The Neglect of People with Severe ME

Questions are, at last, being asked about the lack of care for people with Severe ME, following the
death of Emily Gregg, a young policewoman, who became paralysed,  bed-bound and spent much of her time in the dark, with ear protectors on,  with  no clear care pathway.

The only available  "specialist" service was located in a locked unit for people with mental health problems.

The West Sussex Coroner conclusion was that awareness and care services for chronic fatigue syndrome were insufficient. She is reported as saying that she will write to the doctor about her “ concern nothing more was done to diagnose her illness."

We have been raising the issue of a lack of an appropriate service for people with Severe ME, for years, specifically that :

  • The most ill and vulnerable who are often too ill to access any service are not getting their basic care needs met :
  • There is no biomedical service for people with ME, no specialists who even begin to comprehend the horrific reality and profound environmental hypersensitivity that the most affected experience. 
  • There is not adequate respect for the disease, nor even appropriate normal medical testing performed on people with an ME diagnosis.  
  • It is impossible now to know with accuracy who genuinely has ME, a neurological disease with devastating multi- system dysfunction. The illness itself is interpreted, anywhere from a pure mental health condition,to allergy, to a range of fatigue conditions, as well as correctly, but rarely, as a World Health Organisation classified neurological disease.   
  • There is no Centre of Excellence and no national Biomedical Pathway for Severe ME.

 In March 2015 I had a telephone conference with the Minister of Care, Norman Lamb. This was my agenda :

Conference Call with the Minister of Care

I would like  to discuss how to stop:

  • The ongoing misinterpretation of CFS as equal and the same as Myalgic Encephalomyelitis, resulting in wrong treatment protocols, misinformation ,endangerment of health and lives, confusion , a lack of medically aware practitioners, a lack of clinical  understanding of the full disease and how to medically support and treat it .
  • The ongoing misrepresentation of ME as a vague fatigue condition, treatable with CBT, GET , controlled with sleeping pills and pain killers, which has resulted in the  complete neglect of the most severely affected, who have multiple  physical symptoms  and complex system dysfunction.
  • The ongoing misdiagnosis of ME and other possibly treatable diseases, under the vague CFS criteria, which encompass a wide range of poorly defined and poorly investigated illnesses -including Chronic Lyme and other rare diseases, leaving the field wide open for psychiatry to dominate and wrongly influence health provision.
  • The fatigue advice currently being propagated  by the NHS, leading to mismanagement and deterioration in genuine ME sufferers.
  • The ongoing potential to mistreat ME patients, under the banner term “CFS/ME” whose only likely option still is a fatigue clinic with a psychosocial pathway - or  no treatment whatsoever -often the safer route, especially for the most ill.
  • The ongoing prejudice, especially in neurology which blocks deeper investigation, including the possibility of testing for rare diseases such as Periodic Paralysis and Mitochondrial Disease, which could lead to possible treatment and  recognition of common symptom pathways.

The crisis looming  :

  • as the younger population get older 
  • the older population of Severe ME sufferers still suffering after decades of utter neglect get older still, needing  medical input for other illnesses , without any clinical understanding of their underlying illness

...with  still no understanding,  no biomedical consultancy and no medical expertise in ME.

All are currently at risk from unsuitable psychiatric input and harm. A commitment from the government and  the NHS to create and see through the provision of a biomedical service and new clinical care pathways, especially for the most severely affected is urgently required.

The outcome was that the Minister confirmed that people with Severe ME are entitled to a proper, neurological service. I asked him to tell me who is responsible for the fact that there is such neglect. Of great importance to the ME Community, the Minister's reply was that the NHS is responsible and the person  to raise concerns with is the Director for Long term Conditions.

Greg Crowhurst


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