Severe and Very Severe Myalgic Encephalomyelitis (ME)

A summary of important Resources on Severe and Very Severe Myalgic Encephalomyelitis (ME), including important posts on Caring for those with Severe/Very Severe ME 

(Included is a memoriam section at the end)

Image by Wendy Boutilier/Artz Studios/GAME

It is hard for anyone to understand the horrors of living with Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware  to get a glimpse of the conversation they need to enter into is vital  unless living with or alongside ME.

Image by MEAwarenessPics

Part One includes List of some Common Symptoms

Image by Noreen Murphy of ME Advocates Ireland

                Part Two includes

           Please click here for link to   Individualized Care Plan (Sample)

Part Three includes: - 

• Notes for Carers of people with Severe ME from Greg Crowhurst

Image by Greg Crowhurst

• Supporting Someone with Severe/Very Severe ME Care Sheets by Greg Crowhurst

Images x 3 by Greg Crowhurst

‘CARING FOR SOMEONE DIAGNOSED WITH SEVERE ME : GREAT WISDOM AND SKILL ARE REQUIRED'- GC

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Further Information

• Useful information and educational pieces that can be easily shared with medics, family, friends, general public, etc, which includes a very useful Booklet from Invest in ME Research that gives an overview of how ME affects a community; easy to carry Information Cards for medical appointments, etc; a link to the film 'Voices from the Shadows', about Severe/Very Severe ME available online and on DVD; link to the International Consensus Criteria (ICC) for Myalgic Encephalomyelitis (ME). 

         

                                     See link to all of the above helpful information here

• The 25% Severe ME Group (UK) was set up to support all who have the severe form of ME and those who care for them. This includes people who are housebound, bedbound and dependent on help for physical functions - people who may be tube fed, who suffer from great pain and multi-sensitivities along with other horrific disabling symptoms. Severe ME Remembrance Day, set up by the 25% Severe ME Group, aims to bring public attention to the illness for the sake of all those presently suffering from Severe/Very Severe Myalgic Encephalomyelitis and to remember all those who have died from ME - ' a day to honour the strength of spirit of all those who have endured  and continue to endure decades of suffering profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.'

Image from the 25% Severe ME Group by Wendy Boutilier/Artz Studios

See link to 25% Severe ME Group website -  here

See link to 25% Severe ME Group Facebook page - here

• Physios for ME (UK) recently produced seven slides aimed to educate physiotherapists and any other Allied Health Professional about the basics of ME and the current issues around their profession. Those detailed slides and other information from Physios for ME (UK) here .

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In Memoriam

To mark Severe ME Awareness Day we would like to honour all those who have passed away because of ME, especially four young women who are well known in the ME community.  

We would also like to honour all those who are suffering from Severe and Very Severe ME.

(Please be aware that there may be some sensitive information in this section that may be upsetting)

Sophia Mirza

Sophia Mirza (UK), is a young lady who had Severe ME who is well known in the ME community. Her case is one of two in the UK where death was attributed to Myalgic Encephalomyelitis (ME) after formal medical inquests in the UK. Sophia Mirza (UK) had Severe ME and died on November 25, 2005 when she was only 32 years old. Her birthday, August 8th, was chosen as Severe ME Day by the 25% ME Group in 2013.

On this day the ME community honour Sophia and others with Severe/Very Severe ME who live alone in darkened and unnaturally quiet isolation. Read more about Sophia at the following link - Sophia Mirza's story

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It is just over two and a half years since news came of the passing of Anne Örtegren (Sweden).  Anne suffered from ME for 16 years and was one of those most severely afflicted. Despite her daily torments she dedicated every moment she could to the advocacy for sufferers of ME to spread awareness of her awful situation, and that of millions of others, and to improve the conditions for those that struggle in silence. One of the topics closest to her heart was that of biomedical research into ME, and she repeatedly expressed exasperation with the chronic underfunding and lack of interest it met from governments around the world. Before her passing, Anne left a message to the ME community, to advocates, and policy makers. See her important message here.

Anne Örtegren

Excerpt from Anne Örtegren’s letter to the ME community: -

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

For 16 years I have battled increasingly severe ME. 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 patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health.

We still don’t have in-patient hospital units adapted to the needs of the severely ill ME patients.

Funding levels for biomedical ME 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.

Anne’s words contd…

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME symptoms.

This means I no longer see a way out from this solitary ME 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 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.

As for most other ME patients who have chosen suicide, depression is not the cause of my choice. 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.

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 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.

Anne’s plea to decision makers:-

Give ME patients a future!

If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME research up so it’s on par with comparable diseases

You need to make sure there are dedicated hospital care units for ME inpatients in every city around the world.

You need to establish specialist biomedical care available to all ME  patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME  patients a future. 

Anne’s message in full below 

http://lobel.nu/anne.html

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Emily Collingridge

Emily Rose Collingridge was born in London in 1981.  She contracted mumps in 1987. She and her family had no idea just how much the future was going to test her strength of character. For nine years she suffered a huge array of worrying symptoms for which doctors could find no cause.  Ignorance about ME and poor advice meant that she spent many years struggling to attend school and trying to keep up with her peers when it was far beyond her capabilities.  
In 1996 she finally received a diagnosis, but by this time was completely dependent on a wheelchair. Despite being severely affected and almost entirely housebound, she threw herself into work as the PR and Fundraising Manager for the Association of Young People with ME - AYME. During this time she spoke to many families who were affected by ME and learnt a great deal about the condition. 
In 2005 she was forced to stop working due to an extreme deterioration in her health.  She continued to decline for nearly two years. Sadly Emily's health deteriorated again in 2010 and she died in hospital on 18th March 2012. 

Here's a piece on Emily by the 25% ME Group -  A Day for Remembrance

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Merryn Crofts (UK)  lost her life to Myalgic Encephalomyelitis (ME) in 2017 just days after her 21st birthday.

On Severe ME Day we highlight Merryn’s story in the hope that Merryn’s untimely death is not overlooked and the urgent need for proper recognition of, and research into ME is recognised and ME no longer be trivialised.

Merryn’s mother Clare Norton has kindly given permission to us to use Merryn’s story and images.

Merryn’s legacy lives on as we reflect on the seriousness of Myalgic Encephalomyelitis (ME). In a landmark inquest in May 2018 Merryn became only the second person in the UK to have ME listed on a death certificate.

In early 2012 tests revealed that at some point Merryn had contracted glandular fever, a virus which can trigger Myalgic Encephalomyelitis (ME). 

Despite dozens of medical appointments Merryn’s condition deteriorated as she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light, and sound. She was forced to wear an eye mask, also suffered from severe migraines, brain fog, slurred speech, and persistent infections.

She was eventually diagnosed with ME in the summer of 2012.

25% of those who suffer ME suffer from Severe/Very Severe ME. They suffer so severely they are bed bound, suffer constant pain, paralysis, sensitivity to light and noise so severe they lie in dark rooms with no sounds, skin sometimes so painful the smallest touch can hurt.

These are just a few of the most awful symptoms that Merryn endured. Stomach problems, and problems swallowing, meant that Merryn’s weight plummeted to just five-and-a-half stone. She could take on just 100 calories a day because her gut was in so much pain, and by 2015 even two teaspoons of nutrients were intolerable. She was eventually fitted with an intravenous nutrition line but suffered intestinal failure.

The Pathologist said that a post-mortem showed low-grade inflammation of nerve roots.

Merryn died in May, 2017, just days after her 21st birthday. 

Please see more on Merryn's story in our special remembrance post here

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ME Memorial Page

When someone with ME passes away a blue rose is displayed to remember them

'ME Memorial page' is a page that acknowledges those who have passed from ME or secondary conditions. Click here for the memorial page.

        

 #LeaveNoOneBehind

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Many thanks to Greg Crowhurst for much of the information above; thanks due to Christine Fenton for the work she did on the Personal Care Plan.

Thanks too to Clare Norton & other families who have shared stories of loved ones.

Thanks to the 25% Severe ME Group, Invest in ME Research Charity, Wendy Boutillier & others who have worked tirelessly for decades to educate & raise awareness of the WHO classified neurological illness Myalgic Encephalomyelitis (ME) G93.3

Blog post by Moira Dillon of ME Advocates Ireland (MEAI)  

ME visibility action outside Leinster House

Today, Tuesday 14th May 2019 a group of Myalgic Encephalomyelitis (M.E.) patients along with their carers, friends, family members and advocates will be holding a visibility action outside Leinster House on Kildare Street, Dublin from 11.30am to 2.30pm to highlight the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.

The name of this action is #Call4Change4ME

Here are some of the posters we will have on display to make the Government aware (again) 

of your continued fight.

We hope you can join us, but if you can't be there in person, can you please support us via social media?

• Instagram

• Facebook

• Twitter

Many thanks

* Above poster designs by Noreen Murpy.

Our demands in a nutshell.

 Read our press release HERE

Tags like these which give you a snippet into the

lives of people with ME will also be on display.

Many can be read on our Instagram Page

M.E. Visibility Action, Ireland - #Call4Change4ME

M.E. Visibility Action  #Call4Change4ME

MEAI pressrelease:

Tomorrow, Tuesday 14th May 2019 a group of Myalgic Encephalomyelitis (M.E.) patients along with their carers, friends, family members and advocates will be holding a visibility action outside Leinster House on Kildare Street, Dublin, from 11.30am to 2.30pm to highlight the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.

The name of this action is #Call4Change4ME

Many of these patients, some young children, are living lives shut away from the world in dark rooms, too ill to bear even the smallest interaction or movement. They simply would be unable to attend this event, but they will be represented on a display of information tags. The tags will give some information about themselves, where they are from, how long they are ill, etc. 

We hope that these poignant images will bring awareness to the Minister for Health Simon Harris TD, the HSE, the media, the general medical profession and the wider public of how utterly devastating this illness is to children as well as adults.

The theme of this year’s awareness event is ‘Invisibility’. There will be a mask-wearing moment during the Visibility Event where a group of attendees will put on masks to highlight so many of the invisibilities associated with ME.

The invisibility begins with the failure to use the correct International diagnostic criteria, – The ICC-ME, with the result that many people are given a ‘throwaway diagnosis’ of M.E. because clinicians are not following the proper route for testing. This does no favours to those with M.E. or those who may be suffering other conditions but get labelled incorrectly with M.E.

The invisibility continues with the lack of appropriate healthcare pathways, the lack of a national policy on Myalgic Encephalomyelitis, the lack of teaching on M.E. for GPs,  the lack of M.E. aware Consultant Specialists and the lack of other healthcare personnel who are trained in the complex nature of M.E.

Myalgic Encephalomyelitis is an acquired neurological disease (classified under G.93.3 of the WHO International Classification of Diseases) with complex global dysfunctions including pathological dysregulation of the nervous, immune, and endocrine systems and with impaired cellular energy metabolism. In the most severe cases, patients with M.E. are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise. Yet these patients do not have a care plan pathway available to them within our health service as there are no specialist/consultant services here in Ireland.

This appalling situation needs to be rectified and today is another step in our campaign to get appropriate medical services and a consultant led clinic that can carry out the appropriate testing needed to properly diagnose those with the condition.

This protest has been organised from the beds of some very ill people - people who will suffer greatly from the cardinal symptom of M.E. – post exertional neuro-immune exhaustion (PENE). Many of these patients will pay very dearly and may spend days, weeks and even months afterwards bedbound and dealing with a massive exacerbation of their symptoms.

We would be happy to talk to any media about the event and we would really appreciate any coverage you can give us, especially on May 14^th, outside Dáil Éireann.

M.E. and the HSE: the good, the ‘bad’ and the ‘ugly’.

For patients with Myalgic Encephalomyelitis (M.E.) the HSE is an organization full of contradictions.

A reflection by MEAI member Corina Duyn on dealing with the HSE

 (Ireland's Health Service Executive)

  
At Primary Care level one can meet HSE staff with up to date medical knowledge of this neurological illness. When being met with understanding and support I am so incredibly grateful. It almost brings me to tears. Yet, of course this knowledge of such a debilitating illness as M.E. should be standard.
It is not.
The higher one goes up the HSE ladder the more challenges one faces to get the support we need. 

The good:

I would like to express a big Thank You to my Primary Care Physiotherapist. She fully embraces the dangers of exercise for people with M.E. She is mindful to prescribe only slight movements to at least maintain my current level of mobility. She gave me ‘Hand Putty’ in the hope to improve the strength in my hands so I can work with clay again. It is with deep gratitude that she supports me as a person with a complex illness, but also takes time to listen to my challenges, hopes, and dreams. When she suggested I need some ‘hands – on’ physio work, she expressed concern, correctly, about causing more harm than good.

The speech and language therapist also fully accepted M.E. and respected that I have a good understanding of my illness. I was referred to her after a recent hospital admission, due to inability to speak and swallow properly. My Occupational Therapist shared her knowledge to make my house safe and fully considered my increasing level of disability. Including providing me with a powered wheelchair, which I can use in my small house. My thanks also goes to my GP, and my Public Health Nurse whom is fighting tirelessly to obtain care support at home. A big thank to my carers, and non-HSE support of family and friends.

The ‘bad’.

The next level of HSE staff are further removed, and perhaps therefore not fully embracing the reality of M.E. These are the people who make decisions over my life, without actually having met me. They work in offices, do the ‘numbers’ and make decisions based on local guidelines. Not national HSE guidelines. Getting support is very much a postcode lottery.

I fought relentlessly for a year to ask for a care package, preferably a Personal Assistant (PA), so I could remain living at home, but also have the support to leave my home with assistance. Over time I received 5 days care for 1.15 hours a day. Weekends, although approved were not provided. The continued fight and lack of suitable care while increasingly more ill resulted my being taken into a care home for the elderly just after Christmas. I was too unwell to look after myself. It was a totally unsuitable location. Read the story here:

I am aware that some HSE staff at this level did fight for me, but were not in a position to make executive decisions. Thank you for speaking up for me.

Coincidentally The Journal.ie (link also included in the above Blog Post) published an article about the long battle, at the same time as I was taken into care. Together this seems have woken up the HSE and ‘suddenly’ I was provided with seven-day a week home care package. Thank you. But it all came at a cost to my health.

The clinch is that in order to be in receipt of Personal Assistant (PA) support, one’s illness/disability has to be listed as an approved disability. As M.E. is not on the Disability Services list in my local Health area (CHO) I could not avail of PA services. In other parts of the country, M.E. is listed as disability. The Postcode lottery of care…

I am regarded as having a disability for all other parts of the HSE, and society.

 

In order to receive home care support one needs to be over 65, or be terminally ill. I am neither. So I fall between the cracks of care. There is a tiny budget for the likes of me within the over 65s HSE home care budget.

Asking for care is not easy. At times it feels like that care is a regarded as a privilege… I would do anything to not need care. To have the freedom to go about my day, in whatever way I please. To have the ability to contribute to society, instead of being a person who is on the receiving end.

Curiously my current home care package is funded by Disability Services. So I seem to have one toe in the door to being accepted as having a disability. Why is this important? Well, the outstanding issue is that with a PA provided by Disability Services, I could also be supported to leave my house. With home care this is a grey area. Home care is what it says on the tin: Home Care. Personal care.

The last time I was able to leave my house on my own was in October 2017. I still had the ability to use a mobility scooter at the time. This is no longer possible and do not feel safe going out on my own in my wheelchair. Unfortunately.

I am still trying to convince the HSE decision makers at this level, the ones whom have never met me, and are not responding to my request to meet me personally, that I have basic needs outside my house too. Like going to the bank, GP, shopping, perhaps even a visit to the library or having a social interaction outside of my house. Normal stuff.

This battle continues to this day.

The ‘Ugly’

The next level of HSE interaction can be even more challenging. Although there are some positives there too, but lots of room for change!

During my recent hospital admission, only a month after returning home from care, I was met with young doctors in A&E. Some in fairness knew about M.E., others acknowledged that they had limited information but were willing to learn. The sudden changes in my ability to speak properly were taken serious. Through test, a mild stroke was ruled out. I was in hospital for three weeks. As part of the assessments however, I was yet again referred to the psychiatry department. As you are damned if you agree to meet them, and damned if you don't, I did meet with a young psychiatrist. In fairness he was great. He totally took on board my experience of illness. He admired how I translate my lived experience through my creative work. This young man concluded by saying that he had no idea why I was referred to psychiatry. Thank you.

However, one morning I was plucked out of bed, and brought into a room with the consultant psychiatrist who had no interest in me. His only aim was to push me into following his ‘knowledge’ on how to fix my now 21 years of illness. He asked me if I was aware of the latest research. I told him I was aware of ongoing medical trials, and some medication. He proceeded to draw me a diagram of a stick figure standing on a path, a bolt of lightening on the right, a thought cloud on the left. My heart sank. He told me the story behind it. In short, it was my thought pattern that is keeping me ill. Even writing it now (for the first time since this happened in February) brings me great sadness. His solution was that I had to push through my ‘perceived’ limitations. Yet again I was made to believe that I am still ill because I do not want to get better. I am to blame for my ongoing illness. Who on earth want to live like this for a lifetime?  I told him his ‘proven treatment’ of CBT (Cognitive Behavioral Therapy) and Graded Exercise for people with M.E. was wrong. Outdated. Totally debunked. Talked about in the UK government as being dangerous and causing harm. I told him how I managed to live with this illness by knowing my limits. To pace my activities; To have a healthy mind; To meditate; To be creative, in every sense of the word. I told him how activities which give me great joy still result in PENE (Post Exertional Neuroimmune Exhaustion) if I continue any longer than my body allows.

I was dismissed.

My hospital discharge notes state that I ‘declined any further intervention with psychiatry.’

Well hell, Yes! But the sad thing is, that psychiatry made its way into my notes. I feel the care I received after this meeting was different. Maybe I am being paranoid, but that is what it felt like. Being momentarily upset after it proved very challenging to walk a few steps independently, was frowned upon. Grieving, which learned to be a necessary part of healing seemed to be viewed as sadness and not having a healthy mind. Other patients, who shed a few tears or gave out in a rather vocal and public way after realizing the impact of new health challenges, were supported. Was I now seen as suffering from a psychiatric illness? I truly don’t know. I don't know what is written in my medical notes. I just know that I was told to do things I could not safely do, like walking on my own.

The hardest part of life with M.E. is to not have my physical illness taken seriously and not to be believed by the ones that should Do No Harm.

I learned to live well with M.E. despite the many challenges, but the ignorance, the lack of understanding and willingness by people higher up in the HSE to be educated about M.E. remains the biggest hurdle to overcome. I became one of the founding members of ME Advocacy Ireland with the aim to bring awareness and hopefully change the way the HSE as well as the Government are caring for people with M.E. We truly need National Guidelines, training of all medical students, a dedicated M.E. consultant, and consistency across the country on the provision of care. On the 14th May, from 11.30am to 2.30pm we are once again Calling for Change for M.E. outside the gates of Leinster House.  Unfortunately I won’t be able to be at the protest myself as I am unable to travel, but will continue to campaign from my home, and through my writing and creative work. Please support us on the day and beyond.

Many Thanks

#Call4Change4ME

For more about M.E. please visit other page on our Blog 

Corina Duyn (Co. Waterford)

For more about my work see www.corinaduyn.com