Hard to believe

Isn't it just staggering how official  UK Policy  towards ME  fails :

  • To accept that ME is classified by the World Health Organisation (ICD10: G93.3) as a neurological disease.
  • To clarify that Graded Exercise Therapy is harmful/unhelpful to a high proportion of ME sufferers.
  • To clarify that ME is not caused by abnormal illness beliefs.
  • To clarify that ME cannot be diagnosed without physical (neurological) signs.
  • To clarify that ME, the neurological condition, differs from the mental illness Chronic Fatigue in:
    2. The epidemic characteristics
    4. The known incubation period
    6. The acute onset
    8. The associated organ pathology, particularly cardiac.
    10. Infrequent deaths with pathological central nervous system (CNS) changes.
    12. Neurological signs in the acute and sometimes chronic phases.
    14. The specific involvement of the autonomic nervous system.
    16. The frequent subnormal patient temperature.
    18. The fact that chronic fatigue is not an essential characteristic of the chronic phase of ME.
  • To clarify the numerous physiological and biochemical abnormalities found in ME.
  • To clarify  that only a very small percentage of patients are likely to see full recovery or remission (according to US statistics provided by the Centre for Disease Control, only 4% of patients had full remission (not recovery) at 24 months.)
  • To clarify that recovery from severe ME is extremely rare, about 6-10%.
  • To clarify that many ME patients actually have more derangement of the brain, on a biochemical level, than Parkinson's or Alzheimer's patients.
  • To clarify that although there is no single diagnostic test there is an abundance of research which shows that ME is an organic illness which can have profound effects on many bodily systems.
  • To clarify that that ME is a life-long disability . Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and, sometimes ME is fatal.
  • To clarify  that the "belief that exercise is damaging" is an extremely valid one for the severe ME suffer.
  • To clarify  that the Oxford Criteria  has attracted much international criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise to be diagnosed as ME.
  • To clarify  that the incidence of ME is rising;  no other disease surpasses the rate of increase.
  • To clarify  that all auto-immune disorders have a female preponderance due to hormonal influences.
  • To clarify  that Cognitive Behaviour therapy (CBT)  is harmful/unhelpful to a high proportion of ME sufferers.
  • To provide a true description of the level of disability experienced by the severely affected.
  • To acknowledge that there are serious cardiac issues in ME.
  • To provide any description of the multiple and complex personal care and mobility needs of the severely affected.
  • To acknowledge that the severely affected require care 24/7.
  • To acknowledge that the person with severe ME spends their day in great suffering.
  • To acknowledge that people are so physically impaired that they need physical facilitation, emotional support and enabling in order to survive on a daily basis.

..and even all this bears very  little relationship to the full force of suffering  that I witness every day. There are depths to Severe ME that have not even begun to be researched;of that I am certain.


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