Thursday, 9 February 2023

For Parents, Carers, Family & Others Who Do Not Understand ME & Severe ME

We See You and We Understand

It is hard enough dealing with this illness on your own, but even more so when those close to you struggle to even recognise that what you are going through is real. You can feel dismissed and disbelieved, while at the same time, also blamed for it. You can eventually start doubting every aspect of your being and sense of self.

Lack of support can take various forms, including others not believing that we are ill and not understanding the severity of the limits imposed by ME. It could be down to people just fundamentally not being able to put themselves in your shoes…you have to have experienced it to truly understand it.

Having ME or Severe ME may make you feel more vulnerable to those who are negative or demanding. The cost to your health of spending time with such people may be great enough to convince you that some relationships are not worth maintaining.

You may decide to keep close to some people and others you may consider essential in your life but the cost of spending time with certain people may be great enough to convince you that some relationships are not worth maintaining.

So, simplify the relationships that are necessary but may be unrewarding, and eliminate the ones that are unnecessary and unrewarding. How? Limit contact with relatives in the immediate and extended family who prove unsympathetic, unhelpful and cause stress and anxiety.

Educating Others

If you think educating others about your condition would make them more understanding or supportive, you might talk with them or give them something to read. One can deal with their family's lack of understanding by repeatedly reminding them of your limits.

Educating others about ME or Severe ME often requires time, energy and great patience and is not always successful.

Most who try eventually put limits on their efforts to educate others, focusing on the relationships that are most important and recognizing that some people may never understand or be sympathetic.

Another solution is to set limits, by making clear what you would and would not do, what you can and cannot do so that family allow you to pace yourself where possible.

Developing new sources of support is another way to handle lack of understanding from family. Such support can come from medical professionals, such as your GP or consultant; though you will need to spend time educating your GP and explaining how you don't have people in your life who care enough about your needs and require his/her support to educate and inform family members.

You could bring a family member to a future consultation having previously asked the doctor to explain to them about how difficult your illness is, to explain a little about the illness and the debilitating symptoms you have, and how the family member can support you. Sometimes family members understand the severity of ME if they hear about it from an professional figure such as a doctor.

Some people with Severe ME may require an advocate or a social worker to get their needs across to family or friends who could support them.

If you have heard “there is nothing wrong with you,” or “everyone gets tired”, etc or your family just don’t support you at all please don’t give up. We believe you. We know this is real and there are many others you will meet on support groups who know too. There are a few things you can do to overcome this; the most obvious step is to educate.

Resources

There are resources below which you could use to educate family members and/or others about your illness. 'Others' could be community supports such as HSE carers, private carers, community services, health/social care providers.

· Symptom & Severity Questionnaire and Post Exertional Response - PEM Questionnaire, Bells Disability Scale, & the International Consensus Primer may be of use to you, in particular the Symptom & PEM Questionnaires which are based on research. You may be too unwell to complete those but they could be completed over time or you could be helped to complete them, very useful to show family and friends your symptoms and to educate others about your illness. Certified completed questionnaires, i.e., ones signed by your doctor, would add more weight to the reality of your situation. Please access those above-mentioned documents below:

Symptom & Severity Questionnaire here

PEM Questionnaire here

Bells Disability Scale here

International Consensus Primer here

· Emerge (Australia) Guide will help others understand how to care for someone with ME who is confined to bed here

ME Crash Survival Guide by Bateman Horne Centre (US) has some content which may be of use to you to educate family members, pg 11 ‘Turn Down the Volume & Allow Recovery’ is particularly useful, see that via link

(NB: The content in the survival guide above is for information purposes only, please consult with your doctor before introducing anything new into your management regime, e.g. don’t introduce any new medicines or supplements without checking with your doctor first, e.g. the guidance on crash management refers to electrolyte drinks, salt & sodium, however if you have an undiagnosed rare condition it may be dangerous)

Films about Myalgic Encephalomyelitis (M.E.) may be easier to get the illness across than trying to get someone to read lots of information about ME

• An Introduction to M.E. Film (15 mins)

• What is M.E.? Film (7 mins)

• Patients’ Accounts of Symptoms Film ( 8x films of varying lengths)

• Concerns about Graded Exercise Therapy in M.E. and why it is inappropriate: Films (2xfilms, 9 mins each)

• An introduction to Severe M.E. & a more detailed look at Severe M.E: Films (2x films,15 & 19 mins)

• “Voices from the Shadows” is an educational film which shows the brave and sometimes heartrending stories of five severe M.E. patients and their carers. It shows the devastating consequences that occur when patients are disbelieved, and the illness is misunderstood Film (2 x films of same content, 30 mins and 1 hr)

• Educational short films which include information on inappropriate graded exercise therapy (GET), PENE (referred to as PEM), Severe & Very Severe ME, Symptoms & Management of Very Severe ME, Activity Management & Pacing Films (7 x films, all short & of varying lengths)

• Information re Management Strategies in ME in 'Heart Rate Biofeedback for ME' webinar presented by Mark Van Ness & Todd Davenport at the Workwell Foundation Film

Myalgic Encephalomyelitis (ME) & Severe ME

Myalgic Encephalomyelitis (ME) is a complex neurological disease involving profound dysregulation of the central nervous system & immune system, dysfunction of cellular energy metabolism & ion transport & cardiovascular abnormalities, as per the International Consensus Criteria, ICC 2011.

ME, which includes mild, moderate & Severe forms of ME, all of which can evidence fluctuating severe symptoms, can involve profound levels of suffering & extreme symptoms which can be life threatening. Life with Severe ME is reduced to basic survival struggling moment by moment, enduring extreme pain & no let up to the high intensity of symptoms. Needs are diverse & complex.

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

Severities

People in the ME community have different severities of ME- Mild, Moderate, Severe, Very Severe, *Profound. No matter what the degree of severity they do not describe themselves as fatigued or relate to ‘fatigue’ as their primary symptom. When we refer to the different severities of ME- Mild,Moderate, Severe, Very Severe, Profound - we refer to those as broad categorieswhich really have ranges within themselves i.e., Mild has its own range, as

does Moderate and so on.

A good scale that could be used along with these categories to determine near exact range is the Bells Disability Scale for example, see that again here

No matter what the degree of severity ME patients do not describe themselves as fatigued or relate to ‘fatigue’ as their primary symptom. Even Mild sufferers have significantly reduced activity level.

Severe Myalgic Encephalomyelitis (ME)

Severe ME includes different severity ranges: severe, very severe, and profoundly severe ME. It is hard for anyone to understand the horrors of living with Severe Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware to get a glimpse of the conversation they need to enter into to learn about Severe ME is vital. It is very important to raise awareness amongst both 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.

People with Severe Myalgic Encephalomyelitis require unique care due to the tendency for the illness to be exacerbated by everyday stimulisuch as light, noise and movement. They are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration. Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.

For people with Very Severe ME 'resting' implies 'complete incapacitation’ which means that inactivity is the only option. Those severely ill are often incapacitated because it is physically impossible for them to do anything else. Lying in a dark room in silence and with absolute zero sensory input, with absolute zero physical movement or cognitive activity. Clothing and bed linen must be comfortable but sometimes no clothing is preferred and particular materials for bed linen essential. The bedroom must have a very moderate temperature; not too hot or too cold.

Severe ME equals severe illness and multi-system dysfunction. Those with very severe Myalgic Encephalomyelitis (ME) experience profound levels of suffering and extreme symptoms, which can be life-threatening. Life may be reduced to basic survival, struggling moment by moment while enduring extreme pain. For some there is no let up to the high

intensity of their symptoms and their needs are diverse and complex.

· Around 25% of people with ME are severely or profoundly affected needing 24 hr care; 2% of those are very severely affected and may suffer from multiple hypersensitivities. These patients need critical care and management.

Severe ME patients can require a lot of help with basic needs; others require continuous 24-hour care, they may suffer from paralysis, atypical seizures, speech and swallowing difficulties, multiple hypersensitivities including extreme intolerance to light and sound. Some very severely affected may need tube-feeding because of malnutrition caused by an inability to chew and swallow food.

The pain of Severe/Very Severe ME is so extreme that drugs do not touch it and many are forced to take extremely strong drugs to gain minimal reductions in pain levels. Some patients have no pain relief at all due to acute drug sensitivity.

It is hard for anyone to understand the horrors of living with Severe Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware to get a glimpse of the conversation they need to enter into to learn about Severe ME is vital. It is very important to raise awareness amongst both 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.

How a person should manage an individual with Severe/Very Severe ME greatly depends on the individual patient; those with severe ME have different needs; some needs are immediate or critical.

“The person who cannot protect themselves from noise, cannot tolerate the pressure of earplugs/headphones, is in a dire situation and this needs accommodating.

We would recommend a MOMENT approach, particularly in relation to toileting and washing.

The most important thing, yes, is preservation of energy, however we would also emphasise that awareness of the right approach, at the right moment, in the right way, with sensitivity and empathy is absolutely critical.

Also the constant understanding that when things go wrong you can’t just do what you were going to do. Flexibility is paramount.”

- Greg Crowhurst, Severe ME Carer.

Resources

1. ‘Practical Ways that You Can Support a person with Severe ME':

https://bit.ly/3QrmsSS

2. ‘The Paradox of caring for people with Severe ME: why a MOMENT APPROACH is necessary’:

https://stonebird.co.uk/Paradox.pdf

Further information about ME

Please go to the main index on our webpage (please hit the 'Home' bar on a mobile device such as a mobile phone/ipad)

Information for Healthcare Providers here

Physiotherapy Care Notes here

Community & Public Services (Ireland only)

A person living alone, or a person living with others who has zero support, may be entitled to supports and services for people who need support in the home to help them remain independent; please see more about that below.

Tip: When you see the line 'Information on our Home Support Services for people aged over 65' or 'Home Support services for Older People' please ignore, there is no obvious policy available for those under 65....decisions are made about those under 65 who have disabilities are at the discretion of the Public Health Nurse.

Disability Services - Communty & Social Care

Disability Services would be the go-to service for a person with disabilities. It is not a self-referral service; please get a GP referral if your GP is supportive.

The HSE provides and funds a range of services for people with disabilities and their carers. These services include basic health services as well as assessment, rehabilitation, income maintenance, community care and residential care respite, home care and daycare. Some services are provided directly by the HSE. Community, residential and rehabilitative training services are provided by voluntary organisations with grant aid from the HSE. More information is available via the HSE link (there is nothing specific for under 65s so it may be helpful to access disability services via your GP).

There’s a link to Disability Services in your county, under the 'Related Links' heading, see here: https://www.hse.ie/eng/services/list/4/disability/

Home Support Services

The HSE provides Personal Assistants and Home Care Support Services as well as Respite Services and Therapeutic Supports, Aids and Appliances, that are designed to enable people to live as independently as possible.

NB: Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individual requirements of people with disabilities. The support you will receive depends on your individual needs, these will be identified during the Care Needs Assessment.

Please see our webpage entitled ‘Public and Community Supports’ which includes information about Home Support Services and more. Go to the various headings to find the various services which may be relevant to your circumstances, seeall that information via link here:

https://meadvocatesireland.blogspot.com/2022/05/day-23-myalgic-encephalomyelitis.html

Alternatively, go directly to the HSE information re Home Support Services here & here

Local Home Support Office - It may be easier to chat to your Local Home Support Office to find out how they can help you, here’s the link to find your local office: https://www.hse.ie/eng/home-support-services/contact-your-local-home-support-office/contact-your-local-home-support-office.html

Obtaining Mobility Aids & Appliances

Please see our information re mobility aids and appliances via HSE or private purchase/rent, e.g.,Mobility Scooters, Powered Wheelchairs & more, to support you to live independently inside and outside your home here

Enter

You sent

Notes

· There is a lack of HSE policy for under 65s, but those under 65 will be assessed according to their needs. You may see that most Home Care packages refer to over 65s, but please persevere and apply for what you need despite that.

The page about the Home Support Service explains how HSE provides help and support with everyday tasks to older people living at home and they include tasks that are specifically for people over 65 which you may not want. It would be a good idea to create a list of your actual care needs and stress that they are needs that you must have supported to be able to remain living in your own home. We have notes on 'My Needs' here

· Specific national policy relating to disability services from which local disability service policies, and the national policy/guidance which CHOs rely on to write their own local policies derive are difficult to obtain as they likely do not exist.

If you have questions about ME or ME supports that haven't been answered please contact us by email at info@meadvocatesireland.com or via the messenger button on our facebook page https://www.facebook.com/MEAdvocatesIreland. You may also find information on what you are looking for in one of our other blog posts.

Difficulties Accessing Supports

We understand how difficult it may be to access supports without help so we have provided some information re some support choices below; please be patient on the time it may take to access support, and you may have to be especially patient if you contact one service who may refer you to another.

Apply for an advocate to help you (2 choices below)

Ask your local health office for an Assessment of Need

Apply for an Advocate (free service)

The National Advocacy Service (NAS) is an organisation which helps adults with disabilities. NAS has a particular remit to work with people with disabilities who are in vulnerable situations, such as people who are isolated from their community of choice or mainstream society, may communicate differently and who have limited formal or natural supports.
Please see more about NAS here

Apply directly to use the NAS service here

Contact NAS
Phone: 01 5200863
Email: info@advocacy.ie

Sage Advocacy

Sage Advocacy ensures that a person’s voice is heard, that their wishes are taken into account and that they are assisted, in whatever ways necessary, to be involved in decisions that affect them. Sage’s work is independent of family members, service providers and systems interests.

Please see more about Sage Advocacy here before making contact with Sage Advocacy to make sure that your issue falls under their remit.

Contact Sage Advocacy
Phone: 01-5367330
Email: info@sageadvocacy.ie

Assessment of Need for People with Disabilities

An Assessment of Need is an assessment carried out by the HSE for children or young people with a disability. The assessment identifies your child's health needs and what health services are needed to meet your child’s needs.

You don’t have to get an Assessment of Need to access HSE services. You can apply directly to services outside of the Assessment of Need process.

You can download the Assessment of Need application form PDF online and post it to your local HSE Assessment Officer.

You can call your Local Health Office or the HSE information line on 1800 700 700 to get a copy of the application form sent to you at home.

Local Health Office Contact Details

If you need help completing the application form, contact your local HSE Assessment Officer. They will help you to fill in the application form and give you whatever information you need.

More here

If you are unable to apply for a needs assessment please phone the HSE information line, the number is 1800 700 700 and explain that you would like an Assessment of Need but you are unable to fill in the form on your own and unable to do it over the phone with someone.

Appeals & Complaints

Please see our various information re appeals and complaints for situations where you are not satisfied with the outcome of an application you made to access a service you have applied for.

Appeals, Complaints & Other Issues

Safeguarding Vulnerable Adults

HSE Safeguarding and Protection Teams are in place all over the country to provide help to anyone who is concerned about their welfare because of abuse by others.

Information about Safeguarding from Citizens Information here

Thanks to Emerge Australia, Bateman Horne Centre US, Leonord Jason (US), Workwell Foundation, Dialogues for a Neglected Illness -Natalie Bolton & Josh Biggs (UK) for some of your work we have included above.

There are some aspects of advocacy and education in other countries that we may not promote that you may see on the various websites we have mentioned in this post, i.e., what other ME organisations say, or the terminology they use, because aspects of ME may be viewed differently in different countries, and because some aspects just may not be suitable or appropriate to an Irish ME context. However, we hope that the pages we have shared will help you.

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 through other avenues, depending on your query or need for support, for example, via Citizens Information, Your Local HSE Office, Revenue or other.

About Myalgic Encephalomyelitis (ME)