PATIENTS SUFFERING FROM illnesses with debilitating symptoms such as chronic pain and fatigue have said they are still fighting to have their conditions recognised.

People Before Profit TD Gino Kenny hosted a presentation earlier this week in the Dail with speakers from fibromyalgia and Myalgic Encephalomyelitis (ME).

ME is a neurological disorder that affects multiple systems of the body and often follows an acute viral infection. Sufferers experience brain inflammation, headaches, bone and muscle pain, swollen lymph nodes, muscle spasms, seizures, vision abnormalities, bowel dysfunction and cardiovascular abnormalities.

There is no official data on prevalence in Ireland, but campaigners estimate there are 12,000 to 14,000 people living with ME in Ireland.

Fibromyalgia is a chronic pain condition with a broad spectrum of other symptoms including fatigue, cognitive dysfunction and reduced physical function.

Campaigners told TDs at the presentation that the HSE currently conflates ME and Chronic Fatigue Syndrome resulting in a misdiagnosis for many patients.

They also said some clinicians still hold the belief that ME is a psychological condition, though there is no scientific evidence to support that.

“I have had three consultants deny it as a diagnosis even though it is a World Health Organisation listed neurological disease,” Maire Dillon of ME Advocates Ireland told TheJournal.ie. “It means you have to do your own research, you have to go to maybe six or seven doctors to find someone who knows how to manage it.”

The UK’s health watchdog is currently reviewing its guidelines for treatment of ME but these will not be finalised until 2020. They said the HSE follows these guidelines and they are worried there will be a long wait ahead unless a review is conducted here, with the input of patients and relevant clinicians.

Treatment offered in Ireland includes cognitive behavioural and exercise therapies, but patients claim that when these do not work they are “left to their own devices”.

Rachel Lynch from FibroIreland said she was there to try to highlight serious gaps in treatment in care, both from a social welfare point of view and a healthcare point of view.

She described Fibromyalgia as an “invisible illness”.

“Apart from being a bit pasty, none of us here really look that sick.”

Lynch said the bulk of her time as an advocate is spent “chasing up social welfare” and counselling people who have had an appeal rejected.

“These people have medical records the length of your arm from their consultants. The worse case I heard was five years and six appeals. In that time they can’t access services,” she said.

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