About my blog…
My blog is mainly about my experience of living with the illness Myalgic Encephalomyelitis (ME).
What I write here is only about my own experience. ME affects everyone differently, different symptoms, different triggers and different levels of severity. We each handle it and the challenges it brings in our own individual ways. I want to raise awareness for all ME sufferers, but I am not speaking for all of us, only me.
As for the puffins and the penguins…
The name of my blog, Puffins and Penguins, was born from two things that I loved and lost to this illness.
Early in 2014 I applied, successfully, for the opportunity to live and work at the ‘Penguin Post Office’ at the base Port Lockroy on Goudier Island, located on the Antarctic Peninsula. I would have been there for four months, from November 2014 to March 2015, but in September 2014 I had to make the devastating decision to withdraw from the team due the onset of my ME. This remains one of my greatest losses to this illness.
I visited Iceland for the first time at the end of 2013 for New Years Eve and I fell in love with Reykjavík. So much so that I was considering moving there (probably only temporarily) and planned to look into how I could make it happen after my return from Antarctica, which of course didn’t happen. I have been back a few times, in my early ME days when my illness was less severe, but moving there was no longer an option. Another great loss to this illness.
So I decided to name my blog after two delightful birds who are native to the two places that were most significant to me at the time I became unwell with ME, Iceland and Antarctica, Puffins and Penguins.
About ME, the official stuff…
Myalgic Encephalomyelitis (ME) is a complex neurological disease involving profound dysregulation of the central nervous system, the immune system, the endocrine system, dysfunction of cellular energy metabolism, mitochondrial impairment and ion transport and cardiovascular abnormalities.
There are an estimated 250,000 people with ME in the UK and 17 million worldwide.
ME is classified under the World Health Organisation’s International Classification of Diseases as code 8E49 in the neurological chapter (diseases of nervous system) of ICD-11 (released 18th June 2018), and has been since 1969 (in ICD-8). The International Classification of Diseases (ICD) is the international standard diagnostic classification for all epidemiological, health management purposes and clinical use.
ME is recognised as a disability and is listed amongst “impairments with fluctuating or recurring effects” in the UK Equality Act 2010 Guidance Document. The Equality Act 2010 forms the basis of anti-discrimination law in the UK. It protects people against discrimination, harassment or victimisation in the workplace, and as users of private and public services based on nine protected characteristics: age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, and sexual orientation.
ME Organisations, Charities, Blogs, Forums and Support Groups…
My local support group. An Edinburgh based charity, edmesh has been supporting people with ME in Edinburgh and the Lothians for over a quarter of a century. They work to advance the health and well being of people with ME and foster a sense of community by providing support, information and friendship. In a effort to combat the isolation felt by many people with ME, they run a range of events, including a monthly cafe meeting, where people can meet and share experiences. They offer a range of services for people with ME including yoga classes, a postal library of books about ME and a quarterly newsletter. Their financial assistance provides relief to those in need as a result of their illness. They are committed to being a voice for people with ME and maintain strong links with other ME groups in Scotland and the UK. Their open meetings feature speakers from the medical profession and ME community and their quarterly newsletter is sent to MSPs and healthcare representatives across Scotland.
A UK charity, the ME Association aims to support people with ME through all stages of their illness. They help people understand and come to terms with their illness and help them get the diagnosis and medical help they need. They help people struggling to cope practically, emotionally and financially and help them explain their illness to disbelieving relatives, colleagues and friends. They work to shield people from remedies that offer false hope and campaign and speak out for those who can’t defend themselves Their ultimate goal is to find a cure for people with ME and they are working to support the UK ME Biobank as a vital resource for future UK research.
A UK charity, Action for ME takes action to end the ignorance, injustice and neglect faced by people with ME. They do this by meeting need now to improve the lives of people with ME while taking action to secure change for the future. Alongside providing information, support and advice to people to help improve their health and well-being, Action for ME work with professionals to enhance the care and support that people with ME receive and funds pilot research projects to advance knowledge of the illness.
An independent UK charity finding, funding and facilitating a strategy of biomedical research into ME, and promoting better education about ME. Invest in ME Research is run by volunteers – patients or parents of children with ME – with no paid staff.
Based in Scotland, the principal aim of ME Research UK is to energise ME research by commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of ME. Their mission is also to raise awareness of the need for biomedical research into ME globally and to provide high quality information on all aspects the of ME for a wide range of audiences — from summarising and appraising scientific literature on ME to informing the policy agenda. ME Research UK recognise that much of the existing research into ME has concentrated on psychological interventions designed to ‘manage’ the illness, they believe that a programme of biomedical research is what is needed, and is what most patients and carers want to see. They are committed to establishing ME Research UK as a major force for change that will make a real, long-term difference to the lives and prospects of people with the disease.
Tymes Trust is the only (UK) national ME charity dedicated to children and young people with ME and their families. Their entire team work pro bono and in 2010 they received the Queen’s Golden Jubilee Award for Voluntary Service, for pursuing the educational rights and advancing the care of children with ME.
Their vision is to drive clinical & biomedical research to improve the recognition, diagnosis and treatment of ME. Their mission is to sustain an open biobank resource which enables translational research and high quality, ethical investigations for the clinical and biomedical understanding of the illness and in so doing, fosters cooperation and collaboration between researchers and enhances the opportunity for breakthrough discoveries.
Based in the USA, and under the guidance of world-renowned geneticist Ronald W. Davis, PhD, the Open Medicine Foundation is spearheading chronic complex disease research that follows patterns of success and benefits from collaborating with leading scientists and clinicians from around the globe. These experts bring to their foundation their expertise in immunology, virology, genomics, informatics, molecular biology, epidemiology, infectious disease, oncology, pathology, and clinical medicine. Their ultimate goal is unlocking the mystery of ME and end the suffering caused by the disease.
Based in the USA, the Solve ME/CFS Initiative envision a world free of ME and work to make ME understood, diagnosable and treatable. Their strategy is to engage their community to participate in research, to accelerate the discovery of safe and effective treatments and aggressively expand funding for treatments and cures. They offer information and resources to patients, family members, caregivers, support groups, media professionals, the general public and health care professionals.
#MEAction is an international network of patients fighting for health equality for ME. They build community and empower patients and advocates with the technological tools and advocacy training needed to effectively mobilise for ME equality. They were founded with the belief that while people with ME may find it difficult to advocate for themselves in the physical world, in the virtual world, they can be an unstoppable force.
#MEAction have put together a research summary providing essential stakeholders with access to a compiled, digestible resource that can help them excel in their respective areas of expertise, including clinicians, health officials, government leaders, journalists, the next generation of researchers and, of course, the ME community.
A crowd-sourced knowledge base on the history, science and medicine of ME around the world. MEpedia is a patient community project being built by patients, founded by #MEAction.
Five years ago, TED Fellow Jennifer Brea became progressively ill with ME. In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.
Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure. You can read my review/thoughts about Unrest in Post Nineteen. Time For Unrest.
Stop Graded Exercise Therapy (GET) is a group of patients who have serious concerns about the use of GET for the treatment of people with ME. Patient surveys report serious harm, often permanent, from GET in ME. They feel GET is a risky treatment option for ME. They are further concerned that trials for this therapy are ongoing, and that the therapy is now being trialled on children. This site and the petitions linked on it are a result of our concerns about the inappropriate use of GET as a treatment option for ME.
Approximately 25% of ME sufferers remain ill long term and are severely disabled by the disease. Many are left isolated, housebound or even bedbound by the effects of the illness. The 25% ME Group exists to support all who have the severe form of ME and those who care for them. This includes people who are housebound, bedbound and wheelchair users. At present there is no other organisation concerned specifically with the needs of the severely affected.
Let’s Do It for ME is run by ME patients who support, and have the same objectives as the charity Invest In ME Research – high quality biomedical research resulting in a better understanding of the pathogenesis of ME as well as in the development of appropriate treatments. They work closely with Invest in ME Research to discuss fundraising events and ideas. They rely heavily on a core planning group and team of supporters who have come up with visionary ideas for unique events and challenges to raise funds – all to ensure people with ME get the vital biomedical research they so need and deserve. The campaign has supporters from all over the world and it has forced change through imaginative ideas, selfless efforts, dedication and positivity – a Can Do approach to a disease where so many have suffered unnecessarily for too long.
Forward-ME consists of a broad spectrum of charities and voluntary organisations invited by the Countess of Mar to meet from time to time. The Aim of Forward-ME is to promote effective joint working by ME and CFS organisations to maximise impact on behalf of all people with ME and CFS in the UK.
Founded by Cort Johnson, Health Rising is dedicated to providing timely, accurate information to people with ME. Committed to create a site devoted to understanding ME Cort opened a very basic site around 2004 called Phoenix Rising (below). By 2010 with the addition of a blog, a forum and hundreds of articles/blogs, Phoenix Rising had become the most visited website devoted to ME on the internet. In December 2012, with the help of the Simmaron Foundation, Johnson left Phoenix Rising to form Health Rising and has since produced hundreds of blogs on ME.
Phoenix Rising provides people with ME information to support their health and well-being. They publish articles and a newsletter, maintain the largest ME forum in the world, and have the biggest database of information about ME on the web.
Science for ME is an independent, patient-led, international forum for people with ME and the carers, clinicians, scientists and advocates who support us.
Trial By Error is a blog within a blog. Dr David Tuller, author of the Trial By Error blog, is a senior fellow in public health and journalism at the Center for Global Public Health, School of Public Health, UC Berkeley. Tuller is an experienced public health activist, he writes about the flawed PACE Trial and other matters related to ME. Tuller posts his blog, Trial By Error, on the Virology Blog (a science blog centred on viruses and viral disease by Vincent Racaniello, PhD).
Blog by Simon McGrath. The ME/CFS Research Review blog aims to explain the most promising biomedical findings. There will be occasional, in-depth blogs explaining the science from the most important studies, and what the findings mean.