A Life Hidden

The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME.  I have chosen to write extensively on this subject, as the guidelines encompass several themes that are important to me.

The BACME guidelines support the biopsychosocial (BPS) model of ME, which holds that deconditioning and the avoidance of activity play a major part in ongoing symptoms.  In Part 1 and Part 2 I outlined my concerns about the guidelines, particularly their recommendation of graded exercise therapy (GET), also known as graded activity, and their failure to address many issues of critical importance in severe ME.

Today I ask whether deconditioning is relevant in the management of severe ME, and, if so, how it should be addressed. 

I end by offering suggestions of ways in which the guidelines could be improved.  

As this is a lengthy piece and will likely be a challenge for those who are ill, I have once again included a short summary at the end of each section, for anyone unable to read the full text. 

Part 3 contains the following: 

• Is deconditioning relevant? 
• My personal experience 
• Dealing with deconditioning 
• The need for appropriate professional support
• In conclusion

Is deconditioning relevant? 

How much emphasis should be placed on deconditioning in the management of severe ME?  Are the BACME guidelines justified in focusing so heavily on this issue?

It would be wrong to claim that deconditioning is not a problem, to some extent, for everyone with severe ME.  An inability to be active, coupled with living in an enforced state of sensory deprivation, means that the body becomes unaccustomed to exercise and stimulation.  Were a cure for ME to be found, all of us who have been ill would face a period of physical and mental readjustment to the demands of normal living, as a result of deconditioning.  The same is true, of course, for any chronic illness: this is not a problem exclusive to those with ME, even though it is often presented as such. 

But deconditioning does not begin to account for the multitude of symptoms and physiological abnormalities observed in ME.  Research on this specific issue, undertaken by a Dutch team in 2018, concluded that the cardiovascular changes seen in people with ME could not be explained by deconditioning:

 “The absence of a difference in the decreases of stroke volume and cardiac output between patients with mild, moderate, and severe disease suggests that the decrease of stroke volumes and cardiac output is not related to deconditioning.”  (Van Campen, C et al, Journal of Thrombosis and Circulation. 2018)

Furthermore, the Workwell Foundation in the USA, who have conducted extensive exercise testing in ME patients (see Part 2 for more details), states that:

“ME/CFS is not deconditioning nor are its symptoms explained by inactivity. The debility in ME/CFS is much greater than is seen with deconditioning.”  (Workwell Foundation open letter, 2018)

My personal experience

Speaking from a personal perspective, I have been aware of the effects of deconditioning in my own illness.  But having progressed from being close to death to the more active place where I am now, I can confidently say that deconditioning and the symptoms of severe ME are very, very different entities.  The weakness and heightened sensitivity of the former do not have the toxic, overwhelming quality that is central to ME symptoms.  With deconditioning, a linear progression is possible, however slow it may be.  With ME, any attempt to increase beyond safe limits causes a worsening of symptoms, with the risk of permanent relapse. 

I have been ill for nearly 30 years.  Contrary to what might be expected in terms of deconditioning, my ability to tolerate sensory stimulation and use my muscles is dramatically better now, after decades of isolation and inactivity, than it was within weeks of falling ill.  The difference is not that I have become reconditioned – indeed the opposite is true – but that my ME has improved significantly.  Deconditioning is undoubtedly an added layer of complication in my overall condition, but it is ME that influences my symptom intensity.  This is demonstrated by the contrast in ability on good and bad days. 

I remain largely house and bed bound, but have made significant progress over time.  Where I lay for years in dark silence, unable to communicate or move, I can now – at times – engage in lively conversation.  On better days I can enjoy short trips out, cope with being in a room of people, and tolerate a fairly high level of light and sound.  Such activities remain very limited and unpredictable, and I suffer for them.  But I have reached a level of functioning that was impossible to imagine in my darkest years.  Furthermore, my progress continues, and at times I am able to stretch myself and gently increase my boundaries.  

And yet I firmly believe that rehabilitation strategies such as GET are inappropriate and dangerous for those with ME.  (This belief is supported by research and extensive patient surveys, as detailed in Part 2.)  Graded activity has not played a part in healing my body – but it most definitely contributed to severe relapses along the way.  

I am not suggesting that my progress has been effortless, or that it happened without pain.  Recovery from lengthy illness is a tough process, and I have at times had to challenge myself and face things that were difficult for me.  But there is a critical difference between stretching within established safe limits, and pushing to a damaging degree.  I have misjudged this delicate balance on many occasions, and each time paid a heavy price.  

The BACME guidelines make no reference to the need to get this balance right, or of the potential risks of going too far.  They also fail to acknowledge that, in the most severely ill, there is no safe level of activity, because even the smallest exertion provokes a terrible worsening of symptoms.  

These are serious omissions. 

Dealing with deconditioning 

How, then, should deconditioning be addressed?  Is there any place for a structured increase of activity for those with severe ME? 

A crucial fact, routinely overlooked, is that deconditioning can only ever be addressed secondary to appropriate management of the underlying illness.  Any intervention that worsens the ME will automatically compound the problem of deconditioning.  Conversely, creating an environment for the body to heal provides greater chance that deconditioning can eventually be tackled on some level. 

For me, the most beneficial management approach by far has been living within my limitations and achieving quality rest whenever possible.  (Such an approach has to be built upon adequate symptomatic relief.)  I am far from alone in this: patient surveys overwhelmingly favour pacing as the most effective way of managing ME.  Furthermore, a study in 2009 reported that:

“Patients who were able to stay within their energy boundaries made significantly more improvements over time.”  (Jason L, et al. Patient Educ Couns. 2009.)

In 2019, research from DePaul University found that:

“Underexertion may be beneficial for individuals with particularly severe energy limitations.”  (O’connor K, et al. Chronic Illn. 2019.)

This echoes my experience.  In forcing myself to do less rather than more, I have achieved stability and been able to make progress. 

Yet the BACME guidelines repeatedly claim that increasing exposure to activity and sensory stimuli will generate improvement:

“Feedback from people with personal experience of getting better from CFS/ME, suggests that building up exposure to sound and light gently and slowly can often facilitate gradual improvement.”  (BACME Working Group on Severe ME, Version 2, page 27)

This is a classic example of mistaken – or perhaps misrepresented – cause and effect.  A more accurate wording would be that improvement (in those fortunate enough to experience it) facilitates gradual re-exposure to sound and light.  Trying to reverse the equation and create healing through sensory exposure – or any form of activity – is absurd at best, and dangerous at worst.  It is akin to believing that because healing a broken leg allows a return to playing sport, a return to playing sport must therefore heal a broken leg. 

Living with ME is like trying to cross a field submerged by deep flood water – the water being the illness.  If the waters recede a little (the body’s own natural healing), the exposed ground will be left boggy (deconditioning).  With care and attention it will be possible to traverse this exposed section of ground.  At this point, a slow and gradual increase of activity can be of benefit, provided that symptoms are always respected.  But – and I cannot stress this enough – one can only go as far as the edge of the remaining flood water: any attempt to walk through that water (the remaining illness) will result in drowning (relapse).  

Caution is vital at every stage, and any increase in activity should be based on careful monitoring of symptoms rather than pursuing arbitrary targets.  The flood water (the illness) cannot be pushed back through willpower, exercise, positive thinking or increasing activity.  Some with severe ME never experience any degree of natural healing.  Their flood waters are a permanent barrier, through no fault of their own. 

I have had enough experience of working with BPS-orientated professionals to know what question comes next.  How do you know if lack of progress is because of ME symptoms or deconditioning?  If you’re not trying new activities, how do you know that you can’t do them?  

Most people with severe ME can survive only through the most stringent pacing.  The majority are existing at, or close to, the very limit of what they can safely manage, squeezing every last drop offered by shockingly meagre resources.  If and when natural improvement takes place, the person with ME will almost certainly know it because the daily struggle to exist will become fractionally less intense.  For me it has not necessarily been a conscious knowing, but an awareness at some deeper level of less toxicity in my body; a slight stirring of an energy not felt before.  I have instinctively known when the time has come to attempt something new, and I have naturally adjusted my activity levels (very gradually) to match my increased level of wellbeing.  

But, despite many years of attempting to do so, I have never been able to actively generate improvement through graded activity – and instead have always made myself worse.

I will reiterate a fact so important that it bears repeating: the effects of deconditioning are very different to the symptoms of severe ME.  The former is a weakness one can take control of; the latter is a vicious beast one messes with at one’s peril.  Nowhere in the BACME guidelines is this critical point addressed. 

The need for appropriate professional support

There is an urgent need for professionals who can offer appropriate advice on managing the profound disability resulting from severe ME.  This includes preventing secondary complications, such as contractures, bed sores and blood clots, as well as assisting with gently strengthening muscles if – and only if – improvement should occur.  

I have had to re-learn how to sit, stand and walk again (a process that is very much ongoing), but there has been a glaring lack of professionals able to assist me in a safe way.  Physiotherapists have failed to understand the need for caution and almost always pushed me too hard, making the ME worse and ultimately cancelling out any progress made. 

Fortunately I have received invaluable support from an Alexander Technique teacher, whose gentle work with my body over many years has enabled me to make significant progress.  Without her I would have had no help whatsoever in gradually learning to use my body again after decades of severe disability.  

I know that countless others face a similar problem, and that many are left with permanent complications that could have been prevented with appropriate help.  Professionals properly trained in treating severe ME would make an immeasurable difference to the lives of many.  BACME have missed a vital opportunity to support this.

In conclusion

In this three part series I have shown that, although the BACME guidelines have some positive sections, overall they lack understanding of severe ME and promote harmful attitudes and treatments.  

I would like to see the guidelines re-written, so that the helpful sections are properly backed up with quality information on treating severe ME.  

The following points should be addressed with urgency:

• There needs to be repeated warning of how easily harm can be caused to someone with severe ME. 
• There must be clear instruction to professionals that extreme caution is vital at every stage. 

In addition, the guidelines should provide clinicians with a good understanding of the following: 

• The main symptoms of severe ME. 
• Historic and current biomedical research findings, and their possible connection to specific symptoms. 
• Potential pharmacological interventions and their particular effects (positive and negative) in severe ME. 
• Other, non-pharmacological means of symptomatic relief. 
• Common dietary and nutritional problems encountered in severe ME. 
• The concept of pacing.  (With acknowledgement that this might be impossible for the most severely affected, due to the extreme burden of symptoms.)
• The dangers of graded exercise. 

Any professional treating someone with severe ME should be able to provide the following to their client: 

• Extensive advice on reducing strain on the body as much as possible, to allow quality rest and healing. 
• Guidance on ways of reducing the risk of secondary complications – such as contractures, bed sores, blood clots and osteoporosis – without worsening the ME.   
• Psychological support where necessary, without confusing this with treating the underlying illness. 
• The opportunity to explore alternative treatments where appropriate. 
• Advice on safely strengthening unused muscles and re-learning activities such as sitting and standing – but with the understanding that this can only ever follow improvement and never be used as a means of generating it. 

Perhaps most importantly of all, there should be recognition of the fact that the person with ME knows their body better than anyone.  The guidelines, and any professional following them, should encourage those with ME to trust their instincts.  The patient’s judgement, needs and wishes should be respected at all times.  

These are not radical suggestions.  In any other illness it would be considered mandatory for a clinician to have satisfactory medical knowledge of the condition they were treating.  At the very least they would be expected to know methods of symptomatic relief, and to be aware of ways in which the condition could be made worse.  

These should be basic requirements for anyone treating ME, too. 

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Footnote: As the aim of this website is to give an insight into life with severe ME, it seems relevant to offer a few lines on what is involved for me in writing a piece such as this.  Firstly, I should stress that cognitively I function towards the upper end of what is possible in severe ME.  Many are completely unable to read or write at all (as was the case for me for some years), let alone digest or produce anything of this length.  

Nonetheless, my cognitive functioning is confined to very limited spells that exist only through careful pacing.  The delay between the BACME guidelines being released in January – which is when I began writing – and my posting this analysis in September and October, gives some idea of the pace at which I am forced to work.  (My relapse earlier in the year delayed things further, as I had to abandon writing completely for some months.)  

The majority of this series has been written in short sessions of around 15 minutes, lying flat in bed (the position in which my brain functions best) and typing on my phone.  I have had to neglect numerous other activities in order for it to be possible.  The finished product creates the impression of high cognitive capacity.  This is an illusion, stitched together through a year of small blocks of functioning. 

Images: Iceberg by Annie Spratt on Unsplash; Lake by Tyler Lastovich on Unsplash