Joel asks a variety of leading doctors, researchers and patient advocates for their reflections on the FDA Drug Development Workshop.
A short while ago, the US Food and Drug Administration (FDA) held a workshop for patients, doctors, and other stakeholders, to talk about drug development for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). You can read a summary of the first and second parts of day one of the two-day workshop, here and here. (Day two summaries will be published shortly).
Following the event, we caught up with some of the doctors and the advocates who attended and asked them each how they thought the workshop went.… Read More
by Jody Smith
I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke.
I got up that morning feeling fine — or no worse than usual at any rate — but when I went to my bedroom to get dressed all that changed. Waves of sensory chaos began to crash over me, and I sat on the bed waiting for it to pass. It didn’t. I’d had a wide variety of sensory chaos and problems with my brain for many years by that time, but this was different.… Read More
On May 12 – International Awareness Day for ME/CFS/FM/MCS/etc – Phoenix Rising joined with 8 other US ME/CFS patient organizations and 26 independent patient advocates to call on the Department of Health and Human Services (DHHS) to finally fix the problem of the many and diverse case definitions associated with our disease. In a letter to Secretary Sebelius, Dr Howard Koh, Dr Thomas Frieden and Dr Francis Collins, we explained our concerns about the current definition activities of the DHHS in relation to “Chronic Fatigue Syndrome”, and listed the steps we believe must be taken to rectify the situation.
You can read our letter to the DHHS here.… Read More
Gabby (Nielk) continues our summary of the FDA Workshop with a look at the second half of Day One – a discussion entitled “Patients’ Perspective on Treatment Approaches”
The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More
Mark takes a look at what’s going on around the world this weekend to mark International Awareness Day
May 12th is International Awareness Day for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Awareness Day events also recognize Fibromyalgia (FM), Multiple Chemical Sensitivities (MCS), Gulf War Syndrome (GWS), Lyme Disease, and other chronic neuro-endocrine-immune diseases (NEIDs). Awareness Week runs from May 12th-18th, and the whole of May is Awareness Month. As with many awareness campaigns, ribbons are worn to show support for the campaign – blue for ME/CFS, purple for FM, and green for MCS.
A multitude of Awareness and Fundraising events are taking place this weekend, all across the real and virtual worlds, so I’ve been trawling the web to find out what’s going on.… Read More
by Joel (snowathlete) and Gabby (Nielk)
The FDA Drug Development Workshop for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) took place last week on the 25th and 26th of April. It was well attended by patients, advocates, doctors, representatives of the CDC and even a few pharmaceutical reps.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More
Do what the shoes say!
(Image by Theresa Thompson on Flickr)
by Sasha
Probably the easiest money we’ll ever raise is up for grabs in an online voting contest in which UK research charity Invest in ME is a frontrunner.
Anyone can vote, from anywhere in the world, and you vote just once, but you need a Google or Facebook account to do so (or to be willing to spring for postage).
The contest
The contest is being held by Direct Debit, who manage automated bill payments in the UK. They’re running a fresh contest each month until June, each with a top prize of £2,000 ($3,100), a second prize of £1,000 ($1,500) and £2,000 ($3,100) divided equally between a small number of runners-up.… Read More
Joel (snowathlete) talks with Dr Derek Enlander about a range of topics including Ampligen, the FDA, GcMAF, Methylation, and the various research programs at the Mt. Sinai MEC.
Dr Derek Enlander
Dr Derek Enlander is an internationally recognized expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Fibromyalgia. Born in Belfast, Northern Ireland, he became a fellow of Stanford University Medical School in the USA and later took up other prestigious positions including Physician-in-Waiting to the British Royal Family on their visits to New York, and it was here that he set up his private practice, in Manhattan.
His interest in ME/CFS began when a childhood friend in Ireland contracted the illness and asked him for help.… Read More
Carol Schmid examines what it is about the nature of ME/CFS that makes it likely to generate skepticism.
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
