Friday, December 27, 2013

'I've got the bones of a 100-year-old': 22-year-old with severe ME could break a rib by just sitting up too fast

  • Jessica Taylor developed ME when she was just 14 years old
  • She was so ill she had to be fed through a tube for two years and could not speak for 18 months - was unable to move anything other than her head
  • As she has been in bed for so long, she has developed osteoporosis
  • This means she could break her back or hip just by sitting up too fast
  • She is now at home but has to have 24-hour a day care, can't leave her room and needs a hoist to move her from her bed to a chair
  • She has launched a charity called Share A Star from her bed - aims to make sick children feel special and sends them packages of goodies in hospital

By EMMA INNES PUBLISHED: 09:45 GMT, 25 December 2013: L

A 22-year-old former netball captain says she ‘lost everything’ when severe ME caused her to be bedridden and to develop the 'bones of a 100-year-old'.

Jessica Taylor, from Rochester, Kent, spent four continuous years in hospital and has not left her bed for seven years.

While she was in hospital, she was so ill she couldn't recognise her family, had to be tube-fed and was unable to move anything other than her head.

As she has been in bed for so long, Jessica has now developed severe osteoporosis and was told by doctors that she has ‘the bones of an 100-year-old’.

She remains so weak she is barely able to sit up and just moving from her bed to a chair requires the use of a hoist.
Jessica told MailOnline: ‘My life is a world of one room. The ME caused me to lose everything in the end.

‘I’ve got a fight on my hands and I believe I am going to get better.’
Jessica first fell ill when she was 14.

She suffered a bout of the flu which she never recovered from and, despite trying to push herself, her health rapidly deteriorated and within nine months she was bedridden.

Read more>>

Wednesday, December 25, 2013


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Sunday, December 8, 2013

Immune Abnormalities in Patients Meeting New Diagnostic Criteria for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Immune Abnormalities in Patients Meeting New Diagnostic Criteria for
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Brenu EW1,2*, Johnston S1,2, Hardcastle SL1,2, Huth TK1,2, Fuller K1,2, Ramos SB1,2, Staines DR2,3 and Marshall-Gradisnik SM1,2
1School of Medical Science, Griffith University, Gold Coast, Queensland, Australia
2The National Centre for Neuroimmunology and Emerging Diseases, Griffith Health Institute, Queensland, Australia
3Queensland Health, Gold Coast Public Health Unit, Robina, Gold Coast, Queensland, Australia

Background: Immunological abnormalities have been identified in Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis patients fulfilling the 1994 Centers for Disease Control diagnostic criteria. Significant developments have been made to diagnostic criteria, but potential immunological markers have not been assessed in patients fulfilling these latest clinical requirements. Therefore, this study evaluated immunological parameters in patients that also fulfill the latest diagnostic criteria available known as the International Consensus Criteria.
Methods: The Immunological investigations including Natural Killer cell activity and phenotyping studies for
dendritic cells, neutrophils, B cells and regulatory T cells were performed on whole blood samples collected from all participants using flow cytometric protocols. The physical functioning of all participants was also evaluated using scores from the Short Form Health Survey, and the World Health Organization Disability Adjustment Schedule.
Results were compared according 1994 Centers of Disease Control and Prevention defined patients, and
International Consensus Criteria defined patients, and healthy controls.
Results: Natural killer cell activity was consistently and significantly decreased, and regulatory T cells were
significantly increased in both patient groups compared to healthy controls. Differences were found in human
neutraphil antigens and expression of natural killer cell receptors between patient groups. Highly significant
correlations were also found between physical status and some immune parameters in International Consensus
Criteria defined patients.
Conclusion: This preliminary investigation on different diagnostic criteria suggests that the International
Consensus Criteria may be more effective a detecting salient differences in the immune system. Read more>>

Wednesday, December 4, 2013

Vote for November's Project of the Month! Vote for Canary in a Coal Mine

It's time to choose November's Project of the Month. The project that receives the most votes for Project of the Month will receive a consultation from our Project of the Month partner, Tribeca Film Institute!
Voting will be open until Friday December 6 at 5 PM Eastern.
"Mudbloods" is a feature documentary that follows the UCLA Quidditch team on their journey to the 5th Annual Quidditch World Cup. The film is about the fearless, bold individuals who dedicate their lives to the sport of Quidditch; the entrepreneurial force behind the International Quidditch Association; and the cultural phenomenon that has defined a generation. It’s a sports doc unlike anything you've ever seen because it's a sport you could've never imagined... until now.
"Canary In A Coal Mine" is the story of one of the worlds most prevalent, devastating, and misunderstood diseases. It follows Jennifer as she documents her own story and the stories of several extraordinary individuals struggling to find their way, fight, accept and sometimes even thrive in spite of "an illness that has no end." At its heart, the film asks: what does this illness signify about the world we live in and what do we all risk by ignoring the voices of the sick and the profoundly invisible? What could we all learn by paying attention to those voices?
A group of thieves reunite five years after a failed heist to determine what went wrong and who is to blame as they attempt to recover the missing loot. Starring: Max Casella (The Sopranos, Blue Jasmine, Inside Llewyn Davis, Killing Them Softly, Spike Lee's OldBoy) and 4x Tony-nominated actor Danny Burstein (Boardwalk Empire). This is the debut feature from writer/director Scott Kawczynski.
Pier Kids: The Life examines the legacy of Stonewall and the Gay Rights Movement it ignited by following the lives of DeSean, Krystal, and Casper, three gay and transgender youth of color who, after being pushed out of their home because of their sexuality, have become homeless on the same street the riots took place more than forty years ago. Together, these three people weave a surprisingly complex story of love, family, exploitation, beauty, and hope. But it's more than the story of three. It's the story of thousands.

"Naz + Maalik"

Two first-generation African-American Muslim teens — close friends, classmates, business partners and something more – have their Friday, and potentially their entire lives, ruined by surveillance as their ambiguous and secretive relationship sets off flags among the relentless bureaucrats still fighting the War on Terror in the far-flung outpost of Bed-Stuy.

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Which Project Do You Most Want to See?


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