ME is a very neglected illness. Many medical professionals know little about it beyond being aware of something called ‘chronic fatigue syndrome’. This was the name given to it by psychiatrists who wanted to treat it as being ‘all in your head’. As a result of this there is often prejudice, and it is greatly under-researched.

Petition government to earmark funding for research

Sign the petition!

Hundreds of thousands of people were already living with the chronic post-viral illness ME/CFS before the covid pandemic. COVID turned out to be highly effective at producing chronic post-acute illness: about half of the estimated two million people now living with Long Covid in the UK have all the symptoms of ME/CFS. Three quarters of sufferers are too ill to work or to be in formal education or training. A quarter are housebound or even bedbound and heavily dependent on care. 

The burden on the economy of having so many people unable to work or train, some reliant on the care of others, will be measured in billions. The cost of ring-fencing funds for an effective research programme would be measured in millions.  

Living with ME/CFS is utterly miserable. Government investment in research could transform the lives of huge numbers of its citizens, enabling them to return to being active members of society and contributing billions to the economy. It makes sense on both the human and the economic level; to allow the present situation, in which ME/CFS research is massively underfunded compared to less common and less disabling conditions like multiple sclerosis, Parkinsons and rheumatoid arthritis make no sense at all. 

Thanks to the psychologisation of the disease in the 20th century, there is still enormous prejudice in the medical and research communities: People with ME/CFS are “either depressed or mad” according to one senior medical researcher at Cambridge, based not on experience but purely on institutional prejudice. This appalling reality is the reason that next to no research gets funded, and very few researchers are willing to risk their careers and reputations by getting involved. 

This will only change if the government commits to ring-fencing research funding until the illness is understood, and effective treatments are found.

Please sign!

FUNDRAISING & DONATING

Share or donate to ME research:

Support ME Association when shopping through Easy Fundraising 

https://www.easyfundraising.org.uk/causes/mea/…

Support ME Research UK when shopping through Give as you Live 

https://www.giveasyoulive.com/…/R9UoYAkxjn1KlO7AZ4Cd9B…

Support an ME/Fibro charity through Amazon shopping via Amazon Smile:

https://smile.amazon.co.uk

Sell items on EBay for an ME/Fibro charity:

https://charity.ebay.co.uk/

HELP EDUCATE MEDICAL PROFESSIONALS

There is a huge need to raise public awareness, to educate medics, and to raise funds for biomedical research. The benefits system makes little allowance for the incapacity of moderate, severe and very severe sufferers and many assessors do not understand ME. Sufferers often run out of energy before they succeed in obtaining support.

Get the ME Association to add your GP or other specialists to their mailing list:

https://meassociation.org.uk/…/me-awareness-let-us…/

Get the ME Association to send your GP or other specialists the Purple book on ME:

https://meassociation.org.uk/abou…/policies-and-documents/

Get the ME Association to contact your GP or other medical professionals about the online training course:

https://meassociation.org.uk/…/me-awareness-new-cpd…/

Get Fibromyalgia UK to send your GP or other medical professional an information pack:

http://www.fmauk.org/…/658-have-a-medical-pack-sent-to…

Last but by no means least, sufferers need understanding. Many have suffered disbelief and prejudice from the very services that are supposed to help, which in addition to often severe disability and isolation can be devastating.

There are many ways you can take action, from donating to ME patients’ organisations when you use your credit card to active campaigning. Here are some suggestions.

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