nhsManagers editorial: ME/CFS, an illness that is defined by the fact that exercise makes it worse

Nancy Blake, 3 October 2013, @ nhsmanagers.net:

Guest Editorial > A Radical Care Pathway for ME/CFS

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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!

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. 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.”