From mild to severe M.E. (the story of one person for Severe M.E. Awareness Day).

Bonjour, 

Every year the 8th August is designated as severe M.E. awareness day. 

It was started by the 25 per cent ME group in 2013. The day 8th August was chosen to honour Sophia Mirza, a severe patient who died of the disease. In 2019 the ME Association marked Severe ME Awareness Day for the first time. 

In my blog today I've decided to share the story of Tess who went from being mild to having severe M.E. Her story is probably not unique. 

She contracted M.E. in 2009 after Glandular Fever and was mild at first. She was someone very active but it all started to fall away bit by bit. She fought as long as she could against this rapid decline. However, GET (graded exercise therapy) and CBT (cognitive behavioural therapy), as originally recommended by NICE, plus poor medical advice led to a slow progression to moderate and finally severe M.E. by 2021. Since then NICE have reviewed and updated their advice.

Nice concluded, after an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment. 

If only Tess had been given the right advice and help then maybe she would not have developed severe M.E. How many more followed the same bad advice which led to a deterioration in the level of their health? 

Tess is a very talented lady. She writes poetry and is artistic. I have helped her to put together her poems with her creations. I will share a few of them in this blog. This first one is about the aftermath of a bath. 

Tess was a nurse for 40 years, 33 years anaesthetic nursing. She had an incredibly full life - endurance horse rider/owner, martial artist, biker, artist, pet owner, gardener, reader, wife, granny. 

And now she is housebound, mostly bedbound, confined to a dark room. 

This is her next poem and relates to the change in her life. 

Fortunately, Tess has a loving husband and two cats. She says that she writes poetry as a creative outlet and to prevent her situation from spiralling into despair. 

This last poem is particularly moving. It's so sad that a woman so vibrant and active has lost the life that she once had. 

I do believe that if she had been given better help and advice and not pushed into harmful treatments that she would not be severe today. 

On this day, I hope that others who still come across anyone in the medical profession who proposes GET and CBT they will refuse to follow such harmful advice. Severe M.E. and very Severe M.E. are most probably the result as was the case for Tess. 

Finally I would like to thank Tess for allowing me to share her story and her creativity. 

Au revoir

The French Femme 

xxx

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

Bonjour, 

This is the continuing summary of the European Alliance Survey and Report. You can find part one here and part two here 

This section is about 

SUPPORT FROM HEALTH CARE, WELFARE, SCHOOLS AND PERSONAL CONTACTs

• answers differed across countries. ME/CFS patients generally felt that they received most support from family, other ME/CFS patients and patient organisations and least from the health care systems and social services 
• men were more likely to have felt supported by families but also felt less supported by the welfare system, women found more support among other ME/CFS patients
• Norway was the least dissatisfied by health care support but even then only 17% felt that they received good or very good support, 65% said that they received little or no support 
• social services (childcare services/ social worker) had the least support with no country having more than 10% who felt that they received good or very good support
• the workplace and schools/educational institutions were not seen to be supportive though large variations between countries
• ME/CFS patients felt let down by public institutions like public healthcare, social and welfare services and schools and educational institutions 
• in most countries more than half of patients felt that they received good or very good support from the family 

HEALTH CARE 

• 94% had been in contact with their country's healthcare system, 74% had received little or no support, 12% reported good or very good support

SOCIAL SECURITY/ WELFARE 

• among those who responded to the question about support from the social security(welfare) system 34% stated that they had received no support, 27% said that they had received little support, 3% felt that they had received good support
• significant correlation was found between poor experiences and a deteriorated course of illness 

SOCIAL SERVICES 

• about 65% had been in touch with the social services in their country, 66% said that they received no support, only 8% considered the support to be good or very good

WORKPLACE 

• among the 60% that answered the question about support in the workplace, 42% stated that they received no support, 23% stated that they had received good or very good support

SCHOOL/EDUCATIONAL INSTITUTIONS

• response came from 28% of adolescents and young adults, 45% said that they had received no support, 21% had received little support, good support in schools was 3% and 14% in universities 

FAMILY 

• most answered this question, 60% stated that they received good or very good support from families, 25% had little or no support

FRIENDS 

•  92% answered this question, in general the support is much lower than the family, 40% had little or no support, 34% felt that they had good support 

OTHER ME/CFS PATIENTS

• about 70% had been in touch with other ME/CFS patients, 56% stated that they received good or very good support 

PATIENT ORGANISATIONS/CHARITIES

• 71% answered this question, 42% stated that they had received good or very good support, 29% had received little or no support 

I hope this makes sense and helps you. There's still one more section to go! 

Au revoir

The French Femme

xxx

AWARENESS RAISING

Bonjour, 

We've now arrived in yet another M.E. awareness month. Year after year I've done so much to raise awareness and better understanding of M.E. (Maylgic Encephalomyelitis) and sacrificed my own health. 

BUT not so this year. I'm doing something completely different and something for me. In fact I'm going on holiday and staying with some special friends for the best part of a week. Yes it will be challenging. It's been so so long time since I've been on holiday and seen my friends. I feel that I deserve some time away and a change. 

I will still be sharing some of my poems via memories on social media from previous years but nothing new. All my poems and blogs are available to share from all social media sites. And of course feel free to share any of my blogs. I have blogs covering many subjects and going back over more then ten years. You can also buy any of my books of poetry. Any money raised from the sales of my books during the month of May will be donated to Invest in ME Research. 

The following are some of my blogs that I've previously written for May awareness. 

April 2014 M.E Groundhog Day 

May 2015 What are you doing in May? 

May 2015 Awareness raising all year round

May 2016 Crying 

May 2017 Awareness month 

April 2018 What are you doing in May? 

May 2018 Awareness raising all year

April 2019 31 Days in May 

May 2020 31 Days in May 2020

May 2020 M.E. Groundhog Day (again)

May 2021 More of life, love and loss 

May 2022 30th Anniversary of International May 12th Awareness Day 

May 2023 Looking back over my last ten years 

So as you can see I've tried to write a blog for May awareness every year since 2014. I think I need a break now! 

I would like to thank all those who have supported me and especially encouraged me over the years. There have been times when I've felt like giving up and felt under appreciated. However, if I help just a handful of people then all my sacrifices will have been worth it. 

Au revoir 

from The French Femme 

xxx

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