Friday, May 9, 2014

May 12: A Disease Gets Its Day, but Who Cares?

They are angry — often too angry to be persuasive — that ME is not on the national radar. They are angry that after more than three decades, the federal government is still seeking to define the disease, which afflicts about 1 million people here and 17 million worldwide; that research funding, at $5 million, is so low that in the world of Washington expenditures, you practically need an electron microscope to find it; and that the suffering goes on unmitigated. They are angry that the government, through the Centers for Disease Control, abandoned the old name, Myalgic Encephalomyelitis, in favor of the dismissive new name, Chronic Fatigue Syndrome. They believe this trivializes the disease, and favors those who want to define it as a psychological affliction rather than a real disease. They are angry that distinguished researchers, like the virus hunter Dr. Ian Lipkin of the Columbia University Medical Center, has had to resort to crowdfunding to continue his work that might help ME patients.
* * *
Just a reminder -- if you're going to communicate with someone in authority, "angry" can often get you classed as "mentally ill", which is an assessment we're trying to avoid.

Thursday, May 8, 2014

Light a Virtual Candle for May 12

A vigil is being held on 12th May for International ME Awareness Day. Please join the vigil by lighting a candle and spending some quiet time on this special day in solidarity and support for the ME communities around the world. If you have access to the internet you can light a virtual candle as part of a group vigil.

Letter writing time

I know that finding doctors (except our experts) to help diagnose, treat is a devastating ordeal for most of us! I lived through it too! It is profoundly disturbing and surreal to watch most of our medical community, not only dismiss our disease but ridiculing and not believing us that this disease is real (not in our heads), serious, and very debilitating.

I would like to recommend (for patients that have the strength) to submit your stories to IOM (even if you don't agree ...with this initiative but it will show them that this is a serious issue) and to especially CFSAC. Below are contact names:

[email protected]
[email protected]

Sorry, I don't know who the key players are in other countries, please feel free to add them in the comments or I can edit this post and add them.

Another idea is that I wanted to do is collect these stories (still trying to find an easy way to collect the stories that we can use for advocacy efforts where patients would feel comfortable providing the information such as a website that you can simply copy and past your letter - ANY OTHER IDEAS). The stories will need to explain as best as you can the situation/outcome, include your name or ANONYMOUS but include years sick, where you live city, state, country definitely include all your experiences if you can).

Thank you for your time and look forward to your comments!

Wednesday, May 7, 2014

Fibro book available for Awareness Day

(Stacy) Hello, Fibro Friends! I want to share some very exciting news with you. You know how everyone is always asking if there is a book that explains to friends and loved ones what fibromyalgia is like and how they can understand us and help us? Well, IT EXISTS!

Last month a lovely young woman named April directed me to a blog post that her husband, Mike, had written all about her fibromyal...gia and how he had learned to become "an instrument of hope" in her life through grace, laughter, understanding, and proactive planning.


It was so simple, so beautiful, so... effective. I left a comment thanking Mike and telling him that so many people needed this post in their lives. Imagine my joy when I learned he was turning it into a book so that we could literally hand a friend a copy!

Here's what you need to know. This book is full of validation for you and warm-hearted, realistic, loving advice for your friends and family. It is short, so if you give it to a friend or loved one they will not feel overwhelmed reading it. It is not a manual, but rather a guide. Everyone has to find their own path, but it really helps to have a compass.

The best part? The book will be available on May 12 on Amazon and, in honor of Fibromyalgia Awareness Day, the Kindle version of this book will be only 99 cents (instead of 1.99). That's right. Less than a dollar. Paperback will be 5.99, and that's a pretty awesome price, too.

And last but not least, I'd like to point out that yes, that is MY ART on the cover! No worries, though. I get nothing from the sales of this beautiful book. I sold Mike the right to use my Fibro Pain Art piece, Trigger Points, for a very small but fair price - a pretty standard sale of a stock image. I'm honored to be even a small part of this project.

So, look for Loving Those with Fibro by Michael R. Holien on Amazon next week,and give a copy to a loved one!

And thank you Mike and April for sharing your journey. The Fibro community needed this little light.

Tuesday, May 6, 2014

Vaccines, Autism and Andrew Wakefield’s Victims

DrV January 10, 2011 at 10:53 pm ... I limit my reading to journals actually recognized by the National Library of Medicine. Maybe you should consider more reputable sources. ... the article was penned by Arthur Krigsman. For the readers, Krigsman was Wakefield's partner-in-crime

Sullivan January 11, 2011 at 12:00 pm

The idea that Mr. Wakefield's study has been "replicated" is false, based on a misrepresention of the study.

If you check the abstract, the first sentence under "findings" is:

"Onset of behavioural symptoms was associated, by the parents, with measles, mumps, and rubella vaccination in eight of the 12 children, with measles infection in one child, and otitis media in another."

As Mr. Deer has disclosed, this is false on many fronts. Mr. Wakefield's "behavioral symptoms" include "fever". Not exactly an autism symptom. More damning is that Mr. Wakefield changed the reported "onset" time for some parents' reports to make it seem more causal. Second, Mr. Wakefield dropped other parent reports where he couldn't change the timing, so that he could claim a short time interval between MMR and onset of symptoms.

He also states in the abstract:

"Interpretation We identified associated gastrointestinal disease and developmental regression in a group of previously normal children, which was generally associated in time with possible environmental triggers. "

Many of the children were not "previously normal", but had signs of developmental delay before they had the MMR vaccine.

Polio – Why it’s too soon to Forget | Sciency Things

"Polio is the effect of the poliomyelitis virus on the spinal cord of those who contract the virus. The first description of a disease that is thought to be polio was by Michael Underwood in England in 1789 and it was formally recognized in the early 19th century with outbreaks across Europe. For over a hundred years, western countries were plagued by worse and worse outbreaks every year, with age of infection and the associated death rate increasing.
...  polio is a devastating disease. Polio weakens the muscles of the back and limbs, resulting in terrible deformities that may never recover. Of children who have paralytic polio, the death rate is 2-5%, for adults it is 15-30% depending on age."
See also:

Monday, May 5, 2014

Money Helps -- fundraiser and blog post

Spotted by Tom Kindlon:
I thought this was a nice blogpost by woman with M.E. from the UK. It
was written with May 12 in mind and designed to be shared with
healthies to help them understand. It also mentions The Princess and
ME fundraiser for Invest in ME that is taking place on May 12, along
with The Big Sleep for ME.

She talks about how she regrets she didn't rest more in the early
stages as it likely would have helped her prognosis, something many of
us can relate to.

She talks about how much time she rests and how she has to measure out
the activities she spends her energy on. i.e.

* * *
Unfortunately, in the early stages, most of us have doctors who try to persuade us that resting so much has made us deconditioned and urge us to exercise more.  When you report back that exercising has made you worse, they either accuse you of not wanting to exercise or chirp "no pain, no gain", rather than considering that their advice may be wrong.
By the time we find a doctor who knows that CFS is best treated with rest, it's too late; the damage has been done.
The two things we need most are research funding, and for word to get out to the greater medical community to STOP pushing patients to exercise.  There are medical conditions where the patient should not exercise, and this is one of them.