It's all about ME

Myalgic Encephalomyelitis or ME or Chronic Fatigue Syndrome (CFS) is a life-altering and debilitating disease.

It affects the brain, the immune system and energy metabolism, and yet, according to Buncrana mum, Louise Lyons, ME still has a stigma attached to it.

“People think ME is just feeling tired and sleep or rest will help,” said Louise, “People say, 'I'm always tired too!'”

Louise, whose daughter, Cassie, has been diagnosed with moderate ME, is at pains to point out, ME is “not feeling tired”.

She said: “ME is a chronic neurological multi-system disease, which can range from mild to severe. The cardinal symptom of ME is Post-Exertional Malaise (PEM) or the worsening of symptoms after minimal physical or mental exertion.

“While in most diseases, patients experience symptom relief after exercise, the opposite is true for ME patients. This is known as 'a crash' and can last for days, months or years.”

According to Linda Tannenbaum, CEO of Medicine Foundation, ME is a life altering and debilitating disease, affecting the brain, the immune system and energy metabolism.

“Symptoms can appear suddenly or have a gradual onset. They include a profound lack of energy. ME is not relieved by rest.

Other symptoms can include unrefreshing sleep, cognitive impairment, dizziness, severe headaches, pain, sore throat, sound and light sensitivity, and many more symptoms. There are no approved treatments for ME and there is no cure.”

Medicine Foundation supports collaborative medical research to find effective treatments and diagnostic markers for chronic complex diseases, with initial focus on ME and CFS.

Louise recalled: “In June 2019, Cassie was 14 years old and started having episodes of dizziness, losing balance, headaches and extra tiredness.

“We attended the doctors and after blood tests showed no abnormalities or deficiencies, her symptoms were put down to 'normal teenage / hormone issues. This continued over the summer months and we altered her diet and allowed her to rest more.

“In September, Cassie returned to school and came home with severe headaches and exhaustion.

“Three months previously, Cassie had achieved top marks in all higher level subjects, through Irish, and now she was struggling to get through the day.

“At first, I thought perhaps the teachers were giving too much work, seeing as the children were in Junior Certificate year, but as the days passed, we realised it was something more than that.

“We attended Buncrana Medical Centre and saw Dr. Rajeesh Rajpal, who was so sympathetic and thorough.

“He completed intense blood tests and checked Cassie all over, where he discovered a slight irregularity in her heart. He referred her to Dr Bernadette Power, in Letterkenny University Hospital. All of Cassie's blood tests again came back clear.”

While she was waiting on her appointment, Cassie's health began to deteriorate, rapidly.

She was unable to function for a full school day or to complete her homework. She had constant severe headaches, all over body pain, collapsing episodes where she lost her sight for several minutes, severe fatigue and memory loss.

Louise said: “Cassie was admitted to Letterkenny University Hospital and again it was suggested that it was 'normal hormone / teenage issues' and that it was 'in her head', because her blood tests were clear.

“I am very open to the physical ailments which can be caused by stress, depression or anxiety, but using the words, 'It's all in her head', is not how to phrase it.

“It was suggested Cassie should have a psychological assessment done by one of the doctors who worked with the Child and Adolescent Mental Health Service (CAMHS) and I gave permission.

“Cassie passed this assessment as having no depression or mental health issues and the doctor thought it may be a form of epilepsy.

“During this hospital stay, Cassie had an ECG (electrocardiogram) and an MRI scan, both of which came back clear. We were now referred to Crumlin Children's Hospital, for an EEG (electroencephalogram) to check for epilepsy and for a heart echo, which, over time, came back clear.”

Cassie's consultant had a little knowledge of ME and thought that could be the diagnosis.

However, Louise said, even though the World Health Organisation (WHO) classified ME as neurological, in 1969, 80% of doctors still believe it is psychosomatic.

Cassie underwent two further, in depth psychological evaluations, both of which reinforced the fact she did not have any mental health issues.

Louise said: “If health professionals were educated on ME, it would help all sufferers, possibly recover or at best, not deteriorate, while looking for a diagnosis.

“During our diagnosis time, it was suspected Cassie had, epilepsy, a heart defect, mesial temporal lobe atrophy (Alzheimer's), cyst on the brain, Addison's Disease and MS.

“If we had been told they suspected ME but 'because there are currently no tests to show it, we have to eliminate all these other conditions', it would have been a more tolerable experience. Instead, we endured months of severe stress and worry, which could have been reduced, dramatically,” observed Louise.

Louise subsequently connected with The ME Association Ireland and a group in Newry, called HOPE 4 FIBRO & ME, who she describes as “a brilliant support with advice and education”.

Through these groups, Louise was also connected to an Dr William Weir, an Infectious Disease Consultant, in Harley Street, London, who specialises in ME.

Louise explained: “We met him in September, 2020, in Belfast and his advice has prevented Cassie form getting any worse.

“Cassie has been diagnosed with moderate ME, Fibromyalgia, Postural Orthostatic Tachycardia Syndrome (PoTS) and Joint Hypermobility Syndrome.

“Her symptoms consist of severe fatigue, erratic heart rate, low blood pressure, causing her to collapse and lose her vision, high blood pressure causing nausea, pain in joints, headaches, all over muscle pain and short-term memory loss, among others.

“As always, Cassie has not lost her great attitude to life and it is very rare to see her in bad form, even though she is so ill and in a constant state of pain. She says that this is her normal and she doesn't remember what it was like, before this.

“For any medical professional that thinks this disease is caused by depression or mental health issues, please meet my daughter and it will prove that this could not be farther from the truth.”

There is currently no medication that can help Cassie because her symptoms are so complex, a medication that may help one thing, will have a negative effect on another area.

According to Louise, she does take some supplements and has a prescription for Melatonin, which helps her sleep.

Louise added: “Cassie needed help from a team of healthcare workers, including occupational therapy. Thankfully, Dr Power recommended her for Assessment of Needs, which quickens up the waiting process, but it was still several months before our first appointment. The information that Anita Cahill, Cassie's OT provided, was a great help in recognising what Cassie's body was able to do.

“Fatigue is a symptom of so many different conditions, including ME, Fibromyalgia, Multiple Sclerosis, Lupus, Organ Disease, Chronic Obstructive Pulmonary Disease, Functional Neurological Disorder and Long Covid.

“At the minute, there is a waiting time of more than 12 months to see an occupational therapist, who can provide help and advice on 'pacing' your energy levels and recognising what your body is capable of, at that time. The longer a patient is without this advice, the more damage is done and lengthening of the recovery time.

“It is essential each county looks at setting up a fatigue clinic, but with the long-term proposal of a specialised ME section, as 'fatigue' has to be looked at differently for patients who experience Post Exertional Malaise (PEM).”

Louise advised parents to listen to their children if they experience and symptoms of ME.

She said: “Don't fob it off as them being 'lazy teenagers' or hormones.

“Get it checked out and if the symptoms persist, while tests are clear, push harder for a doctor to take it seriously. Do some research yourself. Connect into social media groups, anything that will help get answers for your child.”