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Corina Duyn

Opinion 'Nobody should have to live like this - I need more care to meet my basic needs'

The HSE doesn’t recognise my disability. The lack of care hours means choosing between food and a shower, writes Corina Duyn

I HAVE BEEN ill with Myalgic Encephalomyelitis (ME) for 20 years.

But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and my health has deteriorated.

Back in 1988 when I first became ill, I didn’t realise it would result in a long-term disability and initially, I received care from friends and lived for a month with my brother and his family in Kenmare.

Then I returned to my own home in Lismore and looked for care support. I was initially told that home help, as it was called in 1998, was for the over 65s only. A local council representative helped to get me a few hours of care per week.

After several severe relapses in which I found myself totally paralysed for short periods of time, which lead to hospitalisations, my home help hours were eventually increased to seven days a week – up to four hours a day.

This meant that I was able to live in my own home and I am immensely grateful that this intervention was presented to me by the HSE. The fact that I was in my own surroundings enabled me to rebuild my totally altered life, from scratch.

I was housebound for years, only occasionally making it outside, mainly for medical appointments.

A very challenging time, but at least I didn’t have to worry about where my food was going to come from, how I would have clean clothes, or a clean environment.

My care needs were being met.

A Daily Battle

In 2006 I met my partner, and when she came to live with me about a year later, I was proud to give up the home help support.

Unfortunately, our lives have now moved in different directions, and I find myself living alone and without a carer. As a result, I once again had to embark on asking for HSE support to help me live independently.

This has now become a daily battle.

Although my health has deteriorated over the past six years, I am quite comfortable spending a lot of time in solitude. I can entertain myself quite happily by reading, looking out the window, taking photos of the birds, marvelling at the changing seasons, coming up with creative ideas, which might or might not come into being.

I love to write and create when I can. As a founder member of ME Advocates Ireland, I am now using my writing skills to be a voice for others who are less able.

I also love being out in my garden or greenhouse and I enjoy visits and phone calls from friends and family.

Dealing with the HSE, however, brings about immeasurable stress and impacts negatively on my mental and physical well-being. 

No pathway

The HSE system of allocating care hours has changed dramatically over recent years. Previously the Public Health Nurse made a judgment about the level of care required.

Now, this is done through a central allocation system where someone in an office, who does not know me personally, makes the decisions.

One problem is that there is less funding available, but for ME sufferers the situation is particularly complex. The HSE has not yet established a clear pathway of care for people living with ME.

So despite the fact that many people with ME are housebound, or even bed-bound it is not recognised as a disability.

My current very real challenge is that I need support to meet my most basic needs, such as showering, having food prepared, having my household chores done and to occasionally leave my house, including to go to GP or hospital appointments.

In short, I need help to live.

After much struggle, I now have 45 minutes of home support on weekday mornings, and a half hour in the evening. I am deemed eligible for weekend hours but there is no funding available for this. I desperately need care seven days a week.

Because I don’t get weekend home support, I also don’t get help on public holidays. So that means that this holiday season, I have just four days when I receive care over an 11 day period, between Friday 21 December and Wednesday 2nd January.
 
This, I feel could put my health at risk.

Recently I had to decide how to use my 45 minutes of care.

There was no prepared food in the fridge or freezer. I had no clean laundry left and I had three days of dishes piled up but I also desperately needed a shower.

I was in floods of tears (and am crying again even now as I write this) trying to figure out what was the best way to use my 45 minutes of care. I also had to find a way to get my food shopping done.

Around in a circle

I have been asking (again) since December 2017 to be assessed by HSE South Disability Services with responsibility for adults with physical and sensory disabilities.

I need this assessment to obtain a Personal Assistant, as that support would allow me to have autonomy over my care. But ME is not considered a physical disability by that office.

They suggest that my GP and the primary care team should provide for my care and to contact the Public Health Nurse to submit an application. But the Public Health Nurse fills in a very basic assessment form, which does not take into account the complexity of living with ME.

That application then goes to the Home Support Office. That office has no remit for anyone under 65 unless they are terminally ill, so they send the application to the Disability Services.

But the Disability Services does not accept ME as a disability – and so I go around in a circle. Nobody takes responsibility.

 To make this picture even more bizarre, for all the services of the HSE and other agencies, I am recognised as disabled.

I have a Primary Medical Cert and receive the Mobility Allowance, both of which are only awarded in extreme cases of physical disabilities. I am on the Physical and Sensory Disability Database.

I am on Disability Allowance and I had disability support while attending college.

I have a powered wheelchair and other mobility aids provided by the HSE.  My house is adapted with an accessible shower and a ramp at my front door.

People who see me in my wheelchair either at home or occasionally when I’m outside my house, are as bewildered as I am – that the Disability Service says that I am not disabled.

In May 2018 following a suggestion by a staff member at the Disability Services, I filled in a formal complaint with the HSE  through their Have Your Say service. 

 This has not brought a solution. It brought tears.

Vulnerable

I feel vulnerable. My illness continues to throw more challenges my way and I have not left my house independently for the past year – a scary thought.

I have spent many weekends when I am totally on my own. Including during a severe relapse, when all I could manage was to move from bed to wheelchair, to recliner, and back to bed. During severe relapses, I sometimes struggle to get to the bathroom or to get water for myself.

I have my personal alarm button on my wrist, and I am grateful for friends who are on the other end of the phone-line, but I cannot expect my friends to become my carers.

I feel it is a human right, a human need, to have autonomy over my care. My aim is not to get the HSE to admit they are neglecting my care. I don’t want to be an antagonist. I am not looking for a settlement and I don’t want to go to court.

I want to work with the HSE, I want them to examine the discrepancies which exist in the different HSE Community Health areas in the country. 

My struggle to secure care has taken a huge toll on my mental and physical well-being, now I want that struggle to result in a change of policy so that other ME sufferers and all of those with long terms illnesses which have resulted in disability, don’t have to go through the mental trauma that I have suffered.  

Corina Duyn, is a volunteer with ME Advocates Ireland

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    Mute Aisling
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    Jan 2nd 2019, 9:14 PM

    Completely empathise with you Corina. I have ‘POTS’ which is an ‘invisible illness’ also. Thank you for bringing awareness to those who are housebound and don’t have a voice.

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    Mute Finbarr Dowling
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    Jan 2nd 2019, 9:29 PM

    @Aisling: how was it diagnosed. I think I might have it

    32
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    Mute Aisling
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    Jan 2nd 2019, 9:49 PM

    @Finbarr Dowling: cardiologist diagnosed it. Need to find one that specializes in the area/arrhythmia specialist, I had a previous cardiologist who was useless. I saw Dr. Lyne in blackrock clinic who diagnosed me and started my treatment. It involves a lot of excluding other causes as has a lot of overlapping symptoms as other diseases. Some neurologists also can diagnose it as technically it is a nervous system disorder. Best of luck!

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    Mute Chemical Brothers
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    Jan 2nd 2019, 10:37 PM

    @Aisling: POTS & ME may be more closely related than you think. Possibly different symptoms to the same underlying protean immune system disease.

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    Mute Corina
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    Jan 3rd 2019, 4:35 PM

    @Aisling: thank you. I hope to be a voice of many, and at bring much needed change in the way we are cared for. Listened to. Understood. Accepted.
    Be well

    11
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    Mute Robert Tedders
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    Jan 3rd 2019, 6:18 PM

    @Chemical Brothers: What do you mean by “protean”; are you simply mis-spelling “protein”, or is this something else entirely…?

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    Mute Chemical Brothers
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    Jan 3rd 2019, 7:41 PM

    @Robert Tedders:

    Definition of protean 

    1: of or resembling Proteus in having a varied nature or ability to assume different forms

    2: displaying great diversity or variety

    4
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    Mute Graham
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    Jan 2nd 2019, 9:30 PM

    Absolutely heartbreaking. Thank you for having the strength to keep fighting for your and others rights. Goes without saying that you, and so many others dealing with state monoliths, shouldn’t have to do so but all too often that’s how our country works.

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    Mute Corina
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    Jan 3rd 2019, 4:38 PM

    @Graham: thank you.
    Yes, unfortunately the most ill people have to fight to have our voices heard, with inevitably result that it affects our health negatively.
    I wonder when the HSE will understand this and listen to our stories and collective knowledge.
    Thanks to Journal.ie for sharing my/our story.

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    Mute Gerry Ashe
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    Jan 2nd 2019, 9:31 PM

    A person very close to me has been given an apartment by the local authority is paying rent since September but is unable to move in as the HSE have not provided the Carers she needs. Why is there no joined up thinking in all of this and is it not possible for the various agencies to link up and talk to each other?

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    Mute Corina
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    Jan 3rd 2019, 4:40 PM

    @Gerry Ashe: the HSE has no idea how to join the dots. And can’t seem to work in tandem wit local authorities either.

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    Mute Aine Foley
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    Jan 2nd 2019, 10:31 PM

    It’s disgraceful that M.E is not recognised as a disability by the HSE. As an institution they really need to modernise their thinking. Too many innocent people are suffering because of ‘labels’.
    As for the writer, I truly hope you get the care you require. I know your group that you founded has given great advice and help to many who have needed it.

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    Mute Chemical Brothers
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    Jan 2nd 2019, 10:35 PM

    @Aine Foley: HSE are still informed by the debunked outcome of the PACE study in the UK and so are wedded to the “in yer head” diagnosis.

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    Mute Gulliver Foyle
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    Jan 2nd 2019, 11:56 PM

    @Aine Foley: no one is diagnosed by “labels”. doctors and non psychiatric consultants can only diagnose symptoms, and not an overall syndrome, unless there is evidence of treating one part or another. doctors can only diagnosed a disability if the patient has a chronic debilitating symptom (i.e. broken nerves, missing limbs, tachochardia, muscle wastage), not because of labels. in all instances, these individual symptoms may allow long term sick leave from employment, but there is no injustice that they are entitled to the same full time carers that (i.e.) MS sufferers need. There is no discredited reports into POTS, ME, fibromyalgia, because outside of DSM, they are not recognised by the general medical community.

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    Mute Chemical Brothers
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    Jan 3rd 2019, 8:52 AM

    @Gulliver Foyle: Interesting that you mention MS. In the 1950s this was known as Hysterical Paralysis an “in your head” diagnosis at the time. ME has in the past gone by the even more cruel moniker of “Yuppie Flu”.

    Medical science not far away from kicking shrinks off the CFS/ME playing field. It is likely an immunological / haematological disorder…wait & see.

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    Mute Chemical Brothers
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    Jan 2nd 2019, 9:33 PM

    After the disgraceful PACE study concluded that CFS/ME was a “psychiatric” illness and that GET & CBT would resolve episodes, the genuine medical investigation of this illness ceased for a number of years.

    Now, a decade later, it has becoming apparent that CFS/ME most likely has an immunological basis.

    We have scores of serving & ex Air Corps personnel suffering anxiety, depression, CFS, insomnia, cognitive disfunction & many other symptoms. Evidence is mounting too amongst Air Corps survivors of an inflammatory immune system root cause triggered by toxic chemical exposure.

    As a cluster for scientists to investigate we will be invaluable and the public health dividend for those suffering inflammatory based illness will be unprecedented.

    Watch this space.

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    Mute Gerry_manning
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    Jan 3rd 2019, 1:03 PM

    I am sorry the author feels the way she does and I am not commenting on her personally but I have met a few “M.E and fibromyalgia sufferers” in the past and I was not convinced. There is certain amount of self diagnosis that goes on with these “conditions”. I prefer to leave the diagnosing to real doctors not web md.

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    Mute Graham
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    Jan 3rd 2019, 3:09 PM

    @Gerry_manning: entitled to your doubt, however misplaced, just as i’m entitled to doubt the motives of a new poster whose Twitter doesnt exist.

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    Mute stephen quilty
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    Jan 3rd 2019, 4:13 PM

    @Gerry_manning: Gerry please refrain from commenting on something you have very little understanding of. Some people have it mild and can work but have to rest a lot more than the normal person when they get home and also weekends. Others are housebound and can’t work or socialise. Then there are those that are severely affected like the author (and myself). I relapsed 3 years ago and couldn’t talk or walk. I started out as mild and used to get the same ignorant comments that you just made above people calling me lazy etc. If only you knew the hell that we go through. You’ve no idea, absolutely none. So please stop judging others. These “conditions” have ruined my life. 5 years and counting. Have a good day.

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    Mute Gerry_manning
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    Jan 3rd 2019, 4:35 PM

    @stephen quilty: I am not convinced because my experience with ME and fibromyalgia “sufferers” in my work capacity has revelled them not to be genuine but faking illness and claiming not being able to work, and then found to be working away just fine. As there is no real proof of these “illnesses” I commented honestly from my point of view.

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    Mute Gerry_manning
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    Jan 3rd 2019, 4:42 PM

    @Graham: just an honest opinion graham based on my experience. no hidden motives.

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    Mute Graham
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    Jan 3rd 2019, 4:42 PM

    @Gerry_manning: so your anecdotal experience is a universal truth?

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    Mute Maria Harte
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    Jan 3rd 2019, 5:06 PM

    @Gerry_manning: So if someone commits fraud by pretending to have a bad back, then everyone with a bad back must be faking? I was dragged through the mill by my employer’s HR dept & Health Insurance’s biased doctor – disbelieved, doubted & cut off from insurance payments when I became ill 2 decades ago. My health has deteriorated in a similar way to Corina’s due to ME. Scientific research is close to a diagnostic test for ME, but unfortunately, until then, we are subject to the scrutiny of the averagely layman such as yourself.

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    Mute Gerry_manning
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    Jan 3rd 2019, 5:21 PM

    @Maria Harte: As you say there is not even a diagnostic test available. ME cannot be proved, insurers cannot be expected to pay out for illnesses that are not diagnosed or recognised by the medical community just on a persons word. If ME becomes diagnosable by doctors then I will believe it, until then I am not convinced.

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    Mute Maria Harte
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    Jan 3rd 2019, 6:22 PM

    @Gerry_manning: Gerry, ME IS recognised by the medical community. The world health organisation (WHO) classifies it as a neurological illness ( just like MS, Parkinson’s disease, etc). Biomedical research has found abnormalities all over the body in people with ME (and fibromyalgia) – mitochondrial dysfunction, severe immune dysfunction, endocrine system dysfunction … I could go on for ages. And ME CAN be diagnosed – using the Canadian Consensus Criteria document https://sacfs.asn.au/download/consensus_overview_me_cfs.pdf (which the Irish ME/CFS Association recently sent to all GPs in Ireland). So unfortunately you don’t seem to have all the facts.

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    Mute Corina
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    Jan 3rd 2019, 6:45 PM

    @Gerry_manning: ill way before the arrival of web-doctor.

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    Mute Chemical Brothers
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    Jan 3rd 2019, 8:23 PM

    @Gerry_manning: Different disease as an example.

    Do you know how long AIDS was around before it was defined? Clinically observed in 1981,figured out & named 1986. Subsequently it is now considered that the earliest documented case goes back as far as 1956 with some suggesting the disease may have jumped species/evolved from SIV in 1910.

    So question for you, did people who suffered AIDS from 1956 to 1986 actually have AIDS? By your logic, until the medical community could diagnose & recognise it, it obviously didn’t exist???

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    Mute EillieEs
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    Jan 3rd 2019, 8:24 PM

    @Gerry_manning: Harvard Medical School mustn’t be aware of your anecdotal evidence. “Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is a complicated illness…
    Testing has found that people with chronic fatigue syndrome have abnormalities in the brain, particularly in the hypothalamus (a part of the brain that regulates hormones and vital functions) and the pituitary gland. Testing also has found that patients have abnormalities in the part of the nervous system called the autonomic nervous system, which controls blood pressure, heart rate, body temperature and other vital body functions. For example, many patients with chronic fatigue syndrome have an unusually high heart rate and low blood pressure when they have been standing for a while.”

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    Mute EillieEs
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    Jan 3rd 2019, 8:27 PM
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    Mute Aisling Kenny
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    Jan 5th 2019, 9:03 PM

    @Gerry_manning: Many people with fibromyalgia, cfs, comorbid chronic fatigue and chronic pain do “seem fine” sometimes. The very nature of many of these conditions means they fluctuate a lot and are not predictable by the sufferer. For instance I would be able to ‘work away’ fine some days but be unable to move off the couch with pain on others. You see sufferers when we’re well enough to go out and do things, not so much when we are suffering badly at home. Please engage your brain and your capacity to empathise before you throw your judgement at people who are suffering more than enough already.

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    Mute Chemical Brothers
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    Jan 5th 2019, 10:30 PM

    @Aisling Kenny: Which adds to the difficulties in diagnosis. You need to present “sick” to have any hope catching critical clinical evidence in blood or urine .

    Too bad if this is after hours or at a weekend. When you need a blood test within 4 hours to “catch” aberrant mediator release you are “currently” out of luck in IRL.

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    Mute Ann Kennedy
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    Jan 3rd 2019, 12:30 AM

    hearth breaking story. All too familiar, I both understand the wide difference of care across many HSE sectors or CHO areas. ME is very badly considered. I also understand the stress, pain suffering and psychological torment, embroiled and battling on a daily basis with a complex HSE system, where there is not a lot of joined up thinking. My care has reversed back to levels of 2005 yet I am considerable more ill and disabled from a progressive neurodegenerative disease process. the chaos of our lives, means in essence it is not a life at all – its barely existence, its nothing. you are held in a vacumn of hope mixed with despair that one day it will all get a bit better – over ten years on, its not better for me. I now have ‘fall-out’ with a recognised dx of severe post traumatic stress disorder. anyone who fights for basic care for protracted time frames would have most likely the same medical recognised condition of PTSD, its a crime to inflict another condition on an already over burdened, body and mindset.

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    Mute David Coyne
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    Jan 2nd 2019, 11:02 PM

    What need you, being come to sense, 

    But fumble in a greasy till 

    And add the halfpence to the pence 

    And prayer to shivering prayer, until 

    You have dried the marrow from the bone; 

    For men were born to pray and save: 

    Romantic Ireland’s dead and gone, 

    It’s with O’Leary in the grave. 

    39
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    Mute Graham
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    Jan 2nd 2019, 10:17 PM

    Again journal why delete obnoxious comments like that from “Irish Protestant”? We’re well capable of putting trolls like that back in their box

    40
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    Mute John
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    Jan 3rd 2019, 9:25 AM

    @Graham: ME is fake news

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    Mute Graham
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    Jan 3rd 2019, 3:06 PM

    @John: so the author is just putting it on, yeah? Devastatingly altering her life just for the hell of it or a few quid?

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    Mute stephen quilty
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    Jan 3rd 2019, 4:04 PM

    @John: No John you’re fake news. Go troll somewhere else

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    Mute helen walsh
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    Jan 3rd 2019, 11:19 AM

    Is there an ME fund to help sufferers, I would contribute

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    Mute Corina
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    Jan 3rd 2019, 4:39 PM

    @helen walsh: that! brought me to tears. Thank you for your kind heart.

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    Mute Corina
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    Jan 3rd 2019, 5:11 PM

    Since the writing of this article my situation changed. I ended up being taken into Care at a local care Centre for the elderly.
    Kind staff. But of course a totally unsuitable location.
    If HSE followed through on their own statements of ‘increase homecare packages’, of ‘listening to the patients voices’, etc etc i would be living at home with adequate support.
    Not stuck in a much more expensive care facility.

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    Mute Margaret Kennedy
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    Jan 3rd 2019, 10:13 AM

    the fact Ireland allows sick people suffer endlessly and seriously is shameful . the government seems unwilling to change how the HSE does business. there is medical ignorance, professional incompetence, primary care chaos and more – yet the government believes all is well.

    when are sick and disabled people going to have their lives fully supported. this is a human rights issue. discrimination that leads to this sort of suffering has to be exposed, challenged and changed.

    the article is very painful to read. I wish I could do something to change things, but we need to act together. join forces, say “enough is enough”

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    Mute Margaret Kane
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    Jan 4th 2019, 9:38 PM

    That’s our wonderful government only cares about themselves

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    Mute Yellowriver
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    Jan 15th 2019, 4:59 PM

    Although not as ill as Corina, I am in a similar situation, almost housebound, unable to wash my hair and am not getting any government support in England; and I am 70 years old.

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    Mute Annette Hunter
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    Jan 11th 2019, 1:53 AM

    You are very brave to write this article and I am so saddened to read how your life is. Unless you have a visible illness there will always be the majority who tell you it’s in your head. Even some doctors think this. I would not wish this condition on anybody. Well that not true. Some of the people who wrote disgusting comments could do with living your life for one day. Then they might see what it is like for you.

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    Mute Corina
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    Jan 11th 2019, 6:22 AM

    @Annette Hunter: thank you.

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