January 2013

by Jody Smith

woman before full moon

Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time.

It doesn’t really work that way.

Some of us can’t sleep at all. Others sleep for long periods but never when they’d like to. Many of us lie helplessly awake all night longing for respite, only able to succumb to sleep as the dawn begins to break.

My own experience for a number of years was a reversal of the usual sleep-wake cycle. I rarely saw my family since I slept most of the daytime hours, only feeling a semblance of wakefulness after sunset.… Read More

46 comments

The De Meirleir Experience

January 28, 2013

Joel (snowathlete) explains why he decided to consult Dr Kenny De Meirleir and describes his journey to De Meirleir’s clinic in Belgium…

Prof Dr Kenny De Meirleir

Prof Dr Kenny De Meirleir

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in the summer of 2009 by an ME/CFS clinic run by the National Health Service.  The UK is about as backwards as it gets when it comes to this illness of ours, so I was prescribed Graded Exercise Therapy (GET) by the NHS. It took me a long time to recover from the damage GET did to me, but once I was well enough, I started looking for better doctors and better treatments.… Read More

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by Karen Luoto

I still cannot believe it…

Jen, Karen and Adin sharing a moment of "true friendship".

Jen, Karen and Adin sharing a moment of “true friendship”.

I NEED to tell you about a cross country trip I recently took with the emotional and logistic help of other ME/CFS’ers from the community. 

Although I am in severe pain now, feeling as though every bone in my body is breaking with every step, the tendons and ligaments have all torn away from every joint, the brain is detached completely and my eyes cannot seem to focus on a single word at the same time, I AM HAPPY!

I recently traveled a 4400+ mile trip from Jacksonville, FL to San Antonio, TX to Albuquerque, NM back to San Antonio and then back to Jacksonville.… Read More

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by Simon McGrath

Diagram showing blood flow to the brainA new study, from Julia Newton’s group in Newcastle, UK, has found evidence that reduced blood flow to the brain is associated with muscle abnormalities in CFS patients.

Earlier work by the same group had found that with many CFS patients, muscles don’t regulate acid levels properly after exercise. Another study, by Ben Natelson, had shown reduced blood flow to the brain of most in a sample of CFS patients. This new study looked at both muscle acidity regulation and blood flow to the brain in the same people with CFS. They found a strong correlation between the two, both at rest and in response to a challenge.… Read More

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by Jody Smith

girl with laptop

Llewellyn King has been gaining quite a reputation for himself in ME/CFS circles of late. He has been a journalist, foreign correspondent, editor, creator of his own publishing group, and public speaker over his long career. And now King is an advocate for people with ME/CFS. He writes about us often on his White House Chronicle blog.

King is also co-host of MECFSAlert, a YouTube program that he said was “developed to comfort the sick, to stimulate doctors to learn more about it and their patients, and to get the government to take it seriously, and spend more money and to have more passion for research.”

Dr.… Read More

4 comments

by Sasha

Money Jar

Photo Courtesy of Tax Credits

If any of us was Bill Gates, we wouldn’t ask ourselves whether we should donate money to ME charities. We’d just do it. We’d reach into our gigantic bank account and drop our billions on the problem, secure in the knowledge that we were pouring such shedloads – no, planetloads – of cash onto it that the problem would be solved.

We’re not Bill Gates. So, should we bother giving if we can’t give billions?

 

In his book, ‘How to Change the World’, John-Paul Flintoff says that we tend to think that when big things happen, it’s because one person did something big, but in reality, it’s usually lots of individuals making small contributions.… Read More

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by Jody Smithpixabay-PR-woman-sitting-laptop2

Nova Southeastern University College of Osteopathic Medicine is hosting a Patient Conference for Dr. Nancy Klimas on January 26, 2013. Klimas is considered to be an expert in immune disorders and one of the world’s best researchers and clinicians for ME/CFS.

The theme of the conference is CFS/ME and Gulf War Illness 2013 – A Celebration of Hope and Progress. The doors of the conference are open to all who are interested in hearing what Klimas has to say.

Dean Anthony Silvagni DO, PharmD will be welcoming the Institute for Neuro Immune Medicine to the NSU family.… Read More

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A Hidden Life

January 9, 2013

TheChronicSituation writes about how choosing to live hidden behind even a partial mask can seem easier, especially when it saves on bothersome explanations. But, at the end of the day, pretense can come at a cost – nobody really knowing who you are…

Behind the Mask

To what extent do you need to hide your illness, how you are feeling, or the person that you have become? Is it always necessary to tell someone about CFS/ME in every situation?

The majority of people I know, don’t know that I have CFS/ME. In a way, I feel that I am lucky that I can pass for a healthy person.… Read More

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by Sasha

The FDA will announce its final decision on Ampligen some time around 2 February but could make the decision much earlier.

The FDA will announce its final decision on Ampligen some time around 2 February but could make the decision much earlier.

“There comes a point in human suffering when acceptable risk is most appropriately determined for oneself, not by government.”

So said Suzy, in an online comment about the failure of the FDA Advisory Committee on Ampligen to vote in a manner that would have got approval for the drug’s use for patients with ME/CFS.

But it’s not too late. The FDA will announce its final decision on Ampligen some time around 2 February but could make the decision much earlier.… Read More

56 comments

by Elaine Stammers

gillian1As a new year begins, I sit in my house looking out at the falling rain and think about Gillian McCarthy sitting in her unheated and leaking hut, many miles away from me in Somerset, UK. She awaits the return of the group of people who, by starting to build her a warm shelter for winter, have brought her hope. A hope that I know, from her letters and from conversations with her mother, was almost gone.

I may never meet Gillian as we both suffer from a chronic condition, though it’s more likely that I could get to her than she to me.… Read More

28 comments