News from Republic of Ireland

Sly Saint · Nov 10, 2021

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

@Tom Kindlon
@Brian Hughes

Art Vandelay · May 4, 2022

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?
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@Tom Kindlon

Hutan · May 16, 2022

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 · Jul 9, 2022

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 · Aug 21, 2022

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

Sly Saint · Aug 29, 2023

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.
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http://meadvocatesireland.blogspot.com/

SNT Gatchaman · Apr 18, 2024 at 12:59 AM

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."
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Members of Long Covid Advocacy Ireland (LCAI) told committee members that specialist clinics are not helping sufferers and they have been "neglected and dismissed".
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"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.
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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.
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Sean · Apr 18, 2024 at 8:58 AM

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 · Apr 18, 2024 at 7:36 AM

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.

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