From Invest in ME -
People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble – isolated from society.
A bubble formed from -
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)
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
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.
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.
No funding for 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
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.
Many people with ME will experience the isolation that comes with ME.
Most parents will see this 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.
It is time for this to end.
Help us Burst Our Bubble
For ME Awareness Month May 2011 we ask for support to raise awareness of these issues by distributing our leaflets to all healthcare providers, politicians, journalists and to family, friends and others.
Burst Our Bubble
Download our Awareness Poster (in black or white versions) and distribute for ME Awareness Month:
Black - pdf: http://bit.ly/gqeMYE
White - pdf: http://bit.ly/eD2KS3
Invest in ME will also be sending out these as leaflets during ME Awareness Month. We are happy to provide leaflets to groups and to support awareness campaigns (if we have the financial resources to do so)
There is no centre of excellence in the UK that treats and researches ME as a physical illness.
UK Charity Invest in ME wants to change that - Please Help Us
Support our efforts to get a UK centre for examinations and biomedical research into ME.
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ, UK