Category Archives: Patients

Martin Eve, humanities researcher, open access innovator and cerebral vasculitis patient

martin-eveCan you tell us a bit about yourself?

I’m a Professor of Literature, Technology and Publishing at Birkbeck, University of London. I specialise in contemporary American fiction (primarily the works of Thomas Pynchon, Don DeLillo and David Foster Wallace), histories and philosophies of technology, and technological mutations in scholarly publishing. And I’m a member of the UK English Association’s Higher Education committee.

And you’re involved with the open access movement?

Yes, I wrote the book Open Access and the Humanities: Contexts, Controversies and the Future (Cambridge University Press, 2014: 9781107484016). Continue reading →

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Ernesto Priego, multi-scholar and carer

I wanted to interview Ernesto when I saw this tweet:

ernesto priego loch ness profileI got in touch, and he agreed to talk to us.

Can you tell us a little about yourself?

I’m a full-time academic in a London University. I have both British and Mexican nationality. My background is in English Literature and Cultural Studies, and my PhD was in Information Science, looking at the way comic books relate to reproduction technologies in the context of the so-called “digital age”. I have a wide array of interests that could all be covered by the general umbrella term of “culture” (this includes science of course). Continue reading →

Stef Benstead, disability rights campaigner

DSCF0211Tell me a little bit about yourself?

I’m a Christian and a Cambridge graduate. I had started a PhD in Cambridge in conservation science, looking at how habitat loss and climate change affect two of the birds that live in the south UK, but had to withdraw after I became ill. I’ve been back in Manchester, living with my parents, for the last four years.

I became involved with the Spartacus network after the publication of their first report on the government’s move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP), and have since done a number of reports with them on Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA).

What disability are you suffering from? Continue reading →

Christy Collins, mother and M-CM patient advocate

What is M-CM?

M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome first identified by researchers in 1997.

Could you tell us a little about the M-CM Network and how it was formed?

When my daughter, Signe, who is now 2 and a half years old, was diagnosed with M-CM, there was already a strong patient support community online facilitated by a family in England. The Internet and social networking largely solved the problem of connecting patients to each other without the need for a formal organization or fundraising.  Because peer support was taken care of, our own organization was founded to accelerate research and make it easier to get clear, reliable information about M-CM.

Continue reading →

Eric Johnson, patent facilitator and cancer survivor

Eric Johnson is an engineering professional working as a patent facilitator for a multinational company. One of his jobs is to find information and “connect the dots” related to intellectual property of competitors, to develop research strategies for his company. He is also a multiple occurrence Testicular Cancer survivor who used the medical literature to research his condition and inform his treatment.

I do not believe I would be alive today if it were not for the information that can only be accessed by the layman (patient) in online sources.

Continue reading →

Wayne Wells, veteran, cancer patient and research reviewer

Wayne Wells is a 68 year old male, a Vietnam veteran and small business owner living in Cameron NY, he is also an Atlatl (spear-thrower) enthusiast and pursues canoeing and X-countryskiing.

Wayne at an Atlatl competition in 2008

He was forced into retirement in 2006 due to diagnoses with a cryptic form of aggressive CLL (Chronic Lymphocytic Leukemia) which the Department of Veteran Affairs has determined was caused by exposure from Agent Orange during his service in the Vietnam war.

Continue reading →