Why are we needed?

1) ME affects approximately 250,000 people in the UK yet doctors are not taught about it at medical school.

2) ME research is hugely underfunded.

Number of Research Papers 2018

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3) The limited ME Research that is funded is biased in favour of biopsychosocial papers that provide no benefit to patients.

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4) Patients quality of life is the poorest of all these illnesses.

Quality of Life

Source: The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) 


5) The psychological model is still used in the UK, even though ME is classified as a neurological disease by the World Health Organisation and the UK government claims to accept this classification.

NHS ME Treatment

Source: NHS England website


6) Abuse and stigma is common, resulting in patients being marginalised and facing increased risk of depression and suicide as shown in this research.


7) The average time for patient assessment is 3 yrs 4 months (though for many a diagnosis can take much longer), there is a lack of clinical specialists and the current cost of, ineffective at best, harmful at worst, treatments is £1,000 per person. The cost to the economy in 2014/15 was £3.3bn (based on a prevalence rate of 0.4%) which includes healthcare and medication, informal care, loss of productivity and welfare payments. Informal care is the largest cost.

Source: Counting the Cost 2017


8) ME is the largest cause of long term absence from school and many children are denied an education as a result (see this survey).


9) Parents of children with ME can be accused of Fabrication or Induced Illness (FII), a form of child abuse. Children are taken away from their parents and made to undergo inappropriate treatments that can worsen their ME. Parents are discouraged to challenge this or any other aspect of their child’s care or education for fear of retaliation. Tymes Trust has successfully defended 225 families falsely accused so far.


10) Benefits to patients are frequently denied and insurance companies either don’t cover ME/CFS or often require patients to partake in CBT/GET before being eligible. This can result in patient health worsening and their struggling for income and support.


11) There has been little progress in the last 30 years concerning treatment, and patients may now receive the label MUS (Medically Unexplained Symptoms) or FND (Functional Neurological Disorder) as another way of dismissing their illness. 


You can watch the full length film ‘Voices from the Shadows’ here