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Showing posts from May, 2012

The 5 Essential Components of a biomedical ME Service

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The Power of Pentecost

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The Power of Pentecost is here with us today, right now. Be open to accept the Holy Spirit. He is real. He is alive. And He is with us. All things are possible with the Holy Spirit. All Mercy is received. All healing available. All hope is true.
Let us do more than Trust that the Holy Spirit is with us. Let us know and rejoice in the Power of the Spirit. May we sing Holy words and our souls rejoice in the Truth of Pentecost.Who knows what miracles happen when we live in the Love and the Power of the Holy Spirit, who completes the awesome Trinity and flies to us from the Heart of Love ?
Amen.

Let us rejoice then and give thanks and praise. Let us be empowered by the Spirit of Truth. Let us be open to receive  and live in the Spirit right now. Amen.

Karina update

Karina update, May 25th, 2012 English and Danish
Good news! Karina is getting her first intravenous treatment at home today, on May 25th! Actually, this afternoon, she is already getting the IV drop!
On Wednesday the 23rd, an appointed doctor and Dr. Isager visited Karina’s house. The appointed doctor told Karina’s parents that there were no further plans to remove Karina from her home and that they would work on getting the IV started in the home right away. It still seems unreal to the family. They have been through so much. They send their thanks to all of you who wrote and posted about Karina. They are sure it helped.
One correction about my earlier posts: I wrote that the Board of Health planned to commit Karina and I want to clarify what I meant.  The Board of Health technically cannot commit anyone because a doctor has to sign the paperwork. So the Board of Health did not directly order Karina to be committed, but a consulting doctor at the Board of Health ordered Karina’s GP to d…

When you can't

6am. My wife gasping,  she is so much agony;  she cannot take any more, she cries.


The pain, paralysis, numbness, noise, light, touch sensitivity,profound  multi-system dysfunction  has lasted for over 18 years. Change, such as it is, moves at a glacial pace. Professionals take all the time in the world, months,  to get back to us. All I could do was dig  deep  ,  to offer what crumb of comfort I could could.


Later , on my bike, for that is how I cope myself, I crest a hill and see white waves breaking . Here's the thing, I tell  myself. We have always taught that the three most important decisions anyone with ME has to make, at anyone time are :


When you CAN
When you CAN'T
When you MIGHT 


..But what  happens when all that's left  is 


CAN'T ?


What  then ?

GET Poster

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Please download here :

https://docs.google.com/open?id=0B_euvZrZ80MxZTlaNmZXYWVWN0k

ME Poster

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Please download from here : 
https://docs.google.com/open?id=0B_euvZrZ80MxUGlrbk1oaXFWQjg

Truth Poster

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Please download here :

https://docs.google.com/open?id=0B_euvZrZ80MxQ3JDTzY1NWROeW8


The greatest danger for people with ME

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The greatest danger for people with ME
Is its misrepresentation as  fatigue.
Its misinterpretation as a condition or syndrome.
Its mispresentation  as a mental health disorder.
It is caused by physical dysfunction.
It is a neurological disease.
There is no cure.
The greatest danger comes from complacency
From not realising  the name does matter
From compromising away  its true nature and reality
From putting  funding or power or status or  compliance with the fatigue lobby
Before speaking and representing the Truth of ME
The result of complacency and compliance
Is the  current  lack of appropriate  biomedical services
For people with ME
The abuse and wrong treatment of people with genuine ME
The denial of symptoms
And the legitimisation of misinformation
And  medical neglect.
When will the people who have genuine ME
Be seen
Acknowledged
Heard,
Listened to
Respected
And properly provided for?
What do we have to say
To be effective ?
What do we have to do
To get a fair response?
What  do we have to experience
Before …

Latest update on Karina

Karina is still alive and still at home. The family’s lawyer is advising them and will guard Karina’s rights. This lawyer has had many cases with ME patients and he understands the disease.
Thanks to Greg Crowhurst – www.stonebird.co.uk - and perhaps others – the Danish Embassy in London became aware of the case and contacted the Danish Board of Health. The Embassy is taking this case very seriously. There is pressure on the Danish government from many sides now to treat this case correctly. The power of facebook!
Yesterday the Board of Health contacted a neuropsychologist about Karina’s case. He was asked to contact Dr. Isager and to have the two of them look into the case. We see it as a positive step that the Board of Health is asking for Dr. Isagers opinion in this case. Dr. Isager has devoted years to helping ME patients, making home visits and helping them when no one else would. He has endless heartbreaking stories about the cases he has seen in his years of helping these aband…

10 good reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)

10 good  reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)
Greg Crowhurst March 2012 (Permission to repost)
This article is written in direct response to the terrifying  situation in Denmark, where Severe ME suffer Karina is under threat of being forcibly removed from her home and place in a mental asylum because  the Danish Board of Health is working with a "well-known Danish psychiatrist" , who has never actually seen Karina, but is seen by the government as an authority for “functional somatic syndromes” so they are  acting  upon
his advice.
What is a Functional Somatic Syndrome (FSS)  then ?
A FSS is defined as  a condition which “after appropriate medical assessment, cannot be explained in terms of a conventionally defined medical disease”. Functional Somatic Syndromes  are argued to have the following in common :
an apparent overlap of symptoms (e.g. fatigue, headache); patients with one syndrome frequently meet the diagnostic criteria for others (e…

Care for Someone with Severe ME, now released in print.

Stonebird is delighted to announce that finally the paperback version of  Care for Someone with Severe ME  is ready and available to purchase  :
http://www.stonebird.co.uk/howtosevereme.html

There has never been  a more pertinent time to be raising awareness of the reality of Severe ME - witness the unfolding events in Denmark .
In our painful experience, the danger to people's health is growing .
Even here in the UK, where ME is officially recognised as neurological , the truth of the disease  is  being gradually diminished , as experience it,   in a deepening  sea of fatigue- speak.
To our great concern we see middle  of the road medical  teams and researchers - who profess to be biomedical,  still following  a psychosocial interpretation ,  still using   the same old fatigue language, still not  challenging  the establishment, still   compromising ME  away,  still hindering genuine knowledge , still  making the person with ME   wrong,  rather than looking to their own inadequacies,…

Help Karina - please , please write to the Danish Ambassador

Her Excellency Ms Anne Hedensted Steffensen The Danish Ambassador Embassy of Denmark 55 Sloane Street London SW1X 9SR Dear Ambassador I am very concerned to read that the Danish Board of Health plans to commit to a psychiatric hospital Karina Hansen, a 23 year old woman from Holstebro Denmark, who is seriously ill with ME (Myalgic Encephalomyelitis). Ms Hansen is bed-bound, unable to tolerate minimal light or sound and is too weak to talk.  She is so ill that any attempt to move her could prove fatal. ME is not a psychiatric illness. The World Health Organisation has recognised it as a neurological disease since 1969 and it is classified as such in its International Classification of Diseases, Tenth Revision ICD 10 - G93.3 I would therefore be most grateful if Your Excellency would convey my concern to the Danish Board of Health and urge them to act on the recommendations of the Danish ME expert Dr Isager and Ms Hansen’s family doctor regarding her future treatment. Believe me, My de…

What can we do for Karina ?

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Very sad news from Denmark:
Danish Board of Health threatens to commit seriously ill
ME-patient to a psychiatric hospital.

The Danish Board of Health says that the diagnosis
of ME is the same as insanity and wants to forcibly
remove a 23-year old woman, Karina, from her family
home.



This could happen as soon as May 2nd.

Karina is totally bed-bound, is extremely light and sound
sensitive and is too weak to talk. .

She is so extremely ill that there is a real chance that a
move could be fatal.

Karina’s parents have been trying to get permission to set
up an IV at home to help keep Karina alive, but instead the
health department decided that Karina is mentally ill and
should be removed.

The family has been repeatedly told by Danish doctors that
the diagnosis of ME is not recognized.

“They do not understand how sick an ME-patient can be with
this disease and their ignorance can now have fatal
consequences for Karina“

says Rebecca Hansen, Chairman of the ME Association in
Denmark.

Please help us by spreading thi…

25% Group & Stonebird : DWP Personal Independence Payment Consultation Response

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Personal Independence Payment: assessment thresholds and consultation response by the 25% ME Group and Stonebird.1.The government wants to find new and better ways to work out who gets Personal Independence Payment. This will be done through an assessment. We are concerned that the true intention is primarily to cut costs rather than meet need. We are aware that the stress surrounding the whole reassessment process will put peoples’ health and lives at risk, especially those with Severe ME, who are extremely vulnerable and likely to deteriorate, under these circumstances.
The whole message, highlighted by the cartoon on page 5 of the Easy Read Document, is a confusing one for people. The cartoon is too simplistic an interpretation. A lot of people with ME do not necessarily get the amount of help they actually need, like the carer in the picture, because they are so physically hypersensitive and ill and may be unable to access that help.  We would like to pose the questions:-  “Will PIP…