ME AWARENESS MONTH 2011

BURST OUR BUBBLE

 

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble – isolated from society.

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)

 

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

 

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.

 

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.

 

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

 

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.

 

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.

 

It is time for this to end.

Help us Burst Our Bubble

www.meawarenessmonth.org

 


 

Ways to help Burst Our Bubble

Download our Awareness Poster here (in black or white versions) and distribute it for ME Awareness Month
(click on the image below)
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 others' campaigns - if we have the financial resources to do so

Buy or sponsor a copy of Lost Voices - the best book to describe ME, its effects on patients and families and the history of the disease - with contributions from Professor Leonard Jason, Dr John Chia, Mrs Annette Whittemore and others. Experiences and pictures from severely affected patients and their families
(click on the image below)

 

Get your GP or  local clinic or even a nurse to attend the Invest in ME conference
(click on the image below)

 

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.
(click on the image below)

 

Or use the other ideas included in our Help Us page - click here.

 

 

 

 

 

 

 

 

www.investinme.org