March 2013

As the FDA Stakeholder Meeting approaches, we explore the various ways that patients can get involved – and offer some suggestions on how to make the most of this unprecedented opportunity.

FDA Logo

On April 25-26, 2013, the United States Food and Drug Administration (FDA) is holding a workshop in Bethesda, MD to discuss how best to facilitate and expedite the development of safe and effective drug therapies to treat signs and symptoms related to CFS and ME. This meeting is expected to attract not only patients and ME/CFS expert clinicians, but also other groups including pharmaceutical companies and the FDA. This is an unprecedented opportunity for us to get the attention and interest of the pharmaceutical industry and to bring a patient perspective to the development and review of drugs for ME/CFS.… Read More

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Dr. Maria Gjerpe, an ME patient for 30 years, explains how and why MEandYou are going to crowdfund a Rituximab study.

MEandYou_largeWithin 90 days we are going to raise 7 million Norwegian krone ($1.2 million) to fund a study on 140 ME/CFS patients at Haukeland Hospital in Bergen, Norway.

Will we – the patients, relatives, friends – be the first in the world to crowdfund a clinical trial?

And can we engage both sides of the Atlantic to make it happen?

Yes!

Background

In 2012, a study at Haukeland Hospital on the use of the immunosuppressive medication Rituximab against ME attracted international attention.… Read More

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by Sasha

Real mud flying while we’re neck and neck! Photo by Paolo Camera on flickr.

Quick! You have 27 seconds to win $5,000 for an ME/FM charity!

So please – don’t think! – do this now and then come back and read about why you did it:

  • Click on ‘N’ to get the list of charities beginning with ‘N’.
  • The second one down is the National ME/FM Action Network. Click on the ‘Vote’ button.
  • Enter your email address in the box that pops up, do the Captcha thing to prove you’re not a robot, tick the box accepting the terms and conditions and hit the ‘Vote’ button.
  • Read More

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by Sasha

Photo by Sirsnapsalot: best name on flickr

The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying.

Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising their goods and services. Some providers, notably newspapers, thought they could rely on advertising to pay for their free content but it didn’t work, and they have now set up paywalls. In other words, what looks free actually has to be paid for somehow or it will fold.… Read More

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The ME/CFS Stigma

March 13, 2013

 Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism.

Cartoon of somebody making a hand signal to indicate that somebody is crazy.

Despite ME/CFS being an illness so severe that it has been found to cause a poorer quality of life than any major illness including cancer [1], its sufferers continue to be disbelieved, shamed and abandoned by doctors, friends and family. It is an illness that affects every major bodily system including the heart, nervous system, immune system and the production of energy. These patients are poorly served by contemporary medicine and die from heart failure and commit suicide in greater numbers and at far younger ages than the general population [2].… Read More

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Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly.

pixabay-silhouettes-people-gears-2“No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013.

This has to be one of the greatest things any professional associated with ME/CFS has ever said. It may be one of the main reasons that Dr. Klimas is so successful and so trusted in our community. She went on to talk about the importance of listening — another reason she is so highly regarded by those of us with ME/CFS.… Read More

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Joel (Snowathlete) continues his series on zoonotic pathogens with a thorough examination of Borellia and Lyme disease – and their possible relevance for ME/CFS patients.

Borrelia

Borrelia spirochete
by Tina Carvalho, University of Hawaii at Manoa

Borrelia is the bacterium that causes borreliosis. It is a microscopic spiral-shaped parasite. There are many different species of Borrelia, some of which cause Lyme borreliosis, otherwise known as Lyme disease.

Borrelia is a zoonotic pathogen transmitted via a vector, usually a tick. There is evidence that other arthropods such as fleas, biting flies, mites and spiders also carry it, but so far there is only limited – mainly anecdotal – evidence of transmission to humans by non-tick arthropods.Read More

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by Jody Smith

hands holding globe containing tree

A Patient Conference for Dr. Nancy Klimas was hosted by Nova Southeastern University on January 26, 2013. I was delighted to see Vonnie Kennedy’s article A Celebration of Hope and Progress with her first-hand view of the morning sessions. Vonnie did not have the advantage I’ve had of being able to see the videos from the conference, and being able to play sections back over and over again. But she did have the pleasure of being at NSU and seeing these dedicated professionals at the conference.

Introducing the INIM

The first video from the conference, entitled Welcome and Introducing the INIM (Institute of Neuro Immune Medicine), is only about five minutes long.… Read More

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Simon McGrath explains how Mady Hornig is applying tools used to understand other complex illnesses in an effort to unlock the secrets of ME/CFS.

Mady HornigIn a recent article I looked at the huge studies Professor Mady Hornig has underway looking for pathogens or signs of immune abnormalities in ME/CFS. While these are immensely impressive, I thought they were eclipsed by the main theme of her presentation: her jaw-dropping work in other illnesses. It took me a few attempts to fully grasp some of the more complex material, but I was left in a state of stunned admiration. And that doesn’t happen very often, as anyone who’s seen my posts will know.… Read More

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