When Will They Learn?

The condition Myalgic Encephalomyelitis (M.E), otherwise known as Chronic Fatigue Syndrome (C.F.S), has a long and complex history. This is covered within our e-training and is explained in simple terms as it is all a bit of a mess.

The complexities mean that the current situation is not working for patients. There are so many problems that need to be resolved before we can even start thinking about finding a cure. These problems include finding a name that is widely accepted as representative of the condition worldwide and getting all medical professionals to recognise and accept that M.E is a neurological condition.

While the very few medical schools who teach about M.E/C.F.S (only 5% of medical students receive training on M.E/C.F.S) continue to teach that M.E/C.F.S is a psychological condition, the M.E/C.F.S community’s struggle rumbles on. Once upon a time, in 1969, yes four decades ago, M.E was classified as neurological by the World Health Organisation and yet medical professionals are still insisting that M.E is psychosomatic with some even continuing to claim that it is ‘female hysteria’ even though men also get M.E. Eye-opening isn’t it? Sexism in medicine is still alive and kicking in medicine. How do I know that it is still happening in modern times? Just this week I found out anecdotally that in Spain, M.E/C.F.S was only mentioned to student nurses in 2017 as a passing comment as part of a ‘Women’s history’ module and modern-day M.E/C.F.S was described as hysteria in that lecture.

In 2017, Freedom of Information requests were submitted by Lesley Scott, Tymes Trust Scottish Officer and Trustee, to all five medical schools in Scotland. In her requests, she asked for all references within the course literature that mentioned M.E, M.E/C.F.S, C.F.S, C.F.S-M.E, or M.E-C.F.S.

The responses received were jaw-dropping. Here is the whole summary.

Here are a few of the responses –

  • During psychiatric placement try and see as many people with chronic fatigue syndrome as possible. If possible, a family assessment will help you understand how the disorder alters
    interpersonal relationships. Also the concept of “illness behaviour” can cause the family to
    help perpetuate the disorder.
  • Patients may benefit from anti-depressant medication
  • Behavioural disorders/Child Psychiatry – Chronic Fatigue Syndrome: Psychosomatic, key diagnosis: abdominal pain
  •  Functional somatic syndromes: Chronic fatigue syndrome. Studies have shown that most of these patients can be given a psychiatric diagnosis; most have depression and anxiety disorders, the rest may be diagnosed as having somatoform disorders.
  • It is useful to regard functional syndrome as psychiatric disorders as they are strongly
    associated with depression and anxiety and they tend to respond to psychiatric treatments. However, most patients do not regard themselves as psychiatrically ill.

Words cannot express how appalled Stripy Lightbulb CIC’s Directors were to read this document. It is very clear that many of the few doctors who are trained on M.E/C.F.S are given incorrect and/or harmful information.

What is it going to take to get medical schools to accept M.E/C.F.S as neurological? Post-mortems on deceased M.E/C.F.S patients have found visible signs of disease. M.E/C.F.S has been registered as the cause of death for a number of patients now.

Worryingly, the views of medical professionals filter across to other sectors such as education and business. This extract, clearly demonstrates why so many family members are being falsely accused of Fabricated or Induced Illness by teachers and social workers,

  • If possible, a family assessment will help you understand how the disorder alters interpersonal relationships. Also the concept of “illness behaviour” can cause the family to help perpetuate the disorder

Until the creation of Stripy Lightbulb CIC, there was no training for education or business professionals worldwide. Information was gained online (PLEASE NOTE: much of the information found online, outside of the M.E/C.F.S ‘bubble’ of charities and advocacy groups, is incorrect or misleading) or by contacting medical professionals for advice. Stripy Lightbulb is aiming to stop the cycle of misinformation and bring about change for the millions of M.E/C.F.S patients worldwide (250,000+ in the UK).

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