EUROPEAN ME ALLIANCE SURVEY AND REPORT a summary (part two)

Bonjour, 

Here's my second look and summary of the European ME Alliance survey and report on ME/CFS. It's a huge document and I can only read a little at a time. Plus I think that for those of you with this illness it's easier to understand in small amounts. 

First of all you can check out the first part here. 

You may also like to take a look at the interview done by David Tuller who interviewed the authors of the survey and report 

Symptoms and severity 

Severity 

The survey used a severity scale of the ICC (International Consensus Criteria) 

• mild (approx 50% reduction in pre-illness activity level) 
• moderate ( mostly housebound)
• severe ( mostly bedridden)
• very severe (totally bedridden and need help with basic functions) 

They also added two other categories 

• better than mild but not recovered 
• completely recovered 

The results were 

• 2.4% very severe 
• 16.0% severe 
• 53.8% moderate 
• 24% mild
• 3.7% better than mild 
• 0.2 % recovered 

It was also found that 

• more men than women had mild disease 
• more women than men had moderate disease 
• severe and very severe was a about the same for both 
• the young tend to have a more severe form of the disease
• early onset is a risk factor for severe disease

Symptom burden 

In the survey the respondents were asked which symptoms hindered them most in activities and daily living 

• the most restrictive was symptom exacerbation after exertion (PEM)
• sensitivity to light, sound and smell

Unfortunately cognitive problems (brain fog) was by mistake not included - probably because of brain fog! 

Fatigue that's mostly associated with ME/CFS was not rated as the most restrictive symptom regardless of severity. 

Comorbidities 

• 85% reported having at least one comorbidity 
• the most common being IBS, allergies and fibromyalgia
• plus postural orthostatic tachycardia syndrome (POTS)
• hypermobility or Ehler Danlos syndrome 
• hypermobile type (hEDS)
• thyroid problems 
• diabetes
• mast cell activation syndrome (MCAS) 
• 27% had one comorbidity 
• 25% had two 
• 48% had more than two 

Course of illness 

Little research has been done on prognosis of ME/CFS 

• 46% reported mainly deterioration
• 26% described a course of illness with initial fluctuations then deterioration
• 24% had experienced major fluctuations throughout the course of the illness
• 7% reported improvement 

• only 9% reported improvement during the previous year 
• 29% said they were stable during the previous year  
• 18% had experienced large fluctuations during the previous year 
• 44% reported deterioration in the last year 

Course of illness and disease duration

Among the respondents with a one year disease duration 37% reported experiencing large fluctuations. 

Large fluctuations decreased with disease duration - on average 17% with more than a 4 year disease duration 

Factors impacting the course of the illness 

• biological factors, like age of onset, gender and type of trigger
• how well the disease is accepted by family and friends 
• access to health care, social or financial benefits 
• management strategies 

I hope this format is easy to understand and follow. 

However, if you want to read the full document in your preferred language then follow the link here 

There's still more to come so look out for my next blog.

Au revoir

The French Femme 

xxx 

EUROPEAN ME ALLIANCE SURVEY AND REPORT - a summary (part 1)

Bonjour, 

Between May and August 2021 the European Myalgic Encephalomyelitis Alliance (EMEA) conducted an online survey of ME/CFS patients in Europe.

More than 11,000 people from 44 countries responded to the survey. A small minority were from three non-European countries: the US, Canada and Australia. 

Now the report has been released and translated into 15 languages. 

The full report is very long and obviously difficult for people with ME/CFS to read and interpret. So, as my cognitive skills are reasonably sufficient, I thought that I would provide a brief summary of some of the outcomes from the report. 

AIM 

The main purpose of the survey was to explore similarities and differences across European countries on a number of aspects related to the illness: distribution of patients across variables such as age, gender, severity, diagnosis period, course of illness and factors affecting it, experience with health care systems and other public services, and support from family and friends. 

• 84% of the respondents were female, 15% male, 1% no gender stated 
• the average age of the respondents was 50 years of age

DISEASE TRIGGERS

• infectious diseases was the most common trigger mentioned by 58% of the respondents
• 18% mentioned accident, physical trauma or surgery 
• 4% of the female respondents mentioned pregnancy and birth 
• most associated onset with a single event
• 8% with a combination of events 
• the most combination was infectious disease in combination with long term stress or traumatic life event
• or infectious disease and accident/injury 

YEAR OF ONSET

• 50% became ill before 2009
• on average it took 6.8 years to receive a diagnosis 
• becoming ill varies by age 
• the peak for women is between 35 and 39 
• a smaller peak between 15 and 19
• no similar peaks for men 
• many of those who had been ill for 25 years or more became ill as children 
• data from the survey indicates that ME/CFS often lasts for a long time and in many cases is lifelong 

DIAGNOSIS STATUS AND DIAGNOSTIC PERIOD 

• case definition used, diagnosis guidelines and practices vary greatly across European countries
• the more severe the disease the more likely the respondents received a diagnosis 
• among the severely ill 95% had been diagnosed and 77% among the better and mild group 
• the average age at diagnosis was 39 years of age 
• men on average diagnosed earlier than women

So what are your thoughts on the above? There's more to come from me when I've finished reading and done a brief analysis. 

In the meantime if you feel up to it you can download and read the full report for yourself. Here is the link. Choose your language by clicking on the relevant flag.

 

Au revoir 

The French Femme 

xxx

NEW YEAR REFLECTIONS

Bonjour, 

I'm sorry for the absence of my blog for a while but I had a lot of personal things and health issues to deal with. It then put me into a relapse. I'm only just beginning to recover from that relapse. 

I'll start by wishing you Bonne année et Bonne santé. It's not too late as we are still in the first month of 2024. 

I know it's customary at the start of a new year to reflect and make new resolutions. But surely reflection can take place at any time. In fact it might be a good habit to make regular reflections, to set aside time every week, to pause and take careful thought. Of course you could also keep a journal if that helps. 

Reflection should be honest and maybe the chance to look back and learn. Some of the questions maybe as follows. What am I grateful for? What have I learnt? What could have I done better? 

Therefore, I'm using this blog to take a moment to reflect and contemplate on my own situation and my feelings. 

Looking back I make the following observations 

• don't ignore new symptoms which then lead to other severe health problems
• listen to your body 
• know your limits 
• don't push yourself too much 
• pace and rest 
• don't be afraid to ask for help 
• be more forgiving and understanding 
• learn to appreciate all that you have, despite chronic illness 
• be proud of your achievements, no matter how small 

In recent months I had also started to doubt whether I should continue in my efforts to raise better awareness and understanding of M.E. through my poetry and my blogs. After nearly 22 years of living with M.E. I began to wonder if I could write or say any more. After all it takes a great effort and sacrifice on my part. Is it costing me my health? 

But then something happens to make me think again and change my mind. When I see the never ending suffering I feel that I have to continue. When I see some ridiculous  proposition of how this illness can be cured it makes me angry. When I still come across people who have never heard of this illness. When I come across those who disbelieve in this illness. While there is still not one clear diagnostic test for M.E. and so doubt and confusion remains. 

So in 2024 I vow to carry on, health allowing. I can not give up now. I still have more to do, to write about and to share. 

 

Au revoir 

The French Femme 

    

IT'S BACK, IT'S BIGGER AND BETTER

 Bonjour, 

Six years ago I published my second book of poems 'So many symptoms' about living with M.E. (Myalgic Encephalomyelitis). However, it was published in a hurry to coincide with May M.E. awareness month and was poorly done.  I've been meaning for a long time to go back and remedy that. At last I have succeeded in revamping the contents and the cover and republished. I've added some other poems, gone back and edited some of my poems, added my personal comments under some of the poems, added a contents list, page numbers and many links and references. Plus I found Sam Miller who so kindly volunteered to design a new cover for my book. I would like to thank Sam for her perseverance in creating a stunning cover. I would also like to thank Stacy Hart for writing a very kind and incisive foreword to my book. 

Of course with time and experience I have improved, as is the case with many things in life. You can always go back and improve on something. Besides Amazon is more exigent now in the format and requirements for a self published book. What's more the publishing costs have increased greatly. So that means I've had to increase the price of this book and all other books that I've published. Otherwise there will be no profit margin. I don't make much money for my books and I don't really do this to for monetary gains. I do this to raise better awareness and understanding of M.E. What's more I always donate a percentage of my sales to the charity Invest in ME Research. With each book I set up a Just Giving Page. I wouldn't be able to do that if there was no profit margin. My books are always available both in paperback and kindle versions and the kindle version is much more affordable for those living on low incomes. 

So at last I'm pleased to announce that my book 'So many symptoms' is available on Amazon in many countries throughout the world. 

Here are some of the links to my book  

Amazon UK

Amazon France

Amazon.com 

So many symptoms

There are so many symptoms

that come along with M.E.

which make it extremely hard

to diagnose properly.

 

There are so many symptoms.

How do you know it`s M.E.?

With no one simple, clear test

it seems like a lottery.

 

There are so many symptoms

which are confused with M.E.

No wonder there is much doubt,

delay and anxiety.

 

There are so many symptoms,

that are difficult to see.

So doctor`s don`t believe us

and question our sanity.

 

There are so many symptoms

that come along with M.E.

A complete system breakdown

that affects the whole body. 

 

The poems in my book have been written from my own personal experience of living with M.E. for over 20 years. They are also inspired by and reflect the feelings of so many others who suffer the same as myself. 

I believe that my book is a must read for those living with M.E. or anyone else facing the challenges of a chronic and invisible illness. In this collection of my poems I mainly focus on the symptoms of M.E. and how they affect us.

I hope my poems help friends, family and anyone else wanting to better understand M.E. 

I also hope you will consider buying my book and help to raise better awareness and understanding of this illness, as well as funds to help the research into M.E. 

I would also appreciate it if you share my blog via social media and with your friends and family. Thank you. 

Au revoir 

The French Femme 

 

LOOKING BACK OVER MY LAST TEN YEARS

 Bonjour, 

As we arrive into May awareness week 2023 I realise that I've been writing poetry about living with M.E. (Myalgic Encephalomyelitis) for ten years now. 

A lot has also happened to me personally in those ten years. 

Although in 2013 I was not unfamiliar with writing poetry I wanted to start writing about me and my illness. 

This was, I believe, the start of an amazing feat on my part. I had to overcome all the obstacles linked to M.E. It was to become a very difficult process and one that I wanted to abandon at times. It was a slow learning process with pitfalls and successes. Sometimes it was the cause of relapses. But sheer determination and will power has kept me going. I've been faced with criticism but at the same time I've received some lovely comments and support. 

In the last ten years I've 

• written hundreds of poems about living with M.E. 
• written many other poems, some even in French
• I've written over 100 blogs 
• I've self published 7 books of poetry on Amazon 
• I've set up a page on Facebook 
• I've shared my poetry, blogs and books over many social media sites
• I've taken part in some interviews  
• I've recorded a podcast about me and my life with M.E. 

Phew! I'm not sure how much more that I can do. After all there are only so many ways that you can write about a chronic illness. 

This was the first poem I wrote in 2013 

My first book 'My A-Z of M.E. (Myalgic Encephalomyelitis)' was written and published in 2013. 

My first blog 'Why write poetry about M.E.?' was written and shared in 2013. 

Back in 2013 when I first embarked on my writing projects I was still married to a French man and living in a small village called Juigné des Moutiers in the department the Loire-Atlantique . 

I was so excited and proud when I successfully published my first book of poetry. 

Here I am holding a copy of that book 

However, by 2014 my ex husband decided on a project to buy a caravan, place most of our furniture and belongings in storage and move around France. He hoped to find work as a butcher in different places. I was not keen on this plan but he persuaded me that it would be good for me and would be like a holiday. So I went along with his project. 

The caravan 

In 2014 we started this adventure living in a caravan. At first I loved it and enjoyed seeing new places and relaxing on the campsites. One even had a lovely swimming pool which I was able to profit from. 

However, things soon started to go badly wrong. My ex husband had been diagnosed with Bipolar Disorder and life was hard with him. He often developed problems with people and work situations. He couldn't handle stress very well but neither could I. Every time there was a problem we had to move on to a different camp site. During 2014 we stayed in three different camp sites. The caravan proved to be expensive and there was always something to be fixed or repaired. That added to the stress for both of us. Despite this I made the best I could of the situation. What's more I continued to write poetry and blogs. 

Without going into much detail a crisis was reached in October 2014. Living in a caravan was lovely in the Summer but not in the oncoming Winter. The caravan had never ending problems. The stress reached intolerable levels for me and my ex husband became very depressed. I left him in a case of urgency. I was placed in a studio and helped by an association for the next year or more. I was also helped by a fantastic women's support group. They helped me to find a place of my own and to start over. 

When I felt settled I once more embarked on putting together another book of poetry. Since then there's been no stopping me! 

Now I'm retired, still living in France with my cat. 

I have a few more writing projects planned. 

Until then I think it's time for a small celebration! 

A bientot 

The French Femme 

xxx 

REMINDERS & MEMORIES

 Bonjour, 

Yes it's that time of year again. 

We are approaching Christmas and the New Year. 

For some it can be a happy and joyful time. 

For some it can be a difficult time. 

Some will be spending it alone. 

Some will be facing many challenges. 

Some may not want to or be able to celebrate Christmas and the New Year. 

There maybe painful memories associated with this time of year. 

Perhaps you may fondly look back and are reminded of what this time of year used to be like and long for those days again. 

For those of you with a chronic illness like M.E. (Myalgic Encephalomyelitis) you may be too ill to participate in any festivities.

Perhaps you will be with family or friends who do not understand your illness and its limitations. You may eat or drink too much, especially those things that you normally try to avoid. You may end up becoming more ill or have a relapse in the level of your health. 

I myself will be alone with my cat. I can't help but think of years past and it's just not the same any more. Although, now I at least can please myself and stay in my pyjamas all day if I feel like it. I may have a few nice treats but nothing excessive. I may talk to a friends or family. At least there's no pressure on me to comply with the demands and needs of others. 

Are you going to be with family or friends over the festive season and find it difficult to explain your illness and how you feel? Then maybe you would like a copy of one of my books to help you. 

Perhaps you might like to treat yourself to one of my books. 

I have published books of poetry about M.E. over the last ten years. Some of my more recent books also include poetry on other subjects. 

My books of poetry are written from personal experience of living with M.E. for over 20 years. My books are a must read for those living the challenge of living with a chronic illness as well as M.E. They can also be used to help friends, family or anyone wanting to understand M.E. 

My books of poems are available in paperback and kindle on Amazon throughout the world. 

You can find all my books on my Author's Page as here 

Amazon UK

Amazon France 

As with all my books I donate a percentage of all the sales of my book to the charity Invest in ME Research  and I have a Just Giving Page 

All that remains to be said is I hope that despite everything you will be able to pass a restful and happy time. 

I wish you a Merry Christmas and a Happy New Year 

Au revoir 

from the French Femme 

xxx

REFLECTIONS

 Bonjour, 

I'm sorry that my blogs have been not been frequent this year. Since my last blog I had a bit of a health crisis with a long time for recovery. It made me reflect on my life and my priorities. A book that I've recently read has also contributed to making me reflect on my life and what changes I can make.  

So here I want to review this book and hope that it also helps you to reflect and maybe make some changes. 

It's entitled 'FINDING A NEW NORMAL - living your best life with chronic illness' by Suzan L. Jackson. 

The book is aimed to help you live your best life with chronic illness. Suzan has had ME/CFS, an immune disorder, since 2002 and also has Lyme disease. Both of her sons also became ill with ME/CFS. Her younger son is now fully recovered after 10 years of mild illness. Her elder son still has ME/CFS as well as three tick-borne infections. It's an amazing and positive story of how she has found a new normal for herself and her family. 

On reading the introduction of this book I was immediately amazed that Suzan's life had changed in March 2002 at about the same time that my life also started to change. 

She writes 

'I suddenly felt horrible, with a severe sore throat, aching all over and complete exhaustion. I thought I'd caught the flu, but it never went away' 

This is exactly what happened to me in the Spring of 2002. 

She goes on to say 

' For months my symptoms improved and worsened in a seemingly random pattern' 

This was the same experience for me. I'd recover a little and go back to work and then become worse again and so needing to go back on sick leave. 

Like me Suzan searched for a diagnosis or treatments. Like me she finally found a physician who diagnosed her accurately. 

She writes 

' I had an immune disorder known in the US by the cringe inducing misnomer Chronic Fatigue Syndrome (CFS). Fortunately since then there has been much resistance to the name CFS and a return to M.E. or even ME/CFS' 

In her book Suzan shares her experiences personally as well as that of her family. She shares some valuable advice and help in finding a new normal. She has had to find her own path in living a new life in which she can still be full and happy. With no cure or very little care and treatment we all have to try and do the same as her. This is why I found her book to be a very useful tool in trying to achieve just that. 

Her book deals with emotional coping, daily life, relationships and improving your life. It's full of interesting and helpful tips. Some of these I have already adopted or tried for myself. 

Her book has made me reflect further on my own personal life. She discusses acceptance and hope and how keeping a balance between them is an ongoing goal. I believe that's the case for me and these two words often crop up in my poems and my blogs. 

I've written a poem about acceptance and a blog about turning the negative into the positive . This is much the same as Suzan expresses in her book. 

Acceptance

To say “this illness I accept”

Is such a very hard concept

To accept my life has to change

To accept it can’t stay the same

To accept how I must now live

To try not to be negative

To accept my limitations

To lower my expectations

To accept I need to take care

To accept energy is rare

To accept I need to have rest

To pace myself and do what’s best

To accept new ways of coping

To find better understanding

To not be demanding on me

To reject those feelings guilty

To accept help on a bad day

To be honest in what I say

To accept I’ll have some bad days

And to feel denial and rage

To stop fighting against my fate

To stop my anger and my hate

To again find myself grieving

To mourn that life I’m now missing

To accept does not mean defeat

To know this illness I will beat

To accept is not giving in 

But hope one day this fight I’ll win

To accept part goes to M.E.

To know it can’t take the real me!

I wish I could say “I accept”

But it is such a hard concept  

I further explored this area in another blog 'Can you feel happy with a chronic illness?' 

Happy

I used to be happy

Look forward to each day

Then M.E. came along

And took it all away!

My happiness was gone

Replaced by a grieving

Anger and frustration

And numb kind of feeling.

I thought life had ended

And chance for happiness

With all my days now filled

By this chronic illness

Yet slowly there has been

Acceptance within me

Adjustment of my life

New ways to be happy. 

Of course positive thinking is not always easy and unhelpfully can be claimed as a road to recovery! No amount of positive thinking is going to cure me!!!  

Suzan asks in her book if she should give up all hope of recovery. It's hard to keep on hoping, especially it seems as time goes by and nothing seems much to change. I've also written about 'Hope' and expressed feelings of hope in my poem

Hope

To have a better day

The pain to go away 

Hope

This fatigue will soon end

And my body can mend 

Hope

To find energy

Then start recovery 

Hope

To improve my pacing

Against all I’m facing 

Hope

I find new ways to cope

Which come within my scope 

Hope

To increase more awareness

So disbelief is less 

Hope

That I can work again

And all’s not lost in vain 

Hope

To better understand

This dreadful M.E. land 

Hope

For a future healthy

And at last M.E. free!

In another blog I write 'Holding on to hope and fighting to survive' and more recently I wrote again about 'Hope' 

Personally I try to hold on to hope and I'm generally a positive person. However, as I get older and the years go by I wonder if in my lifetime a cure will be finally found. In the meantime we all have to learn how to live with this illness, including me. That's why I feel that this book by Suzan is a very useful tool in doing just that and I fully recommend it. 

Unlike Suzan, I live alone and that also provides certain challenges. It can be a lonely path and recently Freddie sings 'Face it alone' which resonates with me. 

 

We are all forced to accept and carry on living despite having a chronic illness. We still have a life so we should try to find a new normal. I know that's not easy but we owe it to ourselves - don't we?  

A bientot
The French Femme
xxx