- Linda Crowhurst
- ME Attack by Linda Crowhurst
- Let us be clear there is real injustice going on with ME.
- The Psychiatric lobby have high jacked the name "ME" and filled it full of fatigue patients whilst alienating those of us with a genuine neurological disease and leaving us without any viable health care service.
- When is the nation going to awaken to this great con ?
- When are they going to see that the wool has been deliberately pulled over their eyes ? So they cannot see the injustice and abuse and neglect going on in the name of ME.
- It is time to make a stand and speak up loudly until we are seen and heard.
- We have to be seen and heard because failure will mean more deaths.
- ME Attack
I do not want my ME to define me So I try to define it to clarify it to demistify it to explain it so others understand the intensity, complexity and torment of symptoms I experience so I can be free from it Despite being trapped in it It is hard enough to bear the constant torment of symptoms, the never-ending physical suffering Yet harder still to bear is the ignorance, the denial, the downplaying of it all, the almost complete lack of empathy from others The complete lack of understanding of people , professionals, systems, that negate and fail me because they simply do not comprehend my reality..even still, 17 years on.Linda Crowhurst
- 28th March 2011
It is not "reassurance " that is required, but proper respect and treatment !!
27th March 2011
Permission to Repost
Myalgic Encephalomyelitis , is a serious biomedical disorder; only those in the final stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years, often decades on end .There is simply nothing more devastating then, than for a sufferer to be shoddily dismissed by a Neurologist , as my wife was once, as "just needing reassurance".
I am so angry that this is still happening to friends. I know the depths of despair that this rejection engenders; far worse, I can tell you, than any slap to the face ! It is grossly unethical.
The fact is, any Neurologist who dismisses ME as a psychiatric condition , is potentially in breach of the GMC regulations, concerning the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmcuk.org/guidance/good_medical_practice/duties_of_a_doctor.asp). Hooper 2010
(Malcolm Hooper : http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm)
Given the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the fact that ME was classified as a neurological illness by the WHO (ICD-10 G93.3) in 1969 , was recognised as a specific disease entity by The Royal Society of Medicine in 1978 ,; any neurologist who ignores this is not keeping up to date.
Any registered medical practitioner – consultant or GP who chooses to dismiss or ignore the widely available biomedical evidence , is in clear breach of the GMC regulations and this consequently raises issues of medical indemnity.
As Margaret Williams states : "By letter dated 25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, Michael McGimpsey MLA, confirmed:
“I know that in the past there has been some debate about the nature of ME but there have been a number of studies and reports in recent years clarifying that it is a very real and debilitating neurological condition”.
On 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:
“I want first to put on the record that we accept the World Health Organisation’s classification of ME as a neurological condition of unknown cause”.
By letter dated 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer:
“The Department’s view is that it is important to recognise that CFS/ME is a genuine and disabling neurological illness and health professionals must recognise it as such”.
On 11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the noble Earl whether the coalition continues to accept that myalgic encephalomyelitis is a neurological illness as categorised by ICD-10 G93.3?”.
The noble Earl, the Parliamentary Under Secretary of State for Health, (Earl Howe) replied concisely:
“The noble Countess, Lady Mar, asked whether the coalition accepts that CFS/ME is a neurological condition. The Government accepts that it is a neurological condition”.
By letter dated 19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:“I would like to assure you that the Department recognises CFS/ME as a neurological disease”.
(Evidence that the official UK position is that ME/CFS (or CFS/ME) is a neurological disorder
by Margaret Williams http://www.investinme.org/Article-704%20UK-Government%20Position%20on%20ME.htm)
Very recently, on Feb 2nd 2011 Paul Burstow, Minister of State, Department of Health, in response to Ian Swales MP, confirmed that there is :
"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem. "
(Transcript of this week’s Parliamentary debate on ME
In what other neurological disease would psychiatric interventions, designed to convince the patient there is nothing wrong with them, be advocated as first-line / core treatments ? The list of documented neurological abnormalities in ME is long and shocking : please see Malcolm Hooper's Biomedical overview : http://hoopermedical.intodit.com/page/documented-neurological-abnormalities-in-me-cfs.
If a neurologist or any other medical professional dismisses you, stating that you simply need "reassurance" or that you need to heal some underlying emotional issue , perhaps it is time to remind them of the facts : and then demand proper respect and treatment !!
- March 26th 2011
- London march against the cuts today.
We pray today for wisdom, integrity and openness to change; that the Government will see the extent of dissatisfaction about the level of cuts it is making.
We pray that they will hear the people's voice and not carry on the punative measures that will affect so many people of all ages and groups, especially the disabled and the sick,particularly people with ME.
We pray that all is held in the Heart of Love where miracles happen and joy is complete. We place our trust in God's goodness and the power of prayer to change hearts and minds.
We pray for a peaceful demonstration today, where the voice of the people is justly heard and answered.
Lord I cling to you in my need Keep me safe and help me to know that in you all will be well.
- Friday afternoon
I am screaming My body is screaming at me. Throbbing intolerably many sensations assault my sense of time and place. My body is expanding and contracting on some unseen invisible level invisible to the world Totally clear to me My vision is moving in fact I have a sense of motion when still My eyes are expanding and contracting along with everything else Leaving me giddy and out of gear with reality I cannot bear this anymore I cannot bear this right now I am screaming Who will hear ?
25th March 2011
As we pray tonight for peace, healing and comfort around the world; the mysteries of Light bring us much needed radiance in the darkness, wisdom in the void, truth in the uncertainty of living in a damaged and hurting world.
The Mysteries of Light are the Perfect companion for our Lent journey, as they bring a much needed focus to the emptiness of the desert. They help us focus our attention on Jesus’ ministry, as it builds up to the climax of Easter week.
They begin by bringing awareness of the very real presence of the Trinity ,to our attention, in the first mystery, moving on to the wonder of Jesus mission:the transforming power of love where miracles are seen and believed through the miracle of the water into wine.
Following on from the miraculous, we come to a much needed emphasis on forgiveness, reconciliation and mercy in the third mystery of Light: the main focus of Jesus Life ultimately, to bring mercy and lead us back to God, the Father, who is Love.
Moving on we come to the fourth and awesome mystery of the Transfiguration: the most powerful and wonderful transformative truth, illuminated so clearly for us through the experience of Peter, James and John; those closest to Jesus. Here we can ask that we too may be blessed in a similar way to the disciples; to grow closer in our own discipleship; to see the pure light of life , radiant in all His beauty .We can then ask to see the same truth in all our neighbours, even in our enemies: the light of life that links , unites, heals, brings hope for the world.
The fifth mystery is the mystery of the Eucharist. The purity of God’s love radiates out calling us to receive,to be fed, sustained by the essence of Light itself,manifest in the bread of Love. This is the holy gift given to us, which remains with us, which unites and strengthens us and brings us ever closer to the awareness of the living God within us. As we contemplate the true presence here within ,may we grow in holiness and carry all the gifts of the Mysteries of Light with us out into the world in the Power of the Holy Spirit.
All these mysteries are brought together on the Cross on Good Friday, but are illuminated powerfully and individually through contemplating the Mysteries of Light.
As we contemplate ,so we are lead more and more into the depths of Jesus Ministry and mission. As we pray and ask for Light to shine more brightly in our hearts and minds,so it manifests more in our lives, bringing untold blessings to what can sometimes feel like a tedious and dark journey towards the Cross, through Lent.
How can we not rejoice in the Mysteries of Light ? How can we not use them as a powerful gift of intercession for ourselves , for each other, indeed for the whole world, this Lent and always. Amen.
We pray especially tonight for Pauline , co-author of the Breakthrough Prayer, whose funeral is this week :
Lord may we find every hope in all that You have promised : that even in death we shall still live in You Amen
- Rear window By Eva Caballé
- The room is almost empty; nothing but a bed and an old bedside table without any decor or curtain, all in light colors. It seems calm and quiet.
The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.
Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing and parents and grandparents sat in the sun and chatting while watching them.
The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts implying that she is tired of talking always about the same thing.
- Young woman: You only see conspiracies, for you all is very simple. How can you be so sure if you hardly leave home? When you live through your window! Instead of spending hours writing pamphlets that I’m sure that nobody reads, and taking pictures, shouldn’t you focus on your next book?
The woman’s expression becomes serious and she turns angry replying with some indignation.
- Woman: But it's obvious! It doesn’t take Sherlock Holmes! The dog of the first floor neighbors died a few days after the first fumigation. They say that he was intoxicated by something that he ate... A few days ago an ambulance took the old woman who lives upstairs in the middle of the night and she is still hospitalized, when in the 40 years I have lived here I had never seen her having a cold! And what about the children's of the fourth floor? (She takes a break to breathe because she speaks so fast that she is even short of breath.) Every day I see them with the bronchodilator and every other minute in the ER! Their neighbor has cancer and since she's having chemotherapy she can no longer tolerate perfumes and now she has to wear a mask when she walks along the street. (Now almost shouting.)They say that she has Multiple Chemical Sensitivity (MCS) and doctors don’t pay attention to her!
The woman makes faces parodying the young woman’s lecture that she already expects and knows by heart.
- Young woman: You are a bit alarmist! There are only a few people who suffer MCS, there is no need to worry. And today almost everyone has allergies or asthma and authorities warn us that one of each four people will have cancer throughout our lives.
(Goes back and speaks from the doorway leaning on the door frame.)This is the modern life. We have to die of something!
The woman turns and answers indignant from the bed.
- Woman: And does it seem normal to you? Really? And when this affects you, will you still think the same?
The young woman finally leaves the room and her voice is heard from the hallway with a tone between weary and sarcastic.
- Young woman: Well, see you next week. Do not keep on spying on your neighbors because you will end up crazy. You should amuse yourself and don’t fantasize anymore.
The woman answers raising her voice while the young woman closes the front door and leaves the house.
- Woman: Don’t worry, my attitude has no solution. (And finishes angry talking to herself.) And neither does your stupidity.
The woman is still staring out the window with indignation and with a worried face and thinks aloud.
- Woman: Does anyone realize? I see everything so clearly that it scares me. Makes me want to open the window and shout it from the rooftops, but will anyone hear me? Why don’t they listen even when you alert them? (With a sarcastic tone.) Having no time and the fast pace of life sound like cheap excuses to me. (She stands up and gets closer to the window.) It’s simple. We've become worse than donkeys, because it is not even necessary that they put blinders on us to not look beyond the established road. We no longer have the instinct to do it! We are afraid of what we might see lest we have to react. (The sun has set and she begins to close the blind.) It must be that I have no fear of looking or I have nothing to lose. It must be that my window is different..