The struggle to gain adequate care while living with Myalgic Encephalomyelitis (ME)

ME patient/advocate Corina Duyn reflects on the challenges of having 

Disability Services in Waterford accept her as having a disability.

Corina Duyn

I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again and my health has deteriorated. 

Not anticipating that I’d be ill for so long, and that my illness would so quickly result in disability, I initially received care from friends, and lived for one month with my brother and family in Kenmare. Returning to Lismore, I looked for support at home.

I was told that home help (as it was called in 1998) was for the over 65s only. Local council representation secured me a few hours of care per week. Having several severe relapses in which I found myself totally paralyzed, leading to several hospitalisations, my home help hours were increased to seven days a week, up to 4 hours a day.

This meant I was able to live in my own home, and not be taken into care.

I am immensely grateful that this intervention was presented to me by the HSE. As my GP at the time suggested, if I was taken into the local nursing home for older people I would have died.

The fact that I was in my own surroundings enabled me to rebuild my totally altered life from scratch. I was housebound for years, only occasionally making it outside of my door, mainly for medical appointments. A challenging time, to say the least. But I did not have to worry about where my food was going to come from, how I would have clean clothes, or a clean environment. My personal care needs were being met.

I lived, survived, existed, by having an open mind. 

I looked and learned from nature. I explored my totally changed life through my creative mind. I lived every moment as it came. I dealt with the immense physical pain, the total and utter exhaustion, the very frequent relapses, happening out of the blue, or due to doing a tiny, tiny bit more than I was capable of. For a while I lost the ability to read or write, or to hold a conversation. Several health scares and hospitalisations accompanied this time. Slowly, there was a slight increase in my wellbeing. I thought I would recover. Although the statistics were, and are, against me, there was always hope.

In 2006 I met my partner, and I was proud to give up the home help support. We lived off my Disability Allowance. A very, very basic existence, but I felt that I had moved forward. Care-free in a way. It took until 2015 to secure the Carers Allowance. At this time my partner was living a few doors down the road. Living with chronic illness/disability and being housebound most of the time, is not easy in a relationship, especially in a tiny house. At this time we had two small houses allowing us each a place where we could be alone and creative. A win-win situation. Unfortunately our lives moved into different directions, and I find myself living alone again, and without a carer. As a result I once again had to embark on asking for HSE support to help me live independently. This has become a daily battle.

Although my health has deteriorated again over the past six years, I am quite comfortable in my skin (as the saying goes) to be spending a lot of time in solitude. I can entertain myself quite happily by reading, looking out the window, taking photos of the birds, marveling at the changing seasons, coming up with creative ideas, which might or might not come into being. I love to write and create, when I can. I love being out in my garden or greenhouse and I enjoy the visits or phone-calls from friends and family. Dealing with the HSE however brings about immeasurable stress and impacts negatively on my mental and physical wellbeing.

Over the two decades I have had many difficulties trying to access appropriate care, especially outside of primary care. To protect myself from becoming overwhelmed by these huge challenges, I established ways to live the best life I can within the circumstances. As well as using my writing and creativity to understand my own changed life, I used my creative voice to bring about change. This year I became a proud founding member of ME Advocates Ireland. Speaking up about my personal circumstances and hoping to be a voice for many others in my situation who are not as able as me to put these challenges into words. For them, and me, I will continue on this path to bring about change. 

The HSE system of allocating care hours has changed dramatically over the past years. 

Previously the Public Health Nurse made judgment about the level of care required. Now this is done through a central allocation system where someone in an office who does not know me personally makes the decisions. Of course there is also less funding available.

Having a diagnosis of Myalgic Encephalomyelitis (ME) makes it all the more complex. The HSE has not yet established a clear pathway of care for people living with ME, like there is for example for MS. Many people with ME are housebound, or even bedbound, and many live with much more severe disability than those diagnosed with MS. Yet the clear pathway of care does not exist for us. ME has disappeared from the HSE website, awaiting new guidelines.

My current very real challenge is that I am in need of care. I need support with the most basic needs of having a shower, having my food brought in, having food prepared, having my household chores done, to be supported to occasionally leave my house, as well as to go to GP or hospital appointments, etc. In short, I need help to live.

This is complex.

I have been asking (again) since December 2017 to be assessed by HSE South Disability Services with responsibility for Adults with Physical and Sensory Disabilities, in order to obtain a Personal Assistance (PA). This would allow me to have autonomy over my care. But ME is not considered a physical disability by this office. They suggest that my GP and the primary care team should provide for my care and to contact the Public Health Nurse to submit an application.

The Public Health Nurse fills in the very basic Barthel-index assessment form, which does not take into account the complexity of living with ME.

The application goes to the Home Support Office. But as this office has no remit for the under 65s (unless terminally ill), the application goes to Disability Services.

But as Disability Services does not accept ME as a disability …

And round the circle goes.

Nobody takes responsibility.

To make this picture even more bizarre, for all the other parts of the HSE I am disabled.

I have a Primary Medical Cert and receive the Mobility Allowance (both only awarded in extreme cases of physical disabilities).

I am on the Physical & Sensory Disability Data base.

I have a powered wheelchair provided by the HSE. I have several other mobility aids provided by the HSE.

I am on Disability Allowance.

My house is adapted with an accessible shower and a ramp into my front door.

I had disability support while attending college.

I give talks about puppetry and disability all over the world (mostly via Skype).

People who see me in my wheelchair, who see me struggle at home, or when occasionally outside my house are bewildered when I share this warped thinking of the Disability Service’s logic that I am not disabled.

As no answers came my way, I went the Have Your Say route at the end of May, as suggested by a staff member of the Disability Services office.

This has not brought a solution. It brought tears.

After many struggles I now have 45 minutes of home support on weekday mornings, and half hour in the evening. I am deemed eligible for weekend hours (I am ill/disabled seven days a week, not just 5) but there is no funding available for this.

As it stands now, the HSE is not supporting me in any way to exist outside of my house, to go to appointments, or to bring food into my house, or to have enough home support hours to prepare food.

PA support is still being denied.

I looked at alternative ways.

Can I pay for enough care myself? Possibly. For a few months I can dig into my savings, but that is not sustainable on a long-term basis.

I talked with the EmployAbility Office. Can I become an employer and receive financial support to employ a PA to help me with my creative work?  My creative work is connected to my whole being; it is the essence of me. There is no support.

I am not asking for more than I need from the HSE.

Asking for help is admitting I am in need of help. My situation as it stands is a very vulnerable position to be in.

As illness continues to throw more challenges my way, I have not left my house independently for the past year. A scary thought.

Losing one’s independence is the hardest part of being ill. The hardest.

There have many weekends, and full days where I am totally on my own. Including during a severe relapse, when all I could manage was to move from bed to wheelchair, to recliner, and back to bed. When I needed to go to the bathroom, I also made my way to the kitchen (a few meters away) to get some more water, or a snack. I have my Personal alarm button on my wrist, and grateful for friends who are on the other end of the phone-line, but I cannot expect my friends to become my carers.

I feel it is a human right, a human need, to have autonomy over my care. This is something that the HSE Disability Services does not seem to understand.

This struggle to secure care has taken a huge toll on my mental and physical wellbeing. My usual state of peace of mind can my shattered in seconds when I think, or talk about the struggle I am facing with Disability Services not acknowledging my disability.

I am in tears. In seconds.

I am not fighting the HSE to get something more than what would allow me to live well for the rest of my life. To not have to worry.

A few days ago I had to decide how to use my 45 minutes of care.

There was no prepared food in the fridge or freezer. I had no clean laundry left as I have been away on a care break. I had three days of dishes piled up since my return for this care break; tubs, and bowl, cutlery and cups. And I desperately needed a shower.

I was in floods of tears, even now as I write this, on trying to figure out what was the best way to use my 45 minutes of care.

I also had to find a way to get my food shopping done.

Nobody should have to live like this.

In my fight my aim is not to have the HSE admit they are neglecting my care. I don't want to be an antagonist. I am not looking for a settlement. I am not looking to go to court.

I am looking at working with the HSE, to have them look at the discrepancies, which exist in the different HSE Community Health areas in the country.

I would like them to see what everyone else notices… that you cannot be disabled and at the same time not be disabled.

I would like to work with the HSE to show a solution, not cause a problem.

I would like to make sure that the immense struggle I am facing, and at many times wanted to throw in the towel as it became too much, that my fellow patients with ME or other long terms illnesses which have resulted in disability, don't have to go through this mental trauma. Because that is what it is. Trauma.

I hope that the words spoken by politicians and researchers will become a reality. For example: 

“Minister for Health Simon Harris TD emphasizing importance of clear communications with patients to build trust in our health service #NPSO2018”

Twitter: National Advocacy Service Ireland 18^th October

 “The central message of my latest report can be summarised as follows: we need to include the rights and needs of people with disabilities into healthcare systems #CRPD”

Twitter: Catheline Devandas - UN Special Rapporteur on the rights of persons with disabilities, Geneva.

Indeed.

Thank you for taking time to read this, and I hope that the next update will be one of joy - of common sense prevailing.

Corina Duyn

October 2018

Corina Duyn is an artist, writer and puppet maker. She can be contacted via her website & blog www.corinaduyn.com where you can also see her creative work and books. She is one of the founding members of ME Advocates Ireland  www.meadvocatesireland.blogspot.com

Severe M.E. Day August 8th 2018

August 8^th Severe M.E. Day

We have lost far too many people to this disease Myalgic Encephalomyelitis (M.E.) and so many patients are most severely ill, house bound, and bed bound lying in dark rooms alone unable to speak or eat, unable to tolerate sound and light and touch.

Have you heard of  Severe Myalgic Encephalomyelitis Day? This day honours and remembers the 25% of those with M.E. who are most severely ill.

Sophia Mirza suffered from severe M.E. for at least six years. The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. clinic. They carried out their threat in July 2003. The effects on Sophia's health were devastating. She died on 25th November 2005 when she was only 32 years old. An independent Neuropathologist found Sophia's spine contained massive infection. At the inquest the Coroner confirmed that "She died as a result of acute renal failure arising from the effects of chronic fatigue syndrome M.E."

Sophia's birthday, August 8th, was chosen as Severe Myalgic Encephalomyelitis Day by the 25% M.E. Group in 2013. On this day we honour Sophia and many others with M.E. who live alone in darkened and quiet isolation.

Deaths from cancer, heart problems and suicide are among the top three causes of death of people with M.E.

Patients choosing to end their lives do not want to die, but they cannot live with the unrelenting symptoms coupled with the fact that there is no significant change on the horizon. Combine this with neglect and abuse they often receive by those who disbelieve their illness, think it’s all in their head and that they are either shirkers or have a psychiatric problem that needs to be dealt with.

These ‘beliefs’ can have a profound impact when trying to access financial and other disability supports for people with M.E.

Of the many people we have lost to M.E. some we knew well, and others were mere acquaintances on social media. But the thing we all have in common is the drive to fight for health equality for M.E. patients, the fight for raising awareness, the fight for more research and policy making, the fight for lives lost to M.E.

The most poignant loss this year in the M.E. community was that of Anne Ortegren, a Swedish activist and M.E. patient, who chose to end her life. She had been suffering greatly from this illness and chose to end that suffering.

Anne was well-known in the patient community, and often wrote for Health Rising. Before her assisted suicide, she wrote a farewell letter, explaining how her illness had dramatically changed her life and why she made this decision. We were shaken and sorry to learn of Anne’s passing, shaken by the strength of character coming through in her message, left as a reminder to all of us, as well as medics, scientists, physicians, funding and government agencies, that M.E. can no longer be neglected!

Anne will be remembered for her courage, and her memory will remain as a reminder of what we are fighting for.

Rest in peace, Anne.

Anne Ortegren’s letter to the ME community: -

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.

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 we knew there were 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.

Many of us severely ill ME/CFS patients are already in a situation which is unbearable. On top of this, it is very likely that in the future things will get even worse. If we look at some of our symptoms in isolation, examples in my case could be my back and neck pain, we would need to strengthen muscles to prevent them from getting worse. But for all ME/CFS patients, the characteristic symptom of Post-Exertional Malaise (PEM) with flare-ups of our disease when we 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, and I believe for many other ME/CFS patients, this end is obviously not what we 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.

https://books.google.se/books?id=6QMrDQAAQBAJ&pg=PA321&lpg=

PA321&dq=CFSAC+moore+billie&source=bl&ots=gIh7zwwXzE&sig=_

wbeBOe2EMhk3lxhyeUMG2EZf_4&hl=sv&sa=X&ved=0ahUKEwjlqafq

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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

Government and HSE: It is time to change the conversation about ME in Ireland

“ME is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession” 

- Carol Monaghan MP

An account of the ongoing situation for Myalgic Encephalomyelitis (M.E.) patients in the U.K. was witnessed by many across the world from the U.S. to Australia to Pakistan, and right across Europe in the Westminster Hall M.E. Debate on June 21^st, 2018. 
MP Carol Monaghan brought this debate into being.

Numerous accounts from MPs about M.E. and its effects on those who suffer it, stressed the points that much more needs to be done to raise recognition, diagnosis, and treatment of this severe illness.

Steve Pound MP said:

“Today is the day, here in June 2018, where finally we started to take (Myalgic) Encephalomyelitis seriously and we stopped condemning people who suffer from this ghastly debilitating disease. Today is the day we said yes, we understand the pain that people suffer, yes, we’re going to do something about it, yes, we respect you, yes, we value you, and yes today we’re going to start investing in diagnosis, analysis and, god-willing, cure.”

There is an urgent need for the Irish Government and HSE to:

1)     commit to a date to have similar talks about the situation of M.E. patients. 

2)      to agree a way forward with no further delay

3)     ‘change the conversation’ about M.E. in Ireland

Please see account of the ME Debate below

• Comments by Carol Monaghan, MP, (SNP, Glasgow NW), and Jim Shannon, former Councillor & Member of the NI Assembly
• Steven Brine’s speech, Parliamentary Under Secretary for Health & Social Care which includes: Stephen Pound MP passionate speech on the need to improve treatment of children
• Liz McInnes MP and Carol Monaghan MP spoke of Merryn Croft the youngest person to die from M.E.
• NICE Guideline Review – ‘if the PACE trial were a drug it would have been banned by now’

The debate also referred to the:

• a)     problems in accessing benefits in the UK system
• b)     need for well-funded biomedical research.

UK Members of Parliament debated Myalgic Encephalomyelitis (M.E.) Treatment and Research in Westminster Hall, London, on Thursday June 21^st, 2018

Comments by Carol Monaghan, MP, (SNP, Glasgow NW), and Jim Shannon, former Councillor & Member of the NI Assembly

The debate, which was led by Carol Monaghan, MP, (SNP, Glasgow NW) received wide cross-party support with twenty-five MPs present, and with thirteen MPs making contributions. The number of MPs in attendance was seen by all concerned to underline the importance of the debate, and the pressing need for change in healthcare for M.E. patients. There were also several M.E. patients in attendance at the debate. The debate heard numerous accounts from MPs about Myalgic Encephalomyelitis (M.E.) and its effects on those who suffer it, and how much more needs to be done to raise recognition, diagnosis, and treatment of this severe illness.

“ME, is incorrectly treated, lacks sufficient funding and is poorly understood by many in the medical profession” - according to Carol Monaghan MP who has been campaigning in Parliament to change attitudes. She also argued that graded exercise therapy (GET), offered most commonly on the NHS, is often damaging and in need of serious revision. Throughout the debate other MPs cited stories from constituents suffering with M.E. who say that GET has made their illness worse.

Northern Ireland had representation at the debate in Jim Shannon, former councillor, and Member of the Northern Ireland Assembly, who did Northern Ireland M.E. patients proud and made sure that the 7000 patients got representation. He called for M.E. to be included in the medical curriculum, as a result of the evidence the ‘Hope 4 ME & Fibro Northern Ireland’ charity provided.

“This is an emotive issue. Many constituents have contacted me in anger, frustration and hurt as they simply feel that their illness is not understood and that successive Governments and some in the Department of Health and Social Care have shown no desire to gain an understanding—I say that respectfully, and I understand that some might say that healthcare is devolved. That is not the case for everyone, but it is certainly how many of my constituents have said that they feel.” – Jim Shannon

“ME is a chronic fluctuating neurological condition that causes symptoms that physically affect many bodily systems, commonly the nervous and immune systems, and affects an estimated 250,000 adults and children in the UK, as other hon. Members have said—it is not just an illness in adults. Approximately 7,000 people in Northern Ireland and about 17 million people worldwide have ME.” – Jim Shannon

“Specialist services for ME are scarce and under-resourced, as many hon. Members have said. I am ashamed to say that in Northern Ireland, my home nation, there are no services, which makes it all the worse. . . . . . The only way to get the attention and dedication that is needed to treat ME is to ensure that it is correctly classified, which has not happened so far.” – Jim Shannon

Following the three-hour debate in Westminster Hall on M.E., an official transcript was produced that enables us to read exactly what Steve Brine, the parliamentary Under Secretary for Health and Social Care, and other MPs had to say in response to the issues that were raised. The Minister spoke for approximately 24 minutes, and his formal response was followed by a short speech from Carol Monaghan, which closed the debate. For Brine's speech please go to 15:49:06 mins and watch to the end of video.

Watch HERE

Steve Brine, Parliamentary Under Secretary for Health and Social Care - link to transcript of his speech, and extracts from that speech below in text.

“As so many have said, the underlying causes of the condition, which for brevity I will call ME, are still poorly understood. There is no one diagnostic test to identify it, and although some people can and do improve and recover, there is currently no cure. That is a hard reality to face. Although the severity of symptoms and therefore the impact vary, ME can lead to poor attendance and affect outcomes at school for young people. I have a constituent in exactly that position with whom I am in regular correspondence—I will not name her, but she knows who she is, and I wish her and her mum well. ME can result in significant or indefinite time off work or job loss in adults; reduction or complete cessation of daily activities, which can lead to isolation and strain within families and the breakdown of marriages; and overall poor quality of life. As my hon. Friend the Member for Stirling (Stephen Kerr) said, it can lead to almost no life for some people and their loved ones.”

“We recognise that people with ME have encountered significant stigma, in part due to the unfavourable media representations of the condition that not only go back to the 1980s but have continued in recent times.”

“My right hon. Friend the Member for New Forest West (Sir Desmond Swayne) made a very good point about mental health; it is totally wrong and insulting to say it is all in the head, but it also goes against the grain of what we are talking about in modern-day healthcare: the parity between mental and physical health. There must be a parity, and to suggest that that somehow lessens it is wrong.”

“The physical impacts of the condition have an impact on mental health, as other hon. Members have said. I am also the Minister with responsibility for cancer, so I speak in lots of debates in Westminster Hall and we talk about the mental health impact of cancer—the hon. Member for Washington and Sunderland West (Mrs Hodgson) knows all about them. A recent example was when we talked about the mental impact of blood cancer. People with ME often report that the legitimacy of their symptoms has been questioned by family, friends, employers, healthcare professionals—yes—and society as a whole. Lest hon. Members did not understand it from my opening remarks, let me clear that Ministers—especially this one—are not among that group of people.”

“As we have heard, suicide is not unheard of. We know that those who experience stigma often also experience discrimination, which has a profound negative effect on their lives. That is unacceptable, so I welcome the debate as a forum to raise awareness of ME and talking about it.”

“Although I understand hon. Members’ points about raising awareness among medical professionals, and as a result of the debate I will redouble my efforts to do that as part of my role as Minister for primary care, all GPs certainly should be aware of ME, and should maintain their clinical knowledge of it and other conditions, as part of their commitment to continuing professional development.”

“It is important that we raise awareness and educate people, including me, about the condition and its impact on people’s lives.”

MP Stephen Pound spoke passionately about the need for improved treatment of children with ME.

“Today is the day, here in June 2018, where finally we started to take (Myalgic) Encephalomyelitis seriously and we stopped condemning people who suffer from this ghastly debilitating disease. Today is the day we said yes, we understand the pain that people suffer, yes, we’re going to do something about it, yes, we respect you, yes, we value you, and yes today we’re going to start investing in diagnosis, analysis and, god-willing, cure.”

   Minister for Health and Social Care, Steve Brine, was asked how the Department for Health is supporting training for medical practitioners on M.E. care and treatment and asked if he would support proper funding for medical research into the diagnosis and treatment of M.E. Mr Brine said the government invests £1.7bn each year into health research, and stated that the National Institute for Health Research and the Medical Research Council would welcome “high-quality” research into “all aspects of M.E. to make a scientific breakthrough”.

He described the need to find a breakthrough as a “matter of good Christian humanity” and promised to help increase the awareness of M.E. with GPs.

Liz McInnes MP and Carol Monaghan MP spoke of Merryn Croft the youngest person to die from M.E.

-    Liz McInnes MP raised the heart-breaking case of Merryn Crofts from Norden, one of only two people to have M.E. stated as the cause of death. She explained that earlier this year, a coroner ruled that 21-year-old Merryn Crofts was the youngest person to die from the illness after a six-year battle with very severe M.E.

Liz McInnes MP said:

“ME is such a misunderstood illness, as the sad case of Merryn Crofts from Norden demonstrates.” “Merryn was totally bedbound; she physically could not get out of bed. She suffered so badly from postural hypotension that she blacked out if placed in a sitting position. She was hypersensitive to noise, light, touch, and movement, and suffered so badly from pain that she could not get out of bed. Merryn was bed-bound for the last three years of her life.” “After speaking with Merryn’s mum Clare and taking part in the Westminster Hall debate today, it’s clear to me that much more needs to be done to tackle ME and to help those who suffer its awful symptoms.” “Among other things, we need to invest more in training for our Doctors, especially General Practitioners who are the clinicians likely to be the first port of call for those suffering with ME – our GPs need to have the skills to be able to recognise the signs & symptoms and to signpost patients to the appropriate specialists.”

Liz McInnes'  Speech Transcript

-        Carol Monaghan MP added: 

“Some people consider M.E. to be a psychological condition, despite the fact that people with M.E. are not allowed to be blood or organ donors. And they called for an end to the stigma and myths surrounding M.E., which at worst, leaves sufferers to endure a tortuous existence.”

These were Merryn’s words that Carol Monaghan MP read out:

“Having Severe ME is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the simplest things away from you, like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless and, if I was physically able to type, I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

_____________________________________________________________________

NICE Guideline Review – ‘if the PACE trial were a drug it would have been banned by now’

-     The NICE guideline review matter was discussed in great detail during the debate and concerns raised about current recommended approaches to management, CBT/GET. It was noted that the NICE review will take some time, that there is a need to ensure the voice of M.E. sufferers is heard, but the idea that the current guideline is in place until 2020 is scary.

It was stressed that there is real harm being caused now by current recommendations - so it is up to the Minister to question whether the current guideline should be suspended now. Many MPs made it clear on Thursday that NICE must remove their current recommendations on GET.

              

“If the PACE Trial were a drug it would be banned by now.”

-     Andrew Selous MP raised the point that there are roughly two and a half times more people with M.E. than with multiple sclerosis, yet there is 20 times more research on multiple sclerosis than on M.E. and, of what little M.E. research there has been, the vast majority has been through psychological and behavioural studies rather than the biomedical approach. Sir Edward Davey MP responded saying that “we still need a lot of research into MS, so it is not one or the other, but given the incidence of M.E., as he rightly says, the case for research into the biomedical aspects is strong”.

-      Sir Edward Davey raised the issue of the need for respect for patients. He said that it seems, from the stories he has read, that some in the medical profession do not appear to respect patients, that they make comments that it is all in people’s minds and that they are making it up. He conveyed that it is no way to talk to adults. Sir Davey pointed out the need to train doctors saying that we need better guidance and better training, so they understand the situation. He said he is worried that we are seeing some pressure to reclassify M.E., which is sending a dangerous signal, and he hopes the Minister will say that the Government are questioning that reclassification and putting it on hold, otherwise, the training for doctors will not happen, the respect for patients will not happen and we will not see the change that our constituents demand.

-        MPs demanded more funding for research into a cruel “death sentence” disease affecting 250,000 people in the UK, and the immediate end to NHS-recommended treatments that are making patients worse. Parliament heard in the three-hour debate of the chronic lack of funding for medical research and how many doctors still don’t know how to diagnose or manage the condition. Politicians said that controversial psychotherapy and exercise therapies recommended by the NHS after a flawed medical trial must stop now because they are making patients worse.

“People living with ME have decades of abuse and neglect to counteract and move past. Parliamentary support is a major step, and while there are still ‘millions missing’ across the world, an agreement that crosses political boundaries is crucial."

• The video of the debate

• Transcript of the debate