussion of GcMAF therapy as well? I guess one question is whether Rituximab is lowering of inflammation through wiping out B-cells themselves (can you explain how B-cells are related to inflammation?), or whether the effect of lowering inflammation is from killing whatever might be infecting B-cells--along with killing the B cells?

    My understanding (which may be wrong :confused:) is that infected B-cells are "marked" and that activated macrophages will attack them. Is it this "attack" itself that causes the inflammation we see with GcMAF therapy, or could it also be that the continuously over-activated immune system that is often seen in ME/CFS, is the cause of ongoing, high levels of inflammation...and maybe the "attack" action of macrophages adds to this inflammation?

    Also, in one of the discussions about the MAF yogurts, some of us were wondering about the relation between inflammation, histamine and an activated immune system...any thoughts here?

    Sorry for the disjointed questions, but that is the best I can do at the moment.

    Best wishes,
    Sushi
  17. GcMAF Australia

    GcMAF Australia Senior Member

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    Excellent questions Sushi.
    Any CFS treatment must address the problem with infection?inflammation
    A good link for general inflammation is http://en.wikipedia.org/wiki/Inflammation (sorry will have to cut and paste, it is quite detailed )
    As far as I know Rituximab wipes out B cells and this lowers inflammation- through B cell -T cell interaction
    It is not that the B cells re necessarilly infected, they are being stimulated, lets say by an antigen of infection (bacteria/virus etc even glutein) they multiply. Then they interact with T cells which produce inflammation.
    But the whole thing has got out of control, like a reactor going into meltdown, There is some imbalance that is a bit unclear, too much talk and no action so the infection is not dealt with. With CFS when there is some action against say microbes then there is a big expansion of toxins/antigens, This then adds fuel to the fire and can get an inflamatory/cytokine storm. So people feel hey I feel extra bad. Sort of like someone with hayfever walking into a field of rye grass.
    Hay fever people have an "activated or hyper active" immune system Histamine (http://en.wikipedia.org/wiki/Histamine) is stored in say mast cells and in hay fever is released by IgE antibody complexed with the antigen. And you get a masive inflammation reaction. Sort of like 4th Of July!!

    A recent review abstract here:-
    Postgrad Med J. 2012 Apr;88(1038):226-33. Epub 2012 Feb 10.
    A B cell explanation for autoimmune disease: the forbidden clone returns.
    McQueen F. Department of Molecular Medicine and Pathology, University of Auckland, 85 Park Road, Grafton, Auckland, New Zealand. f.mcqueen@auckland.ac.nz
    Abstract

    More than 60 years ago, Burnet first proposed the 'forbidden clone' hypothesis postulating that autoimmune disease arises as a result of persistence of self-reactive clones of lymphocytes that should have been deleted via immune tolerance. These autoreactive clones could effect immune-mediated end-organ damage via peripheral self-antigen recognition. Recent evidence that stretches across the boundaries of many medical specialties supports this proposal, implicating a B cell precursor as the culprit. The success of B cell depleting therapy in rheumatoid arthritis, anti-neutrophil cytoplasmic antibodies (ANCA) associated vasculitis, polymyositis, lupus and autoimmune diseases as diverse as multiple sclerosis and idiopathic thrombocytopenic purpura supports this proposal. Clonality of B cells and plasma cells has been described in a number of autoimmune disorders and the presence of autoantibodies, which may arise years before the onset of clinical disease, supports the notion of autoreactivity within the B cell lineage. T cell activation within the end-organ would be predicted by cognate B-T cell interactions and resultant tissue inflammation and destruction could produce diverse clinical manifestations dictated by the original specificity of the autoimmune B cell.

    I have just left your bit about "infected B" cells for the time.
    Hope this helps, let me know

    Regards to all
    GcMAF
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks! Lots to think about here.

    Best,
    Sushi
  19. oceanblue

    oceanblue Senior Member

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    Deconditioning can't account for mental fatigue and cognitive problems

    Bed rest studies appear to show that even long-term deconditioning (up to 6 months bed rest) does not cause substantial physical fatigue, and certainly nothing comparable with CFS fatigue. The available evidence also suggests that long-term bed rest in healthy volunteers doesn't cause major problems with cognitive functions or mental fatigue either.

    A 2009 review quoted earlier of 17 studies (250 subjects total, 7-70 days bed rest) concluded that:
    Studies published since then (that I've found) continue the trend of no consistent evidence of cognitive problems.
    • A 2009 study by Lipnicki, author of the review above, did find some evidence among 24 males after 50 days of bed rest:
    The Iowa Gambling Task, widely used as a measure of decision making, gave much worse results during bed rest than before, or after recovery. However, the results are questionable because of inconsistencies in methodology. [Where subjects first took the Task before bed rest, there was no difference in their later Task scores at 51 days of bed rest. Yet when other subjects first took the test during bed rest, there later Task scores after recovery (90 days on) were much better ie there was a strong order effect. The authors concluded that Bed Rest prevented learning effects, but this is questionable].​

    The three other measures of cognition in the study were not significantly affected by bed rest.​

    • Meanwhile, another 2009 study (13 subject, 60-90 days bed rest) concluded that:
    Just to finish, I found an NASA study from 1998 assessing cognitive function that found:
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  20. biophile

    biophile Places I'd rather be.

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    Good work oceanblue. Did these studies account for differences in cognitive activity during bed rest? I do not think the CBM proponents attribute all the subjective cognitive difficulties in CFS to physical deconditioning, but also mental deconditioning (as well as other factors such as anxiety and sleep / circadian rhythm disturbances.

    The PACE manuals claim that:

    "Prolonged rest deprives people of intellectual stimulation and has a dulling effect on intellectual activity. [...] Excessive rest may even affect the way our brain cells make connections with each other. [...] This may impair concentration, memory, and the ability to find the correct word. [...] GET has been shown to improve mental functioning."
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