SEVERE M.E. DAY

Bonjour, 

This blog is dedicated to all those who are suffering with Severe or Very Severe M.E. (Myalgic Encepahlomyelitis) and to all of those who have died because of this illness. 

I want to give voice to those who are unable to do so, especially those friends of mine who have severe M.E.  I don't have severe M.E. myself and I'm mostly moderate. I have suffered periods when the level of my illness has deteriorated to a more severe level but for me it has only been short lived. 

The 8th August is Severe M.E. Day and aims to raise awareness of the suffering, stigma and lack of support for people with severe M.E. 

This important day of awareness was started by the 25% M.E. Group in 2013. 

The 8th August was chosen as it marks the birthday of Sophia Mirza, a British artist who died from severe M.E. The inquest recorded the cause of death as renal failure arising from the effects of Chronic Fatigue Syndrome. Read her tragic story here

' neuropathologist testified at the inquest that four out of five of Mirza's dorsal root ganglia – structures in the spinal cord involved in perceptions of touch, temperature, body position and pain – showed abnormalities and evidence of inflammation (ganglionitis). A neurologist who consulted on the inquest stated the changes in the spinal cord may have been the cause of the symptoms Mirza experienced as part of her ME/CFS.' 

Sophia was bedbound, severely ill, and tragically a victim of medical disbelief and mistreatment. Denied the care she needed, she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care. Sophia subsequently died of ME at the age of 32. Her story remains a devastating reminder of the dangers of ignorance and neglect.

Around 25% of people with M.E. are severely or very severely affected. This means that they are often;

• Housebound or completely bedbound
• Unable to tolerate light, sound, touch or movement
• Too ill to use a wheelchair or leave their homes
• In some cases, people are tube-fed, incontinent or non verbal
• Many are left without access to medical care, as home visits are refused and hospital visits are impossible

We need to challenge the stigma and misinformation, emphasise the need for better research, recognition and respect and make it clear that M.E. is not psychological but a devastating neurological disease. Please join me in awareness raising by sharing my blog or other accurate information as well as advocating for proper care, research and recognition.

Thank you

The French Femme

CARRY ON CAMPAIGNING

Bonjour,

I'm sorry that it's been a while since my last blog but I've had a break and enjoying lots of sport on the tv. 

It's now Severe M.E. Awareness week and I'm back to advocating for M.E. (Myalgic Encephalomyelitis). 

For me it's a case of 'Carry on campaigning' for better awareness, understanding and acceptance. 

Some of you may know about or have watched the Carry on films. They are part of a British Comedy franchise that started in the 1950s. 

The stock-in-trade of Carry On humour was innuendo and sending-up British institutions that the target audience would have personally experienced or been knowledgeable of, such as the National Health Service (Nurse, Doctor, Again Doctor, Matron)

I have all the films on DVD and I still love a good laugh now and then. 

BUT having a chronic illness like M.E. is no laughing matter. 

I sometimes reach a point when I wonder if it's still worthwhile to continue this campaign. I ask myself 'am I making a difference?. It takes a toll on my own level of health. 

Then I read about another death, a suicide or a terribly sad story of someone barely surviving with M.E. 

I read about the continuing neglect and abuse that still goes on. 

I read about those with severe M.E. or very severe M.E. who have no life at all. 

I reflect on my own life over the last 24 years and wonder if I'll ever see a breakthrough in science and there will be a clear single diagnostic marker and effective treatment available. Maybe it's going to be too late for me but I have hope for others. 

While I'm still alive I will continue my campaign. 

In the meantime I'll enjoy some of those carry on films. Perhaps you might be able to do the same. 

À bientôt 

The French Femme