Instead of sending out a newsletter just once in December we have decided to send out a daily newsletter associated mainly with our Advent Calendar for ME - designed to raise awareness of ME.
The advent calendar is contained on our micro-site for the Christmas / New Year Fund Appeal, to develop the Centre of Excellence for ME.
Days 1 - 6 are now already open.
Advent Calendar for ME - Day 6
Doctors and Patients with ME Another issue facing patients with ME is their treatment by doctors.
ME is a complex disease and doctors are challenged to understand this condition, let alone able to treat it.
With poor training being given to doctors, due to non-existent or faulty medical curricula and out of date cpd training, a lack of bio-markers, and no possibility of treatments due to insufficient funding being sanctioned for fundamental biomedical research, then a patient risks being ignored - or even worse, being offered deleterious treatments or being misdiagnosed.
When the official state guidelines being imposed for use by doctors are also flawed then patients may be pitted against doctors - one disbelieving the other.
But there have been doctors who broke the mould.
Day 6 of our advent calendar looks at Doctors and Patients with ME.
News of a wonderful donation that has been made to Invest in ME Research - click here
European ME Alliance News
The European ME Alliance (EMEA) is a member of European Federation of Neurological Associations (EFNA).
EFNA organised a workshop in Brussels from 19th to 21st November for young people with neurological conditions.
"Between March 12th and May 15th 2018, 1368 responses to the survey were received from 39 countries. Almost 80% of the respondents were female, with the majority of the responses coming from the below disease areas:
The top concern cited by respondents was ‘access to medication/treatment’, followed closely by ‘isolation’ and ‘stigma’. This isolation and stigma could be attributed to the lack of public understanding of brain disorders."
Invest in ME Research has again secured places for the 2019 Royal Parks Half Marathon.
If you would like to run for the charity then please contact us.
The date of the event is 13 OCTOBER 2019.
This year's event was described here -click here
Our Christmas / New Year Fund Appeal has an advent calendar.
For every day until Christmas Day we shall have an advent window.
So please check every day for a new item - click here
Click on the link to the page and move your cursor over the advent calendar to find this day.
Then click on the day.
This will take you to the appropriate Advent calendar Day.
Please help us promote our appeal on social media and through hospitals, GP surgeries and schools.
Invest in ME Research's Christmas / New Year Fund Appeal
Press Release is here -click here
