Tuesday 31 May 2022

Thank You - Day 31 Myalgic Encephalomyelitis (ME) Awareness Month


We would like to thank everyone for their incredible support to us, educating and raising awareness about Myalgic Encephalomyelitis (ME) during May, and for all the likes and shares, the comments and messages.

Thanks to those who were dedicated to sharing information and advice about ME daily for 31 days, your encouragement and underpinning of our work was greatly felt and appreciated.


On the last day of ME awareness month, we are pleased to share poems by Rosalynde Lemarchand (The French Femme) who has written from and about her own personal feelings and experience of living with ME for over 20 years. Rosalynde’s poetry echoes the thoughts and feelings of so many others who suffer like she does. Her poems aim to portray the harsh reality of living with a long-term chronic illness.

At the start of May, Rosalynde announced the publication of her new book 'Another 31 Days in May' for awareness month. This book is made up of a selection of 31 short poems to raise better awareness and understanding as well as to raise funds for the charity Invest in ME Research. 

The book is available in paperback and kindle edition and all proceeds from the sales will go to Invest in ME Research. Thanks to Rosalynde for raising awareness about ME in easy to read poems that tell others how it is with Myalgic Encephalomyelitis (ME). 

Here is a link to her book .

Poems shared by Rosalynde during May, ME awareness Month

Again, thank you for your support during May. Please continue sharing our ME information posts published during May and pass on any resources/tools from those posts that you may find useful to others in the ME community.


Monday 30 May 2022

Dedication to Retha Viviers

“Living with ME is a bit like living in a prison. The size of your cell depends on how ill you are. It can be your bed, it can be your home and when you leave your cell it comes at a high price, because you risk the chance of relapse.”




It is International Myalgic Encephalomyelitis (ME) Awareness Month and today’s ME Awareness post is dedicated to Retha Viviers, founder of the ME CFS Foundation South Africa.

We have never met you but feel that we know you through your endless and selfless advocacy work to raise awareness for people with ME in South Africa.

Retha founded the ME CFS Foundation South Africa, the only ME charity in South Africa, in 2016 because there are an estimated ± ‪110 000 patients in South Africa; there is no other private or government assistance for patients; 75-85% of patients are too ill to work; and there are no disability benefits available for South African ME/CFS patients. Retha has made it her life mission to raise awareness for ME and to practically support patients in dire need.

Retha started her career in Market Research and moved onto Business Analysis and Strategic Planning. She worked in the petroleum, cement and construction industries. Projects ranged from Market Research, Health and Safety compliance, Feasibility Studies and Project Management. She was diagnosed with ME and a few years later formed a closed support group for people with ME (and Fibromyalgia) on Facebook in November 2012. She then went on to establish the ME CFS Foundation South Africa, a new purpose in life, one of helping others in the same or worse situation her family was in. It has been her passion to make a positive difference in the lives of others with ME.

“I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post exertional malaise.

ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability, it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.

From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. I started a support group on Facebook in November of 2012 and over the years saw the dire need of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.

Why did I co-found The ME CFS Foundation South Africa? I realised something had to be done and co-founded The ME CFS Foundation South Africa. I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from the bed. I always have to religiously stick to my resting schedule and there are still days where I am too ill to do anything. Fortunately, there are 3 other co-directors. Each person reached makes all the hard work and sacrifice more than worth it.” 

~ Retha Viviers (from ME CFS Foundation South Africa’s website)



Here is Retha talking about how she lives with Myalgic Encephalomyelitis in a short film about life with Myalgic Encephalomyelitis (ME)



Retha has worked with determination and dedication to help people with ME in South Africa by creating awareness and giving physical and emotional support. She and her foundation go above and beyond to assist patients in need with the following medication, food and basic necessities, visits to health care practitioners, airtime, and data (as many patients are housebound and have no other means of communication). All assistance is completely resource dependent. The foundation receives no government assistance and is completely dependent on donations.

The ME CFS Foundation South Africa’s aim is to transform lives and advocate for appropriate healthcare and dignity for people living with ME. ‘The ME CFS Foundation South Africa is the first entity of its kind in South Africa (and Africa) founded in response to a devastating multi system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. If you’d like to know more about The ME CFS Foundation South Africa, please visit their website www.mecfssa.org


At the start of ME Awareness Month we were saddened to hear that you are seriously unwell Retha. We hope you know that we are thinking of you every day.

We are grateful for all that you do for people with Myalgic Encephalomyelitis (ME) in South Africa, and for your ME education and awareness raising which has reached all corners of the globe.

Sunday 29 May 2022

Advocating for People with Myalgic Encephalomyelitis


Established in 2017, ME Advocates Ireland (MEAI) is an all-volunteer group dedicated to raising awareness and education for the ME community, medical professionals and HSE community services. 

ME Advocates Ireland (MEAI) advocates for people with the neurological disease Myalgic Encephalomyelitis (ME) supporting patients to access appropriate healthcare, community services and welfare.


We urgently need:

·       To adopt & use the International Consensus Criteria (ICC) - to include accurate diagnosis

·       To include ME in all teaching – GPs, Medical, Nursing, Social Care

·       To train health professionals – all acute and PCCC staff

·       To design specialist training modules for ME to create GP awareness

·       To appoint an ME consultant as a national lead for ME

·       Clinical Care Pathways (Paediatric & Adult)






In the absence of clinical guidance on ME, acute and community staff have no lead, nowhere to turn. It is recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition with information in relation to the care and support available through the HSE to adult s and children. 

There is no recognised set of criteria used by the HSE - In the absence of clinical criteria on ME, acute and community staff have no lead, nowhere to turn. – It is recommended that the HSE adopt robust criteria such as the International Consensus Criteria, 2011.




·       It is potluck as to the GP’s ‘belief’ of what ME is, is it organic, does it have a specific pathophysiology, is it psychological or is ‘the patient’ not-coping with life?


·       Many medics do not regard ME as an organic presentation.


.       Most have no knowledge of the pathophysiology of ME, their reference is ’fatigue’.


·       Attitudes to service users range from supportive on a person-centred level to dismissive and blaming for not ‘making an effort as there’s nothing wrong with you’.


·       Standard bloods come back within lab range. No knowledge of issues with low in range results or too high in range.


·       ME appropriate tests are not done, e.g., NASA lean test and others mentioned in the International Consensus Primer (ICP).



·       GPs have no idea of a referral pathway to an ME knowledgeable consultant; some ask their patients if they know who to refer them to.



·       Treatment/management of ‘obvious symptoms’ is not based on an understanding of the pathophysiology of ME.



·       No knowledge of the concept of post exertional neuroimmune exhaustion (PENE) whereby as energy supply decreases the body’s functions shut down to enable the essential organs of survival to function.


·       GPs seem unaware of the severity of ME as patients attending a GP are mild or moderate or are those within the more severe categories who use their ‘one off mind over matter’ energy to get to and from the surgery, but then experience the exacerbation of symptoms which PENE triggers for a period of time making the basics of daily life such as food, fluids and heat pushing the person further into PENE.



·       Those at the most severe end of the ME spectrum, the severely and profoundly ill ‘do not exist’ as they cannot attend a surgery.  House visits are ‘unusual’, and many GPs have no understanding of the needs of a person with severe/very severe/profound ME, certainly ME is not seen as a reasonable reason for a house call.



·       GPs seem unaware that the quality of life of people with ME is the lowest of ANY chronic illness.



·       Many GPs believe children ‘can’t get ME’.



·       Parents with children with moderate ME are encouraged to push their child into ‘normal’ activities, which, given the pathophysiology of ME creates a high probability of deterioration.



·       GPs refer children to paediatricians in local hospital groups, where the same lack of knowledge and attitudes referred to with reference to GPs are found.



·       Referrals to the Children’s Hospital Group raise further issues as the group continues to advocate CBT & GET, both designed to dismiss and deny the child’s experiences of their body by requiring them to ‘push through the warning signs as they are unhelpful illness beliefs’’ which has the potential to cause psychological harm to a child who is ill.



·       A further issue arises when school attendance falls below accepted levels, as neither EWO’s, Social Services or Tusla understand ME or the potential for causing harm by forcing a child to attend school when they are struggling to manage the basics of daily life.



·       The lack of GP knowledge means that the ‘early’ support system which contextualises the clinical presentation and defines, through discussion with the child and the family,  what is and is not possible in terms of activity, is absent.  This lack of clinical support and guidance to those in community services leaves a family and the child without the supports they needs and in fear of the uninformed judgements being made about them, therefore their problem is increased by both health and social services rather than them being supported.



·       This absence of clinical context provided by the GP increases the risk of harm, to the child, possibly causing permanent harm, and lowers the opportunity for remission/recovery which a child, effectively managed, has a greater chance of achieving than an adult.



·       Once a child is of an age to leave Children’s services, there is no ‘joined up’ service provision or referral route. Many paediatricians retain their patients beyond the age ‘cut off point’ as there is nowhere to send them.



·       For those who are referred to adult services there is no transfer of files from Paediatric to Adult services.  Files are simply closed and stored away so for those with ME it is like starting the journey, into the unknown, all over again.



·       The risk of poor experiences in Paediatric services due to having ME can result in caution/fear when entering Adult services given the lack of knowledge or consistency in acknowledgment that ME is a WHO classified neurological disorder.





·       If a person is referred to a consultant, the common experiences are as with a GP.



·       Neurologists, cardiologists, and rheumatologists etc. largely dismiss the aspects of ME which sit within their specialities as they do not meet the threshold for intervention according to their clinical guidance. 



·       Without the involvement of a clinician who understands the complexity of ME as it affects all systems and organs, the attempts of one speciality or another to address one aspect of a presentation or ‘a symptom’ can lead to further imbalance or a further experience of ‘nothing to see here’ and dismissal.



The HSE’s often stated response that people with ME are given ‘symptom management’ can reasonably be stated to be an act of neglect. The ME community is an unusual one as they have no HSE ‘Lead’ or even anyone with an interest in ME that the HSE can identify.



·       It is hard enough for those assigned to a disease specific consultant or one knowledgeable about their illness to overcome the barriers living with disability provides.  Having ME adds a further barrier and inequality, as many have no access to a consultant, and for those that do, there is no knowledge of the underlying pathophysiology which can be emphasised to support an application as listed above.



·       Access to support in the home, care, adaptation grants etc all benefit hugely from the support of a consultant, but for most with ME, this support is unavailable.



·       Consultant support for those who cannot leave their homes is absent.



·       Collectively, we have met only two consultants who ‘speak the language’ of ME and have some grasp of the complexity of the disorder and the dreadful toll it takes on the life of the individual sufferer and their families. But they are not ME consultants and have other roles which takes from there potentially being a knowledgeable ME consultant available fulltime. With the numbers with ME it is not practical that we continue to do without ME leads in each CHO.



·       How many people with ME avoid hospitals and acute services as they do not believe the investment of their energy to attend or be admitted will pay any dividends?



·       How many people with ME have experienced harm and have deteriorated due to an admission?



·        Hospitals too often evidences a dismissive response from staff, a denial of the illness or even any awareness that it exists and denigration of the person with ME is all too often a reported outcome.










When will the HSE & Government become sufficiently aware of the harm being done to adults, and to children and families across the country who are suffering due to the lack of knowledge of ME?

Until there is an objective framework of standards, based on a sound and quality evidence base, there can be no accountability.

How can the HSE hope to address a situation if it does not know what the territory is?

Qualitative and quantitative data are required for the HSE to understand the complexity of the current situation re ME.

Government health departments “worldwide” need to take responsibility for this massive injustice that has left ME patients without appropriate healthcare, thus afflicting them with the poorest quality of life than most major diseases (some of which aren’t nearly as common).

There are millions of people with ME suffering year after year, decade after decade with no end in sight. The logical way to highlight a disease is to talk to, and about those who unequivocally have the disease. There’s absolutely no substitute for first-hand knowledge.






ME Advocates Ireland (MEAI) are continuously and steadily working to get the HSE to commit to creating guidelines and guidance for people with ME in Ireland, for all age groups and all severities, across all HSE services. By all age groups we mean Adults & Paediatrics; by all severities we mean those with Mild, Moderate, Severe, Very Severe, & Profound ME.


Saturday 28 May 2022

Disability Payments

About Illness Benefit, Invalidity Pension, Disability Allowance, Supplementary Welfare Allowance & Appeals

  (Please check for regular HSE Support updates at the end of the post which we will add as they occur)

Illness Benefit

HSE: https://www.gov.ie/en/service/ddf6e3-illness-benefit/#how-to-qualify

Citizen’s Information: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_benefit.html#l30369

Access the Illness Benefit Application Form via links above.

Whether your employer pays you, or not, while you are out sick from work, you can apply for Illness Benefit which is a weekly payment. Illness Benefit is not linked to your employer's policy on pay for sick leave. However, if you get sick pay from work and Illness Benefit, you should ask your employer about any arrangements in place for this.


To qualify for Illness Benefit, you must:

Be aged under 66

Be medically certified as unfit for work by a medical doctor (GP).

Have enough social insurance (PRSI) contributions – see below.

Apply within 6 weeks of becoming ill.



Illness Benefit is paid for a maximum of:

2 years (624 payment days) if you have at least 260 weeks of social insurance contributions paid since you first started work



1 year (312 payment days) if you have between 104 and 259 weeks of social insurance contributions paid since you first started work


Important to note:

Before your Illness Benefit payment is due to stop (max two years) you will be contacted by the Department of Social Protection (DSP) telling you when your payment will stop and giving you information on your options, for example:

Our advice is that you make a note of when your illness benefit is due to end when you first receive it and think about completing your application for either Invalidity Pension or Disability Allowance a few weeks/months before Illness Benefit is due to end, so that there is continuity of payments while you are not working, and because it can take a long time to get the follow-up payment you may be entitled to.

If you are ill and likely to be permanently incapable of work and satisfy the PRSI conditions, you may get Invalidity Pension

If you do not get Invalidity Pension and you have a disability that is expected to last for a year or more, you may get a Disability Allowance

If you do not qualify for any other payments and your income is too low to meet your needs, you may get a Supplementary Welfare Allowance


Your Illness Benefit claim will be reviewed from time to time and you may be asked to attend for a medical assessment. This assessment will be carried out by a Medical Assessor, who is a doctor employed by the Department of Social Protection. The Medical Assessor will give their opinion on whether you are fit for work. You must attend for a medical assessment when asked, or your Illness Benefit will be suspended.


If your Illness Benefit is stopped, you have a right to appeal the decision. If you are getting credited contributions only and these are stopped, you can seek a review of the decision, but you do not have a right to appeal it.


Rate of Illness Benefit

Your Illness Benefit rate will depend on your average weekly earnings in the relevant tax year. Average weekly earnings are your gross earnings (without deductions) in the relevant tax year divided by the actual number of weeks worked in that year. Usually, no payment is made for the first 3 days of illness.




How to Apply for Illness Benefit

You must apply for Illness Benefit within 6 weeks of becoming ill.

If you don't apply within 6 weeks you may lose some of your payment. If there is a good reason for a delay in applying, your payment may be backdated.


Paper application form

You must get an Illness Benefit claim form (IB1) and a medical certificate called a ‘Certificate of incapacity for work’ from your family doctor (GP). You fill in the IB1 form and freepost it to the Department of Social Protection - see 'Freepost' address below.


Your GP can provide one medical certificate to cover the duration of your illness. Some GPs can complete the medical certificate online. If your GP cannot send it online, you will get a paper medical certificate which you must fill in with your personal details and freepost it with your IB1 form to the Department.


You do not pay for the ‘Certificate of incapacity for work’ as the Department pays the doctor an agreed fee. However, you may have to pay for the doctor to examine you.


Hospital certs: if you are or have been an in-patient in a hospital, you should ask a hospital doctor to give you a pro forma letter which you can bring to your GP who then gives you the claim form (IB1) and medical certificate (Certificate of incapacity for work) with no charge. If you’re still in hospital, a family member can bring the pro forma letter to your GP on your behalf.



Completed claim forms (IB1) and medical certificates (Certificate of incapacity for work) should be sent by Freepost to: Social Welfare Services, P.O. Box 1650, Dublin 1.



If you think you have been wrongly refused Illness Benefit, you can appeal the decision to the Social Welfare Appeals Office. You should appeal within 21 days of getting the decision.


Where to appeal

Illness Benefit

Department of Employment Affairs & Social Protection

P.O. Box 1650

Dublin 1



Tel: (01) 704 3300 or 0818 928 400

Homepage: https://www.gov.ie/en/service/ddf6e3-illness-benefit/

Email: illnessbenefit@welfare.ie


For more about Illness Benefit see

HSE: https://www.gov.ie/en/service/ddf6e3-illness-benefit/#how-to-qualify


Citizen’s Information: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_benefit.html#l30369


Disability Allowance and Invalidity Pension

Access to the schemes is different. Disability Allowance is subject to a means test. Invalidity Pension is subject to a Social Insurance test (5 years of paid contributions). Also, a person can access Disability Allowance from age 16,whereas access to Invalidity Pension is restricted to people aged over 18. In practice, given the social insurance contribution requirements for Invalidity Pension, those under 21most likely wouldn’t qualify.
The medical test to qualify for the social insurance-based Invalidity Pension requires a person to be assessed as being permanently incapable of undertaking any work. In contrast, the social assistance-based (means-tested) Disability Allowance requires a person to be incapable of undertaking work suitable to their experience, knowledge,and skills for a period of 12 months.


The payment rates and tax treatment are different. Invalidity Pension has a higher rate of payment (currently €225.50 a week) than Disability Allowance (currently €220 a week). Disability Allowance is not taxable. Invalidity Pension payment is taxable. However, due to the rate of payment it is unlikely that tax would be imposed on their social welfare payment. Tax may be imposed if a person has other sources of income such that their total income is over the taxable income thresholds.

Arrangements for access to paid work are different. 

DisabilityAllowance recipients benefit from an ‘earnings disregard’. This means they can earn a certain amount before their payment rate is affected. If they earn more than the disregarded amount, their payment rate reduces gradually as their income from work increases. A person can earn a maximum of €495.10 a week from work and keep their entitlement to a minimum rate of Disability Allowance.
Invalidity Pension is different. If a person in receipt of an Invalidity Pension wants to take up some employment, they must leave that scheme and move to a different scheme, Partial Capacity Benefit (PCB). Under PCB, a person keeps a fixed proportion of their income support payment, related to their level of incapacity, irrespective of their earnings from work.

For example

In practical terms, a person on Disability Allowance earning, for example, €20,000 a year from employment will have their weekly payment reduced to €112.50 per week giving them a take-home income of about €497 a week when combined with their salary. By comparison, a person who transfers from Invalidity Pension to Partial Capacity Benefit would receive a similar take-home pay if they are assessed as moderately restricted (€497.37).

Why these differences exist

Payment systems evolved over time and resulted in differences between schemes. Our income supports can be traced back to the Poor Law of 1838 and the Workmen’s Compensation Acts of the 1880s, with Disability Allowance being introduced in1954 and Invalidity Pension being introduced in 1970.The different contexts within which the payments were introduced and the changes since their introduction led to differences that persist to this day.



Invalidity Pension

HSE: https://www.gov.ie/en/service/d148b9-invalidity-pension/


Citizen’s Information: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/invalidity_pension.html#:~:text=for%20Invalidity%20Pension-,What%20is%20Invalidity%20Pension%3F,Invalidity%20Pension%20is%20taxable


Access the Invalidity Pension Application Form via links above.

Invalidity Pension is a weekly payment to people who cannot work because of a long-term illness or disability and who are covered by social insurance (PRSI).

To qualify for Invalidity Pension you must meet both:

·       Social Insurance (PRSI) rules

·       Medical rules

You must have at least:

260 (5 years) paid PRSI contributions

48 weeks of paid or credited PRSI contributions in the last or second last completed year before the start date of your permanent incapacity for work. The start date is decided by the Department of Social Protection (DSP). It is usually after you have been unable to work for one year. But it can be less than one year if you are permanently incapable of work for life.


To meet the medical rules, you must:


Have been incapable of work for at least 12 months and be likely to be incapable of work for at least another 12 months (you may have been getting Illness Benefit or Disability Allowance during that time)




Be permanently incapable of work (in certain cases of very serious illness or disability, you can transfer directly from another social welfare payment or from your job to Invalidity Pension).

A Deciding Officer in the DSP will decide if you meet the medical and PRSI rules for Invalidity Pension.



To apply for Invalidity Pension

Fill in an Invalidity Pension application form (INV1) (pdf). You can get a form from your Intreo Centre or Social Welfare Branch Office.


You can apply for Supplementary Welfare Allowance while you are waiting for your Invalidity Pension claim to be processed. SWA is a means tested payment. In a means test the Department of Social Protection examines all your sources of income. To get SWA, your income must be below a certain amount.


More about Invalidity Pension

HSE: https://www.gov.ie/en/service/d148b9-invalidity-pension/

Citizen’s Information: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/invalidity_pension.html#:~:text=for%20Invalidity%20Pension-,What%20is%20Invalidity%20Pension%3F,Invalidity%20Pension%20is%20taxable.



Disability Allowance

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


Citizen’s Advice: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_allowance.html

Access Disability Allowance Application Form via links above


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.


To qualify for Disability Allowance you must:


Have an injury, disease or physical or mental disability that has continued for at least one year or is expected to continue for at least one year

Be substantially restricted because of your disability from doing work that would be suitable for a person of your age, experience and qualifications

Be aged between 16 and 66.

Pass a means test – a means test looks at any income that you have – see ‘How your income is assessed for DA’ below

Live in Ireland and meet the habitual residence condition.

If you qualify for DA, you may also get extra social welfare benefits with your payment and other supplementary welfare payments.

Medical assessment

Your doctor must complete a report on your medical condition as part of the application form. This report is reviewed by one of the DEASP’s medical assessors.


The medical report will allow the DEASP to determine if you:

Have an injury, disease or physical or mental disability that has continued for at least one year or is expected to continue for at least one year.


DA is a means-tested payment. In a means test the Department of Employment Affairs & Social Protection examines all your sources of income. To get DA, your income must be below a certain amount. But your parent’s income is not taken into account when you are assessed for Disability Allowance.

More information on Disability Allowance via links below:

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

Citizen’s Advice: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_allowance.html


Our Advice for Anyone Applying for or Appealing Invalidity Pension or Disability Allowance

It can take several months to be processed for either Invalidity Pension or Disability Allowance and many have to go through an appeal process after being initially turned down. Feedback from people in the ME community shows a high failure rate on the first claim for Invalidity Pension and in many cases on the first claim for Disability Allowance. It is worth assuming that you will be refused and start preparing for your appeal soon after you have made your initial application, collecting any new evidence and supporting documentation, to include any new relevant test results and doctors reports or supporting letters confirming diagnosis and chronic illness.

A high percentage are turned down on first application. A good percentage pass an appeal. Why? They want to lose you on the initial application but can’t ignore the facts if you keep on their case.


Our advice is that


-        You get a strong letter of support from your consultant(s) and occupational therapist to confirm that you will be incapable of work for an indefinite length of time, i.e., longer than 12 months, because of the chronic disabling nature of ME.

-        You include completed documents such as the De Paul Questionnaires on Symptom, Symptom Severity and PEM, as well as completed Bells Disability Scale. Please find all above mentioned questionnaires here

-        You could gather up all recent MRI, CT and x-ray reports no matter how relevant they are. Add very single report from all consultants/specialists and bind them in a folder. Write a letter with it too with description of how you are, what the outcome was from the scan/report and annex it. For Example, Annex A - first CT scan and date. Add any report associated with your scan. Annex B- Brain MRI and the report, and so on depending on medical records you may have.

Include everything, no matter how small you might think its relevance.

-        You add a list of all the prescription meds and all the supplements you are taking.

-        You include a brief ‘before and after illness Journal describing how you were before illness, i.e., work/hobbies/activities/health, and how you are now with chronic illness, giving an account of your worse day and the disabling symptoms.

Remember some people with Myalgic Encephalomyelitis (ME) can experience fluctuating illness, seeing a relatively moderate day and then following activity seeing horrendous days, don’t forget your worse days when getting across how debilitating and disabling ME is, i.e. the debilitating symptoms and features of your ME that prevents you from activity and deems you unfit for work.

-        You could add another supporting document called ‘My Needs Statement’, more here

-        You could add detail re the various treatments/therapies you have tried over the past months/years (which could be considerable). That way you are providing evidence of your attempts to get better and ambition to return to work, as well as showing how ill you are.

-        You could add a letter from your GP pointing out that because of your symptoms you are unable to work...this can work better than ‘because of her ME she can’t work’ as ME may not be recognised but your disabilities and disabling symptoms that prevent you from being active would be taken into account i.e., the list of debilitating symptoms that prevent you from working in any job.

-          If you are asked to do an oral interview get your doctor to support you and say you are not well enough to attend an interview. 


    Other patients have reported success at the appeal stage after approaching a local representative for support. You could get onto one of your TDs and explain what’s happening and ask for their support. You can do this by phone or email though a phone call may be better. If you are not up to making the call get someone else to make a call on your behalf.  

-        You could include a consultant’s letter stating a  confirmed diagnosis and outlining inability to work indefinitely and explanation of why you are unable to work.

If you don’t see a specialist then the GP needs to make a stronger case that ME is relentless and specifically that there’s no cure. The main line is that the illness is chronic, and patients suffer for decades. Then personalise it to say you’ve struggled with ME for a long time and pushed through but haven’t been able to work for a while and won’t indefinitely. No one can decide when you are better.

I’ve noticed that in the past my own consultant can say things in a letter like ‘has improved’ on such and such a drug and that definitely does not help so leave anything like that out of the file you send them. Improvements in ME are mostly temporary because of the fluctuations in ME. 

The bottom line is that with ME we see ourselves having ‘good’ days and bad days. You need to describe your absolute worst day because though we have ‘good’ days we know the bad days come and that’s only what they need to hear about. Don’t give them any positives whatsoever. Give an inch they take a mile! Give a very clear and concise outline of your typical worst day and your struggles with regards to activity, mobility etc.

I’ve heard of people regularly ringing the Dept of Social Protection to keep on top of the progress of the application or appeal. Keep on them and let them know you are not going away.

I have heard that your  local representative (TD) can make those calls too on your behalf especially if you’re not up to it.

At the end of the day the welfare system is actually much fairer than the private Insurance one, and with a bit of persuasion you can get around the welfare one.

Citizens Information are very helpful with the application process and an appeal.


Don’t give up - don’t let the first decision to refuse you welfare put you off, it is important to fight for your right to financial support and appeal the decision. The Department of Social Protection appear to try to lose people early in a process, but they may eventually recognise proof of illness and disability, and award applicants following an appeal.

Remember that when you are refused supports it is not personal, it’s the system trying to put people off and not pay them. You are just a statistic, and the deciding officer has no idea of your hell. Appeal the decision and get a medic to support you in a letter stating you were in a particular profession and why you can’t work to that profession citing some of the duties of that profession as examples.


You may have limited time to make an appeal, please check the letter of refusal you received. More on Appeals below



Checklist When Appealing A Social WelfareSocial W

Checklist When Appealing A Social Welfare Decision There are a number of stages involved in the appeal process. This checklist from ‘Thinking Disabilities’ outlines these stages and explains the process involved in making an appeal to the Social Welfare Appeals Office.

Supplementary Welfare Payments

You can apply for Supplementary Welfare Allowance (SWA) while you are waiting for your Invalidity Pension/Disability Allowance/Appeal to be processed. SWA is a means tested payment. In a means test the Department of Social Protection examines all your sources of income. To get SWA, your income must be below a certain amount. You can contact your local community welfare officer to receive that ‘emergency money’ while you are waiting for the outcome of an application and/or appeal.


Supplementary Welfare Allowance (SWA): List of offices administering SWA:



 More information here



The Equality Act says no one should be discriminated against because of their disability - excluding someone because they have an ‘ME’ label rather than another ‘acceptable’ label would seem not to be lawful, though a case would need to be brought and a judgement made so there was case law to rely on.

Further Information &Supports

  • Post on Public and Community Health Supports and Services here 
  • Post on Mobility Aids and Appliances - Mobility Scooter and Powered Wheelchair etc here
  • Link to powerpoint presentation with Social Welfare information on Disability Allowance and Invalidity Pension here
  • How to make a complaint re a HSE service/healthcare/other, please see our page about making a complaint here
  • The Disability Legal Information Clinic, run by the Centre for Disability Law and Policy in NUI Galway provides free, accessible, confidential legal information on disability related legal issues and is available right across Ireland for disabled people, their families and supporters. The clinic is staffed by law student volunteers who are supervised by a member of the CDLP team and a qualified legal practitioner. In the past the clinic has dealt with issues in relation to housing, education, employment, discrimination and access to supports or services. To find out more about the clinics work visit the website here. You can also email dlic@nuigalway.ie if you have any questions or would like to arrange an appointment.



With regards to Disability BenefitInvalidity Allowance, etc there is no harm in letting the Department of Social Protection know that our HSE is not excluding anyone based on the name of their illness, which strongly suggests they too should be assessing against need not name.
For anyone told ‘ME is not on our list of disabilities’ here is a response from National Community Operations here, received on 09/02/23

The statements:
1) ‘Services are provided on the basis of assessed need rather than diagnosis and take into account the individualised requirements of people’ is a standard now stated which if your area is not complying with the national standard by denying an assessment because ‘ME is not on the list of disabilities’ you can quote the national position dated 09/02/23 to them and ask why they are not adhering to it, copy National Director Yvonne O’Neill into your email: communityoperations@hse.ie

2) ‘I have also included the link National Framework for developing Policies, Procedures, Protocols and Guidelines that the CHOs rely on to develop policies and guidance:’ which infers that your local disability services ‘should’ have a policy which they rely on which describes their operational processes.
Ask for the policy and Servce User information from your CHO area manager so you know what to expect from a service.

More on National Framework for Developing Policies, Procedures, protocols and Guidelines here

There has been significant work undertaken to enable people with chronic illness to live their lives at home, it is however recognised that these services are available to all patients. The HSE provides Personal Assistants and Home Support Services as well as Respite Services and Therapeutic Supports, and Aids and Appliances, that are designed to enable people to live as independently as possible. Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individualised requirements of people.


ME Advocates Ireland (MEAI) collated anonymised feedback from one of the surveys held during May to update the information post on Social Welfare in Ireland, and to use when we are communicating with the HSE.

Participants completed the survey only if (i) they live in Ireland and (ii) have applied for a Welfare Payment in Ireland because of illness and disabilities associated with Myalgic Encephalomyelitis (ME), or if the participant is a carer who has applied on behalf of someone with ME in Ireland.

Our Social Welfare Survey Report which includes anonymised participant feedback from the ME community, our comments and advice here

MEAI's Pre-Budget 2024 Submission here



Important information for anyone on a welfare payment such as Disability Allowance or Invalidity Pension: here

MEAI will put in a submission regarding the new plans. For anyone else interested in writing a submission here are the details: here

Closing date for submission December 15th 2023

For any comments about this or if there’s anything you wish to have included in a submission by us please email us at info@meadvocatesireland.com or contact us through the pm button on our Fb page.

Template Submission

Submission Templates re Green Paper for Welfare Reform

ME Advocates Ireland (MEAI) have put together two template submissions regarding the Green Paper for Welfare Reform announced last month for anyone interested in responding by sending a submission. Link to the Green Paper is in comments.

There are two links to templates included below for anyone in the ME community who (i) is receiving a disability payment (Disability Allowance/Invalidity Pension), or (ii) for anyone who wishes to support those on disability payments.

We encourage as many as possible to support those in the M.E. community.

You can edit the template that concerns you as you wish by removing or adding any additional details. If you are not up to making edits you may send the document as it is.

How to send your submission:

You may make your submission by email or post:

Email: DCPolicyConsultation@welfare.ie
Postal address: Disability and Carers’ Policy Unit, Áras Mhic Dhiarmada, Department of Social Protection, Store Street, Dublin 1, D01 WY03.

How to edit the template submission

Open the link on this post, then download to your PC/laptop, edit then save.

The closing date for submissions is 15th December 2023.
Responses received after this date will not be considered.

Here are the links to the template submissions:
(i) For anyone who is receiving a disability payment Disability Allowance/Invalidity Pension

(ii) For anyone who wishes to support those on disability payments 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.