Highlighting the seriousness of Myalgic Encephalomyelitis (M.E.)

 

   Trigger warning ⚠: the post mentions deaths in Myalgic Encephalomyelitis (ME)

“ME cruelly killed my daughter - the Dragons Den scandal is a disgrace” ~ Clare Norton

Severe ME

The symptoms experienced by someone with Severe/Very Severe/Profoundly Severe ME can be unimaginable - the level of highly tormenting hypersensitivities to ordinary things are both distressing and attacking, adding to the difficulty of getting safe, supportive, and experienced care.

In its worst form, people with severe, very severe and profoundly severe ME cannot eat or drink, are permanently confined to bed or hospitalised, cannot move, cannot sit or stand up, and are completely reliant on others for their care.

Some severe ME patients suffer from paralysis and malnutrition. Some die because of medical ignorance and neglect.

M.E. ends lives and can result in death

We hope that by posting the following information others will become aware of the horrors perpetrated on those with ME and Severe ME, and on others in the ME community including family members and carers.

Sophia Mirza

In 2005, in the UK, Sophia Mirza (32) died due to medical abuse and ignorance. She died as a result of acute renal failure arising from the effects of ME. An official inquest was held to determine Sophia’s cause of death. The coroner concluded that she died as a result of ME; she was the first person in the UK to have their cause of death registered as ME. More about Sophia here.

Unfortunately, Sophia is not the only one who has died from Severe ME.

Maeve Boothby O' Neill

In 2021, in the UK, Maeve Boothby O’Neill (27) died from very severe ME following medical neglect. Doctors denied her a feeding tube, and later denied total parenteral nutrition which could have saved her life. An inquest into Maeve’s case is ongoing. Maeve's mum, Sarah Boothby pointed to systemic failures in the care prior to her daughter Maeve’s death while battling severe ME. More about Maeve here.

Merryn Crofts

Clare Norton is the mother of Merryn Crofts (21) who became the second person in the UK to have ME listed on their death certificate after her death in 2017.
Years after her death, Merryn’s mum Clare Norton has bravely spoken out again about her daughter, defending her and highlighting the seriousness of ME following the acuseed treatment claim which featured on the Dragons Den on Jan 18th. More about Merryn here.



Merryn's mum Clare was recently interviewed by Ellie Fry from the Mirror, an interview which resulted in a piece that illustrates why the ME community are being harmed by a claim that a snake oil treatment cures ME:

https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464

We believe that it is incumbent on each and every one of us in the ME community, who are able to, to find a way to ensure that inappropriate and potentially harmful information and practices around ME are reported and highlighted so that informed and educated interventions can be made, inappropriate information be corrected and the reality of ME and severe ME highlighted.

Update 20/02/24

“There is no in-patient provision anywhere within the NHS for anyone with severe or very severe ME; …

this must be tackled at the very highest level.”

Our sincere thanks to Clare Norton & Sean O’ Neill for highlighting the lack of medical care for severe ME patients in interviews with Channel 4 News. 

This is not just an issue in the UK but also in Ireland and worldwide.

…. “difficult hospital admissions, neglect, stigmatisation, disbelief, resulting in death.”

Severe ME is one of the most disabling diseases there is, where patients experience profound levels of suffering and extreme symptoms, which can be life-threatening. 

Merryn Croft’s mum Clare Norton, and Maeve Boothby O’ Neill’s dad Seán O’Neill appeared recently on Channel 4 News to talk about UK NHS healthcare’s refusal of appropriate care for their daughters, and to raise awareness amongst health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.

(This may be a difficult watch)

The Channel 4 News interviews here

We remember Sophia, Merryn & Maeve

Contact

If you have a query or need further assistance please contact us via email to: 

info@meadvocatesireland.com

You can also contact us privately via the message button on our Facebook page

Excessive Thirst in Myalgic Encephalomyelitis

Excessive Thirst in ME

Excessive thirst in ME is a feature that is mostly overlooked and seldom gets the attention it needs. 

Please see 2023 blog piece about thirst by Irish ME patient Patrick Ussher, a long but very well-written blog post which appears in Health Rising.org; you might want to read it in smaller chunks or read about the gist of the post by Health Rising further below. 

The blog post includes a talk about thirst in ME which ME patient Patrick Ussher gave to the Irish ME Trust (IMET), please see Video.

The Gist of Patrick Usher's Blog Post about Excessive Thirst in M.E.

         by Health Rising 

"Many ME patients suffer from polydipsia – a condition that involves unquenchable thirst, dilute urine, a worsening of thirst during post-exertional malaise (PEM) and, at least in some patients, the development of hyponatraemia (low blood sodium).

Patrick Ussher, an Irish ME patient, used to suffer from this symptom at its most extreme – to the point that he developed life-threatening hyponatraemia and was hospitalised.

In the hospital, he was diagnosed with a mental health condition, ‘psychogenic polydipsia’, in which it is assumed that patients drink enormous quantities of water in the absence of physiological needs and because they are mentally ill.

After his hospital stay, Patrick managed to resolve his extreme thirst through his own research and later wrote a (free) book about what might be causing thirst in ME (details to follow).

In Patrick’s hypothesis, excessive thirst in ME  is mainly caused by the low blood volume that is characteristic of the illness. Research has consistently found that ME  patients do not have enough blood, with some patients short by a litre or more. The most significant reason for this reduction in blood volume appears to be the suppression of the renin-angiotensin-aldosterone axis, a hormonal system which controls salt levels in the body.

The brain actually has two distinct thirst centres: osmotic (triggered when the body’s water content is too low) and hypovolemic (triggered when the plasma blood volume drops by 10%). It is this little-known second thirst centre that is likely being triggered continuously in ME patients.

Crucially, the hypovolemic thirst centre is not ‘looking’ for water in order to be ‘quenched’. Blood is salty stuff and, in order to boost blood volume, the ingested fluids need to be appropriately salty.

Patrick believes that most ME patients fall into the understandable trap of just drinking pure water in response to their thirst (for who doesn’t drink water when they are thirsty?). 

When this water is excreted by the kidneys, though, the blood volume will remain low and, as a result, the thirst will continue – and even grow – as sodium levels and blood volume continue to drop.

When Patrick switched from drinking pure water to drinking ORS (oral rehydration solutions), he experienced a profound decrease in his thirst along with a significant improvement in his quality of life. 

In previous research, ORS has been shown to increase blood volume as effectively as a saline IV in POTS patients.

Later on, Patrick researched ‘psychogenic polydipsia’ in detail. He found that it is a condition which has received little research and which is generally regarded as a ‘medical mystery’. 

In fact, several leading academics have suggested that the supposed ‘psychogenic’ basis might be a mistake and that the real mechanisms simply haven’t been identified yet.

When Patrick researched the earliest papers into the condition from the 1940s and 50s, he came across several intriguing patient case studies. 

Those patients had symptoms reminiscent of ME such as ‘aching everywhere’ and profound ‘weakness of the legs’. Among other reasons, this led Patrick to believe that, at least in many patients, what has always been termed ‘psychogenic polydipsia’ may have been a misreading of the biomedical thirst experienced in ME patients.

Patrick’s book challenges the psychogenic basis of ‘psychogenic polydipsia’ (also known as ‘primary polydipsia’) and instead maps out a model of ‘hypovolemic thirst’ which can explain the symptoms in organic terms. 

The book is called ‘The Myth of Primary Polydipsia: Why Hypovolemic Dehydration Can Explain the Real Physiological Basis of So-Called Psychogenic Water Drinking’. It is available on Amazon and from themythofprimarypolydipsia.com as a PDF download.

At its most extreme, this symptom can lead to hyponatraemia-induced coma and death. 

Despite this, the current diagnosis of ‘psychogenic water drinking’ offers only stigmatisation and no practical help. If ‘hypovolemic dehydration’ could re-explain these symptoms in organic terms, it would not only lead to much-needed medical help but also to greater awareness about the biomedical nature of ME among future medical students.

Patrick is looking for doctors/medical researchers who may wish to work on a hypothesis paper or other similar collaborations."

Rehydration Solution Options

From the Bateman Horne Centre (US) here

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances. 

Submission re Green Paper on Disability Reform by ME Advocates Ireland (MEAI)

New Submission Deadline - 31st July 2024

Green Paper on Disability Reform

The Minister for Social Protection in Ireland announced proposed radical welfare ouverhaul with the publication of the Government's Green Paper in September 2023. The Disability Green Paper is available to download and view under the heading 'Documents' on the Government page via this link.

Summary of Green Paper Proposals 

(see link to Easy Read further below)

There are three proposals included in this Green Paper:

1.The introduction of a new single scheme, the Personal Support Payment. This section introduces the key principles of the scheme which has three tiers. It sets out how the three tiers and the different payment rates of this new system would work.

People who are placed in tier 3 (moderate to high capacity to work) will be provided with more employment supports than people in the other two tiers. They will be required to take up training and employment offers that correspond to their capacity to work.

Payment durations will be established and linked to the anticipated duration of the person’s disability in tiers 2 and 3.

2. For people who work, a new Working Age Payment model will replace the current fragmented system of employment supports. Currently, people on a disability payment can either avail of an earnings disregard (Disability Allowance and Blind Pension), or can transfer to Partial Capacity Benefit (if they are in receipt of Invalidity Pension). This results in major differences between how mucha person can work and earn.

3. To raise the age of entry of Disability Allowance to 18 years of age and extend the payment of Domiciliary Care Allowance to 18 at the same time.

The existing Disability Allowance, Invalidity Pension and Blind Pension payments will be replaced with a new contributory and non-contributory Personal Support Payment. As with the State Pension, people will qualify for payment either based on contributory social insurance basis (funded by the social insurance fund) or on a non-contributory, means tested basis (funded by the Exchequer) Tiered approach of the Personal Support Payment Rather than assessing a person’s capacity to work on a two-option basis –that is, that a person is either fully capable or fully incapable of work –a tiered approach will be taken. 

This will reflect the levels of disability and capacity so that a person who qualifies for a Personal Support Payment will be assigned to one of three broad categories based on their capacity to take up work and the level of support they need.

The level assigned could be one of the following:

Level 1: High support –Very low capacity to work The person has a high level of incapacity and low capacity to work. This means they are very unlikely to be able to take up any kind of paid employment for as long as their condition persists and for at least 2 years.

Level 2: Medium support –Low to moderate capacity to work The person is assessed as having a disability that is expected to limit their capacity to work for at least 24 months. However, they may be capable of undertaking some types of work and durations of work –for example, part-time as opposed to full-time –but are not likely to be able to fully support themselves through paid employment alone for as long as their condition persists.

Level 3: Low support –Moderate to high capacity to work The person is assessed as having a disability that is expected to persist for at least 24 months. This means that they cannot do certain types of work activity (including the type of work they were doing before acquiring their disability). However, they may still be capable of taking up other forms of employment and to do many types of work activity. This makes it a realistic option for them to progress towards sustaining themselves through paid employment alone.

The Personal Support Payment rate will then be set at three levels based on this categorisation:

• Level 1: The payment rate will be aligned with the State Pension (Contributory) rate of payment. (This rate is currently € 265.30a week.)

• Level 2: The payment rate will be set at a level between the level 3 and level1 rate.(€242.65 a week)

• Level 3: The payment rate will be aligned with the current standard payment rate for Disability Allowance. (This rate is currently €220 a week.)

Green Paper Proposals Easy Read

 

"Compassion for those who are suffering has been replaced by a punitive, mean-spirited, and often callous approach apparently designed to instil discipline where it is least useful, to impose a rigid order on the lives of those least capable of coping with today’s world, and elevating the goal of enforcing blind compliance over a genuine concern to improve the well-being of those at the lowest levels of society.”

ME Advocates Ireland (MEAI) Green Paper Submission

ME Advocates Ireland (MEAI) is concerned about the adequate provision of state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME). 

Where services, resources and welfare entitlements are unavailable, inaccessible, or under threat of being taken away, ME Advocates Ireland (MEAI) aims to highlight these inadequacies in the hope that the situation is improved in favour of the person with M.E. associated illness and disabilities. 

We have responded to the recently published government Green Paper on Disability Reform with our submission by email on behalf of members of the M.E. community in Ireland.

We think that the Goverment's proposal is a reductive, regressive, brutal way to frame the lived experience and reality of life for our disabled citizens, and vehemently oppose the proposal by the Irish Government to categorize disabled people for the purposes of allocating social welfare payments. Please see our reasons as outlined in our submission.

Our completed submission is available here .

The full email details re the submission made by ME Advocates Ireland (MEAI) on 07/11/23 including the response from Government and any other updates on the matter are at the bottom of this page.

Continue below for sample submissions by us and others.

Useful Schemes for People with M.E. Associated Disabilities in Ireland

 

Invisible Disabilities    

According to Hidden Disabilities, 1 in 5 people across Ireland live with some form of disability, and 80% of these are non-visible, which is just under one million people who are living with a non-visible disability. Here are some schemes which may be useful to anyone with a disability.

DISABLED PERSONS PARKING PERMIT

The Irish Wheelchair Association is the country’s biggest provider of disabled parking permits.

Their online service allows first-time applicants to apply for a parking permit application form, and existing customers to renew their parking permits online.

This is a scheme which is now open to many disabilities including some types of invisible disabilities, depending on your condition and the eligibility criteria.

Although Myalgic Encephalomyelitis is not considered as one of the types of disabilities the IWA considers, physical disabilities are listed by them...Myalgic Encephalomyelitis is an illness associated with physical disabilities so it is your physical disabilities that will be assessed.

To find out more information and to apply for the scheme visit:

https://www.iwa.ie/ser.../motoring/disabled-parking-permits/

If you are unsure about any aspect of the process, you can read the following guide:

https://www.iwa.ie/.../guide-to-the-disabled-persons.../

DISABILITY ALLOWANCE

Disability Allowance (DA) is a weekly allowance paid to people with a disability. You can get DA from 16 years of age. You can get Disability Allowance even if you are in school. This is a social welfare payment from the Irish Government for people who have a permanent disability that prevents them from working in Ireland due to their condition. For more information visit:

HSE: https://www.gov.ie/en/service/df6811-disability-allowance/

Or

Citizen’s Advice: https://www.citizensinformation.ie/.../disability...

You can access the Disability Allowance Application Form via the links above.

MEAI's advice re qualifying criteria and more about applying and appeal processes:

http://meadvocatesireland.blogspot.com/.../supports...

DARE SCHEME

The Disability Access Route to Education is for any student sitting their leaving certificate with a disability, illness or condition which has a significant impact on their education.

DARE is a third level alternative admissions scheme for school-leavers under the age of 23 as of 1 January 2024, whose disabilities have had a negative impact on their second level education.

A disabled person can apply for this scheme to reduce points for college courses. The scheme ensures that everyone has an equal chance to progress into higher education.

To be eligible for DARE thestudent must meet both the DARE Educational Impact criteria and DARE Evidence of Disability criteria.

Although Myalgic Encephalomyelitis is not considered as one of the types of disabilities DARE considers, physical disabilities are listed...Myalgic Encephalomyelitis is an illness associated with physical disabilities.

For more information, visit https://accesscollege.ie/dare

SUNFLOWER LANYARD SCHEME

This is a scheme that originated from Gatwick Airport, on how to identify someone with an invisible disability when using their disability services. It has now grown and expanded to the UK and Ireland and can be used in shops, services and transport.

More information and helpful tips on how to obtain a Myalgic Encephalomyelitis sunflower lanyard here

To find out more or to get your own sunflower lanyard visit www.hiddendisabilitiesstore.com, then choose your country by hitting the flag in top right corner of the page.

SUNFLOWER PARKING SCHEME

This scheme was piloted by Waterford County Council and was met with great excitement and praise. Hopefully the scheme will be rolled out across Ireland. Waterford City and County Council installed two Hidden Disability Car Parking Spaces in Scanlan’s Yard in Dungarvan, Co. Waterford.

The car parking spaces, introduced in September 2021, are easily identified with a bright yellow sunflower on a green background, see images in comments.

As not all disabilities are visible, or immediately obvious, the car parking spaces are in a safe location, not immediately located beside the road and are the same dimensions as a Wheelchair accessible parking space.

Anyone with a hidden disability has the right to park in the Sunflower space - there is no requirement to display a Sunflower badge, sign or disc on the vehicle. Users of the Sunflower parking space do not need to wear a Sunflower lanyard or any other product to indicate that they have a hidden disability.

Some of the users may not qualify for a Blue Badge, so these courtesy parking spaces provide a safe and accessible place to park. The hidden disability spaces require paid parking, with the Pay and Display ticket machine located close to these spaces.

More Supports

MEDICAL CARD

The Republic of Ireland provide medical cards which allow people with low levels of income or people with profound illness or disability have free access to healthcare services and medications. To check your eligibility please log onto the HSE website: https://www2.hse.ie/ser.../schemes-allowances/medical-cards/

For more information, advice and qualifying criteria on how to apply for a medical see our webpage here: https://meadvocatesireland.blogspot.com/.../day-23...

GP Visit Card 

Income limits for means tested GP Visit Cards have recently increased for a second time this year. 

More people now qualify for a GP Visit Card; if you qualify for a GP Visit Card, you will not have to pay to see your doctor. 

The quickest and easiest way to apply is online at hse.ie/gpvisitcards where you can find out more information, more here

Further Supports

PUBLIC & COMMUNITY SUPPORTS IRELAND

SOCIAL WELFARE SUPPORT IRELAND

Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3

Myalgic Encephalomyelitis (ME) Classifications:

• WHO Classification ICD 10 G93.3 classified as a Neurological disorder

• WHO Classification ICD 11 8E49 classified as a Neurological disorder 

• SNOMED Classification SCTID: 118940003 classified as a disorder of the nervous system 

• NASS (HRB) G93.3

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk. The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance in some instances. 

All rea

Essential Care Around Malnutrition in Severe Myalgic Encephalomyelitis (ME)

"This group of patients just don’t exist in the consciousness and experience of those from whom they need knowledgeable, guided & appropriate care." 

Malnutrition in Severe ME

One often overlooked but crucial issue that significantly impacts the lives of individuals with severe Myalgic Encephalomyelitis (ME) is malnutrition. Patients with very severe ME can experience difficulty maintaining their nutrition and hydration. In the most severe cases it is not uncommon. 

The most common reason for malnutrition in a severe ME patient is ME associated debility. There are a variety of other reasons which we will discuss below.

This post contains important and relevant information to be shared with patients' families and carers and more importantly with the doctors in a hospital where you or a person in your care is being refused treatment for malnutrition as a result of having severe ME, or where the patient is not being treated appropriately. 

The focus of this post is on overcoming the challenging aspect of accessing appropriate nutritional support for individuals with severe Myalgic Encephalomyelitis (ME). When we say 'severe' we refer to people with either severe, very severe or profoundly severe ME.

Our Pre-Budget 2024 Submission

 

Time for Action - Invest in People with Disabilities

Pre-Budget 2024 Submission

We have completed a Pre-Budget 2024 submission and emailed it to Government. We tried to include as much as we can with regards to our knowledge of government plans and strategies, and with regards to issues which have been reported to us through feedback via various ways, e.g., survey feedback and social media platforms.

Please see our Pre-Budget 2024 Submission here

#investinpeoplewithdisabilities

Advancing Disability Rights Progressing People’s Potential

Further Information

Our 2023 Survey report re the ME community's experiences with Social Welfare here

Submission to the Joint Committee on Disability Matters in November 2020 here