Launch of inclusive UK CFS/ME Research Collaborative

April 30, 2013

by Simon McGrath

stephen holgate

Prof Stephen Holgate

Last Monday, 22 April, saw the launch of the new UK Chronic Fatigue Syndrome/Myalgic Encephalitis Research Collaborative (CMRC). Set up by Stephen Holgate, MRC professor of immunology, and backed by the UK’s main research funders (MRC, Wellcome Trust and NIHR) it aims “to create a step change in the amount and quality of research into chronic fatigue and ME”. The launch featured some eye-catching provisional results that got good media coverage, particularly the study from Newcastle showing differences in lab-cultured muscle from CFS patients versus healthy controls. And an fMRI study found that patients had to use more brain regions to accomplish the same mental tasks as controls, confirming earlier work in this field.… Read More

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Brain fog: The Research

April 27, 2013

Simon McGrath on some important recent research into cognitive deficits in ME/CFS.

outofordercutBrain fog is a major issue for ME/CFS patients, with 80-95% reporting memory or concentration problems. And while researchers have often found evidence of ‘cognitive deficits’ in laboratory testing, a surprising number of studies have failed to find deficits, leaving some to even speculate that patients’ cognitive problems are more perceived than real.

Clearing away the smoke

Such inconsistent findings are almost the norm for CFS research, with similarly mixed results in many areas including biomarkers. How do you make sense of it all?

Susan Cockshell

Susan Cockshell: She does all this part-time?

… Read More

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Parvovirus B19 in an Icosahedral Nutshell

April 24, 2013

Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19.

Parvovirus B19. Image curtesy of Dr Jean-Yves Sgro, Virusworld

Parvovirus B19. Image courtesy of Dr Jean-Yves Sgro, Virusworld [*]

Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces) [1] and has been linked with the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). B19 was discovered fortuitously in 1975. There are several other parvoviruses, but most don’t infect humans.

You may have heard of the parvovirus which infects dogs and often causes fatality, but B19 is not the same virus, or even in the same genus, so B19 is not a zoonotic. In humans, B19 is often caught in infancy and causes “slapped cheek”, also referred to as “fifth disease”, and is considered to be mild and self-limiting.… Read More

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Tuning In to Your Ultradian Rhythms

April 20, 2013

by Jody Smithpixabay-clock-and-face

The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.
 
During the times when we just don’t have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.
 
For some of us though, there are times when we have a little extra energy.… Read More

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Vote Once, from Anywhere! Win £2,000 for Invest in ME

April 17, 2013
Image by Theresa Thompson on Flickr

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

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Spanish HIV Experts Give Aid to ME/CFS

April 13, 2013

Joel (Snowathlete) talks with Dr Blanco, from IrsiCaixa, about the Spanish AIDS Research Institute‘s latest research on ME/CFS

T-lymphocyte (T-cell)

T-lymphocyte (T-cell)

Back in 2009 when XMRV hit the headlines a number of groups around the world took an interest in ME/CFS for the first time. One of these groups was the AIDS Research Institute IrsiCaixa, in Spain. Then XMRV tripped itself up and ME/CFS became invisible again…Except, it didn’t…

IrsiCaixa were still interested. Dr Blanco and his colleagues had taken a look at ME/CFS in 2010 and spotted a bunch of problems in the immune system. These guys really know their stuff when it comes to immunology and they knew that they were on to something.… Read More

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Klimas Conference Video 4: The Basics of Treating CFS/ME and GWI

April 10, 2013

Jody Smith continues her review of INIM’s Patient Conference with a look at Dr Irma Rey’s presentation.

pixabay-red-blood-cells

In the fourth video of the Institute for Neuro Immune Medicine’s Patient Conference in January, Dr. Klimas introduced Dr. Irma Rey, Assistant Professor of Medicine, of the Department of Clinical Immunology. Dr. Rey is also Director of Medical Education, Nova Southeastern University, College of Osteopathic Medicine, Institute of Neuro-Immune Medicine.

Without Dr. Rey, none of what is happening at NSU for Chronic Fatigue Syndrome and Gulf War Illness would be possible, Dr. Klimas said.

Lymphocytes the main focus of study

Dr. Rey said that lymphocytes are the main focus of study.… Read More

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An Interview with Dr Enlander

April 3, 2013

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

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

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Historic FDA Stakeholder Meeting on ME/CFS, April 25-26: How To Have Your Say

March 26, 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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