Welcome To The York ME Community

Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.

Nanoneedle Update: Finding What’s In The Blood

RonDavis

    By Janet Dafoe in Phoenix Rising. There are a lot of various threads and tweets about this so I asked Ron to clarify where the research is at and what the plans are. As for everything else, this has gone a lot slower than it could have if he’d had more funding. The […]

Natural Born Killers

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  From ME Research UK.   Despite their dramatic name, natural killer (NK) cells are actually a very important part of our immune system and help protect us from viruses by killing cells that have been infected. They can also target tumour cells. There is evidence to suggest that the cytotoxicity of NK cells (that […]

Tips On How To Survive The Festive Season

Christmas Tree

  By Jo Moss in A Journey Through The Fog.   Christmas can be a particularly hard time of year for people living with chronic ill-health. It can be a mental and physical strain, filled with potential pitfalls. I have to admit I’ve never been a Christmassy person. We (my family) didn’t celebrate Christmas when […]

Resting When Tired Isn’t Lazy – It’s Self Care

Resting

    By Jo Moss in A Journey Through The Fog.   Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the […]

What “Phantom Nasal Congestion” May Tell Us About ME/CFS And Fibromyalgia

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    By Cort Johnson in Health Rising.   When you have a systemic disease, any part of your body can provide a clue – even your nose. Over 15 years from 1998 to 2012, James Baraniuk, a longtime ME/CFS and GWI researcher at Georgetown University, became the first and thus far the last person […]

Trial By Error: Fiona Godlee Doubles Down On Lightning Process Study

Lightning

      By David Tuller, DrPH. Earlier this week, Dr Fiona Godlee, editorial director of BMJ, e-mailed me in response to concerns expressed about the study of the Lightning Process published in Archives of Disease in Childhood, one of the journals under her purview. Those concerns were expressed in an open letter to her […]

Christchurch Chronic Fatigue Syndrome Sufferer Told It Was All In Her Head

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  By Oliver Lewis in stuff.co.nz.   An estimated 16,000 to 20,000 people in New Zealand have chronic fatigue syndrome. Despite this, the debilitating condition remains poorly understood. OLIVER LEWIS reports. Gillian Watson calls it the year she forgot. The Christchurch woman was struck down with flu in the latter half of 2015 and never really […]

7 Ways To Tackle Low Self-Esteem With Chronic Fatigue Syndrome And Fibromyalgia

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  By Colleen Downey in The Mighty.   Self-esteem is generally described as the degree of regard or respect individuals have for themselves and is a subjective measure of worth that we place on our abilities and judgments; it is an understanding we create of our worth based on emotions and beliefs about how we […]

Sainsbury’s, I Don’t Need A Lanyard To Warn You About My Disability – You Need To Provide Better Training

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    By Liz Johnsin in The Independent.   It’s great that major brands are getting serious about inclusion, but initiatives should focus on taking away barriers, rather than forcing marginalised groups to mark out their difference. Sunflower season may be over but Sainsbury’s wants to see more in bloom this autumn following its latest announcement. On […]

UK Charity Pledges £500,000 For Research Into ME In Norwich Research Park

Research Study

    From The Quadram Institute.   UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP). This major investment builds on the foundations already made for a UK/European Centre of Excellence for ME research hub in Norwich Research Park. The […]

International Day of People with Disabilities: Hannah Dines – Why I’m sick of ‘inspiration porn’

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    By Hannah Dines in BBC Sport.   It happens time and time again in Paralympic sport that the story is chosen for us. Our disability is the negative comparison that makes our positive sporting performance legitimate. We cannot have one without the other. The irony here is that for many Paralympians, their disability […]

General election 2019: What’s Pledged For Disability And Mental Health ?

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      By Damon Rose & Beth Rose in BBC News.   With 13 million disabled people in the country, plus their friends and family, the political parties have a huge community to court. Universal credit is still making headlines, while the main parties are divided on what to do with the social care […]

“Neither Dying, Nor Recovering”: Learning From ICUs To Solve ME/CFS And Fibromyalgia – A Synopsis

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    By Dominic Stanculescu in Health Rising.    From Dominic   I believe observations made in Intensive Care Units can further understanding of ME/CFS.   Indeed, following a severe injury or infection some ICU patients fail to begin recovery for unknown reasons. This condition, termed “chronic” or “prolonged critical illness,” is characterized by neuroendocrine dysfunctions perpetuated by cytokines and oxidative/nitrosative stress. Regardless of the initial injury or […]

You Don’t Look Sick: ‘People Think I’m Too Young To Be Disabled’

Frustration Chronic Illness

    By Laura Abernethy in The Metro. ‘But you don’t look sick’ is something that people with chronic illnesses often hear. Others judge them based on their idea of what disability looks like. Our series speaks to a different person each week about their experiences of living with a long term condition and how […]

Disabled People Like Me Are Being Forced To Battle Daily For Our Most Basic Needs

Disability

  By Susan McKinstery in Huffpost.   I was born in 1981, the year declared “International Year of Persons with Disabilities” by the UN. It heralded the beginning of the “Decade for Persons with Disabilities”, which saw the beginning of what would go on to become landmark equalities legislation and political policy making. The intention for […]

Are You A Clumper Or Slider ? The ESR ME/CFS And Fibromyalgia Poll

Blood Cells

By Cort Johnson in Health Rising.   It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]

York Disability Forum

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  Today I’ll be attending a meeting to see if creating a York Disability Forum will be helpful in giving us more of a voice in the area.  I’ll report back on here as to how it goes. If you’re in York and want to let me know of any good, bad or indifferent stories on […]

Ask About My Disability If You’re Curious, But Don’t Patronise Me

Samantha Renke

    By Samantha Renke in the Metro.   As a disabled woman, I’ve sadly become somewhat immune to overt forms of aggression and discrimination. I almost expect the lift to be out of service whilst shopping. I also acknowledge that my work prospects are diminished in comparison to my non-disabled peers, and that it’s highly […]

Solid Ground At Last ? Cytokines Make Good In Major ME/CFS Review

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  By Cort Johnson in Simmaron Research.   The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness behavior” produced during an infection – it seems that the immune system must […]

Meet The Researchers – Michael Van Elzakker (PhD) and Kenneth Kwong (PhD)

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From Solve ME/CFS Initiative.   Michael (Mike) Van Elzakker, PhD, a researcher at Massachusetts General Hospital and Harvard Medical School, has been an influential thought leader in how the field might leverage imaging techniques to assess neurological features of ME/CFS. Kenneth (Ken) Kwong, PhD and Suk-tak (Phoebe) Chan, PhD, experts in functional magnetic resonance imaging (fMRI), will co-lead the […]

‘They Think Disability Is Almost Worse Than Being Dead’

Disability Dice

By Kate Scotter in BBC News.   “I won’t let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you.” To watch Tilly Moses perform her folk music on stage, there are no visual clues she’s disabled – although the message is there […]

Antibiotics: Even Low Use In Children Can Have A Negative Impact On Health – New Research

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  By Oliver van Hecke in The Conversation.   GPs in the UK carry out over 300m patient consultations every year and at least a quarter of these deal with children. Almost two-thirds of such appointments are for coughs, sore throats, or earaches – illnesses which young children commonly get. Doctors and nurses group these types of illnesses […]

Link Between Inflammation And Mental Sluggishness Shown In New Study

Brain Fog

From Science Daily.   Scientists at the University of Birmingham in collaboration with the University of Amsterdam have uncovered a possible explanation for the mental sluggishness that often accompanies illness. An estimated 12M UK citizens have a chronic medical condition, and many of them report severe mental fatigue that they characterize as ‘sluggishness’ or ‘brain […]

What An M.E. Crash Feels Like

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    From the Mummying And M.E. Blog.   NB: This is just my experience of an M.E. crash. This description is not going to be the same for everyone. My daughter is talking to me this morning, but I don’t understand what she’s saying. My husband has been doing the washing up downstairs, opening […]

Don’t Fight The Quicksand

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From Lorem Ipsum Life   When I was a kid I thought quicksand was going to be a much bigger problem.* Weirdly, as inaccurate as the movie depictions were of quicksand, they make an excellent analogy for activity and ME. TV and movies taught me that if I fall into quicksand, the worst thing I could […]

A Trial Of ME – Elizabeth’s Story

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  By Elizabeth Thorne in #MEAction. This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. […]

How England’s Broken Planning System Has Created (Not Reduced) The Risk Of Floods

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  By Lee Bosher in The Conversation.   Recent floods in England have been described as unprecedented or even “biblical” events, often with the misguided assumption that they were unavoidable or unpredictable. That is not the case. Over the past few decades, development practice in England has led to more than 300,000 homes being built in […]

5 Things Councils Can Do To Make Areas More Accessible

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    By Heather Lacey in AccessAble.   As the world becomes more and more connected, we are increasingly fortunate to have the potential to explore more of what the UK’s towns and cities have to offer. Getting out and about to enjoy the activities and attractions that our Towns and Cities have can be […]

Trial By Error: “Bristol, It Is Time To Withdraw Your Complaints To Berkeley”

David Tuller

    By David Tuller, DrPH I have sent the following letter to Jane Bridgwater, Bristol University’s director of legal services and deputy university secretary. ********** Jane Bridgwater Director of Legal Services and Deputy University Secretary University of Bristol Bristol, UK Dear Ms Bridgwater: I have raised multiple concerns in recent years about research conducted […]

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