Why are we needed?

1) ME research is hugely underfunded.

Number of Research Papers 2018

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2) Of the little ME Research that is funded it is biased in favour of biopsychosocial papers that are of no benefit to patients.

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3) 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) 


4) The psychological model is still used in the UK, even though ME is classified as neurological by the World Health Organisation and the government insists it acknowledges this.

NHS ME Treatment

Source: NHS England website


5) Abuse and stigma is common which results in patients being marginalised and at an increased risk of depression and suicide as shown in this research.


6) Average time for patient assessment is 3 yrs 4 months (though for many a diagnosis can take much longer), there are a lack of clinical specialists and current wasted cost of ineffective at best, harmful treatments at worst is £1,000 per person. The total cost to the economy in 2014/15 was £3.3bn.

Source: Counting the Cost 2017


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


8) Parents of children with ME can be accused of Fabrication or Induced Illness (FII), a form of child abuse. Children are then taken away from their parents and made to undergo inappropriate treatments that can make them worse. Parents are discouraged to challenge this or any other aspect of their childs care or education for fear of retaliation.


9) 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 results in patients becoming worse and struggling for income and support.


10) There has been very little progress in the last 30 years, and now patients may 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