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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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“Hopefully the HSE will take the opportunity when everyone is allowed to get back to work to reinvigorate the group and along with the guidelines something can be pushed through,” he said.
The new NICE guidance identifies the symptoms of ME/CFS as;
debilitating fatigue that is worsened by activity;
post-exertional malaise;
unrefreshing sleep or sleep disturbance;
cognitive difficulties (‘brain fog’).
It stated that people with all four symptoms that have lasted three months or more should be directed to a ME/CFS specialist team experienced and trained in the management of ME/CFS to confirm their diagnosis and develop a holistic personalised management plan in line with this guideline.
NICE recommended that any physical activity or exercise programmes should only be considered for people with ME/CFS in specific circumstances and should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms.
It also advised that a physical activity or exercise programme should only be offered on the basis that it is delivered or overseen by a physiotherapist in an ME/CFS specialist team and is regularly reviewed.
In response to a query from The Journal, the HSE did not clarify whether it plans to review the current approach to treatment of ME/CFS following on from the UK guidance.
It said the condition has long been recognised, although its definition has changed over time, “with lack of a scientific aetiology and the underlying cause is unknown”.
“To date, there is no known specific medical diagnostic test to determine or confirm a correct diagnosis of Myalgic Encephalomyelitis (ME) nor is there any specific treatment which works for all sufferers.”
The HSE said assessments tailored to individual patient needs can be carried out by GPs, with specialise input where required.
“Treatment for ME is initiated based on the individual’s symptoms. In general, these treatments are delivered within the context of primary care, with referrals into secondary care for specialist interventions,” it said.
Treatments relate to individual patient’s needs, ranging from, for example, neurology, rheumatology, psychology, pain specialists, endocrinology, immunology, cardiology, rehabilitation medicine or occupational therapy.
“These services are generally accessed through out-patient clinics at secondary care level by the relevant speciality. Currently, the GP is best placed to refer patients as appropriate.”
The HSE noted that there is currently no one centre specialising in this disorder.
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People seem to be taking this pay claim personally. Unlike comparisons being made in this comments section, this is no longer a state company or a semi state, it has long been privatised. I would imagine any potential increase to fares would be minimal and likely only a few euros. What concerns me more is how the management team seem to be running the place to the ground with zero repercussions to their jobs and pay. There is no consideration to their staff, or to us, their passengers. The focus of the management is purely to get the most money out of us and then move on to their next airline and exploit staff and passengers there.
@Terry Molloy: Think you need some fresh air.. the majority of people can digest more than one story!!! As for “Takes the heat off” .. that comment just shows you come with an agenda.
@Tom Kelly: Not really Tom, but don’t you think people deserve a holiday after all that has happened in the last few years and some have saved for a few years for a holiday, but this smoke screen doesn’t hide other major problems in this country…just and observation that all
@Jen McC: Well, I’m for immigration, my partner is not Irish born, but is an Irish citizen now. But the stats are over: 136k refugees in Ireland (104 – Ukrainian, 32 – not Ukrainian). Of the non-ukrainian (32k), 20k of those have arrived so far in 2024. Links will be below. Of a population of approx. 5.2 million, a total of 1.15 million are foreign born (I.e. 1/5 of the population. Links in next comment due to max word amount.
@Lydia Mcloughlin: ialpa pilots were 100% less productive on Saturday morning than they were a year ago…their wages should be cut
Easy to make stats suit any argument
Mute another one? what's going on is the semi state sec
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Jul 1st 2024, 8:22 AM
@Lydia Mcloughlin: lockdown was 2020 and 2021. 2022 was a busy year for the airline. Dublin airport had 28.1 million passengers in 2022. Similar to 2016/17…… Last year was similar to 2019
@another one? what’s going on is the semi state sec:
firstly dublin Airport and aer lingus are different companies
Also alot of debt from2020 and 2021 would have been written off in 2022
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Jul 1st 2024, 8:45 AM
@hi from heaven: Firstly, all of Aerlingus passenger in Dublin are counted in Dublin airport figures because guess what? They use Dublin airport to get on Aerlingus planes don’t they!!!…..it’s to give an indication of how travel bounced back.
@Daniel Sullivan: And that coincided with what exactly? The industry as a whole lost 168 billion in 2020 alone.. its very important to contextualise things don’t you think.. And AL pilot’s suffered a 50% pay reduction for long periods during the years you mention .. Again context is key.
@Chris Wilson: no, aer lingus pilots are a disgrace…
Every time people get wages and payouts (rte executives and charity top brass members)of 200k and above it just makes the rest of us poorer..
After buying the 750k house and two 100k cars , what else do these people do with the money..at 45 these people have money to burn and buy 2nd and 3rd houses for renting out which inflates the cost of houses for people who earn a good salary of 60000 euro…
@hi from heaven: I hope that is an attempt at humour, if its not then it is probably the most ignorant economic analysis I’ve ever seen and I’ve seen some doozies.
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Jul 1st 2024, 8:30 AM
@hi from heaven: Around half of their salary is tax so it supports the state. 200k is around 98.5k after deductions…… Should people not be paid big money for big important jobs?!?! These lads earn it….. Cost of living is 20%+, this increase would add about €4.50 to a fare based on last year’s passenger numbers and EI would maintain the same profit. That’s a 6.5% increase on a €70 fare.
@hi from heaven: So I take it you have never asked for a pay rise? You wouldn’t want others to get poorer just so you could have a few extra euros would you?
@another one? what’s going on is the semi state sec: Your numbers are all off. They might be right if you are talking about the last 200k of their salary assuming the rest is above the top tax rate already and they didn’t hive any of it off to pensions. Also a 6.5% ticket price increase just to fund pilot salary rises? What about the rest of the staff?
@another one? what’s going on is the semi state sec:
98.5k didn’t realise aer lingus was not allowing them to avail of the 20% tax rate up to 42k or their tax free allowance of 3750 or equivalent depending on their marital status
@Chris Wilson: we were due back from Turkey Saturday, got to airport , flight cancelled , flocked to a manky hotel by the Turkish airport staff. Not one email or message from AL, got the toddler to bed maybe midnight, couldn’t sleep as didn’t know when we needed to be back airport. Flight was 2pm next day, this was delayed an hour and half, got in the plane and pilot tells us we don’t have enough fuel to get to Dublin so we had to stop in Rome to re fuel , an hour and half on the ground there. 7 hours in total on the flight. Pilot bad mouthing aer lingus the whole way saying when he left Dublin sat he knew he wasn’t returning that day but Al never told yous or the cabin crew. And the only reason they left Dublin late is AL de crewed the flight for no reason and had to re crew.
@hi from heaven: You could always invest in flight school or extra education for the other positions you’ve mentioned and earn this kind of pay if you feel you’re getting poorer.
@Chaotic State: Should singers be paid less than our leaders for singing a song? Should football players be paid less than our leaders for kicking a ball around for 90 mins? Where do you draw the line at who gets paid more than our leaders?
Aer Shambles & their ransomers need to read the room nationally. Neither side has a bucket load of sympathy for either cause. We want what you’ve already marketed, taken money for and issued booking references. Lets give you both the benefit of saying it again YOUR INTERNAL BUSINESS OPERATIONS ARE NONE OF OUR BUSINESS, we paid, our job is to sort our liquids & gels, be at the gate on time and obey the fasten seatbelt sign. Both parties go act like professionals today, get the job done or just lock the gate permanently.
@Éanna o Sca: that’s not how unions work, if AL succeeds at union busting it will set a precedent, and future pilots will refuse to work there which will lead to AL’s demise and goodbye to our “national airline” which was sold off by the government
@David Fox: A glorified bus? You could literally jump in a bus driver’s seat right now and drive the bus without any training, jump in pilots seat and try to fly a plane without training and see how you get on.
@Ger Whelan: the lads that flew the planes in 9-11 got on okay. You also need training and a different licence for a bus. You are obviously one of them pilots that think they are above everyone. Must be great up on that pedestal while hard working people miss out on holidays. Will never fly aer Lingus again, in fact hope they go bust and see them pilots rocking up to the dole queue in their fancy cars.
@orb7eckn: this is a very insensitive comment. I can’t believe you would bring that up or that you were even able to post such a comment. Anyway since you did, a bit of further research by yourself will show that they undertook pilot training.
@KB: I know they did along with Microsoft flight simulator. They make it expensive to restrict access, it’s like a private school mentality. No sympathy for the silver spoon brigade
@orb7eckn: could the hijackers have carried out their plans with the time they spent on training simulators?. So thanks for proving you need training to fly a plane.
@orb7eckn: any worker deserves a pay increase year on year to ensure that their pay affords them the same purchasing power when taking inflation into account. That is what is happening here. The silver spoon brigade you speak of are the ones in management hiding behind a poorly spoken and ill advised corporate affairs person. They have failed to provide enough staff and taken our money for bookings that they can’t accommodate. They have had two years to resolve this situation and have failed and there is no accountability. I can’t stand people commanding c level salaries when they can’t do their jobs. CEO, CFO and Donal the mouthpiece took home €2.8 mill between them in 2022 and this is what they have to show for it!
@orb7eckn: Didn’t the “lads” on 9/11 crash the planes? Anyone can crash a plane, you try landing one in a strong gale force crosswind and let me know how you get on.
Somebody’s been telling porkies, apparently the company has offered 12.25%, and more for increased productivity (Aer Lingus pilots fly less hours than Ryanair’s/ less hours than the maximum permitted) and yet Mark Tighe says the company “would not compromise at all”.
@Pat Barry: In fairness, they’re calling it an increase now? When they all took pay cuts during lockdown, was that a decrease? Seems like fair pay restoration to me.
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