News from Republic of Ireland

[Sly Saint]

we don't seem to have a thread for Ireland

Irish ME patients hope HSE will follow UK and scrap exercise therapy guidance

IRISH PATIENTS WITH Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) have said they are hopeful that the HSE will change its treatment guidance following fresh advice issued by a UK watchdog.

The new guidance addressed the use of exercise therapy programmes, which representatives have argued can worsen symptoms for patients, and cognitive behavioural therapy (CBT), which experts have said was being used as “a cure” rather than a support measure.

In recent weeks the UK’s National Institute for Health and Care Excellent (NICE) published updated guidelines on the diagnosis and management of ME/CFS. It stated that any programme based on fixed incremental increases in exercise, such as graded exercise therapy (GET), should not be offered.

The health standards body also issued fresh guidance on the use of cognitive behavioural therapy (CBT), stating that it has sometimes “been assumed to be a cure for ME/CFS”.

The new guidance recommends it should only be offered to support people who live with ME/CFS to “manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness”.

Speaking to TheJournal, Declan Carroll of the Irish ME Trust said the treatment guidance for ME/CFS in Ireland is similar to that of the UK and his organisation is hoping the HSE will now follow the UK’s lead.

“The current treatment approach of graded exercise and CBT is not one we would have supported as an organisation,” he said.

“The graded exercise programme was really to encourage people to push through the pain barrier in the same way as a marathon runner pushes through that 20 mile wall. That hasn’t served ME people well at all, they can relapse and suffer longterm problems because of it.

With any longterm chronic condition there is an understanding that people need to be limber and keep their muscles activated, but it shouldn’t be outside their control, they should be in control of it.

He pointed out that the NICE guidance includes ‘post-exertional malaise’ as a criteria for diagnosing ME.

“If that’s one of the criteria then graded exercise can’t be a good remedy in terms of treatment. They probably should have come to this conclusion before now.”

Carroll said representatives had been meeting with the HSE before Covid as part of a working group, but these meetings have not yet recommenced.

https://www.thejournal.ie/me-exercise-5590653-Nov2021/

@Tom Kindlon
@Brian Hughes

 

[Art Vandelay]

I'm not sure where this should go. The Irish Times is asking for peoples' experiences with gaslighting:

Share your story: Have you been ‘medically gaslit’?
We’d like to hear about your experiences of medical gaslighting - especially from women who, studies have shown, are more likely to have their symptoms brushed off, or their children’s illness explained away as over-anxious parenting.

Have you gone to a GP or specialist for help, only to feel ignored or condescended to? Did this have implications for your treatment and recovery?

@Tom Kindlon

 

[Hutan]

Predictors of Submaximal Exercise Test Attainment in Adults Reporting Long COVID Symptoms, 2022, Romero-Ortuno et al
A paper from an Irish group of researchers - researching CPET performance in people with Long Covid while seemingly being unaware of PEM and repeat CPETs. Looks as though they could use some help from people who are aware.

 

[Hutan]

Safety and efficacy of low dose naltrexone in a long covid cohort; an interventional pre-post study, 2022, O'Kelly et al
A small preliminary study of LDN by a group of Irish researchers:

Brendan O'Kelly ab
Louise Vidal b
Tina McHugh b
James Woo a
Gordana Avramovic b
John S.Lambert ab
a Infectious Diseases Department, Mater Misericordiae University Hospital, Dublin 7, Ireland
b School of Medicine, University College Dublin, Dublin 4, Ireland

They seem to be calling for a randomised controlled study of LDN in Long Covid. A large, well done study would be good, as there's a lot of noise about LDN in ME/CFS/Long Covid, but not a lot of light. It looks as though this group could use the help of one or more expert patients.

 

[Sly Saint]

Long Covid: Treatment of debilitating fatigue presents major challenge for Irish hospitals

CLINICIANS TREATING PATIENTS with Long Covid are facing a significant challenge when trying to address the debilitating fatigue that some are left with for months after their initial infection.

It is estimated that up to 20% of people who test positive for Covid-19 may experience longer-term symptoms ranging from weeks to months after their infection. Over 200 symptoms associated with Long Covid have been identified, but the most common are fatigue, respiratory and cardiac symptoms, neurological symptoms, muscular and joint pain and digestive symptoms.

The ‘invisible’ symptoms of Long Covid, such as fatigue and brain fog, can be the most frustrating, one patient told The Journal.

https://www.thejournal.ie/long-covid-fatigue-5844513-Aug2022/

 

[Sly Saint]

ME Advocates Ireland (MEAI)'s Position on Label (name) and Diagnostic Criteria (case definition)

Label

ME Advocates Ireland (MEAI) advocate for the adoption and use of the Myalgic Encephalomyelitis (ME) label. We do not recognize CFS as per Fukuda, ME/CFS as per the Canadian Consensus Criteria (CCC), or SEID (NAM) as an accurate diagnosis for ME and believe that the quagmire of the above mentioned criteria and other various criteria available worldwide has led to confusion, lack of healthcare and treatment, and lack of sufficient research on ME, however

• we acknowledge that people with ME or CFS in Ireland have been diagnosed with either the ME or CFS label or both, i.e. ME/CFS;

• we acknowledge that others in Ireland and elsewhere use the CFS and ME/CFS labels and we do not wish to withhold support from those who have been given a diagnosis of CFS, or ME/CFS;

• we appreciate that the CFS label is used to refer to ME in general in other countries but are unsure if those that are diagnosed with CFS are actually receiving appropriate treatment;

• we recognise that the CFS or ME/CFS label is used throughout international research but again are not sure what patients are being identified for research purposes and on what criteria their diagnosis is based;

• we acknowledge that conflated labels such as ME/CFS and CFS/ME are used by others though we do not use them, or advocate for their usage;

• we recognise that the CFS/ME label is mostly used by the psych cabal and associates who have caused so many issues around ME for decades;

• we recognise that it is critical that there is more biomedical research to further investigate and validate our understanding of ME and to increase knowledge of the different sub-groups of ME.

Diagnostic Criteria

ME Advocates Ireland (MEAI) believe that case definitions for clinical practice should

• be research based,

• validated and manageable to provide a tool which can relieve patient's uncertainty,

• indicate the most appropriate treatment and prevent adverse effects and waste of healthcare resources of unnecessary treatment and diagnostic procedures,

• be founded on available knowledge regarding the mechanisms of the actual condition,

• be validated through credible and transparent processes and presented in a format which can be implemented in everyday practice.

In the absence of HSE ME Guidelines it is our opinion that the International Consensus Criteria (ICC) and Primer (ICP) are the best current case definition and guidelines currently available.
ME Advocates Ireland (MEAI) advocate for the adoption and use of the International Consensus Critera (ICC) 2011 along with the follow up document, the International Consensus Primer (ICP) 2012 for diagnosis, testing, treatment and management suggestions. We think the ICC and the ICP are the best tools to assess and manage ME. More about these below.

http://meadvocatesireland.blogspot.com/

 

[SNT Gatchaman]

RTÉ News: 'Long Covid has destroyed my life' - Dublin triathlete

"I guess I was 30 or 31 when I developed long Covid," she told RTÉ News. "I was training three times a day and the goal was to compete nationally, maybe even internationally.

"But I can't train now. If I exercise, my heart goes through the roof. I'm bedridden for two to three weeks if I try to do a gentle walk."

Members of Long Covid Advocacy Ireland (LCAI) told committee members that specialist clinics are not helping sufferers and they have been "neglected and dismissed".

"My whole life has been destroyed. I'm stuck in this life, like we were in lockdown. I haven't left that life. I've lost friendships and relationships because I'm stuck in this world that I feel like I no longer exist in.

LCAI estimates that around 350,000 people in Ireland are affected by long Covid.

"I can't keep trying to have to prove to people that I'm still not better. I want to be better. But the clinics and treatments just aren't there to enable some people to get better," Ms Kelly said.

"It's like: 'You're not motivated' or 'you're lazy'. But I was the most self-motivated person ever, and I didn't need somebody to hold my hand, to look after my career, to push me to train. I want my life back, but I don't think it's possible if this Government keep ignoring it," she added.

 

[Sean]

but I don't think it's possible if this Government keep ignoring it," she added.

Sadly they have decades of practice at doing exactly that.

 

[Trish]

It concerns me that stories like this one focus on the lack of clinics and doctors helping people recover, when the reality at present is that all the clinics in the world have no clue how to make anyone recover. There is no cure except time and luck. Though people still need validation and support, and there may be symptomatic treatments that can help with some symptoms.

 

[rvallee]

It concerns me that stories like this one focus on the lack of clinics and doctors helping people recover, when the reality at present is that all the clinics in the world have no clue how to make anyone recover. There is no cure except time and luck. Though people still need validation and support, and there may be symptomatic treatments that can help with some symptoms.

Speaking of:

Long Covid clinics 'not helping', patients tell committee
https://www.rte.ie/news/ireland/2024/0417/1443945-long-covid/

Patients with long Covid have criticised the Health Service Executive's (HSE) response to their illness, saying that they have been "neglected and dismissed".

Long Covid Advocacy Ireland (LCAI) told the Oireachtas Committee on Health that specialist clinics are not helping sufferers.

"Unfortunately, the vast, vast majority of patients who contact us have had a negative experience with the clinics," LCAI co-founder Sarah O'Connell said.

One woman "waited nine months for an appointment" only to have "a 15-minute appointment with the doctor" who "quickly focused on cardiac and respiratory issues", she recounted.

She spoke of patients' "disappointment" over how consultants dealt with them.

Sufferers of long Covid know there is no "silver bullet", Ms O'Connell said, but added that it is unacceptable that they are "not being offered any help".

It would make a nice meme, to say having a disappointment at a LC/fatigue clinic rather than an appointment.

 

[Sly Saint]

Longford energy healer found guilty of sexually assaulting a client

A Longford energy healer has been found guilty of sexually assaulting a client by making her place her hands on his groin and breathe heavily, repeating “oh my god” in her head, while moaning and staring into his eyes to “clear sexual blockages” from past sexual abuse.

David Reilly (50) of 70 Springlawn, Longford, appeared before Longford Circuit Court over the past week, where he was tried in front of Judge Kenneth Connolly and a jury of 12 people and found guilty of one count of sexual assault and one count of offensive conduct of a sexual nature in August and September of 2021.

The injured party told prosecution barrister Shane Geraghty and the jury that, in 2020, she was diagnosed with Myalgic Encephalomyelitis (ME), more commonly known as Chronic Fatigue Syndrome, and that she had attended Mr Reilly’s practice on the recommendation of a friend.

She attended two appointments with Mr Reilly at Energy Healing Ireland in August of 2021 and said she found the healing helpful and that she was more energetic afterwards.

After her second session, while she had her daughter with her, she said Mr Reilly leaned down to whisper in her ear and asked if she’d ever been “taken advantage of” in the past.

“I said yes. He said he could fix that, but I’d need to come again and come alone. He said I had sexual blockages and that I’d need to come back and clear them through heavy breathing techniques,” she said.

The woman booked a third appointment and attended Energy Healing Ireland on September 2, 2021, on her own.

Longford energy healer found guilty of sexually assaulting a client - Longford Live (longfordleader.ie)

 

[Chandelier]

Cork nurses with long covid facing pay cuts in December

The Department of Health and HSE has confirmed that the final extension of the temporary Long Covid scheme will expire on December 31.

www.echolive.ie

Cork nurses with long COVID face pay cuts from January 2026

A group of nurses in Cork, Ireland, suffering from long COVID have raised concerns about upcoming pay cuts, as the temporary Long COVID payment scheme is set to end on December 31, 2025. These nurses, along with the Irish Nurses and Midwives Organisation (INMO) and local politicians, are calling on the government to formally recognise long COVID as an occupational disease to ensure continued financial support.

Currently, over 120 healthcare workers benefit from this temporary scheme. Once it ends, they will be moved to the standard Public Service Sick Leave Scheme. Under these terms, a nurse earning €50,949 annually will be reduced to half pay by April 1, 2026, and will eventually move to Illness Benefit of just €12,974 per year.

The INMO has emphasized that the majority of the 159 affected workers are women, many of whom are managing mortgages, medical expenses, and costs related to ongoing treatment. Despite repeated appeals, the Irish government has not officially acknowledged long COVID as a workplace injury, even though the European Commission has advised member states to do so.

Social Democrat TD Liam Quaide spoke in support of the nurses, recalling how healthcare workers were publicly applauded in 2020 during the early stages of the pandemic. He said that praise now feels hollow for those infected in high-risk environments, often without proper PPE or access to vaccines at the time. Many have developed chronic, life-altering symptoms such as post-exertional fatigue, brain fog, vertigo, and nerve pain, which have made returning to work impossible.

Treatments for long COVID remain limited, mostly focusing on symptom management rather than recovery. Quaide criticized the government’s handling of the situation, noting that affected staff have had to fight for temporary financial support through the Labour Court every six to twelve months. This recurring uncertainty has led to prolonged stress and financial instability for those affected.

The current extension of the scheme, granted in June 2025, will expire at the end of December, with no indication of further renewals. Workers and their representatives are urging the government to classify long COVID as an occupational illness, which would allow affected healthcare staff to maintain financial stability after years of service and personal sacrifice.

 

[Peter T]

The Cork nurses’ plight has my sympathy, I remember the ordeal of those years when I was not well enough to work but not yet psychologically ready to go for ill health retirement. Any financial support provides an important bridge that may enable some to eventually return to work, even if only on reduced hours, or give others more time to accept the loss of their career.

 

[Evergreen]

Currently, over 120 healthcare workers benefit from this temporary scheme. Once it ends, they will be moved to the standard Public Service Sick Leave Scheme. Under these terms, a nurse earning €50,949 annually will be reduced to half pay by April 1, 2026, and will eventually move to Illness Benefit of just €12,974 per year.

If they cannot work at all and have enough years of service (can be as few as 5 years), they will also qualify for a pension from their place of work. If they don't have enough years, they may be offered a lump sum.

But the process of ill-health retirement can be brutal, and the circumstances under which they got their triggering illness were so very tough. My heart goes out to them.

I wonder how many will attempt to go back to work, at least part-time.

 

[Braganca]

I think the bigger problem in Ireland (for everyone including these nurses and pre Covid ME) is that the illness benefit is so low and not a livable amount. It should be at least double the current amount for people to live on, and maybe tied to wages the way the US disability insurance benefits are.

 

[Yann04]

maybe tied to wages the way the US disability insurance benefits are.

I think that’s an unfair system tbh. It keeps those of us who had low paying jobs or were disabled before being old enough to work in strong poverty and obscures the problem to the eyes of others because those who had a good salary (and probably had savings), get livable disability income.

 

[Braganca]

I think that’s an unfair system tbh. It keeps those of us who had low paying jobs or were disabled before being old enough to work in strong poverty and obscures the problem to the eyes of others because those who had a good salary (and probably had savings), get livable disability income.

Yes that’s a fair point. But, I think there is SSI for people who haven’t paid into SSDI so is a different system, is that correct? I agree that it is far too low and punitive. It should be reformed and fairer and higher. But if you’ve paid into an insurance policy like SSDI it makes sense that you get back proportionally what you’ve put in.

 

[Yann04]

I don’t think it’s ethical to allow high salaries for people who earnt a lot and probably have savings while many who werent so fortunate are literally going hungry.

In the US I think you’re right SSI and SSDI are nominally different.

I think in many other countries its the same system just you get the lowest rate as someone who became disabled young. Atleast here in switzerland its like that. Which I find highly unethical given the lowest rate is barely enough to pay rent, let alone buy food and everything else.

I don’t see why insurance should be on an “as paid” basis. I think “as need” is more fair. (Tho I guess this is different in countries with voluntary contributions, is that the case in the US?).

 

[Braganca]

Basically most countries have govt funded benefits that are means tested (would be called “welfare” in the US). Then there is an insurance you pay into as a worker like SSDI or Illness benefit in Ireland. In the US SSDI is a lot higher amount than SSI, but with SSI you could also apply for housing benefits. But in Ireland I believe the insurance funded Illness benefit is the same approx amount as the welfare equivalent (disability benefit). I agree with you that the people receiving the lowest amount from either should be on a livable benefit. But if you are making a higher salary, you’re probably in a large city and it’s a higher cost of living area. So in that respect it makes sense to match to salary, although realistically you cannot live in a large US city on SSDI regardless.

 

[Kitty]

€12,974 a year is really generous compared to what you get in the UK! Ours is £6,175 per year, so less than half that. If I'd had the £ equivalent of the Irish rate of sick pay, I could have managed instead of getting into hideous debt when I had to give up work.

Also, most people here don't have occupational pension schemes that offer ill-health retirement. You can retire, sure, but you don't actually get any money. The pension pot you have for retirement depends on how much you paid in, so if you have to stop early in your career, it's barely enough to cover a couple of household bills.