MYTHS AND MISCONCEPTIONS ABOUT ME AND M.E.

Bonjour, 

Sorry it's been a while since I last wrote a blog but one horrible dental problem put me into relapse. I had to wait over 6 months before I could have the appropriate treatment and then it took a long time to recover. Those of you with M.E. will know that any second infection can cause a relapse and we are very slow to recover. 

So the first misconception is that I haven't disappeared and I haven't stopped writing poetry. 

Over many years I've written countless poems about M.E. in order to try and dispel the misunderstanding and misconceptions about my illness. 

In this blog I want to explore some of the MYTHS AND MISCONCEPTIONS surrounding M.E. 

The following are some statements made about M.E. and underneath each statement I share with you one or more of my poems to try and dispel that myth or misconception. You will also find a quote and links to further information. 

M.E. is not real - or "all in your head"

“There are now thousands of published studies that show underlying biological abnormalities in patients…It’s not an illness that people can simply imagine and it’s not a psychological illness.”

– Dr. Anthony Komaroff, Harvard University

FACT: ME/CFS has very clear and proven biological (not psychological) traits,

which include the following (as well as dozens of other measurable traits):

• Low natural killer (NK) cell cytotoxicity and compromised immune response
• Abnormal brain scans
• Abnormal cognitive-evoked EEG brain maps
• Up-regulated 2-5A antiviral pathways
• Prominent activation of pro- and anti-inflammatory cytokines
• Measureable reduced aerobic work capacity
• Abnormal gut microbiome diversity
• Metabolomics and bioenergetics abnormalities
• Cardiovascular abnormalities

We are not lazy

                                                We don't look sick 

“Being sick doesn’t mean you have to look a particular way… How is ‘sick’ supposed to look?”

–  Erin Migdol, The Mighty

There is no blood test for M.E. 

“In fact, some standard laboratory tests do distinguish cases from matched healthy control subjects. More important, newer technologies (metabolomic, immunologic) reveal other clear differences between cases and controls, as shown next.”

– Dr. Zaher Nahle, Chief Scientific Officer, SMCI

M.E. is caused by depression or anxiety

 

“Chronic illness can also threaten job security, relationships, and plans for the future. Any of those things can lead to depression. It’s a normal response to a bad situation.”

– Adrienne Dellwo, ME/CFS Advocate

Fact: Depression/Anxiety are the most common secondary responses to complex chronic diseases

Exercise cures M.E. 

“That you can exercise your way out of this illness, that is just not true. You can exercise, but you have to be extremely cautious. It will not cure you…. If a doctor sends a patient to the gym to do endurance exercise, that’s going to be a disaster. Doctors do that all the time and these patients get much, much worse.”

– Dr. Nancy Klimas, ME/CFS Expert, Nova Southeastern University

M.E. is just being tired all the time 

M.E. is a complex and forever changing illness. It's so much more than just feeling tired and is unlike any other tiredness that you may have experienced before. There are so many symptoms that fall under the umbrella of M.E. One of the most comprehensive list of symptoms can be found on the web site Hummingbirds' Foundation for M.E.      

M.E. is a mental disorder 

M.E. only affects women 

Numerous studies have found the rates of M.E. to be substantially higher in adult women than in men, with estimates ranging from 75-85%

M.E. only affects a certain type of person 

Anyone can get ME/CFS. While most common in people between 40 and 60 years old, the illness affects children, adolescents, and adults of all ages. Among adults, women are affected more often than men. Whites are diagnosed more than other races and ethnicities. But many people with ME/CFS have not been diagnosed, especially among minorities.

M.E. isn't a serious medical condition

ME is a chronic, inflammatory, physically and neurological and immune-mediated disease that presents with symptoms involving multiple bodily systems. It is frequently triggered by a viral infection or a flu-like illness. ME presents with symptoms in the central nervous system (CNS), autonomic nervous system (ANS), immune system, cardiovascular system, endocrine system, digestive system, and musculoskeletal system. 

Myalgic encephalomyelitis was first classified as a neurological disease by the World Health Organization (WHO) in 1969, with the publication of the ICD-8 manual

M.E. is a rare condition 

The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. A recent UK biobank study places that estimate at 30 million. In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States.   90% of patients are not diagnosed.

M.E. is difficult to diagnose 

There are many definitions and criteria which help to diagnose M.E. 

You can exercise your way out of M.E. 

On the web site 'The Hummingbirds Foundation for M.E.' you can find an extensive list of myths about M.E. as written by Jodi Bassett. 

I hope this blog, my poems and links to further information help you in the face of much prejudice, ignorance, disbelief and misunderstanding that surrounds M.E. 

I've done my best to cover some of the main myths and misconceptions about Myalgic Encephalomyelitis. Maybe you can add some more. 

I hope that this helps you in face of what I and you face on an almost daily basis. 

You may indeed face some of this in the upcoming festive season. So stay strong and keep fighting. 

WE ARE ALL M.E. WARRIORS 

A bientot
The French Femme
xxx

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

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  

Amazon UK 

Amazon France 

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