Denise began by sharing her journey with ME/CFS and its challenging impact on her life both personal and professional. It is an often misunderstood illness and when working with clients affected by it, NICE recommends, therapists have some supervision from a supervisor with knowledge and/or experience of this condition and how it may present or impact the client and therapist. Denise explained we need to listen empathically, whilst asking less questions, because each person’s experience with ME/CFS is totally different and it is often difficult and fatiguing for them to explain. Don’t assume ‘I know this illness, I have worked with it before’ because it is one in which there are no certainties, similarities or by-the-book symptoms.
The good news is ‘people can and do recover and many have successful and fulfilling lives.’
The downside is: ‘the illness can go into remittance but return’ and ‘a signficant number of people remain ill for many years’. Suicide is also a high risk for those with CFS: Kings College, London’s 7 year study (2007- 2013) found, once removing other factors, ‘rates of suicide were approximately six times higher than in the normal population’. The Lancet (2020) also showed the increased risk.
Denised explained people suffering ME are often thought of as hypochondriacs, disbelieved or even ridiculed. Some schools initiate ‘truancy actions’ due to the absences of children with ME and similar experiences are related within workplaces. Actions like these can be disasterous for those concerned, and may lead to significant distrust of medical professions, social care, teachers, HR departments and employers. It is thought some patients may have lost trust in the health and social care services through not being heard https://nice.org.uk/guidance/ng206/
Currently there is no cure. Treatment is focused on reducing/managing symptoms. Pharmaceutical painkillers and antidepressants are offered along with Physiotherapy and Counselling. NICE has ‘downgraded the use of Graded Exercise Treatment (GET) and the ME patient community has welcomed it. The ME Assocation might look at whether there is a genetic link to ME/CFS.
NICE guidelines describe it as ‘a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.’ ME/CFS affects different aspects of people’s lives, emotional wellbeing, social life and education plus those of their families and carers. One significant constant is ‘FATIGUE’ which Denise described as exhausting and at a level not experienced by the uneffected. This extreme fatigue affects muscles, brain, nerve pain, thinking, relationships, ability to work or sometimes to speak. It creates a constant not knowing how you will be on any day or any moment of it – a deep sense of loss of who you are. Ethically grounded contracting needs to be openly discussed and agreed, including the potential impact of ME/CFS on the client, their appointments and the therapeutic relationship. Both client and therapist can then feel their work together is transparently understood, congruent and supported.
Therapy appointments: A client may get up, feel ok, and get ready to keep an appointment. Suddenly they experience complete fatigue and know they can no longer attend, so cancel or even DNA. Feelings of hopelessness, helplessness or shame may follow for the client. The therapist, being sometimes unaware of what has happened, feels concern for the client, but also possibly a helplessness for their practice – a parrallel process? Transparency with clear contracting may ‘hold both sufficiently until contact is re-made’.
The practicalities therapists may need to consider are: how close can a client park to the therapist’s door; can some-one bring them; is it easy to enter or leave; where can they wait safely; where is the counselling room situated within the building, is there a lift, are light switches and/or the stairs easily accessed and managed; can the client be seen in a room on the ground floor? Another important factor is whether the 50/60 minute session is too long for the client and does it need to be shorter, always or sometimes depending on their wellbeing. Can the client sit comfortably, or lay down if needed? Health, safety and fire regulations might need to be reviewed to ensure this vulnerable group of clients can always access and exit the room/building safely.
Denise then visually illustrated the burden of ME/CFS and chronic illness on sufferers through the use of pillows! As the helper, I stood with arms outstrethched initially demostrating ‘pre- illness’.
The First pillow – placed on outstretched arms and represented pain, sleep disturbance and fatigue
The Second – failed attempts to return to pre-illness level activity
The Third – depression
The Fourth – loss of employment, finacial problems, relationship difficulties (the pillows felt heavy)
The Fifth – loss of roles in life
The Sixth – loss of self-esteem.
The helper ‘disappeared’ under a pile of heavy, difficult to hold pillows and could no longer be seen. Denise had managed this in such a way that I also felt unseen, unheard, not understood and lost, which is clearly the powerful, negative effect of this range of illnesses on clients, friends or family, and even our own imagination!
Thank you, Denise, for giving a seriously worthwhile, accessible talk on a complex subject.
Reviewed by Jacqueline Holloway.
Denise has kindly given members permission to email her if they have a question about ME/CFS: denise.exall@gmail.com, and has said she will respond as promptly as she is able.
Full details of this talk are in her slides emailed to HACP members on the 15th Sept. 23.
ME Assoc: https://meassociation.org.uk/ ME Action: https://www.meaction.net/countries/uk/
The British Association for Counselling and Psychotherapy (BACP):
Workplace: https://www.bacp.co.uk/bacp-journals/bacp-workplace/april-2022/working-with-chronic-illness/