By Ian Lazonby
I read the recent letter from your chairman in The Times and it struck a chord with me.
It is good that the government is taking “Long-Covid” seriously, but my own experience has meant I have lost all confidence in the NHS response to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
I realise that everybody’s story is different, but I wish I could have read more individual stories when I first got symptoms. So, here’s my story in the hope it may help someone.
I am a 59-year-old, dual-qualified vet and lawyer and have been a keen sportsman my whole life. I have been suffering from M.E. for the last 12 years.
I had glandular fever when I was a student at 20 years of age. Although textbooks say you cannot get glandular fever a second time, I did – at the age of 46.
After coming out of the acute phase I never fully returned to my previous energy levels. I attended my GP and the local hospital, and all blood tests came back normal. I found this one of the hardest times.
I knew there was something wrong with me but every time the test read normal I felt the medics were more convinced it was all in my mind. Eventually they said all they could do for me was refer me to a psychiatrist. I politely declined.
“I never met a doctor who seemed to understand chronic fatigue or who had a specific interest. I therefore went online to see if I could find a specialist NHS clinic. That is when I came across the accepted NHS ‘treatments’ of graded exercise and cognitive behavioural therapies, which made no sense to me at all.”
Graded exercise was detrimental
As a sportsman I knew how to push my body during exercise. I was a cyclist and ski tourer.
I could push myself hard enough to vomit or maintain a heart rate of 190 for an hour. I did not need a doctor to tell me to push myself harder.
During the first few months of ME/CFS, I had already been trying to exercise more each day.
However, every time I pushed myself hard, the next few days were far worse. I proved to myself that graded exercise did not work and was in fact detrimental.
- The ME Association Position Statement on GET, CBT, and Pacing | May 2015
- The ME Association Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome | July 2020
Energy fluctuations
During the last 12 years my energy levels have fluctuated. At times I have hardly been able to get out of bed and yet in the best phase I could cycle about 60 miles per day.
Personally, I find my energy levels stay fairly stable for months on end but with occasional bad days. The biggest lesson I have learnt is to listen to your own body.
As a sportsman my view always was to push through the pain. But this didn’t work when I had M.E.
If I go out on my bike and do not feel right I just turn back and go home.
When ski touring, I go straight up from the car and straight back in order that I can stop and return downhill at any stage.
When I was fit, I could take the big round tour or go over multiple ridges.
“If people with M.E. are reading this, they may be screaming how lucky I am to do what I do. I realise this but there has been a big change.
“I used to easily climb 1,000 metres vertical on touring skis and cycle in the Alps for five hours.
“Nowadays, when I reach my limit, it is like someone has turned off the tap. There are no two ways about it. I just have to stop.”
The other main difference is that taking a rest or eating does not mean I can then continue. I only get so much energy per day.
I liken it to having a full tank of petrol in the car when I was in full health, and able to top up at the filling station at lunchtime.
Now it is like the tank starts 20% full and the petrol station is closed. The car is also not properly tuned as real hard efforts are impossible.
- Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid | October 2020
- ME Association response to BACME Position Statement on the Management of ME/CFS | October 2020
Choosing how to use limited energy
Another key lesson I have learned is that you have to choose how you are going to use your limited supply of energy in any particular day.
If I do an hour’s moderate exercise, I need to lie down for the rest of the day.
If I have chores to do, then no more exercise that day. Luckily, I have been able to retire from work early and do not rely on a full-time job.
The other thing is realising how difficult it is for other people to understand why you behave in this way. Essentially you have to be very selfish and only do what suits you on that particular day.
My wife is a nurse and has lived with this reality for 12 years. On occasions, she still struggles with my behaviour. Eventually she came to understand that, if we set off on our bikes and I stop after five minutes and say I have to go home, that is it.
“When I exercise, I seem to use my energy more efficiently. My breathing rate is better than my wife’s when we cycle up a hill. But then I hit the proverbial wall: my heart rate then suddenly races away, and I have to stop.
“I remember reading something about post-flu fatigue years ago. It went like this: if you could spot a £50 note in a field but didn’t have the energy to walk over and pick it, you were probably still getting over the flu.”
Mitochondria
I went back to my training as a vet and researched what may well be the cause of this fatigue at a cellular level.
I reconsidered those little structures called the mitochondria found inside nearly every cell.
They produce the energy, for example, for muscular contraction. If they are not working correctly, they produce less energy, and the body becomes fatigued.
I then found a test for mitochondrial function promoted by an independent/private GP in Wales who has an interest in M.E. The test showed significant problems. It was a surprise to eventually be given a positive result after all the others blood tests had come back normal.
“You may have already guessed that I have not found a miracle cure.
“The same GP believed in very high doses of a range of vitamins including intramuscular Vitamin B.
“I tried for a couple of months, but my conclusion was there was no real benefit. I was just producing expensive urine!”
At one stage I did try Q10 tablets but again I found no real difference.
After 12 years I have accepted I am unlikely to ever fully recover. There are of course days when I inwardly curse and wish I could still do what I used to do. But generally, I have come to terms with it and having an electric bike does help.
- ME Association Research Review: The Role of Mitochondria in ME/CFS | July 2019
- Independent researchers determine mitochondrial test is unreliable and should not be used in ME/CFS | August 2019
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