Monday, May 19, 2008

WG4: ME/CFS Awareness

This week’s theme: Choose a political or social issue that matters to you. Find several books addressing that issue; they don’t have to books you’ve read, just books you might like to read. Using images (of the book covers or whatever you feel illustrates your topic) present these books in your blog.
This isn't such a major issue as many people have chosen - things such as enviromental issues, equal rights, child abuse etc etc - but it very important to me, which is why I have chosen it.

I have ME (more commonly called CFS or Chronic Fatigue Syndrome which is really an erroneous description as some of the following books will discuss). I've had it for nearly 18 years and as much as I try to refuse to let it, it controls a lot of my life. It's a little known and very misunderstood disease that has been ignored or willfully misunderstood by the medical profession for many years.

It is becoming more and more clear that it is indeed a physiological disease, with growing evidence of immune dysfunction, genetic markers and neurological issues, but its sufferers are often labelled as psychiatric patients, denied disability (when some sufferers are described as being in a similar condition to final-stage AIDs patients) and given little or no assistance.

As a small example, it's autumn here now and there is a big push to get people to have flu vaccines. In our medical system these are free to the elderly and people with chronic illnesses. I've been ill for 18 years with something that affects the immune system but I don't qualify and I have to pay.

Anyway, I'll get off my soapbox and on with the books.

The books I have chosen to spotlight all came from a Listmania list on that was put together by the woman who runs an excellent ME website - The Hummingbird's Guide to M.E.. I haven't read any of them myself, but after exploring her list I'm going to be checking out what might be in our local library. (I'm not overly hopeful about that, but I'll see what I can find.)

Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson
As I understand it, this is a big, solid book packed full of information but possibly not for the weak-hearted. It looks at the politics of CFS rather than the medical disease issues, but is all the more important because of that. It shows how this illness was deliberately named and characterised to belittle its patients and limit general research and understanding. It shows the current stigmatisation of CFS to have been deliberate rather than accidental and I understand some of the content is quite shocking in this regard. I'm not sure if I have the energy to try to read it or not, but I'm going to see if my library has it.

Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome by Peggy Munson
In the review on her Hummingbirds site, Jodi says this is probably the best book out there to give readers an idea of just how debilitating ME can be. It's a collection of essays, each telling the story of one sufferer, ranging from a journalist to a former marathon runner and a teenage girl to a cancer patient among others. It sounds like an amazing book and another one I'm going to look out for.

In the Shadow of Memory by Floyd Skloot
This is a book of 17 essays reflecting on the author's life. Several of them include details on living with ME-like symptoms, especially the cognitive ones. There are two further books of essays by the same author for anyone who likes this one.

The Clinical and Scientific Basis of Myalgic Encephalomyelitis-Chronic Fatigue Syndrome by Jay A. Goldstein and Byron D. Hyde
There's a book review with a number of quotes from this book on Jodi's Hummingbird site. It's worth taking a look at. She says that anyone who wants to buy just one book about ME should by this one. It looks at as many ME-related topics as one book can, including the history of the disease, issues of diagnosis and a wide range of the symptoms. This is another one I'm hoping will be in my local library.

If this is a topic that sounds of interest or any of the books catch your eye, do give them a go. Come and live in my world for a little while.

I will finish by saying that luckily for me, I do not have a severe case of ME. I would estimate that I quality as moderate. I need to sleep each day if at all possible - the reason Marcus goes to daycare four days a week - and I'm certainly not well enough for a job or even regular exercise, but I'm also not bedridden and don't need a wheelchair. I'm somewhere in the middle.


Kerry said...

And that would be a resounding NO with regard to any of these books being in my local library.

Al Diaz said...


Thank you for your insights.
Just sent you healing energy...

Ilumine Ao,
Al Diaz

Anonymous said...

Thank you - great post, very informative. I had not heard of the official (am I right?) ME term over chronic fatigue and I wish you all the best.

Eva said...

Have you ever read A Delicate Balance: Living Successfully with a Chronic Illness by Susan Milstrey Wells? I found it very inspiring!

cj said...

So, did I miss it? What does ME stand for?

I've been told that I may have Lupus, or Chronic Fatigue, or Fibro. They can't seem to figure it out.

Good luck and good health!


Kerry said...

ME stands for Myalgic Encephalomyelitis which is the original, British name for what tends to be called CFS in the US.

Jaimie said...

Great post Kerry! It is terrible when they disability is denied to some illnesses and others are ok'd. What is that all about?
Great list of resources. Thanks for visiting me and leaving such nice comments. Come back anytime!