Invest in ME (Research) Press Release 1/2 Million Reasons for Progress with ME

UK Charity Invest in ME (nr 114035) today announces that its biomedical research fund for ME has now passed £1/2 MILLION – raised over the last four years by ME patients, their families and friends.

Whilst UK scientific research into ME has been starved of funding for a generation by the official funding bodies responsible for allocating public funds the charity’s supporters have used positive and inspired campaigning to change the path of research in the UK and Europe.

This crowdfunding has allowed the charity to initiate possibly the two most important research projects for ME in the UK – a gut microbiota study in the Norwich Research Park with IFR/UEA and a project leading to a clinical trial of the rituximab drug in cooperation with UCL.

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BBC documentary features ME/CFS and Fibromyalgia sufferers

BBC One documentary, Operation Meet the Street,  focuses this episode on loneliness and sees Kate a ME/CFS sufferer and Simon a fibromyalgia sufferer, talk about their illnesses.

Kate talks about ME/CFS at 4:21.

Simon talks about fibromyalgia at 17:24.

First broadcast: 18th December, 2014

Eye health could help diagnose people with chronic fatigue syndrome

Issued by Fight for Sight on 23 January 2015

Chronic fatigue syndrome (CFS) is well known for causing exhaustion. It’s also linked to a wide range of other symptoms such as pain, poor sleep and trouble concentrating. But despite the fact that people with CFS often report visual symptoms such as being very sensitive to light and having dry, itchy or painful eyes, little research has been done to understand exactly how and why the eye is affected. So Fight for Sight and Thomas Pocklington Trust have teamed-up to fund Dr Clare Hutchinson and co-investigator Dr Frank Proudlock at the University of Leicester to find out more about how the eye is affected in CFS.

People with CFS consistently report having trouble focussing on images, eye strain, vision-related headaches, slow eye movements and tracking moving objects, in addition to hypersensitivity to light and dry eye. So it’s possible that one or more of these symptoms experienced together with fatigue could be a defining feature of CFS. If so, it would make it easier for doctors to diagnose the condition, especially as none of the other symptoms people may experience are specific to CFS.

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2014 in review and a thank you to all who visited and to the amazing people who wrote the articles that I collated and re-blogged in the name of awareness. Thank you.

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 20,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

Knowing M.E, Knowing You

By Stephen Tudor

Fifteen years ago I came down with the flu that turned into a prolonged post-viral thingy which was eventually diagnosed as M.E. I recall being very relieved at the news as I feared it might be something long-term.

Basic research in the time of dial-up and land-lines revealed that this was a woefully misunderstood condition that only seemed to strike middle-class teens called Rachel or Isabelle and whose existence was actively disbelieved by many. This last part was more than a little confusing to me.

From being a normal lad who went out clubbing, drinking, watching City and failing hopelessly with girls I now found myself waking each morning with red stinging eyes as if I’d been up for three days straight. My head would be swirling with a thick pea soup that Jack the Ripper could run amok in while my legs were aflame with agony. I barely had enough strength to lift a brew and generally felt like I’d gone ten rounds with Carl Froch after calling his girlfriend a minger. All this struck each and every day in the first few minutes of consciousness and it usually went downhill fast from there. Yet apparently it was all a figment of my imagination.

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ME/CFS subset or co-morbidity? Neuroimaging technique identifies chronic traumatic encephalopathy in living brain

Positron emission tomography (PET) scanner unit with patient and technician operator, stock image. Credit: Wellcome Photo Library

Detection while patient is still alive improves accuracy of diagnosis and enables estimation of prevalence and risk

An experimental positron emission tomography (PET) tracer is effective in diagnosing concussion-related brain disease while a person is still alive, according to a case study conducted at the Icahn School of Medicine at Mount Sinai, and at Molecular Neuroimaging (MNI) LLC in New Haven, and published September 16 in the journal Translational Psychiatry.

Specifically, the study results suggest that an experimental radiolabeled compound called [18 F]-T807, which is designed to latch onto a protein called tau that accumulates in the brain with repetitive blows to the head, can be registered on a PET scanner to effectively diagnose chronic traumatic encephalopathy (CTE). The study results also argue the process can differentiate it from other forms of dementia while the sufferer is still alive. Until now, CTE diagnosis has only been possible by evaluating post-mortem brain tissue.

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Treating Immune Dysfunction in ME/CFS

By Sue J.

I wanted to share what happened the past few days because it is a great example of how much better I am doing now than I was 5 or 10 years ago, thanks to treating immune dysfunction which is at the heart of ME/CFS.

My college son called last week saying he had bronchitis. It’s a common occurrence for him and for me, probably because the characteristic immune dysfunction in ME/CFS generally makes us more susceptible to bacterial infections. By now, he knows the signs and understands how important it is to nip it in the bud, so as soon as he felt that tightness in his chest and began to cough, he saw our doctor and got on antibiotics. He comes home every Sunday so I can refill all his medicine boxes (and for Sunday dinner!), so we’d all been together a few days earlier.

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