Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis

severely ill bedbound ME patients Posted by Jo Best @ Let’s do it for ME ! 8th August 2013 marks the first Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis.  This idea was conceived by Diane, mother and carer of Lili, and has been launched by the 25 percent M.E. Group.   Diane’s account of Lili’s story may be read on Invest in ME website (click here).

25% of people with ME fall into the range of severe and very severely ill.  8th August was chosen as this is the birthday of Sophia Mirza, who died from very severe M.E.  in 2005 aged 32 and would have celebrated her 40th birthday this year.

Sophia was among those who paid the ultimate price for medical mistreatment as consequence of the medical ignorance and psychiatric dogma that causes suffering to this day, and which the Invest in ME strategy for biomedical ME research and education of the healthcare profession aims to address, and this is why they have our full support for the work they are doing, as it will help bring an end to unnecessary suffering and untimely deaths.

Professor Malcom Hooper and Margaret Williams wrote in a recent statement:  “The charity Invest in ME has provided a truly remarkable opportunity to address one of the biggest medical scandals in history and to remove what in 2007 Alex Fergusson, Presiding Officer (Speaker) of the Scottish Parliament, referred to as “the cold grip of psychiatry” on myalgic encephalomyelitis (ME), which he said was “still far too deeply rooted in the world of ME” (http://www.meactionuk.org.uk/Defiance_of_Science.htm).” (click here).


In the press release announcing the launch of our campaign two years ago, we paid tribute to Sophia and Lynn Gilderdale.

The privately commissioned specialist neuropathology post-mortem examinations on both young women showed evidence of damage that warrants the World Health Organisation classfication as a neurological disease of the correctly named benign myalgic encephalomyelitis – benign as it is not fatal within a short time – hence the many years of unnecessary suffering that can ensue as a result of medical misunderstanding and mismanagement.  Just one such death is one too many, but there have been many more and the suffering of countless others is ongoing.  Behind the fun of our campaign lies a very serious purpose.  We aim to educate medical students, doctors and other health professionals about the facts of this disease and what is known from the ongoing research, so that they may be in a better position to treat patients correctly and at least do no harm if they are unable to prescribe effective treatments.  The National Institute of Clinical Excellence guideline for ME is in urgent need of updating and particularly with regard to severe ME. Read more>>

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