DON’T LET US DOWN!


Sadly this is a list of some of the ways people with Very Severe ME are let down:

Families who do not seek to truly understand Very Severe ME, let us down. Friends who walk away, judge, blame or just get tired of people with Severe ME, as being too difficult to connect with, let us down. Neighbours who chose to ignore the needs of people with Severe ME because they are too inconvenient for them to be bothered with, let us down. Charities who support, in any way, the Biopsychosocial interpretation of ME in any form, by collaboration or validation or simply by not standing up against the misinformation and mistreatment of ME, let us down. Clinicians and other practitioners who chose to follow a psychosocial interpretation and agenda that completely denies the reality of the disease let us down. GP’s and other medical professionals who chose not to do home visiting to those unable to go to them, let us down. Anyone who puts their own opinion and pet theory above the truth of Severe ME, lets us down. Anyone who says, this disease does not exist lets us down. Anyone who says, “but you look so well....” lets us down. Anyone who ignores the reality of people with Severe ME , lets us down. Anyone who chooses to misuse the name Myalgic Encephalomyelitis and change its meaning from an Enteroviral Disease to a generalised fatigue state lets us down. Anyone who believes there is no underlying pathology to the disease, lets us down. Anyone who ignores the fact that paralysis is a very real symptom of people diagnosed with Severe/Very Severe ME, lets us down. Anyone who negates the reality of a person diagnosed with Severe ME and mistreats them as a consequence, lets us down. Anyone who misinterprets people with Severe ME, lets us down. Anyone who mistreats people with Severe ME, lets us down. Anyone who misdiagnoses people with Severe ME, lets us down. Anyone who misunderstands people Severe ME, lets us down. Anyone who denies Severe ME, lets us down. Anyone who collaborates with people who deny the physical reality of Severe ME, lets us down. Anyone who denies the underlying pathology to the the disease, lets us down. Anyone who does not provide ongoing Clinical Support to people with Severe ME, lets us down. Anyone who does not listen to people with Severe ME, lets us down. Anyone who does not teach correct information about the disease, lets us down. Anyone who leaves people with Severe ME neglected with little or no proof of the severity of their illness, lets us down. Anyone who pretends to consult, but not following through with the findings, lets us down. Anyone who is up to date with medical research and information about Severe ME, lets us down. Anyone who uses poor research criteria, lets us down. Anyone who ignores patient input, lets us down. Anyone who does not create a biomedical health pathway for people with Severe ME, lets us down. Anyone who writes wrong reports about people with Severe ME, lets us down. Anyone who is self-justified in their ignorance, lets us down. Anyone who fails to reach out to people with Severe ME , lets us down. Anyone who is not committed to staying with and helping people with Severe ME, lets us down. Anyone who allows people with Severe ME to be underfunded for basic living needs, lets us down. Anyone who ignores the key symptoms of Severe ME, lets us down. Anyone who plays down the severity or experience of Severe ME, lets us down. Anyone who leaves the most ill to get on with it alone in isolation and separation, without the ability to speak up or help themselves, lets us down. Anyone who is hostile to people with Severe ME, lets us down.

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