People who suffer from Myalgic Encephalomyelitis (ME) are forced
to live in a bubble – isolated from society.
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Misinformation |
ME is a neurological illness.
For decades there has been a coordinated policy
of misinformation about ME presented by vested interests. ME is a
neurological illness accepted as such by the UK government as
directed by the World Health Organisation.
Ireland is the latest country to ban ME patients from donating
blood - the reason being
"to
protect blood recipients (i.e. patients who receive blood)"
Why would this be necessary unless ME were of an infectious origin?
(USA, Canada, Australia, New Zealand, Malta,
Norway and the UK have also banned blood donations from people with
ME)
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Medical
Ignorance |
Too little professional awareness, too much trust
in establishment organisations such as NICE and the MRC, lack of
funding of proper research - all of these contribute to medical
ignorance. This ignorance so often pervades
the NHS. However, things are changing slowly. Aided by the
biomedical research which has been presented at
conferences such as
those organised by Invest in ME and its European ME Alliance
partners the level of knowledge about ME is growing. Biomedical
research has proven beyond doubt that there is a viral origin for
most ME patients. This education will continue. Over 60 outbreaks of ME have been recorded worldwide
since 1934
ME is 3 times more prevalent than HIV/AIDS – twice as
prevalent as MS
25% of ME patients are severely affected -
housebound, bedbound
25,000 patients are children
ME is the largest cause of long term sickness absence
from school for pupils and staff
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Misdiagnosis |
Misdiagnosis is one of the most sinister
consequences of a healthcare system which is based on lack of
funding for biomedical research and which attributes all unknown
conditions to a waste-bin diagnosis.
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Discrimination |
ME patients are dealt a double blow. Not only do
they have to deal with the effects of a neurological illness - they
also have endure the discrimination which is given to patients by
healthcare providers, social services and the DWP. Although the UK
government officially recognises ME as a neurological illness it
allows the disease to be treated as though it does not exist. |
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No Funding of
Biomedical Research |
Since IiME was founded we have been campaigning
for a national and international strategy of biomedical research
into ME. ME patients have no approved drugs for treatment
ME patients have no access to specialist ME
consultants
ME does not discriminate, anyone can be affected
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Government
Apathy |
Each successive government of
recent years could have acted on
the need for more research, for removal of vested interests from
decision-making related to ME, for proper attention to education for
children with ME, for human rights, ....etc The
attitudes of successive ministers of health has, up to now, been
negligent.
The Chief Medical Officers of England have
declined to attend every one of Invest in ME's international ME/CFS
conferences which take place every year just a few hundred metres
from the CMO's office.
The government and the CMO can change this -
yet they continue to do nothing.
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Isolation |
Many people with ME will experience the isolation
that comes with ME. Most parents will see
the awful consequence of this disease as it plays out its effect on
their child/children.
This is one of the cruellest consequences of a
disease which receives no attention, no funding of biomedical
research, no interest from the healthcare providers, no policy from
the government and no sensible or informed reporting from the media. |
