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