Wednesday, May 13, 2009

ME/CFS is Not a Mental Illness - By Andrea Martell, Blue Ribbon Campaign Leader

ME/CFS Awareness Day- ME/CFS is not a mental illness - originally posted at The Blue Ribbon Campaign Blog -
I felt it was important to write to you personally. It is hard for me to write well now, so I no longer do. However, this is too important to remain silent.

The Blue Ribbon Campaign and other activists in the ME/CFS community were assailed today in a blog suggesting that we are mentally ill. This Dr. supports Wessely's psychiatric approach of ME/CFS, that it is a somataform disorder (hysteria). The true purpose of his post, on this, our one day when news stations around the world, and kind people are raising awareness for us, I cannot know. But I wish all of you reading this and campaigning for us to understand what I think of this.

I have three points to make 1. ME/CFS is not a mental illness 2. People with ME/CFS should not be fighting amongst each other in terms of its name and 3. Mental illness should not have a stigma either

ME/CFS is not a mental illness. The reason I can say that is because it is not in the DSM-IV. This is the bible to psychologists and psychiatrists that constantly evolves to show society's view of mental disorders. For example, homosexuality was in the DSM up until 1980. In the 1960's it was treated as a mental disorder.

Now while certain psychiatrists would love for ME/CFS to be a mental disorder, so they could make more money off of our illness by turning it into a somatoform disorder, the fact the remains that it is not classified as this kind of disorder. Any psychiatrist who wanted to diagnose you with a disorder from the DSM would have to turn to it, and give you various interviews from it. If you fit it, they could then give you a diagnosis. This is not a simple process. Any psychiatrist trying to do this would quickly find that ME/CFS is not classified in the book as a mental disorder. Instead it is classified by the WHO as a neurological disease and by the CDC as a disease of the nervous system.

I would also like to point out that it is clearly written in the Journal of Chronic Fatigue syndrome for patients not to give blood or donate organs because of the possibility of unknown infectious agents. There have been outbreaks of ME/CFS, and people have caught it from a blood transfusions. When was the last time you heard of a mental illness you could catch from a blood transfusion? The disease is not well understood by anyone, as it attacks multi-systems in the body, and by that I mean that the primary cause of ME/CFS is not known. What is known is that it causes cardiomyopothy, leads to cancer, liver problems, and organ failure. People have died directly from this disease because of the psychiatric approach. This must stop, now. This website started so that we could fight together. All of us, with what strength and talent we have, from where we are right now.

My next point is based on the fact that I am Canadian. Here in Canada ME and CFS are used interchangeably. I was diagnosed with CFS by a CFS specialist in Ottawa, Ontario 8 years ago, by the Canadian Criteria from what I can tell but my medical bracelet says (CFS/ME)/ Now, I realize in the community that there are fractions about the usage of ME/CFS, which words to use, and whether they are two separate illnesses.

One thing to remember is that what term used often depends on the Dr. or the country the patient is from. For example, when Sophia Mirza died, her body autopsied, and her spinal tissue studied, what was reported out of the UK was that she died from ME, and that is part of the website name but if you read the Dr's conclusions that she died from the disease he uses CFS, because he says it is the proper recognizable medical term. Yet, what he found to give her this cause of death were viruses in her spine and as it has been described she clearly had neurological symptoms. I am talking about Sophia to illustrate a point. Everyone of us, no matter what our diagnosis has been dismissed by Dr's and family at one point or another. Yes, one name for the disease has to be decided upon, and it must be used world wide, so that it is as recognizable as diabetes or cancer. However, whether you were diagnosed with ME or CFS you are going through the same trials and tribulations.

The difference in names was not created by us. It was created by the same establishments trying to keep biomedical research from being done, and trying to make it seem like what we have is not serious. That what we suffer is not real. Every time we are dismissive to another patient because of their diagnosis, saying "oh that's not real, but this is", you are doing the same as what the doctors and politicians have done to us. That is why I will not support any organization that supports this fracturing. Calling the disease by different names, classifying patients differently leads to re-traumatizing us, and keeps the true issue from being discussed. That issue is that we are seriously ill, our lives are being lost, and we are invisible. So please, I do not care if you say ME/CFS or CFS/ME, but include both. Both are real. Both are physiological. Both are killing people. Most differences in the name have to do with geography, not medicine.

My last point is that there is nothing wrong with being mentally ill. We all live with a stigma that what we have is some form of hysteria. We are not believed, and we get sicker because of this disbelief because our health care systems ignore us when we develop things they can test and treat. . Like all illnesses, some people with ME/CFS also have a mental illness. Mental illness is not bad. It's not wrong. It just is. Our fight against being called mentally ill is not a slight against those with a mental illness, rather it is a fight to be treated as our illness demands. People with mental illness deserve the same respect we do.

We are not our illnesses. No matter what we have, it cannot take away who we are. It can take our friends. It can take our dreams. It can take our careers. It can take our families. It can strip away everything we thinks makes us who who we are. But I tell you, you remain. The core of who you are, that is your strength, and it is still there.

That is what I fight with. I have felt called all my life to serve as I call it. When I went into remission, I studied psychology because I hoped to make a difference in the lives of others and one day fight the stigma and psychiatric approach to ME/CFS. Instead a virus left me with a relapse that has brought me the point where my health is the worst it is has ever been, and it continues to deteriorate. My relapse happened fast. I lost all the things I love about my life in just a few weeks. I still grieve for that. However, I cannot stand the idea of my life lived without purpose. So now, I devote myself to the cause of raising awareness of this disease, stopping ignorance in its tracks, and making sure that one voice at a time, we will gather, and whisper until we are heard.

I thought when Sophia died that we would be taken seriously, finally. But I find instead that governments, politicians and doctors continue to treat us in the same way that eventually killed her.

We live in an age when a 140 character sentence can be sent to 2 million people . We live in an age when if you cannot sit up that a mobile device can be used to relay information. We can be heard.

We need to gather together, hone our message, stop fighting amongst ourselves, and rise to be heard.

There are 28 million of us worldwide and it may be more. We come from all walks of life. Most of us live in fear of telling someone that we have this illness. Some of us have little support from family, friends, and social services. We live in isolation to protect ourselves from viruses, and because we aren't mobile. It is this isolation, the nature of the disease that has allowed the abuse by doctors, family, and social services to continue. It stops today.

Yes, you, are one voice. Perhaps you are not strong enough to speak. Perhaps you can only whisper. Perhaps, like me, it takes you hours to write something that makes sense, or to read something, even though you were once a wordsmith and could speed read.

Join us Today, together we can change the world. Whisper to us your story. Whisper with us. Together, it will be a shout.


Andrea Martell

P.S. What I believe in most is doing what you can, with what you have, right now. This is your strength, the base from which everything else springs.

Bits N' Pieces: An XL Tweet

Posted moments ago
I just thought of the best comeback for a conversation I had a few hours ago! @writeinmovement u may be interested in this! Follow the link for the full tweet. I've been trying to shake off my ex, we broke up near the end of March beginning of April, but we hadn't really seen each other much in the previous 3 weeks, so really it's been over 2 months. He keeps IMing me, I keep ignoring him. Finally tonight I just told him it's really over, I've really moved on, he's telling me he still loves me and why do I dislike him blah blah, and I was extremely civil, I told him I was very sorry but his feelings were not reciprocated etc. Finally he asks if I just want him to stop talking to me and I said, 'yes' (obviously he needs me to be this direct). Then gets mad, starts swearing and says "you never ever loved me" and I told him I loved who he pretended to be (long story, but he's literally ALL talk, NO action). He replied, "oh like you're so real", and I said, "I've always been an honest person". He said..."you live with excuses". At the time it was so bizarre, so the-pot-calling-the-kettle-black, and we ALL live with excuses (unless we're the Dalai Lama etc) so I just said LOL. His answer was "ya whatever" and that's the last I've heard from him. But wouldn't it have been great if it went like this?

Him: You live with excuses.

Me: I'd rather live with excuses than with you.

Cuz that's the truth, amen.

Blue Ribbon Campaign Book List (first draft)

Blue Ribbon Campaign Recommended Book List
by @perpetualspiral (a work in progress - me and the list!)

Living With Me by Charles Shepherd

Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia by Russell Howe, Alan Logan, Alison Bested

note: this is the personal recommendation of Blue Ribbon Army member @perpetualspiral for anyone suffering from fatigue.

Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn

You Don't LOOK Sick!: Living Well With Invisible Chronic Illness by Joy H. Selak Steven S. Overman

Parting the Fog: The Personal Side of Fibromyalgia/Chronic Fatigue Syndrome by Sue Jones

Recovery from CFS: 50 Personal Stories by Alex Barton

From Fatigued to Fantastic by Jacob Teitelbaum

Defeat Chronic Fatigue Syndrome: You Don't Have to Live with It -- An Eight Step Protocol by Martha E. Kilcoyne

The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome by Jay A. Goldstein, Byron M. Hyde , P. H. Levine (Editors) Nightingale Research Foundation (Coroporate Author)

Knowing Me: Women Speak about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome by Caeia March (Editor)

Living Well with Chronic Fatigue Syndrome and Fibromyalgia: What Your Doctor Doesn't Tell You...That You Need to Know by Mary J. Shomon

Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses by Katrina Berne, Robert M. Bennett, Daniel L. Peterson

Explaining 'Unexplained Illnesses': Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, and Gulf War Syndrome by Martin L. Pall

Reviving the Broken Marionette: Treatments for Cfs/Me and Fibromyalgia by Maija Haavisto

Chronic Fatigue Syndrome: Your Natural Guide to Healing with Diet, Vitamins, Minerals, Herbs, Exercise, and Other Natural Methods by Michael T. Murray N.D.

I would also like to recommend the following book, however, with this note. The term "stress-related disorder" is a very controversial one, and one that the CFS/ME community does not like because it can seem to imply 'mental illness', and a misunderstanding of "stress" in the general population as not being a significant cause of disease. However, long-term stress is severely damaging to the body, and in my case, I believe it was a causal factor in the development (and duration) of my fibro/CFS. In addition, I that feel a thorough understanding of stress, as is given in this excellent book, is a necessary tool for anyone attempting to cope with CFS/ME, fibromyalgia, depression, anxiety and other disorders that are affected by overstimulation and stress. This is one of my favourite books in the world.

Undoing Perpetual Stress: The Missing Connection Between Depression, Anxiety and 21st Century Illness by Richard O'Connor


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.