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".
"There is a lot that can be done in terms of symptom management," she told the committee, but to get this "they're having to go privately and spend a lot of money".
The organisation wants long Covid to be recognised as an occupational illness.
Around 350,000 affected in Ireland
Long Covid is defined by the World Health Organization (WHO) as the continuation or development of new symptoms three months after the initial Covid-19 infection, with these symptoms lasting for at least two months with no other explanation.
The WHO says that "more than 17 million people" in Europe "may have experienced [long Covid] during the first two years of the pandemic".
LCAI estimates that around 350,000 people in Ireland are affected to some extent by the complex, multi-system disease.
The HSE has established eight post-acute Covid clinics, along with six long Covid clinics, across the country.
"Defining long Covid as a single disease entity is challenging, because we don't at the moment why people who have long Covid get it," Dr Brian Kent, a HSE consultant respiratory physician, told the committee.
The roughly 200 symptoms include exhaustion, muscle and joint pain and cognitive dysfunction.
Many referrals to the clinics are prompted by specific respiratory diagnoses, most commonly asthma and obstructive sleep apnoea, the HSE has said.
Consultants directly tackle these issues because "it's really important to us that these people get better," Dr Kent said.
But he emphasised that this does not mean that medics are in "any way, shape or form, casting aspersions on the validity of the person's symptoms".
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Health workers' support scheme extended
The committee also heard calls for the establishment of specialised long Covid services for children.
HSE National Clinical Director for Integrated Care Dr Siobhán Ní Bhriain said that parents who are unhappy with an assessment should "seek a second one".
"And certainly to back to their GP as well," she added.
She was responding to Independent Senator Frances Black, who noted parents' concerns that some consultants "really don't have the knowledge because they haven't been trained up" in how to diagnose long Covid.
The committee also heard from the Director of the HSE's Workplace Health and Wellbeing Unit Grant Jeffrey, who said that the number of HSE staff with long Covid is 120 Whole Time Equivalent.
Yesterday, Taoiseach Simon Harris revealed that the support scheme for healthcare workers with long Covid is being extended for a further three months.
The Special Scheme of Paid Leave allows health workers with long Covid to remain on full pay.
Urging that more data be collected to increase our understanding of long Covid, TD Róisín Shortall, the Social Democrats Spokesperson on Health, said that what gets measured, gets managed.
