I used to call Anne “my favorite Swedish advocate”. In fact she was simply one of my favorite advocates. Smart, tough, flexible, courageous – Anne managed to communicate with advocates, patients, doctors and researchers around the world from the confines of her small room for years.
A couple of days ago Anne chose to end her what had become a torturous life. Of course, when Anne went out she went out swinging. Her good-bye to the ME/CFS community is an explanation, a call for each of us to take care of each other, and what else – a call to action and a demand for more support, particularly for the severely ill – a demand, basically, that the medical profession provide a future of care and compassion which was denied to her.
In her last email to me Anne said “words fail. All my love, Anne.”
Words are indeed too feeble at such moments so I will simply say Good-bye Anne. I’m sorry that we lost you and that your life became so difficult, but I’m very glad that you graced our lives with your courage, your passion and your commitment.
The day will come when the kind of suffering you endured no longer occurs.
Taking One’s Life
Anne’s public good-bye also provides the opportunity to discuss the issue of suicide. Many studies indicate that suicide letters, in a process called “contagion”, spur more suicides. I believe that is the last thing Anne would want.. I believe she would want her letter to be seen primarily as a testimonial and ultimately a call for action.
Anne had, even by severely ill standards, an unusually tortuous condition, and over time, as her condition worsened she lost all hope of improvement. By definition suicide is synonymous with a loss of hope; i.e. the loss of a viable future. I would request to those who are suffering please do not give up hope.
The world of the severely ill, in particular, is a very difficult one but it is not without hope. A few severely ill patients have even recovered. Mike Dessin, for instance, was even more sensitive to other kinds of stimuli than Anne and he recovered fully. His case is unusual but shows that complete recovery even from those depths can occur. More recently Health Rising has posted several recovery stories of people who were very ill for decades but who found the right treatment and either completely or almost completely recovered. Jamison is not recovered but he has improved significantly since the dark days of being bed bound and intolerant of any stimuli.
The very severely ill are also finally getting studied for the first time. In fact, the first severely ill study, the Ron Davis/Open Medicine Foundation study – also happens to be one of the most comprehensive, single studies ever done. The CDC’s inclusion of severely ill patients in its multi-site study should also cast a bright light on a group of patients who are so functionally hampered as to astound the medical profession. The NIH’s Intramural study is taking the deepest dive ever into the physiology of ME/CFS patients. Ron and Mark Davis will be using cutting-edge technology to find out what is activating ME/CFS patients T-cells. Any of these studies or others could provide a substantial breakthrough in our understanding of ME/CFS.
I know of three small drug trials plus Pridgen’s fibromyalgia antiviral trial that should take place next year. We know that some people do very well on Rituximab. If Fluge/Mella can tease out who responds to Rituximab a powerful new treatment option could open up. We don’t know what the future will bring but more is happening now than ever before.
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. 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 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.
It would be easier to handle if there were breaks, breathing spaces. But with severe ME/CFS there is no minute during the day when one is comfortable. My body is a war zone with constant firing attacks. There is no rest, no respite. Every move of every day is a mountain-climb. Every night is a challenge, since there is no easy sleep to rescue me from the torture. I always just have to try to get through the night. And then get through the next day.
It would also be easier if there were distractions. Like many patients with severe ME/CFS I am unable to listen to music, radio, podcasts or audio books, or to watch TV. I can only read for short bouts of time, and use the computer for even shorter moments. I am too ill to manage more than rare visits or phone calls from my family and friends, and sadly unable to live with someone. This solitary confinement aspect of ME/CFS is devastating and it is understandable that ME/CFS has been described as the “living death disease”.
For me personally, the situation has turned into an emergency not least due to my horrific symptom of burning skin linked to immunological/allergic reactions. This appeared six years into my ME/CFS, when I was struck by what seemed like a complete collapse of the bodily systems controlling immune system, allergic pathways, temperature control, skin and peripheral nerves. I had long had trouble with urticaria, hyperreactive skin and allergies, but at this point a violent reaction occurred and my skin completely lost tolerance. I started having massively burning skin, severe urticaria and constant cold sweats and shivers (these reactions reminded me of the first stages of the anaphylactic shock I once had, then due to heat allergy).
Since then, for ten long years, my skin has been burning. It is an intense pain. I have been unable to tolerate almost all kinds of clothes and bed linen as well as heat, sun, chemicals and other everyday things. These all trigger the burning skin and the freezing/shivering reaction into a state of extreme pain and suffering. Imagine being badly sunburnt and then being forced to live under a constant scalding sun – no relief in sight.
At first I managed to find a certain textile fabric which I could tolerate, but then this went out of production, and in spite of years of negotiations with the textile industry it has, strangely, proven impossible to recreate that specific weave. This has meant that as my clothes have been wearing out, I have been approaching the point where I will no longer have clothes and bed linen that are tolerable to my skin. It has also become increasingly difficult to adapt the rest of my living environment so as to not trigger the reaction and worsen the symptoms. Now that I am running out of clothes and sheets, ahead of me has lain a situation with constant burning skin and an allergic state of shivering/cold sweats and massive suffering. This would have been absolutely unbearable.
For 16 years I have had to manage an ever-increasing load of suffering and problems. They now add up to a situation which is simply no longer sustainable.
2. No realistic way out of the suffering
A very important factor is the lack of realistic hope for relief in the future. It is possible for a person to bear a lot of suffering, as long as it is time-limited. But the combination of massive suffering and a lack of rational hope for remission or recovery is devastating.
Think about the temporary agony of a violent case of gastric flu. Picture how you are feeling those horrible days when you are lying on the bathroom floor between attacks of diarrhoea and vomiting. This is something we all have to live through at times, but we know it will be over in a few days. If someone told you at that point: “you will have to live with this for the rest of your life”, I am sure you would agree that it wouldn’t feel feasible. It is unimaginable to cope with a whole life with the body in that insufferable state every day, year after year. The level of unbearableness in severe ME/CFS is the same.
If I knew there was relief on the horizon, it would be possible to endure severe ME/CFS and all the additional medical problems, even for a long time, I think. The point is that there has to be a limit, the suffering must not feel endless.
One vital aspect here is of course that patients need to feel that the ME/CFS field is being taken forward. Sadly, we haven’t been granted this feeling – see my previous blogs relating to this here and here.
Another imperative issue is the drug intolerance that I and many others with ME/CFS suffer from. I have tried every possible treatment, but most of them have just given me side-effects, many of which have been irreversible. My stomach has become increasingly dysfunctional, so for the past few years any new drugs have caused immediate diarrhoea. One supplement triggered massive inflammation in my entire urinary tract, which has since persisted. The list of such occurrences of major deterioration caused by different drugs/treatments is long, and with time my reactions have become increasingly violent. I now have to conclude that my sensitivity to medication is so severe that realistically it is very hard for me to tolerate drugs or supplements.
This has two crucial meanings for many of us severely ill ME/CFS patients: There is no way of relieving our symptoms. And even if treatments appear in the future, with our sensitivity of medication any drug will carry a great risk of irreversible side-effects producing even more suffering. This means that even in the case of a real effort finally being made to bring biomedical research into ME/CFS up to levels on par with that of other diseases, and possible treatments being made accessible, for some of us it is unlikely that we would be able to benefit. Considering our extreme sensitivity to medication, one could say it’s hard to have realistic hope of recovery or relief for us.
In the past couple of years I, being desperate, have challenged the massive side-effect risk and tried one of the treatments being researched in regards to ME/CFS. But I received it late in the disease process, and it was a gamble. I needed it to have an almost miraculous effect: a quick positive response which eliminated many symptoms – most of all I needed it to stop my skin from burning and reacting, so I could tolerate the clothes and bed linen produced today. I have been quickly running out of clothes and sheets, so I was gambling with high odds for a quick and extensive response. Sadly, I wasn’t a responder. I have also tried medication for Mast Cell Activation Disorder and a low-histamine diet, but my burning skin hasn’t abated. Since I am now running out of clothes and sheets, all that was before me was constant burning hell.
3. The lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs
The third factor is the insight that the risk for further deterioration and increased suffering is high.
On top of the nearly unbearable symptoms it is very likely that in the future things will get even worse. An example in my case could be my back and neck pain. I would need to strengthen muscles to prevent them from getting worse. But the characteristic symptom of Post-Exertional Malaise (PEM) when I attempt even small activities, is hugely problematic.
Whenever we try to ignore the PEM issue and push through, we immediately crash and become much sicker. We might go from being able to at least get up and eat, to being completely bedbound, until the PEM has subsided. Sometimes, it doesn’t subside, and we find ourselves irreversibly deteriorated, at a new, even lower baseline level, with no way of improving.
PEM is not something that you can work around.
For me, new medical complications also continue to arise, and I have no way of amending them. I already need surgery for one existing problem, and it is likely that it will be needed for other issues in the future, but surgery or hospital care is not feasible for several reasons:
One is that my body seems to lack repairing mechanisms. Previous biopsies have not healed properly, so my doctor is doubtful about my ability to recover after surgery.
Another, more general and hugely critical, is that with severe ME/CFS it is impossible to tolerate normal hospital care. For ME/CFS patients the sensory overload problem and the extremely low energy levels mean that a normal hospital environment causes major deterioration. The sensory input that comes with shared rooms, people coming and going, bright lights, noise, etc, escalates our disease. We are already in such fragile states that a push in the wrong direction is catastrophic. For me, with my burning skin issue, there is also the issue of not tolerating the mattresses, pillows, textile fabrics, etc used in a hospital.
Just imagine the effects of a hospital stay for me: It would trigger my already severe ME/CFS into new depths – likely I would become completely bedbound and unable to tolerate any light or noise. The skin hyperreactivity would, within a few hours, trigger my body into an insufferable state of burning skin and agonizing immune-allergic reactions, which would then be impossible to reverse. My family, my doctor and I agree: I must never be admitted to a hospital, since there is no end to how much worse that would make me.
Many ME/CFS patients have experienced irreversible deterioration due to hospitalization. We also know that the understanding of ME/CFS is extremely low or non-existent in most hospitals, and we hear about ME/CFS patients being forced into environments or activities which make them much worse. I am aware of only two places in the world with specially adjusted hospital units for severe ME/CFS, Oslo, Norway, and Gold Coast, Australia. We would need such units in every city around the globe.
It is extreme to be this severely ill, have so many medical complications arise continually and know this: There is no feasible access to hospital care for me. There are no tolerable medications to use when things get worse or other medical problems set in. As a severely ill ME/CFS patient I have no safety net at all. There is simply no end to how bad things can get with severe ME/CFS.
Coping skills – important but not enough
I realize that when people hear about my decision to terminate my life, they will wonder about my coping skills. I have written about this before and I want to mention the issue here too:
While it was extremely hard at the beginning to accept chronic illness, I have over the years developed a large degree of acceptance and pretty good coping skills. I have learnt to accept tight limits and appreciate small qualities of life. I have learnt to cope with massive amounts of pain and suffering and still find bright spots. With the level of acceptance I have come to now, I would have been content even with relatively small improvements and a very limited life. If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy. But I am not able to cope with these high levels of constant physical suffering.
In short, to sum up my level of acceptance as well as my limit: I can take the prison and the extreme limitations – but I can no longer take the torture. And I cannot live with clothes that constantly trigger my burning skin.
Not alone – and not a rash decision
In spite of being unable to see friends or family for more than rare and brief visits, and in spite of having limited capacity for phone conversations, I still have a circle of loved ones. My friends and family all understand my current situation and they accept and support my choice. While they do not want me to leave, they also do not want me to suffer anymore.
This is not a rash decision. It has been processed for many years, in my head, in conversations with family and friends, in discussion with one of my doctors, and a few years ago in the long procedure of requesting accompanied suicide. The clinic in Switzerland requires an extensive process to ensure that the patient is chronically ill, lives with unendurable pain or suffering, and has no realistic hope of relief. They require a number of medical records as well as consultations with specialized doctors.
For me this end is obviously not what I wanted, but it was the best solution to an extremely difficult situation and preferable to even more suffering. It was not hasty choice, but one that matured over a long period of time.
A plea to decision makers – Give ME/CFS patients a future!
As you understand, this blog post has taken me many months to put together. It is a long text to read too, I know. But I felt it was important to write it and have it published to explain why I personally had to take this step, and hopefully illuminate why so many ME/CFS patients consider or commit suicide.
And most importantly: to elucidate that this circumstance can be changed! But that will take devoted, resolute, real action from all of those responsible for the state of ME/CFS care, ME/CFS research and dissemination of information about the disease. Sadly, this responsibility has been mishandled for decades. To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act.
If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME/CFS 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/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS 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/CFS patients a future.
Please listen to these words of Jen Brea, which sum up the situation in the US, but are applicable to almost every country:
“The NIH says it won’t fund ME research because no one wants to study it. Yet they reject the applications of the world class scientists who are committed to advancing the field. Meanwhile, HHS has an advisory committee whose sole purpose seems to be making recommendations that are rarely adopted. There are no drugs in the pipeline at the FDA yet the FDA won’t approve the one drug, Ampligen, that can have Lazarus-like effects in some patients. Meanwhile, the CDC continues to educate doctors using information that we (patients) all know is inaccurate or incomplete.”
Like Jen Brea, I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”
And lastly
Lastly, I would like to end this by linking to this public comment from a US agency meeting (CFSAC). It seems to have been taken off the HHS site, but I found it in the Google Read version of the book “Lighting Up a Hidden World: CFS and ME” by Valerie Free. It includes testimony from two very eloquent ME patients and it says it all. I thank these ME patients for expressing so well what we are experiencing.
PS.
My previous blog posts:
- From International Traveler to 43 Square Meters: An ME/CFS Story From Sweden
- Coping With ME/CFS Will Always Be Hard – But There are Ways of Making It A Little Easier
- The Underfinanced ME/CFS Research Field Pt I: The Facts – Plus “What Can We Do?
- The Underfinanced ME/CFS Research Field Pt II: Why it Takes 20 Years to Get 1 Year’s Research Done
My Swedish ME/CFS newsletters, distributed via e-mail to 2700 physicians, researchers, CMOs, politicians and medical journalists: https://mecfsnyheter.se/
Take care of each other.
Love, Anne
_________________________________________________
“Take Care of Each Other”
Anne’s final request for us to “Take care of each other” starts with simply finding out how each of us is doing. This is the second time this year I’ve been blindsided by somebody taking their life who I knew was in a difficult situation. The fact is that we don’t expect people we’ve been in touch with for years to disappear. It’s a blind spot.
Sometimes just the caring – the understanding that someone cares, that someone is concerned – is enough to get someone through their dark nights. Maybe we should all take some time to see how each other is doing. Maybe we should use Anne’s death as an opportunity to discuss how we can better support the severely ill. I think she would appreciate that.
It would also be helpful to get advice from those who have stared into the darkness and emerged from it. What helped you get through? In looking back, what can you see that would help someone in that situation?
Depression
Studies indicate that having a chronic illness, particularly a painful chronic illness, greatly magnifies your risk of becoming depressed. Add in what is probably the most functionally disabling disease known to man and it gets hard to understand how anyone with ME/CFS is not depressed.
There is no shame here – just a brutal reality that being fatigued, in pain, without medical support (and sometimes the opposite) is going to wear on you. Depression is a natural outcome of being in a situation like that.
It’s possible to be depressed without knowing it. Self-tests can help you understand if you are experiencing depression/anxiety and encourage you to get some help. Please note that drugs are not the only option for depression and that talk therapy can be every bit as effective.
It’s also possible and likely given the immune findings in ME/CFS that some of the depression associated with this disease is from inflammation. Health Rising will be covering that subject and different ways to approach immune mediated depression shortly.
Resources
- National Suicide Prevention Lifeline 1- 800-273-TALK (8255)
- Crisis Text line
- The American Foundation for Suicide Prevention
Warning Signs of Suicide
- Talking about wanting to die
- Looking for a way to kill oneself
- Talking about feeling hopeless or having no purpose
- Talking about feeling trapped or in unbearable pain
- Talking about being a burden to others
- Increasing the use of alcohol or drugs
- Acting anxious, agitated or recklessly
- Sleeping too little or too much
- Withdrawing or feeling isolated
- Showing rage or talking about seeking revenge
- Displaying extreme mood swings
The more of these signs a person shows, the greater the risk.
If someone you know exhibits
warning signs of suicide:
- Do not leave the person alone
- Remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt
- Call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255)
- Take the person to an emergency room or seek help from a medical or mental health professional
*On the advice of a suicide expert Anne’s letter was slightly edited in a few places.
Simply beautiful – both yours and hers. I’ve not the stamina to say more right now: thank you, truly thank you. May we all, together, honor her memory and walk into a new future for all of us who’ve suffered, and survived, with this disease.
So well said. Let us create and walk into a new future. Anne’s goal was to create a new future for people with ME/CFS – particularly for the are severely ill; it just didn’t happen quickly enough for her. I believe she did help create a new future – one that is not fulfilled yet, obviously, but one that is coming. She would want nothing more than for her letter and passing to help spark a new understanding and a new future for people with ME/CFS.
Anne, your words are intelligent, compassionate and truthful – although difficult to comprehend the level of suffering you endured and for so long. They helped me put my problems into perspective. I have fibromyalgia, which is a painful and unpredictable condition, but I am graced with bearable times within it, thankfully and gratefully. Love to all suffering chronic unbearable pain. x
For the sake of clarity this is not suicide but euthanasia, a big difference in my opinion. It testifies to a strong person to come to this decision. I wish her peace!
Gijs-I totally agree with you on this. Also the fact that her family was informed of her choice and supported her.It was a planned Euthanasia.
Wish I could say it would help with more funding-but I live within 1 hour of the CDC in Atlanta . I have 2 Dr at Emory. They have no clue of anything on Chronic Fatigue and ME. Each one they think has to be treated separately. That is a tragedy. The other is that you have to wait 1-2 years to get in to see a qualified specialist. There are none close to me.
I too wish her PEACE.
Who could blame her for wanting out? There’s not a single thing in this world I fear more than being that sick again. The insidious pain… the knowing that you are getting worse and worse and there’s nothing you can do about it, the desperation, the isolation, the loneliness, the fear… The neverendingness of it. It is, as she said, a relentless, torturous prison.
Go well Anne.
I want to take the time to read this later. But I just have to rant a bit at the statistics on the this disease which are horrifying. I just watched Jennifer Brea’s film, Unrest, on PBS the other night. Of course my brain fog prevents me from remembering exact the suicide % from ME/CFS but it’s obviously way too high and the attention this disease gets is still hideously low. It is still soooo misunderstood, which thankfully for today I have the energy to be angry about. I had a terrible couple years in 2014-2015 and I will fight my butt off to never be that ill again.
Jennifer also mentioned sufferers “new normal.” I am nowhere near what a healthy person my age (or even someone 20 years older than I!) looks like. Yet I am immensely grateful for the energy I do have and that my brain fog is better. I’m hoping to build on that gratefulness to help my immune system heal more.
As always, I’m incredibly grateful to you Cort for all the hard work you do. Thank you!!
Terribly sad but all of us here understand, I’m sure. I’m glad Anne took the time to write such a comprehensive last note. You are kind of alone with ME and FM as it is almost impossible for others to believe the variety and degrees of pain and discomfort we experience for years, often 24/7. I’m sure many sufferers keep this option in mind. Both disorders’ funding come way after cancer, heart disease, or, in America, blowing up peasants around the world. Sometimes I wish everyone in Congress would get ME and FM and then we’d watch the cash flow out of munitions and into research.
Jen Brea’s documentary was a fantastic effort and achievement, though not a very good documentary. I say that having someone in the family who won best medical documentary in the world a few years ago and being very familiar with doc film making. I supported the film a bit and offered a bit of advice near the beginning, not accepted. Well, it somehow got to Sundance and the Oscars. Better editing would make it more powerful, though, and serve the ME group much more.
I object to you editing Anne’s letter (on the advice of a “suicide expert you say). By changing Anne’s words, you disrespect her decision and her memory.
Poor Anne. I knew that she was very ill but hadn’t heard before the details of her suffering. I only recall one exchange with Anne, this in a thread on Health Rising, but her words brightened my day, and I have often thought of what she said. Thank you, Anne.
Despite that fact that Anne was a friend, the possibility of suicide contagion – which over 50 studies I was told have shown occurs – made the decision to publish Anne’s letter a difficult one. I gave Anne’s letter to a suicide expert (who had lost her son to suicide) who pointed out some things which inadvertently might prompt other suicides. Being confronted with publishing something on website that could have that effect, believe me, makes you think a little differently.
I don’t know if I did a good job or not. If you want to check out Anne’s original document it’s available on the internet. I think you’ll find that the changes are quite minor and that her intent came through.
Hopefully, Anne’s good-bye letter will prompt more caring and action and not more despair. I’m sure that she wouldn’t want that…
Very sad, my thanks to Ann for all she done to help the ME/CFS Community. Cort, please keep us posted re: the documentary “Unrest”, when and where it can be viewed. TY for sharing Anns’ story.
Cort, I also struggle with the decision of whether or not to post anything about the suicides or euthanasia due to ME/CFS. I commend you for the way you have handled this by contacting a suicide expert in advance of publication. Anne’s story deserves to be told and her memory is honored by telling it here. Thank you for your due diligence. May Anne finally be able to rest in peace and perfect health.
Thanks…..Anne’s story certainly deserves to be told and known. Anne’s is yet another very humbling and tragic story of a life that promised much but was interrupted and finally ended by this disease…That should be known!
Im not convinced about suicide contagion for ME/CFIDS. The severely ill condider this option often. I have started considering serious planning for my euthanasia long before this was posted. Its just nice to know I am not crazy and I am not alone.
Cort- You may not like what I am going to say. However I wish you would just write the story and then not try to justify everything you write. Just leave it alone when announcing Anne’s death and let people judge for themselves. No one needs to be told it will incite more suicides.
You can’t be on both sides of the fence !!!
I most of the time agree with what you say and that you do investigating reporting. But be with this story “Be Brave” and let it stand.
Thank you for printing it. Wish none had been edited.
Thanks for letting me know. Not an easy call at all. I struggled with this for several days.
I felt terribly sad reading this and can really relate to Anne’s situation. I have had ME for nearly 30 years and ten years ago put a postscript on my living will that stated I would want to make arrangements with Dignitas if my condition further deteriorated.
I totally agree with Gijs point that euthanasia is not the same as suicide.I think anyone who has the severe form of this illness will have been tested to the limit and intuitively know where their cut off point is. Anne had anticipated this point and did not want to go there.I don’t want to go there either. But it is really an indictment of our human society that we do not cater for the needs of patients in these extreme situations.Fear is prevalent – not just in ME – but many illnesses that we may find ourselves in a situation beyond our endurance level. I wish we had answers to this – but these are also ethical problems – not merely illness problems. It will take a lot of wisdom to sort it all out.
While almost unbearable to read Anne’s story I want to endorse Cort’s comments. I have cared for someone with diagnosed ME who on two occssions was bed bound, desparately intolerant of all stimuli, in severe pain and unable to move for months. This person is now sufficiently recovered to be a dance teacher. It does happen – if only we knew why.
That’s great to hear Phillida and thanks for passing that on. It doesn’t happen often but it does happen.
I think it happens more than we hear..because when someone recoveres to near full health or even full health they get back into life and we don’t hear about it. They stop reporting to websites or Doctors too about being ill.
I have much recovered but still pace carefully to stay within my energy bracket,etc. When I tell people who are ill what I have done to get much better often they just say you probably didn’t have real ME/CFS in the first place then. Maybe there could be a recovery story web page so we can see how many are getting there?
@Lucinda, yes, Health Rising does have a Recovery Stories section: you can find it by clicking on “Forums” and scrolling down to the subforum called “Getting Better”.
https://www.healthrising.org/forums/forums/recovery-stories.66/
Thank you ?
It is a sad day for all of us in the CFS community, and I feel so badly for you, Cort. You do so much here to bring us the latest research that gives us hope. During many years early on in
my illness (starting about 1980) the idea of suicide would flit across my mind, but I couldn’t leave that legacy with my two young children. We truly have made some big steps in CFS being a recognized disease, but only with a limited number of researchers. The lack of research money is criminal. What helped me hang on is that I had one doctor early on who told me that depression doesn’t cause swiollen glands. That there was something organically wrong with me. Just that statement refuted all the others who were telling me the typical things we all hear. He handed me a key that opened a door to knowing I was truly sick, and no matter what I went through with other doctors, I didn’t believe their prideful decrees about what was wrong with me. My faith in God also gave me comfort and courage, when I felt life had no meaning.
What you do here, Cort, is like what that early doctor said to me. Health Rising gives us a voice and knowledge which is so empowering. Thank you.
It’s amazing the difference one person saying the right thing at the right time can make.
I was sick for 19yrs. I tried taking my life this past May. I was 90% bedridden and could barely ride in a car. I did feel like a burden, hopeless, etc. God isn’t done with me. He healed me this past Mothers day. I was having 20 seizures a day. Losing control of my whole left side, but the pain..became unbearable! M.E. and bringing awareness to this life snatching disease is a hugh priority to me. I’m trying to listen and let God guide me where He wants me.
This is so sad.
Hope the documentary Unrest raises the awareness of this sickness to the authority, medical scientists, doctors, the general mass of the society…
This is so tragic but I understand and honour her choice. I truly hope it was not in vain and that the global medical community and governments will respond appropriatrly. May Anne know peace now. ?
Rest in peace Anne. We all, here, understand the tough choice you had to make and yes no one can say you did not put up a good fight!
Cort, those 3 pilot trials you mention, I understood they were to take place in 2018, is it 2019 now?
Still 2018. Nancy Klimas will be starting one. The Open Medicine Foundation will be raising money to do a Suramin trial and one other which is not public will occur in the first half of this year. Hopefully Pridgen will get the funding to do his fibromyalgia antiviral trial as well.
Thanks Cort, I hope you can tell us more about Nancy’s pilot trial soon!!
Go in peace, Anne. Anyone that has ME/CFS understands,and wishes you a safe journey.
This is a sad but courageous letter that brought both tears for Anne’s suffering and relief in her final decision to end her suffering. It seems indefensible that she could not get any effective treatment or a modicum of help from the medical community. But as I become increasingly ill myself, and after all that I have tried and endured, I understand. And it makes me so incredibly angry that we, this unserved patient population, have suffered so much, lost so much of our lives and are still treated with such indifference and contempt by the medical profession. One has to wonder too if her last trip to the Amazon jungle and the ensuing onset of her illness was not an indicator of an undiagnosed but deadly tropical disease. Most likely there is a clue there and when later challenged with other mundane infections, her immune system simply could not cope and began attacking her body. It appears to be both immunodeficiency and autoimmunity that beset her, a place she just couldn’t recover from. As I become more and more debilitated, I have to wonder where this is going to end for me. It gives me strength though to know that I am not alone, even though I spend much of my days and nights in isolation, there are others out there in the world who are struggling and fighting for their health and a better understanding of this crippling disease. A bitter sweet consortium of disabled bodies with much knowledge and compassion to share. Love and courage to us all.
I am sad because I feel we are on the cusp of solving the riddle of ME/CFS. It makes me want to encourage each other more to hang-on until that day. I myself, discovered a way to push my chronic pain into remission. I am in the midst of my third cycle of fasting for 5 days each month, which is showing so much promise to push other symptoms into remission by regenerating my immune system. I no longer have burning Erythromelalgia or psoriasis, which is amazing. There is a light at the end of the tunnel.
Maureen- Would like to know more about your Fast. I am doing this for GERD 12 14 hours a day before eating
anything. But it also seems to help my CFIDS and ME/Fibro. Also on Gluten free diet. 30 or more oz high Alkaline water. Much more to it. Also wanted to mention that most of the fees of the Physicians that are treating these conditions are off the charts. Most do not even accept insurance. So why should they be looking for a cure? Sorry to sound negative. But when you keep hitting a Brick wall when you seek care-there is a reason. The main thing that helped me years ago was Immune Globulin shots. Can’t get the Brand anymore.
Hi Maureen,
Can you please tell more about monthly fasting. I am suffering from ME/CFS + Fibromyalgia and bedbound for several years. Abandoned and no where to go. This is hell. Living curse.
She didn’t commit suicide, she was given euthanasia by a well-known clinic with thorough background control on patients, as she describes. Anyone tempted by suicide contagion is free to research that option, and would probably be declined. Euthanasia is not the same thing as suicide and has nothing to do with suddenly giving up in despair or even torment. I think Anne purposefully chose euthanasia over suicide so as to not cause any suicide contagion. But this is your blog and you have the prerogative to do as you think best. But to remove things from her text implies she was somehow at fault for writing them, and I don’t agree with that. I don’t think her letter needs censoring or improvement, but I also am not a suicide expert, just a friend of a person who got euthanasia and told the world why.
Very well said, Anja.
BRIEF WERE MY DAY AMONG YOU
I NOW GO WITH THE WIND
BE NOT DOWN WITH SADNESS
I’M BACK WHERE I BEGAN.
GIBRAN
Nice. Thank you.
Rest in peace, Anne. Her beautiful, final letter, her courageous fight, determination to live life until she could no longer tolerate the limitations/physical realities of ME/CFS touched my soul. Her personal struggles, courage and thought-filled comments and insights, her final choice is completely understood.
I agree Pam. How Brave of her to share her kindness, even when she was suffering so.
Yes, I too see her choice as euthanasia, which probably most of us would choose for a badly suffering animal who could not recover health. She was courageous to see this through as well as attempting to communicate effectively all the way.
My physical life is not nearly as tortured as hers but I can identify with the possibility of running out of clothes and bedding I can tolerate. The neuropathy, or polyneuropathy, that develops for quite a few with ME/CFS and FM is scary.
There is one brand of cotton sock and one type of cotton fabric I am mostly down to for next to my skin, and not nearly enough choices for staying warm. I live in a very cold climate but can’t tolerate any winter hats. I have one favorite shirt to sleep in which is now a rag. In fact I threw it into the rag bag months ago, determined to move on, but haven’t found any other shirt as kind to my skin, so I washed and put it back on at night, holes, shredded edges and all. Are the walls closing in? I try not to think about this, adding negative anticipation and judgment to the actual trouble, but realistically that is the direction my physical experience is going.
Heroic researchers and doctors going above and beyond, we need your help!
Cecelia: I too have a few ragged, nightshirts filled with holes. My family search for similar materials. I also need sleeves when cold, yet get too hot without warning. My temperature is lower than “normal” so I often have an invisable fever.
Today was my Mom’s funeral which I rested in bed to attend. I needed to be with my family and now I will suffer pain that is indiscribable. I am most often in bed as POTS, CFS/ME, FM, CMPD, TMJ, CES, plus more diagnoses make living … words escape me.
Anne loved nature and so do I. It took decades to bring climate change, sustainability and biodiversity into world forums. I am a Zoologist and have a Masters in Leadership Development and Workplace Learning. I lost both careers to pain.
Now as predicted I am beginning to lose my eye sight. Every cell is vibrating which we knew would happen. I refuse to banish euthanasia from my thinking as I struggle to think and decide what to write in my living will. It is my dream to see my family grow for a long time and to open a window to learning again. Over my life of nearly 60 years miracles have happened.
Before I leave I will research what I call peace healing hopefully for a PhD in neurosociology. The details have kept me alive with a sense of humour and love. So far it’s a dream as I am broke and I will need a university, professor and open minded grad program in which I can do it all bedridden and ill. We all have dreams, even those of us whose REM sleep fails, can reach for our brightest stars.
Thank you all
So sad. I hope that Anne’s final thoughtful call to arms can make it into general media outlets …as do the incidents of many other deaths related to external issues (e.g. bullying).
Anne’s suffering was extraordinary by any standards. This needs to be heard far and wide. Hopefully by people with deep pockets and open hearts. Bill Gates? Anyone famous? Oprah? Anyone! There are clever people willing to research. Just the money is missing.
Astrid Lindgren, the beloved Swedish children’s book author, beautifully and touchingly describes a tale of love and “dying by choice” in her book “The Brothers Lionheart.”
Like Lindgren’s book, I read in Anne’s letter a story of courage and compassion.
In my mind, while it is a a tragedy that Anne got so sick and a travesty that there is a lack of funding to discover treatments for ME/CFS, the story of Anne’s last act in her earthly body is not a tragedy.
How brave of Anne to have show the patience to thoroughly ponder the decision to die for several years, despite her intense suffering. How compassionate of her to involve her family and friends in her process of dying, mitigating their pain of her passing as much as possible.
How brave of her to take the leap. How compassionate of her to free her body from all that suffering.
In Lindgren’s book a better place called Nangijala is waiting for the brothers Jonathan and Karl when they die from their injuries and illness. And then an even better place called Nangilima waits for them when they die again, this time taking their own lives by choice.
Like the brothers in Astrid Lindgren’s books, I have a sense that Anne is in a better place now.
Speaking for myself, I am fortunate to have only moderate ME/CFS (70 on Karnofsky scale) and am able to part-time participate in a beautiful life with my wife and daughter. Taking care of my body takes a lot of work, but I do this work with great love and often joy.
Like Anne, I would never give up on this because of a week or a few months or even a couple of years of intense suffering.
However, if I ever got to a place of years of intense suffering and no hope of improvement, I am glad to read that there would be a compassionate way to leave this body behind and move on to a better place.
Over the years exploring my spirituality and the church belief-system I grew up with, I have been able to develop a deep trust that there would also be a good place waiting for me.
Fortunately–other then when reading a blog post like this–I don’t have to think about it very much right now. I am blessed to have a good life and will continue to make the most of it.
P.S.
And yes, let’s take really good care of each other–we really, really need it.
Beautifully said Johannes…
A powerful op ed appeared in the New York Times on the disenfranchisement experienced by the chronically ill; particularly those with chronic illness. At one time this person was diagnosed with ME/CFS.
https://mobile.nytimes.com/2018/01/10/opinion/in-my-chronic-illness-i-found-a-deeper-meaning.html?_r=0&referer=&smid=tw-share
Very sad.
Thankyou for also sending a message of hope. You are right and there is more research than ever, we never know when change might happen.
Thankyou for also making aware of connections between suicide and depression, that is a very important issue.
Anyone who takes his life is a horrible loss for us.
We really need to take care of each other.
I read the full text of Anne’s message before seeing your blog Cort and while I respect the advice to edit it, I did not see it as depression or suicide, just a courageous summing up of the unendurable conditions of her life. I have had ME for 40 years, after the first 7 years I knew to be dead would have to be better than the life I was experiencing, but I was NOT suicidal, it was only an honest appraisal of what was. Being a wife and mother enabled me to fight through another 7 years to a measurable improvement. ME also sent me on a physical, mental and spirtual search which has enriched my life, now being about 80% better with occasional huge crashes caused by residual Multiple Chemical Sensitivity. Like Anne my own home is a safe haven but, for me, is no longer a prison. As a retired nurse I know Euthanasia is sometimes the courageous way out of unedurable suffering. Vale Anne.
Thanks Audrey. Congratulations on getting better. If there was anything in particular that helped you that you feel comfortable sharing it would be great to hear about that.
Audrey- One of the things I have found more and more and I have been ill with this malady for 30 years. If you have negative people around you telling you to get better and “They don’t get it”. Need to run. They are never going to be there when you need them. Sometimes depending on the situation you cannot do that-but just a thought to patients that are getting worse and think they can’t get away.
I am not talking about Anne. It sounds like she had support.
Just want everyone to think about this. Look for support elsewhere.
What an amazingly articulate, insightful woman Anne was. A warrior advocate. And what a big loss she is. But totally understandable in those desperate circumstances to decide to bow out. I found it almost unbearable and very scary to read her words, having myself had ME for nearly 30 years, been extremely ill initially and at times later, and always at risk of relapse and terrified of significant deterioration. My deepest respects go to Anne and to anyone who suffers to that degree. It is beyond outrage that ME patients have been so horribly abandoned and mistreated by the medical profession and by society in general for so long.
Great Post Julia!!!!
Cort- Thank you for staying the course in this terrible Disease.
I think the sad thing is when someone or everyone does not understand.Your loved ones, your Doctors or your friends.
They want answers as to what is wrong and you can’t tell them something they don’t want to hear.
I honour, respect and empathise with Anne’s decision. She is at peace now and back home with her Creator. After 28 years and only a fraction of Anne’s symptoms and suffering, I do not personally believe there is an allopathic remedy for this illness. I have found that all drugs damage the body. Later this month I am going for Lymphatic Drainage therapy. Based on positive outcomes for patients receiving Dr Raymond Perrin’s technique over a period of 10 years. His research led him to conclude that toxins were not being removed from the bodies of people with ME/CFS and were accumulating in the brain. Makes sense to me; that could be why people get worse and that symptoms are so varied. I will report on my progress with this method of treatment. He has written a book about it if anyone is interested.
Would love to know name of book. Do you know anyone in Ga that does this treatment?
SOME MASSAGE THERAPISTS DO LYMPHATIC DRAINAGE.
I’m going to see someone next week for a Perrin session.
The lymphatic drainage is not draining from the brain the right way in ME/CFS so a normal lymphatic drainage massage is not going to do what a Perrin treatment will do.
My daughter 10 years old, who was physically very week had cranial oesteopothy for 6 months every 2 weeks, she now loves doing cartwheels when ever she can. She still has a very limited amount of energy and extremely pale but I do think getting her lymphatic system moving was a giant step forward and it’s a joy to see her cartwheel. Rest well Anne, thank you for your posts and hard work, and reminding us to take care of each other…..we are our own best support and hope.
Thank you sweet darling for sharing the deepest thoughts of many of us. The secret pain and
PEM hidden, because, because when spoken no one really hears around so you just stop talking. Losing the love of your life because you aren’t “the girl I married”. He’s says it in a drunken anger, but you understand. Because, because, like as much as I fight for a better life, there’s a new auto immune disease that pops up. So I understand, there are days I don’t like me. And now it’s especially lonely. As I said I will fight for a better life. So for now here’s to Anne, we pioneers,the generation diagnosed,(and those who suffered worse before us, undiagnosed) may they find an answer for us or through us for the future. But may we be the answer.
Lots of strength!
It’s too late for Ms Anne, but here’s another HUGE piece for the ME/CFS/FM jigsaw puzzle-‘In a recent ES survey, the five most common symptoms experienced when EMF exposed were skin itch/rash/flushing/burning and/or tingling, confusion/poor concentration and/or memory loss, fatigue/weakness, headache, and chest pain/heart problems. Skin problems and memory difficulties tied for first place among the overall symptoms. Less commonly reported symptoms included nausea, panic attacks, insomnia, seizures, ear pain/ringing in the ears, feeling a vibration, paralysis, and dizziness.’ Electrical Sensitivity as an Emerging Illness
by Lucinda Grant http://www.tldp.com/issue/179/emf179.htm
‘Heavy Metal Toxicity Raises Your Risk of Electromagnetic Sensitivity
Electromagnetic fields (EMFs) from cell phones, cell phone towers, wireless Internet, power lines, household electrical wiring and more can trigger serious symptoms, including headaches, fatigue and confusion, in people who are electrosensitive
There are a number of factors that influence the degree to which you may be affected by EMFs, and your level of heavy metal toxicity is likely one of them
Heavy metals in your brain also act as micro-antennas, concentrating and increasing reception of EMF radiation
Any kind of metal implants and/or amalgam (silver) tooth fillings will significantly increase reception of microwaves, and the mircrocurrents from cell phones and other ambient fields…In case you’re wondering how to detect electrohypersensitivity, the five most common symptoms are:
Skin itch/rash/flushing/burning, and/or tingling
Confusion/poor concentration, and/or memory loss
Fatigue and weakness
Headache
Chest pain and heart problems…’
https://articles.mercola.com/sites/articles/archive/2012/08/25/heavy-metal-electromagnetic-fields.aspx
https://articles.mercola.com/sites/articles/archive/2008/06/21/are-you-allergic-to-wireless-internet.aspx
Lots of med journal/science links here…https://www.mwholisticmedicine.com/electromagnetic-hypersensitivity
‘You may be suffering from EHS.You may have tried many approaches to restore your health, all to no avail. We often hear from individuals who are experiencing severe symptoms associated with electromagnetic hypersensitivity. They are taking many supplements, incorporating excessive dietary restrictions, and using various grounding devices as well as EMF devices that shield or cancel frequencies. Despite all of these lifestyle changes and devices, the health of these individuals does not improve. They are unable to leave their homes, and many have moved to remote locations to avoid EMF exposure. Unfortunately, their health continues to decline. ..’
God Bless Anne and her family and friends.
What a beautiful soul.
My daughter has ME for twelve years now. I just found this site and am so happy to have found it.
It brings me to tears, but makes me happy to have found people that understand. We live in the US and the drs act like my daughter is lying or faking this. I am angry, sad but fighting for Denise.
All the best to Denise!
God Bless Anne, and may she finally have the chance again to be active in peace and without suffering! (“Rest” was never Anne’s thing, as those of us having known her for several decades can testimony.)
Anne was indeed smart, tough, flexible, courageous, and many other adjectives characterising great human virtues. The world has lost a great champion advocating essential causes, including people in need and our natural environment. She will be always loved and forever remembered.
Well said!
I found this article while searching if you can die for CFS reasons in another country even if you aren’t from there. I found this org in Switzerland who does it, and googled to find if CFS applied… and I guess it does. Everything she described is like how I feel right now, and I am 23. I have had no life and I have no future, either. I’ve wanted to leave this Earth since I was 7 years old at least. I have always been sick but didn’t know why because instead of helping me, my family tortured me instead, and even raped me because I relied on them to help me with the bathroom. I am so… so beyond tired. I trained my entire life to be an artist, an athlete, and knowing it was all in vain after surviving everything with a smile on my face… There is possibly no worse feeling in the world. The only clothing I wear now, by necessity, is a f***ing diaper just like the thing that facilitated my rape unbeknownst to my child self. There is no hope. I am comforted that if I ever have the money to travel there, I could die in peace. My partner won’t kill me. I have asked.