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 

YET ANOTHER 31 DAYS IN MAY

Bonjour,

It's that time of year when we are arriving at May and a month of raising awareness for M.E. (Myalgic Encephalomyelitis) and other chronic illnesses. 

This year, once again, I'm aiming to raising awareness and better understanding of my illness M.E. (Myalgic Encephalomyelitis) through my poetry. I'm also aiming to raise funds for the charity Invest in ME Research.

With that aim in mind I've compiled a selection of mostly short poems for a new book to be available in May 2026.

This is the third book of poems that I've self published expressly in May to coincide with awareness month. My first book of poems was entitled '31 days in May' and published in 2019. My second book of poems was entitled 'Another 31 days in May' and published in 2022. This, my third book of poems, is entitled 'Yet another 31 days in May'.

Each book includes 31 poems - one for each day in May. Most of the poems are short and easy to read. My poems are about living with M.E. and attempt to express the harsh reality of living with this long term chronic illness.

I will be donating all the proceeds of the sales from these three books in May to the charity Invest in ME Research. I have a Just Giving Page for that purpose here

All my books are available on Amazon in both paperback and kindle versions. They are also available in most countries around the world. 

Here is the link to my books 

In previous years I've also shared one poem each day on social media from my books. But that takes a lot of my energy and so have decided not to do the same this year. 

However, if you buy any of my books you can read one poem a day throughout May. 

So please support me and Invest in ME Research. 

Thank you 

À bientôt 

The French Femme 

NEITHER HERE or THERE

 Bonjour, 

I recently wrote a poem entitled 'Neither here or there' which mostly relates to me and those with moderate M.E. (Myalgic Encephalomyelitis). I've been ill for almost 24 years now and seem to have stabilised on a moderate level. I had a severe onset, some partial recovery which enabled me to work for a while but then it became evident that if I continued to push myself to work I would end up more severely ill. Therefore I stopped work and conceded that my health had to come first. Since then I've had a remitting and relapsing form of this illness. However, my baseline or my normal 'setting' is usually moderate. This means that I'm unable to work, need a lot of rest and restricts my daily activities. The majority of the time I'm housebound. A baseline is what you can do without causing a crash or a relapse. This requires careful management with rest and pacing. 

According to some of the estimates about a quarter of those living with this illness fall into the mild category, a quarter falls into the severe or very severe category and half fall into the moderate-to-severe category. The latter is me and my life. 

Having severe or very severe M.E. must be like a living death. Yet those with moderate M.E. see a decrease in their activity level by at least 50%. That's quite a significant loss. 

Personally I find it a constant battle to manage my illness. There are times when I can go out and of course I look perfectly fine. Then the assumption is made that either I've recovered or I was never ill in the first place. They have no idea how I have to plan any activity, how I have to rest beforehand, rest afterwards and take painkillers. This is the problem with an invisible illness. 

In my poem I try to express how it feels for me. It's as if I'm stuck on the same setting - unable to work but my life severely limited. There are times when I may see a small improvement but then something comes along and sets me back into a relapse. This happened to me recently when I caught a very nasty cold and cough virus. I went below my baseline and it took many months to get back to where I was before the virus. That can be very frustrating and distressing. 

Yet despite all the careful management of my illness I see no signs of a complete recovery. I feel stuck and don't think that I'll ever find my way back to that healthy person I was 24 years ago. That's my reality. And that sentiment only increases with age. 

À bientôt 

The French Femme 

START AGAIN

Bonjour, 

 As this my first blog of 2026 I would like to begin by wishing you a Happy New Year. In my last blog I wrote about moving from the darkness to the light. Indeed I was hopeful at the end of 2025 but then as 2026 arrived everything changed again. I caught a horrendous cold and cough that lasted for all of January into the early weeks of February. This virus has just about gone but left me with a lowering of my baseline. The awful wet and gloomy weather has done nothing to help me or lift my mood. Only now do I feel that I'm getting back to the energy levels and hope that I expressed in my last blog. 

A new year can motivate some people to make new resolutions to start again. I had no such thoughts. For me it was just a case of surviving. And for people with M.E. it feels like just more of the same. It seems endless. 

I myself am on the brink of my 70th birthday and soon to reach my 24 years anniversary of becoming ill. I'm more fortunate than some in that the level of my illness is mostly moderate. Still even that means a huge reduction in my ability. I have lived with this illness for close to a third of my life. 

There are days when I wish that I could hit the reset button, go back in time and start over again. 

With increasing age I begin to doubt if anything will change for me in my lifetime. Time is running out. Still despite this I want to continue to raise better awareness and understanding for M.E. So I'm trying to formulate a project for M.E. Awareness week in May. It all depends on so many factors. Watch this space!

However, before that I plan to have a little celebration for my 70th birthday. Then all being well I hope to get back on track and plan my next project. 

À bientôt 

The French Femme