Stonebird

A Guest Post by Kara Jane Spencer Stonebird is proud to publish this stark reminder by  Kara of the  the real symptoms of ME and how serious they are. "So tell me. To what extremes would you have to push your body, that it would faint and vomit due to the sheer level of exertion you were putting it through? For my body with very severe ME, the level of exertion which results in fainting and vomiting, is just going to the toilet. Not even walking there, or standing. Being hoisted into a toilet chair and being assisted by carer's every step of the way. That's it. That is my maximum exertion level. I DO NOT want sympathy. I consider myself fortunate. I have friends with this disease fighting for their lives. But I DO want awareness and for you to consider the level of dysfunction we are talking about here. Objective measurable dysfunction; heart rate erratic, bp low, temp low, oxygen low, hypoxia, low blood perfusion to the brain etc. Serious dysfunction from ex...

A Guest Post by Malcolm As a UK M.E sufferer you think we would have become immune to it. However as many of us woke to face another day of pain and struggle we could add the familiar sting of media persecution to the list. All the usual suspects are present and correct – derogatory terms such as “yuppie flu”, the obligatory model trying to look “tired” and in need of some good positive thinking. Usually the rage lasts 10 minutes, but the Telegraph has hit a new low with its recent article.  The last few weeks has seen Lyme disease become the cause célèbre of the press – every local rag scrabbling to find some local bastion of the community fighting this dreadful disease. No questions have been asked, no suggestion of malingering; after all a billionaire has exposed this scandal -  and they as we know are unimpeachable. It is amazing what a well funded PR campaign can achieve in a little over a fortnight. No wonder many in the M.E community wish to jump ship and attain a...

We live in the broken places Very few know or comprehend, We live on the edge of life Not knowing if or when we will fall off Yet clinging on regardless of the intense unbearable, indescribable levels of suffering We hold on to all that is good All that is true All that is life And will ourselves onward Towards hope that seems hopeless Yet still we demand of it To come to our aid Inspite of the unlikeliness We trust in tomorrow Even when today is tortured, Unbearable, Impossible even, Yet we do not give in to despair, instead, Despite our own agony Or even, because of it Because we know what most cannot even glimpse, We hold out invisible hands And create a network of love To gently embrace, surround and comfort Those in desperate need In the void of clinical neglect And abject torment. We will each other on Where the world has turned its back And simply has no answers Nor recognition As a result. We somehow endure And be The bedrock Of missing sup...

As someone who has fought for over twenty years for a medical service for his wife, as a finalist in the British Journal of Nursing, Nurse of the Year Award 2015, as a member of the Labour Party, I posted a detailed letter, outlining the shameful politics of ME, to Jeremy Corbyn, yesterday urging him, with all the power and passion I could muster to ask this question at Prime Minister's Questions : "Please can you explain why there is no national or local medical neurological service in the UK for patients with Myalgic Encephalomyelitis (ME), classified since 1969 as a neurological disease by the World Health Organisation (G93.10.3) Tens of thousands of seriously ill patients in the UK currently receive no ongoing clinical support, no adequate investigation, not even a safe diagnosis. Surely ME must be the only neurological, multi-system disease that is not treated with the seriousness and respect that it deserves? Instead patients are abandoned, often for decades on en...

I have fought for so long, but the despair in Linda's face, when we came across this MEA list of UK "Specialist Services", last night, has gutted me. It feels far too big, the  psychiatrists have comprehensively won the battle to bury ME under a pile of crap called CFS !!! BUT as Winston Churchill said : “Never give in--never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honor and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.” We FIGHT ON. The psyche's  is an empire built on sand, lies , deceit, manipulation and cover-up.  I am posting a letter today to Jeremy Corbyn. http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

Our world is extreme and bleak Cracked by pain, removed by paralysis, separated by noise sensitivity We live through it By trying to connect with each other In a massively disconnected context Some days we manage Other days we miss each other All days we love each other That is the truth of this ME.

Utterly broken by the noise assault upon my being It enters into every nook and cranny of my existence, every cell, every organ, it seems, And devours me from the inside, paralysing me from head to toe, so that time after time, no part escapes. I am tormented. I am scalded with pain. I am raging at the injustice: the continued violation of my home, my living space, my body, my life, my cells, battered, twisted, demolished, repeatedly till I can no longer bear another second of the horror of it. It defines my life. It breaks me into tiny fragments so that my body will not, cannot, is not able to hold me up, to feel, to move, to think, to escape this daily torture from loud and violating noise attacks to even simple ordinary things. It is unrelenting and a violent assault upon an already weak and fractured body. My life is being torn from me And ripped apart repeatedly, with crass ignorance And deliberate carelessness or abuse of power and...

While you are getting up and going to work ME, I am in agony and paralysed While you are driving around in your car ME, I am struggling to get my toes to move While you are wondering which delicious coffee and pastry to try next, ME, I am struggling to figure what is safe to eat on my sugar free, dairy free, gluten free, wheat free, hydrolysed fat free, alcohol free diet While you are enjoying a pint or a glass of wine or a gin and tonic or an infinite number of cocktails, ME, I am struggling to work out if it is safe to drink tap water or bottled water While you are going shopping for clothes and enjoying the choice of trying on the latest fashion ME, I am struggling to find any clothes I can wear at all that will not hurt me While you are splashing on your perfume and enjoying the delights of skin and hair products ME, I am struggling to find a soap I can use just to wash with at all While you are laughing, chatting, enjoying the ordinary social banter of life ME, I am t...

People with Severe ME need this : The correct information that ME is a neurological disease with multisystem dysfunction, not just some fatigue condition that you can recover from with Cognitive Behaviour, Graded Exercise Therapy or a Think - Yourself- Well course. Support provided by those who are acutely aware of the physiological issues of ME and the extreme danger of harm and deterioration that can result from any interaction, however well intentioned. Well experienced, medically aware consultants with a genuine overview of neurological ME and its biomedical implications who will properly investigate the underlying physiology. This will not happen all the time psychiatric misrepresentation is promoted. It is so dangerous to think you can engage with people who deny or who do not understand your illness.

I was lying on the operating table this morning, having a biopsy taken on my face - when the surgeon asked me if I had heard of the Lightening Process for ME ! It was not easy staying still and calm !!! Still it was an opportunity to discuss and hopefully educate the theater staff in Very Severe ME - and how the LP is utterly not appropriate : while the surgeon stitched my face up !! I didn't even notice the operation, I was so fired up !!! How WONDERFUL and incredible it was to return home and have this huge framed poster of Notes for Carers delivered ; a present from Design Cuts, the amazing people I buy all my fonts from !!! https://www.designcuts.com/ (The newly updated website for Notes for Carers is here : http://stonebird.co.uk/Notes/index.html )