Wednesday, 18 August 2021

WHY WE NEED TO KEEP FIGHTING - STILL

 Bonjour, 

I hadn't intended to write another blog so soon after the last one but after hearing the announcement by NICE yesterday I feel highly motivated to respond through my blogs and my poetry. 

This quite rightly has caused much anger and dismay in the M.E. community. For so long so many have been waiting for this update to acknowledge once and for all that GET(graded exercise therapy) and CBT(cognitive behavioural therapy) are not acceptable treatments for M.E. and that if anything they do harm. 

I know it's hard to keep fighting but we can't give in and give up the fight against a small minority who try to bully us into a corner. We have a voice and must and should use it. Of course it's hard when we all suffer on a daily basis and have been doing so for year after year, seemingly with no end. 

BUT we deserve and need better understanding, better care and treatment. 

For so long there has been so much neglect and abuse of those who are chronically ill. 


I have previously written blogs about how I feel :-

Why we need to keep fighting 

Positive thinking 

I pushed too far 

I look back 

You said that I'm afraid

I have shared my story and experiences which you can read in these blogs:-

My story for M.E. awareness week

Meet the author 


Recently I have also told my story in a podcast with the help of Millions Missing Podcast. 

You can listen to my story here 


This is my poem about GET & CBT 


And another poem that is about exercise


These quotes remains as relevant as ever 



Greg Crowhurst for Stonebird has made a very good response in a video on the failure to publish the NICE guideline on ME/CFS. 


There is also a petition which you can sign 'Don't let vested interests perpetuate harmful treatments for ME/CFS'

If you have been harmed by graded exercise do you feel able to share your experience? 

This is the message I have received and how you can share your experience 

Jenny Wilson is looking urgently for testimonies that offer some kind of ‘proof’ that graded exercise therapy has harmed people with ME. Your story might be just the one she needs. Apparently they need approx 50 case stories ready to go, and the stakes couldn’t be higher. If you can give a rough idea of dates and any ‘evidence’ connecting the treatment specifically with your deterioration, along with any evidence of deterioration (eg you had to claim welfare benefits, or you had to drop work hours, or you needed to go into hospital / GP can corroborate etc) then that’s even better, but anything is good. Maybe 100-200 words, or whatever you can manage Please email to mkjennywilson@gmail.com and cc in me at tanyamarlow@hotmail.com
Enter

Tanya

(Needs to have an email address associated with it)

So what can you do? 

  • Share my blog and poems
  • Share the video by Stonebird 
  • Sign the petition 
  • Listen to my testimony on the Millions Missing Podcast 
  • Share my testimony and that of others
  • Consider sharing your testimony also in a podcast
  • Share your testimony regarding your experience of graded exercise
  • write to NICE 

We are all part of a big community and every little bit helps. Do what you feel able and no more. We must keep fighting. This has to end. Please help in any way you can. Thank you 

A bientot
The French Femme
xxx

Monday, 10 May 2021

MORE OF LIFE, LOVE & LOSS

Bonjour, 

During the month of M.E. awareness I'm pleased to announce the publication of my latest book 

'More of life, love and loss' by The French Femme 

It's been a hard struggle through two relapses and much pain and fatigue but at last it's completed.  

What happens when at the age of 46 you’re suddenly struck down by a mysterious illness? One day you’re fit and healthy. The next day you become seriously ill. You’ve no idea what’s happening to you. Your world is turned upside down. Furthermore no one, including your doctor, believes you. Your life and all that you know and love has to change. How can you accept that your life has to change? What sort of a life can you have now

In this collection of poems as ‘The French Femme’ I reveal how my life has changed after becoming ill with M.E. (Myalgic Encephalomyelitis). I recall what my life used to be like before illness and how that compares with my current life. In these poems I express my feelings and frustrations of living with a long term chronic illness. I mourn the loss of my old life and some of those people that used to be in it. Yet, despite my suffering, life still goes on. I still value and appreciate all that’s around me. My new life is in France so some of my poems reflect that life and are written in French. 

In my book you can discover and learn about ‘The French Femme’ and the impact the illness M.E. has had on my life and so many others like me.  

My book is available on Amazon in paperback edition 
 

or on Kindle 


My book is available on Amazon throughout the world. 

I have published other books of poetry about living with the chronic illness M.E. and you can find them all on my Author's page on Amazon as here  


As with all my other books I will be donating a percentage of all sales to the UK charity ‘Invest in M.E. Research' and have a Just Giving page 

During M.E. awareness week 11th - 17th May I will donate all proceeds from the sale of this book and all my other books to Invest in M.E. Research. 

Au revoir
The French Femme
xxx








Tuesday, 2 February 2021

POSITIVE THINKING

Bonjour, 

I'm sorry if this blog is longer than usual but I'm feeling angry, very angry,  disgusted, insulted, offended, disappointed..... I could go on!  

It only takes one misleading, misrepresentative blog and a tv interview about M.E./CFS and long Covid to cause a great deal of anger and upset among the M.E. community. It feels as if all the time we take one step forward only to be set back once again. 

It started with a blog by Professor Paul Garner  which was particularly offensive to me and all people who have been suffering with M.E. for many years and no doubt those who are now very ill with long Covid. 

In his blog he claimed that you can recover from long Covid and M.E./CFS by positive thinking and exercise!! What?!!! 

Then as insult to injury this blog was rapidly followed by an interview on Breakfast BBC tv where both Professor Paul Garner with Dr Clare Gerada told stories of recovery using gradual increases in exercise and that there is no illness where exercise is not beneficial!!! 

Thankfully there has been some very good response to both. 

You can read an excellent reply by David Tuller and many of the comments 

This is also a truly excellent article by a former clinician 

And another excellent blog by Valerie Eliot Smith 

I know this is a lot of reading, especially for those with M.E., but do try to take the time to understand what has happened and what has been said. It's important as it affects us all. 

Then hopefully you will understand why I'm angry and most probably you will feel the same.  

When I read those words 'positive thinking' I immediately thought of the song by Morecambe and Wise 

If only it was that simple to recover from M.E.! 

I'm a fairly positive person. That's helped me to cope with living with M.E. for over 18 years but it's not helped me to recover. You just can't wish it away 


When you've been ill for so long you are prepared to try anything that might lead to an improvement or a cure. 

I know I've certainly tried many different approaches, strategies, medications, as well as reading a lot of advice and information that's available online and in books.

When I first became ill I was advised to follow a graded exercise programme but that only made me feel much worse and brought on a relapse. 

Cognitive Behavioural Therapy was also suggested. While talking to someone helped a little with coping strategies it was far from a cure. 

This poem summarises my experience of GET & CBT 

Sometimes people with M.E. are accused of being afraid to carry out exercise. This is my response in another poem 

I know that the more I push myself the more I become more ill, which leads to post exertional malaise and or even a relapse. 

I know after many, many years of suffering, of trial and error that the two strategies that help me the most are pacing and rest. 


Everyone with M.E. knows that over exertion and pushing oneself will lead to post exertional malaise or relapse. 

You can read more about this in some of my previous blogs. 

I PUSHED TOO FAR , DON'T BE FOOLED , ALIVE BUT NOT LIVING , I'M NOT AFRAID 


If you look at the latest criteria for M.E. you will see that PEM or PENE is essential criteria for M.E. 

The Canadian Consensus Criteria describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear in the CCC clinical case definition. 

The International Consensus Criteria uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.     

As I write the NICE guideline for "chronic fatigue/myalgic encephalomyelitis (or encephalopathy) or CFS/ME is in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy. 

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP)  as treatments for CFS/ME. This is the process which Professor Garner apparently used to achieve his recovery from long Covid. 


Recently I read a phrase that took me back to January 2003 when I was first seriously ill. In fact in the current coronavirus pandemic I keep reading so many stories and phrases that resonate with me and my life over the past 18 years

  • I thought that I had my life ahead of me
  • having to rethink much of life
  • the new normal life after Covid
  • facing anxiety
  • dealing with uncertainty
  • finding acceptance
  • First denial, then fear
  • everyday things we miss
  • no longer taking things for granted
  • life beyond Covid 
  • cancelling life events
  • missing family and friends 
  • wanting the life back before Covid
  • pain and solitude
Does any of this sound familiar? It does to me. 

Time will tell if those with long Covid will develop M.E. 

Maybe this will lead to better understanding and help for those in the M.E. community who have suffered and struggled for so long. 

Well that's all for now folks. This blog has taken several days to write and I've tried to cover as much as possible. 

I now need to go and lie down before a relapse sets in and no amount of positive thinking can avoid that!!! 

Au revoir
The French Femme
xxx




Saturday, 2 January 2021

HOPE

Bonjour, 

This is the third time I've attempted to write a blog in the last few months. Third time lucky - I hope! 

Anyway I want to start by wishing you a HAPPY NEW YEAR. 

I know 2020 was a really difficult and challenging year for so many and is perhaps one to be forgotten because of the arrival of the coronavirus. Many people have seen their lives changing, curtailed or limited with confinement and restrictions. It's become a strange new world. 

But for me there have been few changes and adjustments. It's not been a great deal different from previous years. 

When I hear people moaning and complaining about what they've lost and how they feel depressed, I want to say "welcome to my world"! 

  • I've had to adjust my life since becoming ill with M.E. (Myalgic Encephalomyelitis) some 18 years ago
  • My life and my world has had to change
  • I've had to accept so many limitations to my life
  • I've had to accept being confined to my home most of the time. 
  • I've had to accept that I can no longer work
  • I've had to accept that I can no longer go to the cinema
  • I've had to accept that I can no longer go to the theatre
  • I've had to accept that I can no longer enjoy a trip out shopping
  • I've had to accept that I can no longer enjoy any sports
  • I've had to accept that I can't often socialise with friends or family
  • I've had to accept that traveling and going on holiday is not an easy option for me    
  • I've had to live with and accept a life with illness that never, ever goes away
So what's a few more changes to me? 

When you live with a long term chronic illness it's hard to keep on hoping. 

Yet what is there if there isn't any hope left? 

Hope is a word and a theme that crops up a lot in my blogs. 

I'm a fairly positive person and like to keep on hoping. Yet I understand why others give up on hope. 

I want to start 2021 on a positive note so I hope that the coming year is a better one in many ways. 

Meilleurs voeux et Bonne Année 
from the French Femme
xxx



 
 

Thursday, 15 October 2020

OVERWHELMED

 Bonjour, 

It's been a little while since I last wrote a blog but other events and people have come into my life. 

This blog and my poem is inspired by an event that I experienced some time ago. I've never forgotten it and how I felt at the time. 

All my senses were totally overwhelmed. 

I'll explain a little of how I came to find myself in such a situation.     

Because of my M.E. and my sensitivity, I've chosen to live in a quiet and calm location in France. See the locations effect.

Most people with M.E. are sensitive to some degree to light, noise, odours, chemicals, food, medications and touch. 

Hypersensitivity is a real issue for people with M.E. and forms part of the many symptoms

I had a reason to go back to the UK and perhaps underestimated how I would cope and what effect it would have on me. 

When I was younger and healthy I lived and worked in a busy city. I was accustomed to all that came along with it. It was never a problem. 

However when I returned to that environment I felt totally overwhelmed and unable to cope with the sensory overload. 

I now know that I made the right decision in choosing to live in a better environment. Of course not everyone with M.E. has that opportunity. 







Have you ever been in a similar situation? 

How did you feel? 

Until next time I'll be staying at home! 


À bientôt

from the French Femme

xxx

 

Friday, 21 August 2020

MY MASK

Bonjour, 

In the current health situation with the COVID-19 many of us are having to wear masks. This is for our protection and protection of others. 

Recently a friend of mine bought an African mask. I have been reading a little about the origin of masks and African masks in particular. African masks are very different and have altogether a different use and meaning.  

This started me thinking about my invisible mask that I often wear. You may ask what do I mean by that. Well let's start by looking at the meaning of and the synonyms for a mask. They are to hide, conceal, disguise, cover up, obscure, screen, cloak, camouflage, veil, mantle, blanket or enshroud. 

Unlike those who have recently become ill with the coronavirus, I have been ill and living with M.E. (Myalgic Encepahlomyelitis) for 18 years now. In a way I'm used to wearing a mask. 

Sometimes I smile and pretend that I'm really ok and not ill. I put on my invisible mask. But behind my smile and my invisible mask I am hiding how I really feel and how I suffer. 

I've adapted a photo that I took of my friend's mask to demonstrate what may behind my invisible mask and smile. 

Behind my mask I may hide my suffering 


 Behind my mask you have no idea of the battle I face each and every day 

Behind my mask you have no idea of how many times I've cried 

Behind my mask you have no idea of all that I've lost and how my life has changed with this illness


Behind my mask you can't easily see how I'm fragile inside 

Behind my mask you can't see how I often feel like I'm dying 


Do you have an invisible mask? What do you hide from others? 

Of course it's not always possible to wear that mask, especially when we are so very ill. Then it's clear how we are suffering. 


À bientôt

from the French Femme

xxx