The human face of the Irish Coalition's disability funding cuts |
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International news
Saturday 26 July 2014
From Ireland's Sunday Independent:
Valerie Mullen
(Photo: Tony Gavin)
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The human face of Coalition's €1.2m disability funding cuts
Voluntary groups face an uphill battle to secure new funds within the next 12 months, writes Wayne O'Connor
PUBLISHED 20/07/2014|00:00
For years, Valerie Mullen was in so much pain that she attempted to take her own life on four separate occasions. Valerie suffers from fibromyalgia, a condition that causes her extreme physical and mental pain.
"I usually have awful pain in my back, my legs and my arms. It affects my sleep, it affects eating - it affects everything," she told the Sunday Independent.
"It is a motor neuron disease of the nervous system, where you have a constant, burning pain in every nerve you have."
The condition has taken a terrible toll on the 56-year-old from Rathgar, Dublin, and this was compounded when her basic mobility was impaired after she suffered a stroke five years ago.
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Student writer pursues passion, fights illness |
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International news
Friday 25 July 2014
From US news outlet The Courier (via SFGate):
Student writer pursues passion, fights illness
By KATE MABRY, The Courier
Published 8:02 am, Sunday, July 20, 2014
HOUMA, La. (AP) — A Nicholls State senior who has fibromyalgia and Lyme disease uses her passions for writing and art to prevail over her illnesses.
English major Sarah Hamilton, also known by her pseudonym Sarah Panic, crafts plaques and prints by typing prose onto photos from old magazines and books.
Since the 25-year-old Houma resident and Montegut native began her work, she has created several hundred prints and more than 15 plaques.
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ME woman Beth French swims 26 miles to the Isles of Scilly |
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International news
Thursday 24 July 2014
From the BBC:
Beth French could not use
flippers,
a
wetsuit or
drysuit
in the challenge
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ME woman Beth French swims 26 miles to Scilly
23 July 2014 Last updated at 16:50
A woman who was once forced to use a wheelchair because of Chronic Fatigue Syndrome (CFS), or ME, has swum 26 miles from Cornwall to the Isles of Scilly.
Beth French, 36, who had the condition as a teenager, made the crossing in 17 hours, 28 minutes.
The massage therapist from Milverton, Somerset, is believed to be the first person to complete the swim in that direction.
Now she is planning a swim from Gibraltar to Morocco.
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Archibald Prize entry: "My Plague" by Julian Parker Welch |
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Australian news
Wednesday 23 July 2014
From artist Julian Parker Welch (via email):
A section of "My Plague"
by
Julian Parker Welch
(Click here for
the full painting)
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I am a Sydney painter that recently did a piece for the Archibald Prize. I was not picked, which doesn't shock me or undermine my real reason for this piece.
Hopefully my explanation will give you a clear idea of what and who the painting is of.
The painting depicts two figures – in a pool of light at the foreground sits Professor Andrew Lloyd, Head of Infectious Disease at the University of New South Wales, and in the shadows at the back looms a Black Plague doctor from the 1400s.
This work has particular significance to me. For the last four years I have suffered from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), which is a severe functionally disabling neuro-immune illness.
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Fibromyalgia research update from Integrated Tissue Dynamics |
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International news
Tuesday 22 July 2014
From ProHealth:
Fibromyalgia Research Update from Integrated Tissue Dynamics
www.ProHealth.com • July 17, 2014
Editor's comment: In June 2013, we told you about new research conducted by Integrated Tissue Dynamics (INTiDYN), which found that people with fibromyalgia have excessive sensory nerve fibers around specialized blood vessel structures located in the palms of the hands. (See “Fibromyalgia: It's Not All in Your Head – It's in Your Hands!”) This week Dr. Frank Rice, President and Chief Scientist at INTiDYN, sent out this letter updating us on what they have been doing since releasing their groundbreaking study last year. Following the letter, you'll find links to the original journal article and related documents as well as some additional notes from Dr. Rice.
It has been too long since I have been in contact with many of you. An update is long overdue.
I am sure you wish research would go faster and so do we. We regret that we have not yet published anything new since the study last June in PAIN Medicine. It took over 3 years of research for that one publication. Based on the initial discovery of a real pathology, there are more than enough ideas to pursue (many inspired by you) limited by time and money. We are working on novel ideas and funding from many angles including the recent submission of a multi-million dollar grant proposal to the National Institutes of Health (NIH) in collaboration with the Center of Excellence for Pain Medicine at the University of California at San Diego. The proposed research would expand our study on female fibromyalgia patients, add male fibromyalgia patients, and include patients with complex regional pain syndrome (also known as reflex sympathetic dystrophy) and low back pain. It will take 3 months before we will know whether it is funded. So keep your fingers crossed.
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Yard sale boosts awareness for self-help group |
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International news
Monday 21 July 2014
From Canada's Seaway News:
The Seaway M.E./FM Self
Help Group strikes a pose.
(Photo: © Adam Brazeau)
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Yard sale boosts awareness for self help group
By Adam Brazeau
Published on July 20, 2014
CORNWALL, Ontario - The Seaway M.E./FM Self Help Group hosted its third annual yard sale to help its members cope with a life-altering disease.
The group was up bright and early July 19, bartering with hundreds of bargain hunters to raise funds for upcoming events and activities.
The self help group is open to anyone with M.E. (Myalgic Encephalomyelitis) better known as Chronic Fatigue Syndrome and Fibromyalgia (FM).
The group delivers information sessionsto newly diagnosed individuals, provides literature on the two illnesses, and offers an aqua fitness program for a yearly cost at the Cornwall Aquatic Centre at noon every Tuesday and Friday.
FM sufferer and president of the registered charitable organization Denise Hurtubuise, said the event continues to grow each year.
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A mystery no longer? |
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International news
Sunday 20 July 2014
From Health Rising:
Are the pieces finally starting
to come together
for
Chronic Fatigue Syndrome?
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A Mystery No Longer? The Big Picture Emerging In Chronic Fatigue Syndrome – Dr. Bateman Talks
By Cort Johnson on July 17, 2014
Puzzle Pieces Coming Together
“There have been some things that have really helped me … to move my thinking forward… . The picture is coming together.”
– Dr. Lucinda Bateman from a talk at OFFER
Take the pieces of a big puzzle – piece a few together, scatter some of the rest on the floor, and then throw the box and the rest of the pieces away – and that’s what we’ve had with Chronic Fatigue Syndrome. We’ve had a few pieces of the puzzle, some of which fit together (and some of which didn’t appear to) but nowhere has the broad outline of the puzzle – the disease – been apparent.
Dr. Lucinda Bateman thinks that’s changing. In a videotaped talk for OFFER (The Organization for Fatigue & Fibromyalgia Education & Research) she stated she believes the broad outlines of the ME/CFS puzzle are now visible, and as they continue to become more visible we’ll be able to fill in the pieces of the puzzle faster and faster.
Two events helped Dr. Bateman come to this conclusion.
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