May Awareness and Fundraising for Invest in ME Research

May Updates

Thank you for checking in on our blog for May 2016 ME Awareness and Fundraising for the charity Invest in ME (Research).

We plan to add updates here throughout the month so please contact us to add news of your events. If you’d like to write a guest post, just send us the text and any photos to include, or simply support by sharing the links throughout the month. Also see Fundraising 2016.


The whole month of May is dedicated to awareness of ME (Myalgic Encephalomyelitis). ME Awareness Week 2016 runs from 9th to 15th. May 12th is International Awareness Day for ME and other Chronic Immunological and Neurological Diseases.

The late Thomas J Hennessy was the founder of May 12th, chosen as it is the birth date of Florence Nightingale, who suffered a chronic illness for much of her life, believed to be ME. Outbreaks were recorded since 1934, but it was not until an outbreak at the London Royal Free Hospital in 1955 that the illness was named myalgic (muscle) encephalomyelitis (inflammation in the brain and spinal cord). It was included as a neurological disorder in the 10th revision of the World Health Organisation International Classification of Diseases in 1969, along with post-viral fatigue syndrome (WHO ICD-10 G93.3).

All the more remarkable that well into the 21st Century no diagnostic lab tests or medical treatments have been approved to address the underlying disease process. Patients and doctors have to go around the houses testing for other possible causes of the symptoms and resort to sticking plasters to try to manage the many disabling symptoms. Meanwhile, all manner of well-meaning (and not so well-meaning) myth and magic abound in the fields of media and medicine. Ten years ago, that was about to change.

In May 2006, a small group of patients and parents determined to change the way that ME is perceived and treated registered as the charity Invest in ME. “They are an inspiration for the world, wrote Dr. Leonard A Jason and Zachary Siegel of Depaul University, Chicago, USA.

“10 years of Invest in ME’s dedication to advocate for a marginalized group and the determination to allocate funds in a neglected field needs to be acknowledged and applauded.

This organization has been working in the trenches of ME, and it has been a notable and significant contribution to the field.

Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done. They are an inspiration for the world”.

Dr. Leonard A Jason and Zachary Siegel, Centre for Community Research, Depaul University, Chicago, USA.


Thanks to each and everyone for whatever you do for ME in May 2016, whether you or your friends and families are able to take part in events, or to support what others are doing by donating or simply sharing the links to help spread the word. Invest in ME is a small charity run entirely by dedicated volunteers and we really appreciate everyone supporting them. Here are some things you can do.

Thanks to Lynne Allan & Alison Orr who ran special offers for the month at ME2UDezignz & Cards 4 Invest in ME & congratulations to Laura Chamberlain on her article published in the June issue of Vintage Life Magazine.

Please browse our site & share widely.

To simply donate – click here – or text BMER99 £1 to £5 or £10 to 70070

Thank you for your support!


May ME Awareness & Fundraising for Invest in ME Research
May ME Awareness and Fundraising for Invest in ME Research