In Memory of Anne Örtegren

Countrygirl

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Warning: Do not read this if you are feeling particularly low.


Anne has just left us, I think in the last few hours. As I understand it, she decided to end her life at the Swiss clinic. She was a great advocate who suffered severely from ME and, like me, the intolerable buring skin problem whereby you cannot tolerate fabic, even silk touching your skin.

She has wriiten this farewell to the ME community. It is very long but is an excellent article which could be shown to family and friends and others, who do not understand




lobel.nu/anne.html


Farewell – A Last Post from Anne Örtegren


Nobody can say that I didn’t put up enough of a fight.


For 16 years I have battled increasingly severe ME/CFS. My condition has steadily deteriorated and new additional medical problems have regularly appeared, making it ever more difficult to endure and make it through the day (and night).

Throughout this time, I have invested almost every bit of my tiny energy in the fight for treatment for us ME/CFS patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME/CFS clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health. I have researched all possible treatment options, got in contact with international experts and methodically tried out every medication, supplement and regimen suggested.

Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from a number of additional medical problems, the most severe being a systematic hyper-reactivity in the form of burning skin combined with an immunological/allergic reaction. This is triggered by so many things that it has become impossible to create an adapted environment. Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state.

This means I no longer see a way out from this solitary ME/CFS prison and its constant torture. I can no longer even do damage control, and my body is at the end of its rope. Therefore, I have gone through a long and thorough process involving several medical assessments to be able to choose a peaceful way out: I have received a preliminary green light for accompanied suicide through a clinic in Switzerland.

When you read this I am at rest, free from suffering at last. I have written this post to explain why I had to take this drastic step. Many ME/CFS patients have found it necessary to make the same decision, and I want to speak up for us, as I think my reasons may be similar to those of many others with the same sad destiny.

These reasons can be summed up in three headers: unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.

Important note

Before I write more about these reasons, I want to stress something important. As for most other ME/CFS patients who have chosen suicide, depression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation. On the contrary, I have consistently fought for solutions with the goal to get myself better and help all ME/CFS patients get better. There are so many things I want to do, I have a lot to live for. If I could only regain some functioning, quieten down the torture a bit and be able to tolerate clothes and a normal environment, I have such a long list of things I would love to do with my life!

Three main reasons

So depression is not the reason for my decision to terminate my life. The reasons are the following:

1. Unbearable suffering
Many of us severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture. I am homebound and mostly bedbound – there is the prison. I constantly suffer from excruciating symptoms: The worst flu you ever had. Sore throat, bronchi hurting with every breath. Complete exhaustion, almost zero energy, a body that weighs a tonne and sometimes won’t even move. Muscle weakness, dizziness, great difficulties standing up. Sensory overload causing severe suffering from the brain and nervous system. Massive pain in muscles, painful inflammations in muscle attachments. Intensely burning skin. A feeling of having been run over by a bus, twice, with every cell screaming. This has got to be called torture.
copy and paste the link for the complete article


 
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Nickster

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This is so very sad. The suffering and torture from this disease is indescribable. I respect her wishes to end the suffering.

I commend her for bringing this public and hope the medical community is listening. I know that I have heard you Anne.
 
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This is so very sad. The suffering and torture from this disease is indescribable. I respect her wishes to end the suffering.

I commend her for bringing this public and hope the medical community is listening. I know that I have heard you Anne.
I hear you too, Anne. I’m so sorry that you suffered so much and that you couldn’t stay any longer. I understand. To her loved ones, I send my heartfelt sympathy and deepest compassion.
 

Ravn

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A very courageous woman fighting to the last for the rest of us. You've been an inspiration. Thank you Anne and RIP.
 

lauluce

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rest in peace now, sister. your fight will always be remembered, and we'll carry on with it, for all our brothers and sisters with ME
 

Countrygirl

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http://www.investinme.org/AnneÖrtegren.shtml



Farewell to a Friend


Today we had the very sad news that Anne Örtegren from Sweden had passed away.

We considered Anne a dear friend.

This news has come as a great shock.

Our condolences to Anne's family.



Anne Örtegren

We never met Anne Örtegren in person. Yet we counted her as a true friend.

When we look at the correspondence with Anne we can see it had started in 2007 - a year after we were formed as a charity.

In all the correspondence that we had with Anne one always admired the resilience, the articulate nature of her commenting, her strength of character, her dedication and her determination to continue to battle this disease, to help others and to be there to make progress.

We instinctively trusted and liked Anne from the first time we communicated. She was a rock – somebody whose opinion we valued and whose help and support we greatly appreciated. And she was generous with her support.

Anne’s determination to help us and to encourage Swedish researchers to participate was a shining light for us.

Her help behind the scenes – she was never one to promote herself or seek the limelight for the sake of it – led to real collaborations between researchers who met at our Colloquiums.

She was an example to us all.

An unimaginable void has now appeared in ME advocacy – someone who is irreplaceable.

Though we knew Anne was suffering, and had been for such a long time, we were still communicating with her until very recently and had no knowledge of what was to transpire.

Her spirit was just an inspiration.

It is very difficult to read Anne’s last post (below).

Not just because of the suffering and pain and hopelessness that she describes – but because Anne was so articulate in describing her situation – never with self-pity, always displaying the same courage that she showed in her life.

We lost a friend today and it is hard to pick oneself up at this time.

A light has gone out and the world is all the darker for it.

When we lose a friend we lose a part of ourselves

Yet there are those who leave footprints in one's memory whom one will always remember.

Anne Örtegren is such a person.



Farewell – A Last Post from Anne Örtegren



Anne's facebook page is here https://www.facebook.com/anne.ortegren
 

char47

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I never had the privilege of knowing you Anne but our world is poorer without you in it. Rest in peace now free of suffering & pain, you will be sadly missed & your memory will live on among us all.

I can barely tolerate the idea of another year as i am & i am nowhere near as bad as she & so many others. I take my hat off to anyone who endures very severe ME for a wk, never mind years on end. I couldn't have stood as long as she did I'm sure.

:(
 

Jo Best

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Thank you for posting @Countrygirl. It is some comfort to know that Anne had the support of her loved ones and expert assistance in bringing her many years of intolerable suffering to an end.