What Ramsay Has to Say

The recent report by the US Institute of Medicine seems to have taken us back to Ramsay, stating clearly that this is a disease which is defined by the fact that exertion of any type can do harm in many systems in the body. They are definite that this is not a psychiatric disorder, and their first recommendation is that the term CFS be got rid of. They suggest the name Systemic Exertion Intolerance Disease, the word ‘intolerance’ meaning medical intolerance…like lactose intolerance, glucose intolerance….where actual harm is done if you don’t keep away from the thing that your body can’t (physically) tolerate. This completely undermines the psychiatric position- which is that you only think you have a physical illness and that exercise will make you better. The fact that influential psychiatrists are up in arms about the report shows that they can see that this report threatens their empire, even if many patients (and, of course, the media) think it doesn’t. My hope is that Ramsay’s insistence that complete rest is the first and best treatment will follow, but in our exercise-mad culture, in which all the disabled are labelled lazy slivers, this will be an uphill fight.

liedownandfightmecfs

Ramsay sets out the defining features of ME:

1. a unique form of muscle fatiguability whereby, even after a minor degree of physical effort,three, four or five days, or longer, elapse before full muscle power is restored;

2. variability and fluctuation of both symptoms and physical findings in the course of a day; and

3. an alarming tendency to become chronic.

A Melvin Ramsay was Honorary Consultant Physician in Infectious Diseases at the Royal Free Hospital in 1955 at the time of the epidemic in that hospital and spent the rest of his life studying this illness, seeing patients and acting as advocate, right up to his death at the age of 89, while he was preparing to present a paper at a conference on the subject.

He has collated accounts of other outbreaks, 18 of the 52 which he states had been recorded up to the 1986, the date…

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What Ramsay Has to Say

Ramsay sets out the defining features of ME:

1. a unique form of muscle fatiguability whereby, even after a minor degree of physical effort,three, four or five days, or longer, elapse before full muscle power is restored;

2. variability and fluctuation of both symptoms and physical findings in the course of a day; and

3. an alarming tendency to become chronic.

A Melvin Ramsay was Honorary Consultant Physician in Infectious Diseases at the Royal Free Hospital in 1955 at the time of the epidemic in that hospital and spent the rest of his life studying this illness, seeing patients and acting as advocate, right up to his death at the age of 89, while he was preparing to present a paper at a conference on the subject.

He has collated accounts of other outbreaks, 18 of the 52 which he states had been recorded up to the 1986, the date of publication of his book, ‘Post Viral Fatigue Syndrome’, the saga of Royal Free Disease’. (This book was published in a second edition titled ‘Myalgic Encephalomyelitis and Postviral Fatigue States’ by the ME Association, and is still available from the MEA.)

In the preface to this edition, Ramsay states ‘I have never approved of the term ‘postviral fatigue syndrome’ (PVFS) and accepted it with great reluctance when Gower Medical Publishing insisted it should be used as a title for my monograph.’ He goes on to explain that although it obviates the use of two different names for the same illness – ‘epidemic neuromyasthenia’ in the US and ‘myalgic encephalomyelitis’ in Britain, ‘it provided too wide a coverage for the many postviral fatigue states that can quite legitimately be included under such a title.’

The problem of naming, having publishers and editors refuse to use the names researchers give to this illness, and insistence on over-inclusive categories is a major feature of the history of this illness and the controversies surrounding it.

The accounts which Ramsay summarises were generally written by doctors who had been actively involved in the care, attempts at diagnosis, and clinical observation of the patients about whom they were reporting, and had been published in peer-reviewed medical journals. The names used for the illness varied, but there was evident overlap in the constellation of symptoms reported.

Contrary to the impression created by writers who sought to explain the illness in terms of ‘mass hysteria’ many of the symptoms (sore throats, swollen lymph glands, indications of circulatory problems – a pronounced facial pallor appearing before worsening of symptoms, low temperature in extremities – problems in vision ascribable to muscle weakness, ongoing low fever, or markedly subnormal temperature) are impossible to simulate, or to ascribe to anxiety.

Although there were outbreaks, often in hospitals and often among nursing staff, there were also outbreaks in all male settings, among schoolchildren in which the gender ratio was 1:1, and isolated cases spread across wide geographical areas.

The distribution within hospitals, in which many nurses, some doctors and other staff, and virtually no inpatients were affected could equally be explained by the fact that ME occurs among active, energetic individuals who have a physically demanding life-style. Nurses are the hospital staff with the most physically demanding roles, doctors and other hospital staff less so, and the patients are mostly lying in bed.

Yet you might imagine that individuals already sufficiently ill to be in hospital might be the most vulnerable to panic about the possibility of a further severe illness, and therefore most likely to succumb to ‘mass hysteria’.

The symptom on which most reports agreed was ‘extreme exhaustion, especially after exercise’, and where patients who had ME were studied after a significant length of time, many were still very ill, continuously or intermittently.

In the chapter about the endemic form of the disease, Ramsay points out the existence of a number of outbreaks which ‘consisted of groups of sporadic cases with no history of contact with infectious cases’ and he believes that a number of sporadic cases in North London provided ‘the nidus of infection’ which lead to the Royal Free epidemic.

In this chapter, he groups symptoms into

1. muscle phenomena,

2. circulatory impairment and

3. cerebral dysfunction.

He again refers to chronicity, and asserts: ‘Absolute rest in the early stage of the disease can prove a strong determining factor in the outcome. and

‘Relapses resulting from excessive physical or mental stress, or both, or after a further virus infection, are an accepted feature of the disease.’

In the final chapter, on ‘Research projects’, Ramsay discusses work by Dr Peter Behan, a distinguished neurologist and immunologist. In one paper, Behan points out that ‘acute disseminated encephalomyelitis and myalgic encephalomyelitis or epidemic neuromyasthenia may share a common pathway’.

‘Behan’s initial research showed that patients with epidemic myalgic encephalomyelitis had immunological abnormalities consisting of

(1). atypical peripheral lymphocytes;

(2) mild eosinophilia and anticomplementary activity;

(3) increased IgM;

(4) decreased or deficient IgA;

(5) reduced complement factor C4 concentrations;

(6) serum anti-complementary activity; and

(7) a suggestion of increased titres to Coxsackie virus (in some patients specific IgM to Coxsackie virus type A9.

A further research program was undertaken, involving study of several outbreaks, and immunological study of patients who had a similar constellation of symptoms. ‘Behan &

Behan (1977) pointed out that ‘activation of the complement system and the presence of circulating immune complexes’ had been described by them where there was muscle damage thought to be due to a vasculopathy secondary to immune-complex deposition.

They therefore suggested that in ME the pathogenesis may be that of a persistent virus with the formation of immune complexes and widespread deposition of antigen-antibody aggregates in the blood vessels, the central nervous system, muscle.’

A further study of 50 patients showed further immune system abnormalities.

Additionally ‘no muscle weakness was found in any of the patients until they were exercised by squeezing the rubber ball of an ergonometer for one minute, or by going up forty steps; the weakness lasted for up to three hours.

Muscle biopsies were abnormal in all twenty patients examined; these showed widely scattered necrotic muscle fibres in fifteen but there was no inflammatory infiltrate associated with the necrosis.

Histochemical stains showed moderately increased size and numbers of type II fibres, which are concerned with inaugurating muscle movement and, by nature, fatigue rapidly, in all biopsy samples.

Using electron microscopy, mitochondria were seen to be conspicuously increased at the periphery of the fibres and occasional tubular inclusions were present.

‘The authors consider that the results of their investigation suggest ‘that the syndrome is due to the interaction of viral infection and immunological processes which produce damage to infra cellular enzymes and result in abnormal muscle metabolism especially on exercise’.

Further discussion of research concerned with muscle damage associated with muscle damage leads to the conclusion that the mode of action of viruses on the muscle cell is extremely complex….Basic questions such as how viruses infect cells, why they are likely to persist, how they evade immune surveillance and maintain a persistent state, and what underlies the ability of viruses to injure cells and produce disease await answers.’

‘Simon and Goldstone also discussed both how persistent infections become established, and the new concept that some viruses can cause disease not by destroying the cells they infect but by altering the specialised function of the infected cell.

‘They consider that such disorders involve primarily the immune, nervous and endocrine systems. All these systems, particularly the first two, are vitally involved in the pathogenesis of ME.’

These observations, made more than 40 years ago, seem to foreshadow many of the ‘new’ discoveries which are being reported by today’s biomedical researchers.

What has caused the tragic hiatus, during which the psychiatric view of this illness, along with its damaging dismissal of rest as best practice and its replacement by Cognitive Behaviour Therapy and Graded Exercise Therapy has dominated both public perception and medical practice?

It seems that in the wake of the terrible polio epidemics which were features of my own childhood and adolescence (my cousin was paralysed from the waist down when we were both 16), ME patients in the 1934 Los Angeles outbreak were denigrated because their illness turned out not to be polio. The ‘new concept’ referred to above may well have been arrived at during the earlier phases of research into HIV, a virus which emerged in the 1980s, and was mysterious, incurable, and invariably fatal via an accumulation of rather horrible illnesses which a normally functioning immune system could deal with. Sandwiched historically between such dramatic viral illnesses, a group of people whose complaints are numerous, mostly subjective, variable, and purportedly not fatal, are very tempting to dismiss as simply competing for unjustifiable medical attention.

If we believed them, when they tell us how much they are suffering, how helpless they are, we would of course take the matter very seriously. But surely, if they only pulled their socks up and got on with it, like the rest of us have to, they would find good health much preferable to their miserable performance. This is the attitude which too many of us encounter, in our families, in the general public, and when we seek medical help.

That was Then. What about Now? Medical research into ME continues. The psychiatric view is widely accepted and increasingly influential. Nevertheless doctors who see many of these patients, who become patients themselves, or who have close family members who are ill often are, or become persuaded of the physiological nature of ME. Today there are virologists, immunologists, geneticists, epidemiologists, infectIous disease specialists, neurologists, specialists in muscle function, and even some psychiatrists who are continuing to study ME, seeking to understand the pathophysiology involved.

Ramsay’s view seems to have been prescient. It would, I believe, be fair to say that a rough consensus is that ME/CFS is an illness characterised by the criteria which Ramsay set out: it is made worse by exercise, and it seems to be a persisting autoimmune response following a viral infection. The symptoms fluctuate, and it is very long-lasting.

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Going to the Doctor

So many of us spend time, and physical and emotional energy – and if in the US, a lot of money – going to the doctor.

It is really important to persuade your doctor to do all the tests needed to make sure that you don’t have a condition that should be treated and can be treated.  Even the NICE guidelines suggest that other conditions be eliminated before a diagnosis of ME/CFS can be given.  But thanks to the influence of the psychiatrists, (who think that wanting medical tests is a psychiatric symptom), they are not allowed to give you the tests which could point positively to ME/CFS.  Also, thanks to the influence of the psychiatrists, they are told that CBT and GET are ‘safe and effective’ treatments for this illness.  So your doctor will fall into one of three categories:  She/he will respect you enough to believe the account you give of your symptoms, but not know anything about ME/CFS.  In that case, she is likely to follow the NICE Guidelines, and you may end up with a referral to a ‘specialist unit’ which will subject you to CBT and GET, more or less coercively.  This is clearly a danger to be avoided.  (You could do some research to find out what your local specialist unit, if there is one, does offer.  Some include mindfulness,  very gentle yoga, relaxation sessions.  If so, you may not be too harmed by attending.)  Your doctor may absolutely know that ME/CFS is a psychiatric condition, in which case you need to change your doctor.  Or your doctor may be that rare phenomenon who will trust you to know what your body needs, and know enough about ME/CFS to know that CBT and GET are not the answer, and will try to help you with symptom relief in whatever way he or she may be able to.

You have a right to find a doctor who respects and believes you, and ditch one who doesn’t.  That out of the way, consider the doctor’s situation.  He or she is confronted with a patient who has multiple, very distressing and disabling symptoms, who doesn’t get better, and for which there is no recognised effective treatment, except the ones that don’t help and do make the patient worse.  The patient is desperate for some sort of help, and the doctor has nothing to offer that will help, and this continues for weeks, months and years.  Doctors want to be able to get their patients better, and are pretty helpless with ME/CFS.  This is the sort of situation which challenges their their patience, their sympathy, and most of all, their effectiveness as doctors.  And it doesn’t end.  It is hardly surprising that they seek the relief of dumping such a patient into the hands of the psychiatrists.

What is a sensible response to this, from you, as the patient?  The truth about this illness is that exertion–physical, cognitive, emotional – makes it worse.  The converse is that your best chance for improvement is to respond by giving physical rest in particular, but also cognitive rest, and as little emotional upheaval as possible – the top priority in your plan for living.  The original experts were unequivocal that complete rest from the outset gave the best prognosis, and that getting worse was closely correlated with the amount of unavoidable exertion in the patients’ life.

This view was challenged by psychiatrists, also by studies showing that complete bed-rest has its own dangers, also by all the press given to exercise as beneficial in virtually every illness from warts to cancer, also with our cultural addiction to fitness, also by the thread in feminism that regards the 19th century obsession with putting women to bed for everything from warts to cancer as another form of oppression – which probably it was in most cases.  Also it seems we worship the individual, especially the woman, who just takes the (here put the name of any over-the-counter cold/flu remedy) and carries on.  Or, as Jeremy Clarkson put it, if you get ebola, be sure you get the report in before your liver liquefies.  And then there is the paralympics – those heroes who do incredible athletic feats despite incredible disabilities.

From all sides, the concept of going to bed until you get better is simply eliminated from cultural consideration.  So how are we supposed to claim our right to the rest we need – lots and lots, for a very long period – in order to have any chance of a pathway towards getting better?  Big challenge…but in the meantime – going to the doctor?

Each trip to a doctor is physically exhausting and emotionally stressful – even if the doctor is sympathetic, but much more so if each visit is fraught with misunderstanding and disbelief.  And your doctor really doesn’t have anything much to offer that will make up for the setback in your health occasioned by the visit.  Deleting these visits, along with deleting as much as possible anything else that requires exertion, may contribute to the time when you can go and report that your self-prescribed rest cure is having results – your symptoms are diminishing, your capabilities gradually expanding.

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Here’s my Guest Editorial, on how I think doctors should respond to ME/CFS

Guest Editorial > A Radical Care Pathway for ME/CFS

03
Oct
A Radical Care Pathway for ME/CFS | Nancy Blake
Much maligned and misunderstood, ME gets a radical makeover in this exclusive editorial for nhsManagers.network. But is this pathway really so radical? Perhaps only if you are a healthcare professional!
A Radical Care Pathway for ME/CFS

Analysis
Based on the premise that if an illness is defined by the fact that exercise makes it worse, maybe that should be a starting point for dealing with it!

Immediate diagnosis by careful initial interview: If patient reports an extraordinary level of debility following a viral illness, which has persisted – has other symptoms which seem random and variable but can be understood as problems of muscle metabolism, cognitive function (short-term memory problems, difficulty in following lines of reasoning), endocrine function (disturbances of appetite, sleep rhythms, temperature regulation) and immune system activity (sore lymph glands, persistent low fever, sore throats), this whole constellation points to ME/CFS.

This should be regarded as a medical emergency, because the patient’s behaviour in the early stages determines either a path towards recovery or a path towards extreme and long lasting states of incapacity. (1)
The basic prescription should be to go home and go to bed; just doing the minimum exercise necessary to prevent DVT (getting up to go to the loo might be enough!). Families need an explanation that for the patient, minimising muscular exertion is essential. A home visit from a Physiotherapy/OT team can provide advice about how to do everyday tasks using a minimum of muscular exertion, like the advice given to MS sufferers for the management of their exhaustion. The OT should assess the home and recommend/ provide aids as appropriate for any physical illness which causes extreme weakness. The patient will need psychological support to accept that the (unwelcome!) adoption of a ‘disabled’ lifestyle is the way to ‘fight’ this illness and facilitate a gradual return to as normal a life as possible. After that, a regular visit from a key worker backed up by online support may be all the patient needs while he is conserving energy towards getting better.

What should absolutely not happen is a referral to hospital, unless to provide a period of complete bed rest. Tests to eliminate other potential diagnoses should be done at home as far as possible. The expensive centres which have been set up, requiring patients to attend in order to engage in extra exertion (just getting to a hospital appointment is enough to wipe out an ME/CFS patient for days) should be replaced by these less expensive domiciliary services. Apart from encouragement to keep on resting, and encouragement to family members to appreciate that this is needed, the patient should be left alone, allowed plenty of time to get better. Under this regime, gradual improvement is to be expected (school-age children should be provided with home education until a gradual return to school becomes a possibility).

When the patient is ready, there should be interventions at the patient’s educational institution/place of work aimed at eliminating all avoidable exertion. Along with facilities for rest breaks and perhaps being able to do some work from home, this gives the patient the best chance of returning to their education, job, or professional activities. Which, contrary to the ‘false illness beliefs’ of some psychiatrists, is what patients are desperate to do. It needs to be respected that this illness is not one of motivation: ‘I can’t’ does not mean ‘I don’t want to’, it means that there is a physical limit to what the patient can do without serious subsequent repercussions.
Doctors brave enough to use this ‘light touch’ approach would be rewarded by positive relations with their patients, and the prospect of seeing them getting better instead of getting worse. But it would take real courage to challenge the cultural myths that ‘fighting’ illness is the only way to go, that exercise is good for absolutely everything, and that people who have ME/CFS don’t want to get better, and must be persuaded or coerced into activity. Counter-intuitively, treating ME/CFS patients like invalids initially is the process most likely to maximise ‘return to function’.

The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient. No wonder there is so much hostility. It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.

Nancy Blake is author of ‘A Beginner’s Guide to CFS/ME’, and co-author, with Les Simpson, Ph.D. of ‘Ramsay’s Disease – ME’. She is currently undertaking a Ph.D. project at Lancaster University on the conflicting paradigms of ME/CFS

Email: alternatives@alternatives.karoo.co.uk

1. http://www.name-us. Melvin Ramsay. name-us.org. [Online] [Cited: 3 October 2013.] “The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.”

“…in those patients whose dynamic or conscientious temperament urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘ take plenty of exercise’ the condition finally results in a state of constant exhaustion.”

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Saying hello

If you follow ME/CFS blogs, you have probably seen my name crop up in numerous comments.  I have been accredited by the UKCP for over 20 years as a neurolinguistic psychotherapist, so I can claim to be able to tell the difference between ME/CFS, which I acquired in 1986 and a psychological complaint, which ME/CFS is not.

The title of my blog says it all:  ME/CFS is made worse by exertion, and the only way we can hope to improve is to ‘lie down and fight’. Our whole culture is so locked into the idea of exercise as a cure-all, and the ability to throw ourselves about as a measure of both physical and mental health!  It seems that even when we are very sick, no one, including ourself, fully realises that ME/CFS reverses all the rules.

I’ve written a book, telling you to claim your right to rest, which I really wish I could just hand to everyone who gets sick with this illness, because your doctor will tell you to exercise, which is about as helpful as telling someone with a nut allergy to go away and practice eating nuts.  My book is called ‘A Beginners’s Guide to ME/CFS’, and I need some income from it, or I would give it away to anyone who wanted it.  But all you need to know is in the product information on Amazon, so you could just read that and not bother getting the book.  Or you could have a look at my short article, at http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs   (hope that works).   The message is to fight for your right to conserve exertion enough to do the absolute basics and still allow your body the margin of energy it needs  to figure out how to overcome this illness.

That’s all for now – hope if you have ME/CFS you will see me as an ally, and let me fight your corner – I’m quite a lot better now so I think that’s what I should be doing.

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