Tom Kindlon has had ME/CFS since 1989. He needs a wheelchair if he has to go more than 50 metres to the house a lot of the time. Tom is at the severe end of the ME (myalgia encephalomyelitis) spectrum, he says, and it took him five years to get a diagnosis.

“Initially, I had mainly muscle and flu-like symptoms. My health went downhill over time and it was only when I became really bad in 1994 that I was diagnosed.”

Tom believes that waiting for five years for a diagnosis is far too long.

“People get diagnosed a bit quicker now, but any wait over a few months is too long. All sorts of things can happen in people’s lives if they don’t have a name for what’s wrong with them.”

But what treatments or strategies has the Irish ME/CFS Association spokesperson found useful in coping with ME?

“I haven’t gone down the alternative therapy route,” he says. “I would use resting and pacing to help me – and listening to relaxing music. Fish oil supplements help my brain function too. I know that because I’m worse if I stop taking them.”

Although a member of Mensa, Tom often has trouble reading anything more challenging than comics.

“My brain function has improved but I have to ration it the same as I have to ration my physical energy, so I restrict the quantity I read a day.”

Tom explains the payback aspect of ME, now often called Chronic Fatigue Syndrome.

“If you overdo some activity you get worse,” he says.

“They’re called post-exertional symptoms. You’ve got a sort of invisible barrier and if you push over that you feel increasingly ill. If you stay within it you could often feel reasonably well.”

Tom lives with his parents and usually invites people in rather than going out himself.

“I live within the house and I tend to bring life in because it’s easier for me than going out,” he says. In relation to society’s perceptions of those with ME/CFS, people with the illness often don’t look ill, he says, and this can cause misunderstandings.

“It’s an invisible illness in ways. People see someone who looks well walking in. They don’t have a broken leg or anything like that, but while that person (with ME) can walk a certain distance, they won’t be able to do it or lift boxes as part of a job all day. The level of disability can be somewhat hidden with ME.”

“Being diagnosed will help a lot and learning about ME will help too,” says Tom Kindlon.

“The more you can learn about the condition, the more you can control it rather than it controlling you. With good management, some people will make a good improvement over years, but for other people it will be longer. You can have a quality of life at different levels.”

FALSE HOPE

Mary, a Leinster reader, says that with ME you put a lot of energy into false hope and going down the wrong road. She has tried many treatments in an effort to alleviate her symptoms. ME started with a viral infection for Mary and she was diagnosed in 1993.

“Giving up willpower was probably the best thing I did for myself. You stop wasting energy when you accept what you have. Up until then I kept trying to support myself and I wasn’t able,” she says.

Mary has put a lot of energy – and money – into looking for cures. “I was careful about what I tried. I had acupuncture for a long time but it didn’t get me anywhere. I also tried some healers. There was always some small help from them but not a cure. I did a major detox once, which was very tough, but it only benefited me for five months. Recently, I’ve been trying craniosacral therapy and lymphatic drainage in tandem. I don’t want to give anyone false hope, but I’ve been doing them for about eight months and there is a very small and gradual improvement. My head is a bit clearer and I get a little more out of the day. I also take fish oil supplements.”

Mary, like Tom, spends most days at home.

“It’s easier if people come visit me for the cup of tea,” she says. “I find cafés very noisy and you have to make an effort to be heard. Everything counts for energy when you have ME.”

DEBILITATING SYMPTOMS

Anne, a Connacht farmer, has had ME since 1997. Her present episode of the illness began four years ago, she says.

“Like many sufferers, I’ve learned to navigate life and work around the varied and sometimes debilitating symptoms.

“Episodes of severe fatigue usually occur after a bronchial infection. Joint and muscle pain, irregular heartbeats and dizzy spells are another few of the adversaries that I have to battle with in order to push on with daily life.

“Thankfully, I have pockets of time when I think maybe this strange condition has forgotten about me

“In recent months, through diet change and supplement intake under the guidance of a qualified nutritionist with a background in treating patients with ME, I have started to feel a new level of optimism in my bones.

“ I find that a positive outlook is paramount to surviving the challenges of ME, farming and life. Everyone living with ME has found, through experience, what is energy aiding or draining for them. What works for the individual can vary dramatically.”

LIGHTNING PROCESS

Niamh Connolly spent 12 years searching for a ‘fix’ for the ME she developed after a streptococcal throat infection.

“The throat infection was the likely trigger of a sustained arousal of a ‘fight or flight’ response,” she says.

She believes this response disrupted how her endocrine, nervous, immune, musculoskeletal and digestive systems functioned.

She did the Phil Parker Lightning Process training course and believes that using this training programme has helped her get her energy and life back.

“I learned that I could switch off this disruption by tapping into the brain-body connection,” she says. “The five-step cognitive exercise programme enabled me to change certain thought and behavioural patterns. Over time I trained my neurology to manage my body in a more useful and health-giving way, but it wasn’t an overnight transformation – I had to work at it.”

Niamh is now a Lightning Process practitioner running her True North practice in Banbridge, Down.

Niamh is aware of scepticism about the process but says that some people may not stick with the training long enough to see results.