"How I wish I had been able to meet a knowledgeable ME physician at the start of my illness, someone who would have been able to give me correct advice about rest and treatment. Perhaps then I would have been a free person today.
Instead, here I am in this improbable ME existence. My dreams—of a family, a happy social life, a productive career, future travels—have all been crushed."
Trigger Warning: Please know that this post contains information that is an upsetting read, but it involves a story that needs to be shared again because of the important messages it contains.
Very Severe and Profound ME sees patients confined to bed, suffering from malnutrition and some being tube-fed; suffering from multiple sensitives, dehydration, weakness, spasms, nausea, dystonia, cardiac issues, paralysis, compromised immune systems, etc.
The most severe sufferers are often the most hidden. They are some of the sickest people receiving no care, or inappropriate care.
One such person was Anne Örtegren, a person with Severe ME in Sweden who died a few years ago. To understand a little about what Severe ME patients go through we highlight Anne's story, and her important message.
Anne was a voice for those with Severe ME for which there was, and remains, no policy, no ME-aware doctors, no specialist consultant, no knowledge, no comprehension of those with severe ME, no training in med schools, no treatment, and no cure.
Anne Örtegren
We remember Anne Örtegren and her powerful and important message to policymakers, medics and researchers.
It is a few years since news came of the passing of Anne Örtegren (Sweden). Anne was a well-known advocate in the international ME community.
Anne suffered from ME for 16 years and was one of those most severely afflicted.
Despite her daily torments she dedicated every moment she could to the advocacy for sufferers of ME to spread awareness of her awful situation, and that of millions of others, and to try to improve the conditions for those who struggle in silence.
One of the topics closest to Anne's heart was that of biomedical research into ME, she repeatedly expressed exasperation with the chronic underfunding and lack of interest it met from governments around the world.
Anne’s own accounts of her illness demonstrate the full force of ME.
Anne wrote the following in 2014:-
‘You know what it is like when your body is focusing all its efforts on fighting a nasty infection. You are utterly exhausted. You lie in bed in a feverish haze, everything hurts, your head is spinning, your joints and muscles are aching. It is impossible to summon up a single ounce of energy. Gravity seems to have concentrated all its force on your body alone, and you cannot move even an inch.
.... How I regret it all! How I wish I had been able to meet a knowledgeable ME physician at the start of my illness, someone who would have been able to give me correct advice about rest and treatment. Perhaps then I would have been a free person today.
Instead, here I am in this improbable ME existence. My dreams—of a family, a happy social life, a productive career, future travels—have all been crushed. I have been severed from my beloved nature, the forest, sea and mountains. My family and friends are becoming ever more distant, as I am unable to see them or even speak to them on the phone. Someone said: “ME takes your life away, but it doesn’t have the courtesy to kill you.” So true. Many times, I find it hard to call this existence a life.
I want you to know that I am not one to give up easily. I have done everything imaginable to get better and regain function. I have hauled my body to a huge number of doctors, tried endless successions of more or less alternative treatments, followed all kinds of instructions, figured out my own paths. I have struggled, battled, rested, tried something new, over and over. I have tried living in acceptance and just letting things be, tried fighting for change, inventing hope time and again. Everything, I have done everything. I remain severely ill.’ ~ Anne
(Trigger Warning: again, please know that there are parts of the full piece that may be an upsetting read)
Full piece from Anne Örtegren here: From International Traveler to 43 Square Meters: An ME Story From Sweden
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"For me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME 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."
Before her passing, Anne left an important message to the ME community, to advocates, and policy makers.
In her last post Anne wrote:
“If you are a decision maker, here is what you urgently need to do:You need to bring funding for biomedical ME research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year).You need to make sure there are dedicated hospital care units for ME inpatients in every city around the world.You need to establish specialist biomedical care available to all ME patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist.You need to give ME patients a future.”
In memory of Anne, the Invest in ME Research Group released this tribute from the 13th ME Research International ME Conference in London in June 2018. In it, distinguished Swedish scientist, Professor Jonas Blomberg, spoke of Anne: Anne Örtegren One Year On
See Anne’s entire important final message here: Farewell – A Last Post from Anne Örtegren (Please be advised that it may be a difficult piece for you to read.)
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