In the Jan/Feb 20 issue of The OT Magazine we featured an article from Sally Callow exploring the lack of education and understanding around myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Sally Callow is the managing director of a CPD-accredited online training provider that specifically educates health professionals on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) called Stripy Lightbulb CIC. Sally has had ME/CFS herself since 2006 and has been a global advocate for over five years.

She recently attended The OT Show to meet OTs and let them know about the online training courses her company offers. The show was a great success and Sally reported having a great number of positive conversations with OTs to educate them on ME/CFS.

Here she explains why the knowledgebase around ME/CFS must be improved in the healthcare professions and why OTs are perfectly placed to help patients living with ME/CFS.

ME/CFS TrainingThe OT Show last year was a great success for Stripy Lightbulb CIC. Our stand was certainly a hive of activity over the two-day event and it was great to meet so many occupational therapists. We had many powerful conversations with OTs who recognise that the knowledgebase around myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) needs improvement. Many of you spoke of having ME/CFS patients under your duty of care but acknowledged that you know very little about the condition. This is not surprising as worldwide only around 5% of medical students learn about ME/CFS in medical school, despite it not being a rare illness.

ME/CFS affects over 250,000 people here in the UK (1 in 500), around 25,000 of those are children and young adults. ME/CFS does not discriminate in terms of age, race, or gender; though women are more prone at a ratio of 3:1. ME/CFS is an invisible disability and is very often shrouded in stigma and disbelief. It is a complex and poorly understood condition with a controversial and complicated history. Because of this, patients continue to wait for progress in terms of a diagnostic test, treatments, a cure, and increased understanding. The World Health Organisation (WHO) categorised ME as a neurological condition four decades ago in 1969, however a significant majority of medical professionals still believe ME/CFS to be psychosomatic.

One important political argument to consider is the controversial UK research study, the PACE trial, that recommends Graded Exercise Therapy (GET) as an ‘effective treatment’ for ME/CFS. The resulting NICE guidelines are being reviewed at the end of 2020 due to substantial evidence submitted by scientists, researchers, ME/CFS charities and patients highlighting that GET has caused symptom severity to worsen in many participants of GET. In terms of how to deal with the PACE trial issue, we believe that the sooner healthcare professionals, including OTs, cease recommending the ‘treatments’ to ME/CFS patients the better. Potentially, many more thousands of patients could be harmed before the NICE guidelines are reviewed and hopefully updated in 2020. To be clear, there are no effective treatments for ME/CFS worldwide and only 5% of patients fully recover naturally without intervention.

At a basic level, ME/CFS-affected bodies are unable to create or manage energy effectively, patients have an inability to recharge. This makes Post-Exertion Malaise (otherwise known as Post-Exertion Neuro-Exhaustion) the key characteristic of ME/CFS, it is unique to the illness and is related to our energy production issues. Scientists don’t yet understand why this is, but physical evidence of disease has been found in the brains, guts, and blood of patients.

What is the first thing patients want from OTs?

Patients want to be believed and for the seriousness of the condition to be acknowledged. Chantelle Martin, senior occupational therapist, Sussex Community Foundation Trust states:

Patients I work with have described being “let down” or having “given up” with healthcare professionals. The focus has been on identifying the cause, often involving harrowing questioning searching for abuse history or prescribing fatigue treatment using graded exercise programmes that they feel “make me worse.” Many patients cannot access specialist services as they do not meet requirements for the team or cannot physically get to programmes or appointments so do not bother.”

Anything that can be done to limit the energy required to attend OT appointments would be welcomed by the patient community. An obvious way to save energy would be to offer home visits for moderate and severe patients, but we recognise the time and financial implications of doing this. For those more severely affected, attending appointments may well cause a flare that could last weeks, if not months. It is rare for occupational therapists to see how ME/CFS affects patients, as in the majority of cases, patients will have rested for days in preparation for expending energy during their OT appointment, you are likely only to see ME/CFS-affected patients on ‘better’ days.

Patients are seen when they have rested, and not when they have ‘crashed’ due to Post-Exertion Malaise (PEM) 24-72 hours later. Unless a home visit is undertaken during PEM you will not see the full extent of how ME/CFS affects patients. If an appointment coincides with PEM, the patient would be forced by very bad health to cancel the appointment. PEM cannot be overcome or ‘pushed through’ as the patient is entirely devoid of energy.

Chantelle Martin highlights the part that OTs can play in the recognition of ME/CFS: “OTs are in a prime position to support, advocate and empathise with an individual’s lived experience. Our occupational science theory base and knowledge of assessing not just the person and their symptoms, but the environment and the occupations an individual needs and wants to do, should mean we are well equipped to help and support, but we need to apply these skills in our conversations and treatment plans.”

At the current time, many OTs do not have the knowledgebase to enable to them to apply their skillset to patients with ME/CFS. The patient community can only progress through the education of those who have a duty of care over them and with the long overdue recognition that ME/CFS is neurological not psychological. Our CPD accredited e-training is improving the lives of ME/CFS patients by educating those who have a duty of care. It’s time for change.

Visit stripylightbulb.com for more information and check out Sally’s website mefoggydog.org that concentrates on raising awareness of ME/CFS.

Stripy Lightbulb CIC are offering readers of The OT Magazine a £20 discount off any e-learning course, simply enter code 20off at the checkout when purchasing the course at stripylightbulb.com.

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