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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.
“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;
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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I think we all know what to expect,the ordinary working joe soap will get hit hard
@Pete mc pete: What part of the article above prompted your comment?
@Mick Hyland: the what can we expect from the budget part
@Pete mc pete: you do know how much wealthy people get taxed? Yes there are bad people out there that find loopholes etc, just like there are ordinary Joe soaps who give up their jobs to sell drugs or buy stolen gear off the back of vans. Every tries to get a little extra, but make no mistake. The rich pay a substantial amount of tax
@Michael Bodycoach: those two things aren’t equate able and one does decidedly more damage than the other
@Pete mc pete: yep always the same
@Mick Hyland: No wealth tax.
1 million a day improving cycling and walking infrastructure, 365 million a year!!! Priorities are all wrong ffs, what’s going on.
@Kevin O’Brien: That’s what happens when you elect people like Sleepy Ryan, Happy Varadkar and Dopey Martin. Along with Sneezy Donnelly , Grumpy Coveney and Bashful Mc Entee you couldn’t pick a more dysfunctional lot.
@Nosmo King: Where does Snow White come into all this?
@Kevin O’Brien: she doesn’t, she just gets shafted like the rest of us….
:-)
@Kevin O’Brien: brilliant to see. Increased health of people will reduce spend in hospitals, additional tourism as shown by greenways, less traffic on roads, less emmisons etc etc.
@Kevin O’Brien: short sighted thinking
@Kevin O’Brien: You mean their priorities don’t match yours. Thank goodness for that
@Kevin O’Brien: the spend makes sense.
More people walking and cycling to work means less use of public transport. 8t also means less traffic on the road which upsets many think skin motorists.
More people walking and cycling means better fitness, which means less HSE spend.
Long term its good use of money!
@Kevin O’Brien. but they can’t afford to give pensioners a 5 euro increase, that 365 million could be better spent I
on public transport there by encouraging more people to leave their cars at home….
@Barry: more people walking and cycling to and from work etc equals more people catching cold etc, Ireland is a cold damp country not warm and sunny as the greens seem to think, in the city’s you will see a lot of cycling and walking mainly because the public transport is so bad but you will only get that in summer when it’s not raining
@Dave Harris: a point of interest how do you get to these greenways do you drive to the nearest car park and then start your leisurely stroll through the countryside and then walk back to your car and drive 10 20 etc kilometres home again ? very few people live anywhere near the greenways so in this utopian world the greens live in how does the average joe/jane get to the greenway lugging all his wet gear and hiking boots with him/her….
@Nosmo King: Amen to that
@Kevin O’Brien: well it taking about a year SO FAR to upgrade the UCD cycle lane and cut off the left merge off fosters ave – so that is what your million a day is going toward
If they increase petrol and diesel cause of the greens they are finished.
@Jim O Brien Tech: with or without the greens it was going to increase.
@Barry: at 40 dollars a barrel an all time low the increase is merely a money making exercise
The biggest swindle of all followed by motor tax tariff when paid by the quarter
Just give the politicians a rise and dont worry about the peasants, we have got used to eating cake from Lidl.
@Paul Mc: That obscure Lidl brand beer isn’t going to drink itself!
No detail on carbon taxes…? What is to be expected….? Come on Journal, you’ve been paid well enough for this kite flying exercise at the late hours of a Friday night before the budget to at least afford the late on-lookers a glimpse of their impending doom.
As a full time family carer on €219 per week having no way of earning extra cash to make up the shortfall of over €400 a month to care for my special need s son. We are not entitled to the fuel allowance, even though we have to keep the heat on all day to keep the person warm, my oil bill is over €2,000 per year. I have to go without food, no new clothes, no cups of coffee out, no out at all really so we don’t have a problem keeping social distance. We live in the middle of nowhere that’s where the council has us living we need a car as there is no public transport and my son cannot walk more than a couple of yards. So much for inclusion its a constant exclusion and we’ve been abandoned by the state for years and especially this year in 2020. If they don’t give the christmas bonus it’ll be another slap in the face as I use the money toward a few bit for my son and oil to heat the house during January, February and march. I live in fear of having to give my son over to the state to care for as I can see myself being able to continue. It cost the state over €2,000 per week to keep a person in residential care doesn’t make any sense.
As a full time carer of a family member I am dreading this budget. Already services for carers are non existent since March. No visit from a public health nurse since January. Carers of vulnerable people have been abandoned. The Euthanasia bill was no surprise.
@Teresa O’Halloran: Why did the Dying with Dignity bill not surprise you exactly?
@Teresa O’Halloran: Likewise. I’m one of the fortunate carers with a nice home and family around me. However, no service support since March. I’ve been on duty 24/7 for 7 months. Family carers save the economy billions and prop up failing health services, even before the pandemic. Now more than ever. It’s time to recognise that contribution to society, not belittle family carers as glorified unemployed or just ignore them altogether.
Been here 6 years. Always believe that paying taxes is important but, having lived in four countries in my life i can honestly state Ireland is by far the worst for squeezing middle income earners. By some way.
The blinkered brigade will no doubt chastise me but, the reality here in Ireland the middle income earners (especially non Irish passport holders) pay a boatload of taxes and in return get literally zero. No health(can’t even get the dental polish!), chronically underfunded police, shocking public transport outside of Dublin City, terrible housing scenario not rental and ownership.
Pensioners got no 5e increase last year
@Thomas Linehan: Correct, do they think, loss of memory is kicking in
@Thomas Linehan: looks like the same again.
I don’t see any mention of the pension age?
With less jobs out there, it might be the time to look at allowing the option of people retiring at 65, but only if they want to.
Also both FF and FG lost tens of thousands of votes to SF on this issue.
Were an election to occur in the morning the same would happen again.
@sean de paore:
People in France retire at 62 on full state pension to free up jobs
Return the Pension to 65 please
Or face the wrath of the grey vote….
The money will come from whoever is working ,where else can it come from or a increase in profits from companies cigs and fuel
There won’t be many shocks. The next will be rough and the next one after that. Mehole Martin and creative thinking to close the massive deficit while not shafting people…… Hmmmm….. Is he about to legalise and tax Marajuana? I can just see him and Leo discussing it down the garden shed having a smoke. Lol
Raising the minimum wage by 10c and here I read they will be tweaking the USC bands. I only suggested to a colleague in work the other day that this would happen, they really must believe people are I-diots . I wonder which tax band will be tweaked?
Please let this pandemic end, so that there can be another election and these shiesters and charlatans can be shown the door.
My suggestion,,, give the job of running this country to the likes of the Goodmans and O’Learys etc sure they seem far more qualified and fit for purpose than the gaumbiens trying to do it now,,,,,, rant over
Who voted for this government…….you get what you wish for
Pension age increase quietly buried . . .
We can expect more misery/bad news/doom and gloom…is there no end to it ffs.
You will find that most of the promises that were made will not be honoured.
Better get the lube ready. This is going to be sore lol.
@Ciaran Farrelly: Tax is going up on that. No fun allowed
No mention of family carers there. One group that has been absolutely neglected during the pandemic worse than any other. Expected to pick up the pieces of absent support services and prop up the health service. Over 300,000 family carers in Ireland. Many of them underage or unpaid. 55% were working before becoming family carers and 23% are on reduced hours while also caring. 70% of family carers are struggling to make ends meet. I wonder if people on pup would accept a clap instead of actual support.
To be s@&wed that’s you can expect. True story.
Comedian’s calling for ‘additional support’, they’re having a laugh, aren’t they.
The State are losing millions if not billions to the black economy. The amount of trades persons & personal services who expect to be paid in cash is widespread. ie avoiding Income Tax, VAT, and USC. (no fan of these, but system has to be equitable)
The State has done nothing to curb this like setting up some kind of registration system?. Its the same as it was 20 years ago…. Meanwhile PAYE workers are hammered for all the usual deductions at source.
No increase to USC charges but they will charge the bands which actually means we are all going to be paying more USC next year so there will be an increase in USC creative thinking alright try to pull the wool hijos de putas
The PUP should be re-instated to €350 per week.
What is the alternative Budget plans for Level 4& Level 5?
What is the alternative Budget plans for a hard Brexit?
What is the alternative Budget plans for either Level 4 or Level 5 + a hard Brexit?
No 5 euro for pensioners not living alone
They are losing millions if not billions to the black economy. The amount of tradespeople who expect to be paid in cash is widespread. ie avoiding Income Tax, VAT, and USC. The State has done nothing to curb this like setting up some registration system. Meanwhile PAYE workers are hammered for all the usual deductions at source.
Retrofitting homes for energy efficiency…good kuck with that. I called a company who does that and they said they don’t do apartments but houses only. So if you live in a apartment which was substandard 25 years ago you have to live with higher heating costs or buy some warm clothes
have your say