Beneath the Surface, Part 1

The first of a three part 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.

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

Part 1 contains the following:

  • Introduction
  • The positives
  • When compassion is misleading 
  • Overview of concerns

Introduction 

The British Association for CFS/ME (BACME), is “a multidisciplinary organisation for UK professionals who are involved in the evidence-based management of patients.”  In 2017, BACME produced guidelines on the management of severe ME.  An updated version, released in January 2019, can be found here.  The document “is designed to help practitioners, working with people severely affected by CFS/ME, to feel able to better understand the condition, and find guidance for how to […] find a way forward in managing this complex condition.”  

In this review I am deliberately focusing on the guidelines themselves, and not attempting to discuss either professionals who have contributed, or BACME as an organisation. 

The guidelines refer to the illness as CFS/ME, but I am using the name ME.  Further discussion could be had on nomenclature and diagnostic criteria, but for simplicity I have chosen not to address these particular issues here.

Title page of BACME guidelines, bearing their logo
The updated BACME guidelines

On the surface at least there are many positives about the guidelines.  The overall tone is sympathetic, and there are some good sections advising doctors on how to accommodate symptoms, such as sensory sensitivities, within the context of a consultation.  Medical appointments are frequently a cause of deterioration in those with severe ME, and such advice is to be welcomed.  

And yet I have great concerns about the guidelines as a whole.  They assume that deconditioning is a major factor in ongoing symptoms, and suggest that improvement – and even recovery – can be achieved through a programme of graded exercise (also known as graded activity).  

The BACME guidelines illustrate a topic of particular importance to me: namely that unhelpful and even damaging treatment doesn’t always come in the form of overt disbelief.  Harm can also be caused by professionals who display compassion but who nonetheless have fundamental misconceptions about the illness.  A clinician can be sympathetic and appear supportive, but still be wrong and still cause harm.  The BACME guidelines are the embodiment of this paradox.

In summary:

The British Association for CFS/ME (BACME), is “a multidisciplinary organisation for UK professionals who are involved in the evidence-based management of patients.”

The BACME guidelines on severe ME were released in 2017 and updated in January 2019.

There are some positive aspects to the guidelines, particularly the advice given to doctors on accommodating symptoms such as sensory sensitivities.  

But I have great concerns about the guidelines as a whole. 

The guidelines assume that deconditioning is a major factor in the continuation of symptoms.  

The guidelines represent an important paradox: even sympathetic professionals can unwittingly cause harm if they don’t have a true understanding of severe ME. 

The positives 

On the surface at least, the guidelines have plenty to recommend them.  There are valuable sections on topics such as achieving quality rest and diagnosing autonomic dysfunction.  Perhaps most importantly, the guidelines acknowledge that severe ME makes ordinary medical care practically impossible to access. 

“These difficulties become a significant barrier to receiving medical care […]  Clinicians need to be aware that light and noise levels which may feel normal to them, may be greatly amplified to a patient with these symptoms. Poor tolerance of movement may limit ability to travel and also increase nausea and dizziness.”  (BACME Working Group on Severe ME , Version 2, page 26)

The guidelines repeatedly stress the need for doctors and other medical professionals to respect the extreme sensitivities of the severely affected.  This is an issue of such critical importance that it cannot be overemphasised.  When the most basic consultation with a doctor is too damaging to contemplate, the consequences can be life-threatening.  Any attempt to address this fundamental problem is welcome, and the guidelines make a good attempt.  

A young man having an echocardiogram. His eyes are covered by a blanket and he wears ear defenders.
Those with severe ME find it almost impossible to access medical care

“It will help communication by others speaking slowly and softly, with short sentences, leaving longer pauses to allow a response and making a very short written or recorded edit of the important parts of the conversation to re run at another time.”  (Ibid, page 25)

One could argue that the potential consequences of a consultation are downplayed, with words such as “tiring” and “distressing” used when “relapse-inducing” would often be more appropriate.  Nonetheless, the overall message is that the patient’s symptoms must be respected and adapted to.  Throughout the guidelines there are numerous examples given of ways in which a clinician can minimise harm to the patient. 

“Experienced clinicians have also emphasised the importance of watching for signs that the patient is beginning to tire, such as facial pallor, change in expression, voice or posture.”  (Ibid, page 29)

Often the adjustments required are relatively minor – a doctor speaking slowly and quietly, or being prepared to work in dim light, for instance – but they can make the difference between someone with severe ME being able to access medical care or not.  It is therefore encouraging that this has been addressed.  There is also acknowledgement of the problems severe ME patients face in accessing screening services and other hospital-based procedures, and this is to be welcomed too. 

However, these positives are let down by some significant negatives.  The valuable sections on respecting symptoms partly obscure what is a potentially dangerous message beneath: which is that deconditioning is central to the continuation of symptoms, and that gradually increasing activity will bring about improvement.   This is perhaps only apparent on close reading of the whole document.  Few people with severe ME will have the ability to scrutinise it that carefully. 

In summary:

The guidelines contain some good sections.  

They acknowledge the difficulty that people with severe ME have in accessing even the most basic healthcare.  

They give valuable guidance to doctors on ways in which they can adapt a consultation to make it more suitable for those with severe ME.  

Unfortunately these positives are let down by some significant negatives. 

The guidelines assume that deconditioning is central to ongoing symptoms, and suggest that gradually increasing activity will bring about improvement.  

When compassion is misleading 

If a professional is willing to accommodate a patient’s acute sensitivities and show compassion towards their symptoms, is this not all that counts?  It is undoubtedly a start: I would certainly rather be treated by a doctor willing to adapt to my needs, than one who comes bulldozing in, lights and voice blazing.  But unless that compassion is backed up with an accurate understanding of severe ME, it can present problems of its own.

Patients and their families can be so grateful when someone appears to be taking the situation seriously, that they are unable to recognise when fundamental misconceptions about the illness are still in place.  If a clinician appears to understand, it is tempting believe that they know what they are talking about.  I speak from experience when I say that the relief of having someone actually take notice can make it hard to step back and reject aspects of their approach that are unhelpful.  Their compassion can become a subtle pressure to follow a particular treatment programme – in this case, graded activity. 

The guidelines themselves, in a way, acknowledge this:

“Demonstrating awareness of when a patient is beginning to tire, and responding to this supportively can be a valuable means of building trust and rapport, and may in the long term give the patient confidence that they can cope with therapy sessions.”  (Ibid, page 29)

I am not suggesting that, at an individual level, this represents a deliberate attempt to deceive.  Many professionals promote behavioural therapies such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT), not because they wish to trick their patients into something harmful, but because they are misinformed.  But herein lies the problem: the BACME guidelines perpetuate this misinformation rather than correct it.  Beyond the positives I have identified, there is a lack of substantial advice on how to treat the illness.  Major symptoms such as food intolerances and difficulty eating are given a psychological slant.  And there is no appropriate warning of the dangers of overexertion, a state that is alarmingly easily reached in severe ME.   

In summary: 

Compassion in doctors is to be welcomed, and the guidelines encourage it.  

The guidance given on accommodating a patient’s severe symptoms is a positive step, but its value is limited in the absence of deeper understanding of severe ME.  

When a doctor displays compassion and appears to understand, it can be difficult for patients and their families to recognise when treatment is potentially damaging.  

The document gives no substantial guidance on treating the illness.  

Food intolerances and difficulty eating are given a psychological slant. 

There is no appropriate warning of the dangers of overexertion. 

Overview of concerns 

My main concern about the guidelines is their promotion (albeit subtly) of graded exercise as a treatment for ME, and the glaring lack of warning as to how dangerous such an approach can be.  I discuss this in depth in parts two and three. 

But there are many other areas of significant concern.  

The guidelines – which are 45 pages long – devote a total of five lines to the subject of symptoms such as pain, nausea and gastrointestinal problems.  There is a link to another BACME document dealing with symptom management, but this is not tailored to the needs of severe ME patients.  Given that these are intractable, hugely disabling symptoms in severe ME, it is astonishing that they should receive scarcely any mention in a purportedly specialist document.  The guidelines simply say: 

“Any care package for a patient with severe CFS/ME needs to consider medical management of symptoms, such as pain, poor sleep, nausea or other gastroenterological symptoms, low mood or anxiety. Ideally these should be managed in collaboration between the patient’s GP and a CFS/ME clinician who is experienced in working with severely affected patients.”  (Ibid, page 26)

There is no guidance whatsoever on medication or other interventions that may be helpful, or indeed harmful.  There is no warning to clinicians of the well-known fact that most ME patients are sensitive to drugs and usually need to start at much lower doses than is normal. 

A young woman lies ill in bed with a flannel over her eyes.
Symptoms such as pain and nausea are not discussed in the guidelines

A section on difficulty eating briefly mentions tube feeding but devotes an equal amount of space to diagnosing eating disorders and states:

“Many with severe CFS believe [my emphasis] they have intolerances.”   (Ibid, page 21)

It advises that “they should be encouraged to keep on retrying food being avoided.”  Given the terrible reactions that many severe ME patients have to certain foods, this advice is reckless to say the least.  Perhaps tellingly, the guidelines advise: 

“Psychological intervention to help the person regularise their eating pattern may also be effective if it is accessible.”  (Ibid, page 23)

There is no acknowledgement that some foods are widely known to be problematic in people with autoimmune conditions (and not just ME).  There is no guidance on addressing food intolerances through special diets, or advice on minimising nutritional deficiencies when it is necessary to exclude certain foods.   

The guidelines encourage the use of disability aids, but follow it up with the warning that clinicians should “carefully consider the message” being given in providing them.  

“Therapists should also consider whether there is a review process in place to ensure these remain appropriate should the patient’s condition improve.”  (Ibid, page 27)

The tired old myth that an ME sufferer, once in possession of a disability aid, will have no inclination to give it up should they improve. 

The section on sleep insists that any excessive sleep must be stopped, without recognising that hypersomnia can form a vital part of the body’s healing mechanism, particularly in the early stages of the illness.  (See Tymes Trust’s comment on the issue of sleep here.)

And finally, the document ends with an appendix devoted to the recovery of ‘Sarah’, after a stay at the National Inpatient Centre for Psychological Medicine (NICPM).  To anyone familiar with  severe ME, the account will read like a fairytale.  In the space of a couple of months, Sarah is transformed from being bed bound and dependent on others, to being able to take herself to the supermarket unaided.  

I am delighted to hear of anyone who has found a route back to better health, but this case is in no way representative of severe ME, where improvement – if it occurs at all – is almost always a painfully slow process spanning many years or even decades.  To present Sarah’s story to practitioners as an example of what can be expected is highly misleading, and places pressure on patients who are unable to improve.  

The emphasis in Sarah’s account is strongly on anxiety (“Anxiety was identified as a significant factor making her rehabilitation process more difficult”) and, given the rapid transformation in her health, it seems likely that this was so.  For some people there will be secondary psychological problems that complicate recovery (or even primary psychological problems that have been misdiagnosed as ME) and these should be addressed with support and understanding.  But successfully treating such complications should not be confused with treating ME.  The guidelines make this fundamental mistake.

In summary:

There is only a fleeting mention of major symptoms such as pain, nausea and gastrointestinal problems.  

The guidelines appear to question the validity of food intolerances, and devote as much space to “disordered eating” as to tube feeding.  

The use of disability aids is encouraged, but clinicians are warned of the “message” being given in providing them.  

The guidelines insist that excessive sleep must be stopped.  

A case study tells of a woman’s rapid progress, from bed bound to visiting the supermarket unaided, when admitted to a specialist inpatient unit.  

This case is presented as an example of what can be expected in severe ME, despite the fact that improvement – if it happens at all – is usually measured in many years or decades. 

This is the end of Part 1 of my analysis of the BACME guidelines.  In Part 2 I look more closely at the guidelines’ focus on deconditioning and graded exercise therapy (GET), as well as their failure to address issues of critical importance in severe ME.