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Normal muscle strength and fatiguability in patients with effort syndromes, 1988, Stokes at al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by chrisb, Jul 3, 2020.

  1. chrisb

    chrisb Senior Member (Voting Rights)

    I realise that this is hardly news but thought it worth a reread as Chalder and Butler in a 1989 MEA newsletter considered it one of the two papers that should be read for an understanding of their approach. The other was the better known 1988 study by Straus.

    Normal muscle strength and fatigability in patients with effort syndromes

    Maria J Stokes, Robert G Cooper, Richard H T Edwards


    Although this seems to be often referred to, including by Edwards, it was a study on "effort syndromes"


    To examine fatigue mechanisms in an unselected series of patients with excess fatigue ("effort syndromes") their muscle function was compared with that of normal subjects...


    "Effort syndrome" is an ill defined diagnostic term embracing various disorders including breathlessness and effort intolerance,' Da Costa's syndrome,2 vasoregulatory asthenia and neurasthenia,34 and postviral fatigue syndromes,5 including myalgic encephalomyelitis6 (Royal Free disease7). There is no reliable, objective method for confirming the diagnosis, which must therefore rely on clinical criteria alone. The most common symptoms are weakness and excessive fatigue, which are often worse after exercise.4...

    Subjects and methods

    Thirty patients aged 21-50 (mean 36-5 years; 18 women, 12 men) and 20 normal subjects aged 22-50 (mean 30 5 years; 7 women and 13 men) were studied. The patients had a history of excessive general and muscular fatigue over one to 19 years but no evidence of neuromuscular disease on clinical, biochemical, histological, or histochemical examinations. Their functional capacity was hampered severely, to the extent that their lives were greatly disrupted. Not all patients had a history of viral infection related to the onset of symptoms...


    ...Patients are often told simply to rest, but resting may aggravate the symptoms by causing cardiovascular unfitness. The patients with effort syndromes in this study had muscle that responded normally to exercise even though they experienced fatigue prematurely. This evidence can be used to reassure patients that it is safe to exercise, even though exercising may make them feel worse. Anxiety about tachycardia and breathlessness can therefore be allayed, and the vicious cycle of unfitness and fatigue4 can be broken by carefully and gradually increasing the amount of activity.

    For patients who either do not respond to or are unwilling to try this approach to treatment further consideration of psychological influences may be necessary. Psychological factors often complicate effort syndromes, particularly if the patient has suffered from lack of understanding from family, friends, and medical practitioners. Such psychological problems should be identified by careful assessment and treated. Whatever the causes of effort syndromes, a coping strategy is required while there is no specific treatment. Behavioural therapy using the principles for managing chronic pain may prove useful for increasing tolerance to exercise. An integrated approach giving advice on exercise as well as psychological support" seems most helpful in returning these patients to normal functioning.

    Apparently this is what legitimised the whole project
    Last edited: Jul 3, 2020
  2. Sean

    Sean Senior Member (Voting Rights)

    Don't you just love the certainty. Way back in 1988.

    Hutan, MEMarge, alktipping and 5 others like this.
  3. chrisb

    chrisb Senior Member (Voting Rights)

    Judging by some of Edward's contributions to the CIBA conference it may have been a quasi-religious experience. I have yet to discover whether those contributions were entirely post prandial.
  4. chrisb

    chrisb Senior Member (Voting Rights)

    Am I wrong in thinking that the argument is that, as there is no abnormality of peripheral muscle function, it is safe to undertake exercise?

    That is an astonishing claim. And absurd.
    Shadrach Loom, Arvo, Lidia and 9 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Obviously, if you lightly press your foot on the ice and it doesn't break, that means it is 100% safe to jump on it as hard as possible from a helicopter and in the middle of the lake. Obviously.

    It's not surprising anymore but shocking just how reckless and irresponsible some doctors are. They don't seem to consider the mere possibility of not being 100% correct, once committed it's almost a sin to doubt the perfection of their opinions, they will hold those beliefs until stopped by an external force.
    MEMarge, Mij, Sean and 4 others like this.
  6. chrisb

    chrisb Senior Member (Voting Rights)

    I think it is instructive to se the response by Mary Sullivan in the Autumn 1989 MEA Newsletter to the article by Chalder and Butler and in particular the issues surrounding the Stokes et al paper. This broadens understanding of the matters as they were viewed at the time-before establishment of the Oxford Criteria. I trust that Mary Sullivan and the MEA have no objection to being quoted at length.

    The second paper suggested as recommended reading for patients undergoing behavioural therapy i.e. Stokes et al, includes ME as a form of Effort Syndrome which can be best alleviated by exercise and psychological counselling! In fact the authors conclude with "An integrated approach giving advice on exercise as well as psychological support seems most helpful in returning these patients to normal functioning". I know this to be untrue since I was one of the patients included in the study and despite such an approach remain chronically ill.

    At the beginning of the programme a heterogeneous group of patients (ie not all suffering from ME) were issued with exercise guidelines which listed walking, especially hill climbing, climbing stairs, sport and calisthenics. The advice sheet concluded with encouragement not to give up hope since "You can cure your Effort Syndrome if you really want to". I undertook the exercise programme thinking that if it proved beneficial, Eureka!-I'd have my life back; if not, then at least I would have demonstrated that such an approach is not universally appropriate for people with ME. In trying to do a little more every day I gradually exceeded the limits (imposed by my illness) on my ability to undertake physical activity. The effects became cumulative; the exercise not only increased my muscle fatigue and pain but led to an exacerbation of the "flu-like symptoms, chronic pharyngitis, low grade fevers and cerebral dysfunction. At the end of the trial period I was very much worse! Despite such an obvious deterioration I was repeatedly reassured that there was nothing wrong with my muscles and that "the virus had gone away". This was despite a positive VP1 test, serological evidence of reactivated EBV infection, subtle immunological abnormalities and an abnormal single fibre EMG. However these tests wre done at other centres and were clearly not considered to be relevant by the team in question.

    Stokes et al used a technique of electrical stimulation of the thumb muscle to demonstrate that the muscles of their patients were "normal". However they did postulate that a viral infection in the muscle could have resulted in afferent activity (nerve impulses from muscle to brain impairing muscle performance. They maintain that continuing muscle fatigue cold therefore be a learned response to initial fatigue induced by a virus that is no longer present.. What conclusive evidence is there to suggest that the virus has in fact gone away?....
    . In addition if the muscle fatigue of ME is primarily the result of a vicious circle of inactivity, muscle disuse, fatigue on exercise etc, how could one explain the phenomenon of remission after a long period of relapse which is so often observed in ME sufferers? If the relapse resulted in muscle disuse atrophy to an extent that precluded normal function it would not be possible for the patient suddenly to feel well again and resume normal activities.

    It is important that ME sufferers do undertake physical activity within the limits imposed by the illness in order to prevent muscle wasting....

    It does feel strange that he we are, thirty one years later, having to make the same points and ask the same questions. There must be something about the system which makes some people think it ain't broke. It must benefit some.

    Castles in the air.
    Hutan, alktipping, Arvo and 12 others like this.
  7. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    And that right there is why so many patients thought that PACE would finally put the argument to bed one way or the other. Of course, we naively thought that the researchers knew what they were doing and would act in good faith.....
    alktipping, JoanneS, EzzieD and 3 others like this.
  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    The mistake that Stokes/Edwards makes is the assumption that central and peripheral aspects aren't coupled together. We cannot assume that the force generated by a short electrically induced supramaximal twitch can be maintained. Hence coupling between peripheral afferents and spinal feedback to make the force output more predictable to the brain.

    Pretending that these systems are separate is just another form of dualism.
    Last edited: Jul 7, 2020
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  9. chrisb

    chrisb Senior Member (Voting Rights)

    This looks to be a paper which will never stop giving. Surprising that it should have been chosen by Chalder and Butler, presumably with the approval of Wessely and David, to explain GET for CFS.

    We thank the participants in this study and are grateful for support from the Muscular Dystrophy Group of Great Britain and Northern Ireland and from ICI Pharmaceuticals (UK).

    What on earth is that about? It does not give confidence in the grouping.

    Anxiety about tachycardia and breathlessness can therefore be allayed, and the vicious cycle of unfitness and fatigue4 can be broken by carefully and gradually increasing the amount of activity.

    For patients who either do not respond to or are unwilling to try this approach to treatment further consideration of psychological influences may be necessary. Psychological factors often complicate effort syndromes, particularly if the patient has suffered from lack of understanding from family, friends, and medical practitioners

    Abnormal Illness Behaviour as per Pilowski. What do they mean by can? Have people never heard of Hume and the perils of inductive reasoning?

    Behavioural therapy using the principles for managing chronic pain may prove useful for increasing tolerance to exercise. An integrated approach giving advice on exercise as well as psychological support" seems most helpful in returning these patients to normal functioning.

    These conclusions seem wholly unsupported by evidence. One gets the impression from the piece by Sullivan that there were other things going on, but they are not reported and no conclusions can be drawn.

    I will post more about "effort syndrome" shortly. Let that be a warning.
  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)


    It's surprising when neurologists talk about "effort" in this way, yet they have no idea what it is. I mean there is over 150 years of research on it (back to Helmholtz's experiments), and they haven't bothered to talk to exercise physiologists either. Instead they have decided to ignore all of that to simply make something up that suits their flawed preconceptions.
    alktipping, Sean, Philipp and 6 others like this.
  11. chrisb

    chrisb Senior Member (Voting Rights)

    I think we may have been "sold a dummy". I recall previous discussions of where the idea of exercise for ME originated, given Ramsay's firm views on the subject. My recollection is that it was thought to have been used in fibromyalgia and then transferred to CFS, by analogy. This paper on Effort Syndrome provides the alternative and probably correct interpretation.

    I previously read the pages on Effort Syndrome in the SW, MH, MS book Chronic Fatigue and its syndromes but thought that they were of historical interest only. This view seems reasonable when one reads:

    There have been several studies looking at muscle strength and performance in CFS. Stokes et al examined 30 patients with excessive fatigue, present for between 1 and 19 years, associated with severe morbidity and functional impairment. (p162).

    It would have assisted in the avoidance of confusion if reference had been made to the fact that the paper claimed only to be a study of "Effort Syndrome". This appears to be official recognition that Effort Syndrome is within the Oxford Criteria. So let us look at their relevant sub-chapter (p313) which, curiously, lies within a chapter entitled Other Chronic Fatigue Syndromes including for example Fibromyalgia, IBS, Chronic brucellosis and chronic Lyme disease, and Burnout. Is it Chronic Fatigue Syndrome or Another Chronic Fatigue Syndrome?

    14.4 Effort Syndrome (Da Costa's syndrome, neurocirculatory asthenia, soldier's heart, mitral valve prolapse)

    IBS may be the commonest fatigue syndrome, but effort syndrome has the most distinguished history.......It was that condition of ill-health in which the symptoms and signs produced in normal subjects by excessive exercise are called forth in patients by lesser amounts and in which no definite physical signs of structural disease are anywhere discovered. A pattern of frequent relapse often associated with minor exertion was also common.

    This will not do at all to describe ME, or probably even CFS. Don't we say that it is like nothing experienced by a healthy person?

    The change in title (from Soldier's heart to Effort Syndrome) reflected an increasing consensus that symptoms were the result of an exaggerated physiological response to exercise. Three major causes were identified. The first were common infections and febrile illnesses, effort syndrome was thus an acquired neurasthenia. The second were constitutional factors such as weakness or bad nerves, sometimes simplified as constitutional neurasthenia. The third was the stress of active service...

    In 1916 The British Association for the Advancement of Science issued an influential report on the condition and many others followed. The best treatments involved some form of graded activity and/or exercise - rest was was originally tried, but as Sir Thomas Lewis wrote "rest in bed has been found to be detrimental rather than beneficial.

    It rather looks as though the obsession with exercise and denial of rest derives from study of the wartime cases, which may or may not be relevant to the post infectious case.

    One can only hope that Stokes et al were being ironic when they stated

    A recent review of the postviral fatigue syndrome highlighted the flaws in previous studies-namely, the failure to define and study fatigue accurately, poor assessment of psychological features, and the use of inappropriate control groups.'

    It is hard to see how use of a term with four synonyms and three sub-categories assists.

    It is abundantly clear that this paper cannot form an adequate basis for the use of GET and CBT in ME. And never could have. If only we hah had readt access to the papers in 1989.
    alktipping, Mithriel, Sean and 6 others like this.
  12. Philipp

    Philipp Senior Member (Voting Rights)

    Holy nonsequitur batman, I realize people who are not exercise physiologists tend to occasionally oversimplify things from that are but this is on another level. It is a pet peeve of mine when people in the broader medical community think everything related to training is obviously trivial, sorry if this may come off as rant-y or pedantic but we are talking entry-level science that is completely useless due to the most common of mistakes here.

    The term may be a bit colloquial in practical use, but generally muscular fatigueability does refer to the ability to resist changes through repeated use during a given timeframe. If one is reporting 'excessive muscular fatigue' without evidence of disease it is weird since in context it pretty much has to arise from a pathologic problem - high level of fatigueability is expected in untrained individuals and does normally not have any effect on their day-to-day lives. The majority of the western office population is essentially untrained and we do not see them having trouble using computers. The only scientific conclusion I could possibly think of here is that the measurements did not capture whatever was going on (or expectations on how muscle function should be that are way off-base).

    I've allowed myself to bold the key sentence in order to highlight precisely where I'd say everything breaks down.
    First of all, cardiovascular unfitness to the point of being disabled in daily living situations does not normally arise even from prolonged bed-rest. There is a difference between being able to meet metabolic demands of daily living and sports. Many many many people cannot walk up a flight of stairs without being out of breath who are completely fine going about their lives in general.

    A muscle that has an apparently normal response to exercise (which is nontrivial to capture by the way, with training stimuli we can trigger remodeling effects that last days and possibly weeks which are harder to predict than one would think) does in no way, shape or form allow for the conclusion that a human who is reporting symptoms can safely exercise.

    Apart from the lack of evidence that it is beneficial or needed to do so in a given patient population, by that reasoning you could tell anyone without a multiple sclerosis type of disease that training is fine for them. Wanna go for a run with a broken hip? Yeah sure, go ahead, your muscles are fine so you're good to go.

    Even ignoring that there are quite a few different exercise modalities which all could have different effects, if something makes you feel worse via aggravating a medical condition you might have it is common sense to at least require a solid evidence base before churning out overly broad recommendations.

    If this is really all they did it is beyond incompetent. No adult human being could possibly be this stupid. If the quoted part above is true I refuse to believe this is anything but malicious intent. Did they even test for different metabolic demands or was it literally just 'hurr durr muscle responds to stimulation so it is working derp'? Theoretically, a muscle can respond apparently fine to external stimulation but not meet demands during prolonged aerobic activity, not function properly under anaerobic conditions, the motor unit could have trouble being innervated for whatever reason which one would not see when using the external stimulation shortcut - and this is just the first batch of things that immediately come to mind while completely ignoring any systemic effects.

    Either absolutely no one in the field who recommended exercise based on this paper alone has read it, or worse, they have read it and did not see the jumps in logic as problematic.

    Edit: I looked through the paper and no, the thumb muscle stimulation was not everything they did but, in my opinion, that does not save the purported conclusions. The jump from what was measured to what was concluded is gigantic.
    I would also argue that the way those measurements were taken ignores what we today would agree on as important features of ME, but this may more be to put the results into context than a failure of the paper per se.

    I will not quote the entire paper as I go through it from the top as it is not overly long anyway and am unfortunately unfamiliar with the interpolation technique so I cannot comment on these parts competently.

    First of all, I think the slant of the paper is a bit unscientific.
    It is stated confidently that bouts of tachykardia during everyday activities stem from poor cardiovascular fitness which is either tautological or unproven in this context (per definition, not going into tachykardia would constitute 'CV fitness' but the way it is worded the more colloquial definition of fitness was probably intended).
    Abnormal electrophysiological activity is quoted as occuring through atrophy via disuse as well - again, actual relevant atrophy of muscle tissue requires prolonged and severe disuse when we are not talking about losing glycogen and water storage, so realistically we are talking more about motor units being less efficiently used in conjunction after a period of disuse. We need a lot of tissue atrophy for it to be more relevant than how the tissue is used.
    I realize this may be a bit pedantic again and time constraints when writing things up may make it uncomfortable to type out the entire history of every word used (apart from making everything virtually unreadable), but clear thinking tends to lead to clear writing.

    Then the definition of fatigue in the context of exercise physiology [this part is inaccurate, see below] is given and that is all fine and well, but we run into the problem we had with the psychiatric concept of 'recovery' - central fatigue here means mostly lessened neural drive. In the sense that one can measure less neural output. It has no real bearing on cognitive or affective states a person would notice. Peripheral fatigue is usually how well muscles respond to stimuli and gets a bit muddled all the time.

    Edit2: Please have a look at post#14 for clarification, I did not even know there was a difference between neurological and other kinds of definitions here. I assumed it was basically the same thing using different words.

    Not finding fatigue in this context has absolutely no bearing on people feeling tired or brainfogged or exhausted, these phenomena really just tell you how hard it is to push something at a given moment. Increased peripheral fatigue would usually mean the CNS needs to increase its output to innervate motor units and this can subsequently lead to feeling a bit off if one tries to do that a lot as it has effects on neurotransmitter availability but that is getting off-topic - the point is, you can bench press to failure repeatedly and induce peripheral and central fatigue without having anything that resembles PEM. I can personally attest to this as I have done this pre and post ME onset and it just feels differently, assuming my experiences can be extrapolated (which, again, is not necessarily the case as I may be muddling something, misremembering etc).

    Not making all of this very, very clear is the same as not stating psychiatric recovery is meant to communicate 'you are recovered as far as was possible using our approach' - it may be fine when communicating within a field, it needs to be made very clear when talking to a laypopulation. I imagine this aspect has not been harped on too much when this very paper was cited?

    I cannot see anything that remotely resembles coherent information on how probands were selected. It is quoted that they had a history of excessive general fatigue (there it is again, here fatigue doesn't mean central/peripheral fatigue at all but the colloquial usage would be required?) but not very much beyond that is mentioned apart from not finding much wrong via traditional testing. Again, this may be fine when one is looking for points to start more research but it makes extrapolating results to patient populations with different and unknown etiological entities impossible.

    A pretty standard exercise test panel is run and as far as I can tell this part is in and of itself okay, but I am not confident in my assessment here as I am not up to date at all on how those methods are viewed today. There are limitations inherent in those methods, e.g. everyone always measures quadriceps strength because it is easy to do with available equipment but that obviously does not give clues at how efficiently said quadriceps is used during things like squats. Which is what you want when measuring whether a muscle responds to stimuli, but it does not tell you if you have problems with movements and coordination and so on.

    Patients only reaching about 90% of a predicted heart rate does not necessarily mean much since the models used to inform what kind of heart rate would be the proper one are heavily contested. These parts are a bit like measuring inflation for an economic body - it is almost impossible to to completely objectively in the most meaningful way since what you value as being meaningful changes the discussion and several ways may be objectively correct. Being within 10ish %s of a rate reached at exhaustion is actually pretty good to my mind for untrained people (most inexperienced probands subjectively rate their perceived effort as a '9-10/10' when they are objectively at a '7' when looking at actual VO2max as a rule of thumb).

    I am missing a short mention of people who are most likely untrained individuals being unable to reach theoretical maxima is to be expected. A number that was thrown around a decade ago was '40-50%' for what a completely untrained individual can use voluntarily from the available motor unit pool. Weakness in this regard is not only not unusual, it is the norm. Like I said, I am not familiar enough with the interpolation or the occlusion methods to comment on them but I would assume this was all done competently in and of itself.

    All of this seems to point to the problem not being in the contractility of muscles which is a statement that probably still holds true to this day. I do not know if the conclusion that is has to be a central mechanism if voluntary movement is impaired is completely true but for the sake of discussion I'd say we can assume this to be correct or at least close enough.

    It is normal for untrained individuals to be way behind in what can be achieved in a voluntary contraction vs external stimulation, but I've already said that. Considerable variety on repeated testing with normal strength would point to a problem that could be interesting to to research on. I'd look at something something electrolytes first and go from there.

    It is completly, entirely, utterly off base to state that exercise is safe for patients with a condition one does not understand based on those few tests.
    Just to type up a non-exhaustive list of was not done here: Prolonged aerobic exercise, looking at responses to increased exercise volume or frequency, looking at anything on day 2, comparing results on subjectively good/bad days, actual response to training stimulus after weeks&months, reporting changes in any symptoms whatsoever, recording effects of any training intervention in any of the patient population, recording effects of different training regimes, etc etc

    All of this is ignoring any problems with study structure (lowish number of probands, how appropriate is the control group really, does doing a couple reps on some quad machine really measure the most interesting things and so on).

    It is apparently just assumed that this patient population probably responds to training normally and that training will probably fix something along the lines. Which is an abhorrent response when it is completely unclear where reported symptoms are coming from.

    I do want to quote one sentence though:
    Yeah, well, you know. Saying that it is necessary to be careful when drawing conclusions about treatment and then implicitly stating that the conclusions are obviously to put people through a training regime is a bit saying one thing and doing another. I'd wager any scientist worth his salt would've been intrigued to coax out why people seem to struggle with central drive and why repeated results during strengthtesting seemed to be all over the place. This is interesting. What it is decidedly not is 'yeah well probably something something motivation or other lets just make them somehow train something or other yadda dadda'.
    Last edited: Jul 10, 2020
  13. Mithriel

    Mithriel Senior Member (Voting Rights)

    These studies that suddenly appear after the Oxford definition, or even after the invention of CFS have to be taken in context.

    Before that there were people like the Behans who were interested in ME and set up studies to tease out what it was and what might help. Now the studies were not being done by people who were primarily interested in ME or even researchers interested in the physiology of movement.

    They were psychologists and psychiatrists who wanted to expand their patient base and had discovered a whole new patient population to bring in.

    The research was superficial and badly designed from the start. Exemplified by the stunning conclusion that because people who joined groups were sicker than people who didn't, not joining a group and avoiding other patients was important for recovery. :banghead::banghead::banghead:
  14. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    The definition of fatigue assumed by Stokes et al. and all supramaximal twitch interpolation studies is a decline in maximal force output. This is a definition assumed by neurologists, not exercise physiologists who define fatigue as a point at which increased supraspinal drive is required to maintain the same force output.

    The strange part is, they (neurologists) assume their demarcation between peripheral and central fatigue is meaningful for real diseases. Yet when they do studies like this for muscular dystrophy patients, they get the same results as in CFS patients: "central fatigue". (Of course central drive can be reduced via feedback from peripheral afferents!)

    Notably, the exercise physiologist definition has never been measured with prospective (repeat) testing. Though the power output at the ventilatory threshold in 2 Day CPET studies gives us a clue...

    Oh and Lloyd et al. as a followup to this study found no disturbance of effort perception, nor a lack of supraspinal effort.
  15. chrisb

    chrisb Senior Member (Voting Rights)

    Eureka! The Holy Grail has been discovered and after only thirty years. In Liverpool, not Glastonbury. There was always archaeological evidence but who would have thought it would be found under:

    Acta MED Scan Suppl. 1986;711:179-88.
    doi: 10.1111/j.0954-6820.1986.tb08948.x.

    Muscle Fatigue and Pain

    R H Edwards

    Muscle fatigue and pain are together common symptoms which can be analysed physiologically. For many patients attending a medical clinic the problem for the doctor is to decide whether the problem is "in the mind" or "in the muscle". A history of the symptoms occurring at rest without any exercise is a hint of psychological origin. Exercise fatigue or pain should ideally be reproduced by an appropriate provoking exercise test. Needle biopsy with histochemistry is cost-effective as a means of reaching a diagnosis while blood determinations of erythrocyte sedimentation rate and plasma creatine kinase and lactate are more specific but less sensitive indicators of a muscle cause. Fatigue is analysed by force and action potential measurements with electrically stimulated contractions. Pain worse after exercise can be related to muscle damage. A programme of therapeutic exercise may be tried as a further means of assessment of these symptoms.


    The following are extracts from the paper:

    A first step is to attempt to seek a physiological explanation for the symptom of fatigue (Table I). In patients who complain of some or all the symptoms of “Effort Syndromes” (Table 111) several changes have already been described including altered central or peripheral circulation or of abnormal muscle metabolism but all are evoked with activity and therefore cannot be the explanation of the symptoms of lassitude and fatigue at rest....

    Myalgic encephalomyelitis (also known as epidemic neuromyasthenia, Iceland disease or Royal Free Disease) appears to have a very similar constellation of symptoms (Table IV). The finding of a mechanism underlying the disorder gives comfort to the sufferer that an objective abnormality has been found thus exonerating the “psyche” (12). The nonspecific and widespread nature of the symptoms even among sufferers in an epidemic when correlated with personality suggests a neurotic tendency and altered “medical perception”...

    PRACTICAL CONCLUSIONS This exploratory approach to the symptoms of muscle fatigue or pain in muscle can be summarised as one in which an attempt is made by physiological means (Table I, Fig. 2) to establish whether the symptom has its origin “in the mind” or “in the muscle”, realizing that very frequently there is a combination of both. As a strategy for management it is found to be important to use the known capacity of a muscle to adapt favourably to exercise training as a means of convincing the patient that though the pain or fatigue may be extremely troublesome it is not serious. Through persisting with a programme of exercise rehabilitation, in which the patient “earns” attention according to co-operation and commitment to the programme, there is fostered a “coping strategy” which will enable the sufferer to perceive these symptoms in a more reasonable perspective such that they do not result in disability. For this it has been found useful to “prescribe” a pedometer and to ask the patient to keep a diary of physical activities with pedometer readings which is presented on subsequent clinic visits. Most important of all has been the explanation given of the physiological basis of their symptoms (Appendix). The unresolved problem is how to convince patients who believe they have ME myalgic encephalomyelitis (ME) to overcome their adherence to the advice given to rest (Table 111) which carries with it the consequences of inactivity in terms of well-known circulatory and metabolic changes (26) all of which are detrimental to exercise performance, orthostatic circulatory adjustments, and muscle metabolism and indeed may contribute to or cause symptoms of muscle fatigue and pain.


    Effort syndromes (including muscle fatigue and pain).

    Explanatory notes for patients by Professor R. H. T. Edwards

    These troublesome conditions have been called a variety of names over the years e.g., Da Costa’s syndrome, vasoregulatory asthenia, epidemic neuromyasthenia, myalgic encephalomyelitis. This merely reflects the fact that effort syndromes may come on as a result of any of a number of precipitating causes, and may appear in a variety of forms. Because the symptoms are often vague, unpredictable and variable in intensity, they have often been described as being “all in the mind”. This is not so. The symptoms have a real physical basis as can be demonstrated by exercise testing to the point of bringing on the charactenstic symptoms and making observations or measurements of the breathing, heart rate, and other physiological changes.

    Though exercise may be uncomfortable to the extent of causing anxiety it is not dangerous. In fact effort syndromes can often be successfully treated by a course of exercise training of progressively increasing intensity.
    (edit my bolding)

    The principal problem causing an effort syndrome is incorrect control of (1) the blood circulation: (2) the pumping action of the heart and (3) the distribution of the blood to the active muscles: (4) muscle chemistry. Just as the spacemen living for weeks in a weightless environment need exercise to ‘tone-up’ circulation and keep the heart and skeletal muscles in good trim, so the patient with the effort syndrome needs exercise to break the vicious circle of

    debility /lethargy _depression and or anxiety_ inactivity _symptoms _reduced exercise capacity
    (NOTE in the original this is presented in schematic form, but it has not copied)

    By the time the patient seeks help for the effort syndrome the original cause may be many months in the past and the symptoms may, almost without notice, have altered. For this reason there is no great value in going on investigating to find the cause of the original illness if that is still unknown. The most important thing is to realize that an effort syndrome, being a physiological disturbance, is primarily treated by physiological means, that is, exercise.

    Sometimes additional drug treatments may be prescribed to help control the heart and circulation or to help control depression or anxiety. Though sometimes helpful to the individual patient, they cannot alone bring about the desired end of improving well-being and performance.

    It is sometimes helpful to compare the body to a motor car. For effective and enjoyable motoring it is necessary for the driver to be fit and the motor car in tiptop working order. Performance is reduced if the driver is fatigued and if there are mechanical faults in the vehicle. Effort syndromes affect many parts of the body including both the “driver” (the mind) and the “machinery” (the heart, circulation, muscles). The plan for treatment must take account of all aspects of the problem. That is why it may be necessary to have consultations with other doctors, including psychiatrists, rehabilitation experts, physiotherapists or medical social workers, etc., as part of the treatment. However, one doctor must remain in overall control. It is her/his responsibility to design the treatment programme which is best for the individual patient.

    Now what about you?

    Your effort syndrome can be treated so that you can eventually lead a fully active life.

    Your symptoms will not disappear immediately but over the course of weeks or months they will gradually become less troublesome. An effort syndrome can be a distressing and disabling condition which is not easily treated by the conventional medical services. This is largely because it is very time consuming. These few notes and the treatment programme are designed to give you the best opportunity of understanding your effort syndrome and how you can, with support, treat it yourself.

    “Treat-it-yourself ’ (additional to any treatment you may receive in hospital, laboratory or gymnasium)

    Postural hypotension i.e., low blood pressure when you stand up.

    This may be a troublesome feature of effort syndromes. Dizziness or light-headedness may accomapny standing up suddenly, getting up out of a warm bed or hot bath, simply standing upright for a long time, or standing still after exercising. This does not matter though it can be a nuisance. Contracting the leg muscles or walking a few steps can help to raise the blood pressure and this may prevent the light-headedness. If the light-headedness continues to be a problem, lie flat and if necessary raise the legs. gymnasium).

    Real life

    The most important thing you can do is find a form of exercise that you enjoy and then to carry it out regularly. Do not start with violent exercise. Start with a small amount of exercise every day. But every day do a little more than the day before. (edit my bolding) Try to measure your response to exercise by timing a particular task or counting the number of times you can repeat a task so that you can follow your progress. Keep a diary of your physical activities so that you can look back and see how much you have improved. A pedometer can add interest and more measurement to your physical activity diary. Remember to bring your activity diary to clinic.

    What kinds of exercise?

    1. Walking-walk wherever and whenever you can. Learn to walk with a steady pace, so that you can enjoy walking continuously without fatigue for hours. Walking in the country, especially hill walking, can be both enjoyable and beneficial.

    2. Climbing stairs-in the absence of a conveniently placed hill, stairs offer a good opportunity for exercise. Give up lifts (elevators) for ever!

    3. Sports-take up any sport you think you will enjoy and participate in regularly but do not expect too much in the beginning. You will not be a top class athlete but you can expect an enormous improvement in your performance and sense of physical well-being if you participate regularly. Again the rule is “start gently and do a little more every day”.

    4. “Callisthenics”-in one of its forms, music and movement, yoga, slimnastics, 5BX etc. can help build up particularly weak muscles and maintain posture, coordination and joint mobility. No one system has a monopoly of truth or effectiveness but find one form which fits best into your life-style. Muscle fatigue and pain 187

    Finally: Don’t give up hope. You can cure your Effort Syndrome if you really want to!

    (note. My bolding)

    General Reading about Exercise: “Exercise: the Facts” by E. J. Bassey & P. H. Fentem, Oxford Paperbacks, 1981.

    I have thought this to be of such importance for understanding the origins of GET in the UK that I have copied extensively. This is a matter of public importance. It always seemed that there had to be something before Wessely and Sharpe, and this seems to be it. It corroborates the information given by Mary Sullivan in the MEA Newsletter article.

    Didn't some famous person once say "The bastards don't want to get better". The origins of that idea are now clear.

    It almost seems as though there is, in the history of ME, a deliberate attempt to dissociate the idea from "effort syndromes". This is understandable in so far as the term came later to be used for the "hyperventilation" theory of such as Rose and the disgraced Nixon. It is very odd that in all the writings on treatments this paper only ever receives passing mention and the title is not sufficient to draw attention to itself-almost deliberately so.

    What seems like years ago, I noted Edwards tendency to make huge leaps of the imagination and make statements way beyond what could reasonably be inferred from his evidence (that was in the Abstract of his paper in the CIBA book). It seems not to have been an isolated occurrence.

    In passing, I did notice a pleasing circularity involving the Stokes et al paper. Chalder and Butler, reporting their work with Wesssely and David, cite Stokes et al., who seem to provide no evidence in support of their generalised comments other that citing David, Wessely and Pelosi, which as we know was merely an opinion piece. When did evidence go out of fashion?
    Last edited: Jul 13, 2020
  16. chrisb

    chrisb Senior Member (Voting Rights)

    Nowadays, the debate about the merits of rest
    versus activity is again raging. On the one hand
    those who write about postviral fatigue usually
    conclude with a statement along the lines of
    ' physical and mental exertion is to be avoided'
    (Anon, 1988). In particular, it is stated that
    exercise may induce relapse, since ' any exercise
    will make them worse' (Dawes & Downing,
    1989). Many neurologists and physiologists take
    the contrary view (Edwards, 1986; Editorial,
    1987). American experts on chronic fatigue
    syndrome have concluded that 'there is no
    evidence that forced rest or inactivity ameliorates
    the illness or that physical activity worsens the
    underlying process' (Schooley, 1988), as long as
    return to activity proceeds gradually.

    To show the relative obscurity of the paper, this is the reference tp it by SW in Old Wine in New Bottles-Neurasthenia and ME.
  17. chrisb

    chrisb Senior Member (Voting Rights)

    To support my case for the concealment, whether accidental or deliberate, of papers related to effort syndrome I would quote History of Postviral Fatigue Syndrome S Wessely British Medical Bulletin (1991)vol 47 no 4pp 919-941 @p926

    From its dominant position in the Surgeon General's Index neurasthenia began to disappear. The space devoted to it in the classic neurological texts dwindled, and finally disappeared, or received a brief psychiatric coverage. The same happened to the effort syndromes (Da Costa's Syndrome, Soldiers' Heart, neurocirculatory asthenia). No figure was more associated with these diagnoses than cardiologist Paul Wood, but by the end of his career he saw them as synonymous with anxiety disorder. Others merged the syndrome with neurasthenia, just as some contemporary researchers merge them with PVFS (Rosen, King, Wilkinson, Nixon Is chronic fatigue syndrome synonymous with effort syndrome JR Society Medicine1990183 761-764)

    Neurasthenia was replaced mainly by the new psychiatric disorders. The symptoms were now listed as psychological-painful fatigue became anhedonia whilst a textbook of anxiety could include the symptom "fatigue on slightest exertion". The greatest beneficiary was the new concept of depression...and the view became widespread that "all neurasthenic states are in reality depression,-perhaps minor, attenuated, atypical, masked, but always forms of anxious melancholia".

    Not a hint in all that that Edwards, who seemed to have undue influence, was using the term effort syndrome to explain his cases.

    All very strange.
  18. chrisb

    chrisb Senior Member (Voting Rights)

    The one reference to Edwards 1986 paper in Wessely at als Cognitive Behaviour Management of PVFS in 1991 is

    As an additional benefit, useful physiological changes can be expected. After all, rest, with its inevitable deleterious effects on cardiac, respiratory and muscle physiology, is hardly the treatment of choice for a chronic fatiguing condition (Edwards 1986).

    Much of the preceding content seems to be influenced by Edwards' views.
    alktipping, Sean, Trish and 2 others like this.
  19. chrisb

    chrisb Senior Member (Voting Rights)

    Apologies. I recognise tat all this presentation of quotes is a bit tedious-but it has to be done.

    In his chapter on chronic fatigue in the Cognitive Behaviour Therapy book in 1997 Sharpe wrote

    Related physiological changes in muscle may at least in part explain exercise-associated muscular pain (Edwards 1986). The common factor about all these processes is that they are understandable and reversible.

    Clearly he is aware of the paper, but declines to refer more widely or explain any distinctions between "effort syndrome" and CF or CFS.

    One curious aspect of all this is the language used by Mary Sullivan in answer to Chalder and Butler. It almost seems as if she thought she was participating in some wider trial to test the efficacy of Edwards' "treatment". If she was it went unreported. That document contained in Edwards paper is interesting. Is it something handed out to those attending his clinic, or is it part of some trial?
  20. chrisb

    chrisb Senior Member (Voting Rights)

    One would have thought that Wessely and Sharpe were bright enough to be alert to the dangers of quoting favourably from a paper without dissociating oneself from potentially damaging remarks. Does that

    The common factor about all these processes is that they are understandable and reversible

    mean that he endorses the view that

    You can cure your effort syndrome if you really want to. ?

    It certainly looks like that.

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