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Showing posts from September, 2018

THE BASIC PRINCIPLES BEHIND SEVERE ME-AWARE CARE :

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● Never define the person by their behaviour. ● Acknowledge the serious and severe physical illness underlying the person’s symptom experience.
● Adhere to a strictly defined definition of ME (The International Consensus Criteria).
● Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.
● Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.
● Honour what the person says regarding their physical and cognitive needs.
● Listen to the person and only interact at the correct time in the correct way.
● Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.
● Understand and comprehe…

SEVERE ME AND INTIMACY

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How can someone who cannot bear touch, has no physical energy to engage in continued sexual intimacy, who feels ill all the time, manage to remain intimately connected to their partner? This is the question facing every couple. ME can have a devastating impact upon relationships; when ME
or Fibromyalgia enters a marriage, one casualty can be intimacy between the partners. The sexual act, as a negative experience, has been shown to correlate with the intensity of symptoms in women with ME. (Blazquez et al 2008) Pain, reduced energy, reduced interest, health problems of the
partner and increased responsibilities for the healthy spouse can all affect a couple's sex life.  (Allen 2008 ) Sex may be a too high-energy activity for someone with ME.
Another cause of trepidation or anxiety for the partner with ME
can be a diminished or non-existent libido. A very difficult issue is that if your body, your muscles, hurt all over, so you cannot bear even being touched, then sex will hurt. ( Rocky…

CORGI REGGAE

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NB If you have visual difficulties please be aware that there are moving parts and changing colours in this video!
I reckon our Corgi dog knows more about Severe ME than just about anyone. His love, concern, intuition are extraordinary. Sometimes when I just don't know what to do to help, Camy does, beautifully.
This is my loving tribute- and my first reggae song! It has been such a joy to make.





SEVERE ME : CHALLENGES TO RELATIONSHIP

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SEVERE ME presents many challenges to relationship. When Linda got ill it took us four years to get a reliable diagnosis that we were confident in, from the late Dr Betty Dowsett. She gave me the best possible advice. Reduce as much stress as possible in your life. Stop work. Up to that point I had been trying to juggle running my Training business, providing care night and day to my totally dependent wife, doing all the house work and shopping, studying part time for an MA. Something had to give and it was not going to be our relationship or my wife's health - or mine for that matter. I gave up my job 25 years ago and became a full time carer. We have had to adapt, let go of the hopes and dreams that
we used to have and live our life in a totally different way
than we had intended when we married. The lives of people with ME are profoundly unpredictable. It is
difficult to make plans when the person cannot foresee how they will be on a particular day, or even in a particular moment…

A review of M.E. and Me: A Doctor's Struggle with Chronic Fatigue Syndrome by Dr K.N. Hng

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Very rarely do you pick up a book that is so gripping, so moving, so heart-rending you cannot put it down; Dr Hng's book is one of those. Not only that, in its layout and formatting it is also particularly ME friendly. Much, much respect to Dr Hng for that! This story of senior doctor, on the verge of becoming a Consultant, yet struck down by ME could so easily be made into a prime TV drama; that’s what I kept thinking!
Wouldn’t it be great if it was? I can understand why Dr Hng is on a mission to get her book to every GP in the land, it is to teach them that ME is a physical not a psychological illness, that is the book’s main message. I am certain this book will deeply touch the hearts of fellow doctors. A gifted writer she shares intimately her great struggle to keep going, except with ME you cannot keep going, you cannot think yourself well, though God knows, she tried! Her awful experience of a body that no longer works, the hair that she no longer has the capacity to wash, t…

I KNOW HOW TO KEEP LIVING

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Yesterday, Linda in agony, her and me. Our life with Very Severe ME, one of never ending torment.Gently trying to sooth her aching, throbbing, burning feet, which cannot even bear to be touched. We have learned how to live here in this place, where nothing, NOTHING, is possible. Linda wrote once: "I know how to hold on to hope when no hope is there at all,
When you don't know even if you are going to die
because no one can help you
And no one knows.
I know how to grasp for a better moment, believe me.
I know how to be in indescribable agony for decades with no drugs to touch it.
I know how to survive the torture of noise, shutting my muscles down repeatedly, day after day after interminable day, screaming round my head for hours on end.
I know what it feels like to be violated by the horrendous sound and vibration of noise, repeatedly for years on end and be unable to escape, but have to endure it's torture.
I know how to live in blank spaces where no thought is possible, no mov…

Christine's Story : a journey with ME and Ireland's Health Service.

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Myalgic Encephalomyleitis (ME) is a complex multisystemic metabolic-inflammatory disorder, involving profound dysregulation of the central nervous system (CNS), immune system dysfunction, cardiovascular abnormalities, autonomic nervous system dysfunction; yet patients around the world are being left alone, abandoned, isolated, to rot, to just get on with it, to scrape by without hope of treatment, cure or even basic respect.
Christine Fenton’s extraordinarily moving story, set in Ireland is one of the most powerful accounts I have read of the near universal neglect and treatment of people with ME, especially the most severely affected. Her story, ultimately one of triumph, is an incredible testament to the strength of the human spirit. It is an inspiration to people with ME everywhere.
As Christine says “ME in Ireland is largely dismissed. Those living with it meet denigration, denial & dismissal”. Her experience is an awful description of that. Diagnosed with Myalgic Encephalomyeli…

THE PSYCHIATRIC LOBBY IS CRUMBLING

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All that is propping up psychiatry's shameful involvement in ME is the medical establishment's prejudice and bias. As David Tuller (2018) points out, the Cochrane Review process in ME is deeply flawed. The PACE Trial itself, along with its underlying psychosocial paradigm has been effectively rejected by the American Public Health establishment and NICE are currently reviewing its Guideline. Hopefully the new NICE Guideline will fully reflect the fact that : "biopsychosocial treatments, cognitive behavioural therapy (CBT) and graded exercise therapy (GET), are correctly recognised to be ineffective and even harmful", in ME. (Kerr 2018) As I show in the diagram below, without the AUTHORITY of Cochrane, with its flagship RESEARCH programme in tatters, with its underlying THEORY debunked, all that is left propping up psychiatry's hugely destructive, decades long involvement in ME is empty air - a toxic, suffocating mix of medical bias and prejudice. Unfortunately th…

LIVING WITH SOMEONE WITH SEVERE ME

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You tread such a fine line between coping and falling
apart when you try to live your marriage within the context of
Chronic Illness. Living with someone with Severe ME, either you give up or
you try and size up the situation and then take responsibility
for doing something about it; the choice you have to make,
every moment of every day, is a stark one. It is a choice that makes all the difference between the person
being left with nothing or with at least some glimmer of hope
that, somehow, some day their needs may be met. It is a choice that says “I am with you” or “I abandon you, because you are too difficult to live with, too difficult to help.” (From : "Severe ME, featuring Justice for Karina Hansen"
http://www.stonebird.co.uk/severemebook/severeme.html)