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;

• 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.