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)  

Radio Interview -Talking about Myalgic Encephalomyelitis (ME)

ME - 'a condition that is often misunderstood'

Recently ME Advocates Ireland (MEAI) were contacted and invited to talk about Myalgic Encephalomyelitis (ME) by a local radio station in Castlebar, Co Mayo. Christine Fenton, one of our members, offered to do the interview and she chatted with Angela Faull on Thursday morning, 10th of January on CRCfm about ME in general and about her own illness.

The presenter was well aware that ME is a condition often misunderstood and recalled reading a book about an American doctor who had a role in teaching and helping people suffering from AIDS, and 'who found it more difficult to sustain her ME patients than it was to sustain her AIDS patients'.

Christine talked about the cardinal feature of ME, Post Exertional Neuroimmune Exhaustion (PENE), which can be caused by any amount of physical or mental activity, eg having a shower, talking on the phone.

Christine highlighted the lack of support for ME patients in Ireland especially from the HSE, despite a recent recommendation from a report from the HSE to set up a working group to bring about guidelines.

She referred to mixed attitudes among HSE personnel where she has met staff who want to do their best but she has also met other staff who are totally dismissive.

 'There is no culture in the HSE that understands it [ME]'. 

Here is the link to the complete interview below.

https://youtu.be/KMzPi_MNSEI

Compiled by MD

Nobody Should Have to Live like This - I Need Care to Live Independently

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ME patient Corina Duyn reflects on the challenges of having Disability Services in Waterford accept her as having a disability.

One of ME Advocates Ireland (MEAI) co-founding members, Corina Duyn, a ME patient/advocate, is currently trapped in a care home because she cannot live in her own home without the necessary homecare she requires, and her disabilities are not recognised by the HSE as disabilities in the area where she lives. Her illness Myalgic Encephalomyelitis (ME) is however recognised as a disability elsewhere in Ireland where other patients have been provided with home care packages to suit their needs.

Post code lotteries have become a real issue when it comes to seeking help from the HSE in Ireland. Corina, who needs daily care, is currently looking for homecare that will enable her to live in her own home. She has written to HSE's 'Have Your Say', HSE Community Care, Head of Primary Care, Disability Services, the Public Health Nurse and a Senior Complaint Officer. All are aware of her ongoing situation but so far Corina has not received concrete answers or a solution. Her pleas for help via regular emails and phone calls have fallen on deafened ears and she is now ten days in a care home for the elderly.

Corina who is 56 years of age was forced to go into the home for the elderly over the Christmas period because of a worsening of her health and an inability to care for herself. Corina's greatest fear is that she would have to remain in the care home and won't be able to return to her home. 

Tweet from Chronic Illness Inclusion Project

An article published by TheJournal.ie on January 2nd, and written shortly before Corina deteriorated in her own home during Christmas, highlights the importance of recognising all forms of disability and judging them on their own merit. Sometimes categories of disability do not work and as a result people fall through the cracks in the system. Link to article 

Compiled by MD