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.
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.
Help fund vital genetic research
The charity Action for ME co-led the DecodeME genome-wide association study with scientists at Edinburgh University. This identified 8 genes, all affecting the immune and central nervous systems. It is now raising funds for a detailed whole-genome study that will yield a deeper understanding and blaze a trail to find treatments.
Watch their appeal video on the BBC Lifeline website here
Donate to the appeal here
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 evidence 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.
FUNDRAISING & DONATING – OTHER ROUTES
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
ME Research UK – shopping online
Sell items on EBay for an ME/Fibro charity:
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.
Point your GP or other healthcare professionals to the ME Association’s free resources, including the ME Medical Magazine, the ‘Purple Book’ clinical guide and online training courses:
ME Association – information for healthcare professionals
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.
VOLUNTEERING OPPORTUNITIES
You can join us and help us with advocacy. We work with Healthwatch and the CPFT ME/CFS clinic, aiming to improve medical services for people with ME across the county. We participate in national campaigns to try and improve our treatment by the benefits system. We do this ourselves, but we also work with the UK-wide ME Local Groups Network, MELN.
Alternatively, you can volunteer for the ME Association, including its ME Connect support line:
https://meassociation.org.uk/get-involved/volunteer/
SUPPORT ME/FIBRO CHARITIES
Join the ME Association:
https://meassociation.org.uk/product/membership/
Join Action for ME:
https://www.actionforme.org.uk/support-us/supporting-membership/
