After 35 years ill with M.E I am walking 5 miles a day and have been for 6 months. No PEM, (Post Exertional Malaise). I got ill when I was 12. At 47 I am basically recovered and well. Most of what I am doing right now is dealing with the results of being ill for my entire adult life.
It is really brilliant not having M.E. The disease is painful, disabling and attracts bullying like you wouldn't believe. The chronic, long-term, fatigue of M.E follows exertion and is like having a dumper truck of rocks tipped over you, repeatedly, day in, day out, for years. The absence of M.E is always going to be great simply because these awful things stop, but it is far more than this. When M.E goes, your life is restored and finally able to open up like a flower to catch the sunshine.
As my legs pound up the side of the mountain ridge behind our house, I think of all the other M.E patients who are not yet so lucky. To be clear: I always think this. Every single time I make the climb. On the days when I run right up I am most keenly aware that in bedrooms in darkness across the country people are suffering.
What is it that enabled me to escape the gravity-well of M.E? How can I help others to pull free also?
A balance has to be struck. My life cannot just be about M.E. And, in truth; I do not want to talk about it so much now that I am out in the real world. Further, though my last work for M.E patients generated a total of 1.1 million views, it also brought unbelievable abuse and a permanent injury to my mental health. I have to take care.
My reputation as an M.E patient advocate was built on my descriptions of what it was like to have M.E. They resonated with so many others. I take from this the idea that though M.E is a broad, poorly defined complaint, whatever I had, whether you call it Post Viral Syndrome, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis it was very likely exactly what everyone else is suffering from.
If I can get better, I think there is a very, very good chance that many others can get better too.
I recently broke my arms skateboarding (I have a lot of lost time to make up for). As my arms fix themselves quite brilliantly (full function already!!) I am reminded that my body is not totally broken and useless. And this was true even before I got better. I remember clearly a time in my life when poverty forced me to walk each day. Though the symptoms and pain were awful, my body did build muscle. It was getting energy, it was functioning.
My recovery from M.E was a painfully slow process. It took 18 years. Perhaps this shouldn't surprise me at all: 18 years in, and 18 years back out again. The symmetry is here is remarkable. Now, people always say we should look at the most severely ill to understand M.E, but this bias produces a warped view. When you only look at people with M.E who are suffering so much for so long, you start to see M.E as untreatable, progressive and without hope. The full picture, however, includes a large number of patients whose symptoms have improved and small set of patients who report full recovery. To understand M.E and to learn how best to treat the condition, it is prudent to also look at those who got better.
In fact it is most wise to look at all stages of M.E.
The crucial moment isn't now when I am up mountains. With the best will in the world it is hard for severely ill people to be pleased for me, to relate to my experience, or to find much of value in my reports of activities that are far beyond their current capacity. Likewise, the point when I was most ill, slowly and limply writhing in muscular pain in darkness, this tells us little.
We already know that M.E can be an awful and indescribably lonely torture.
The moment that's most interesting is the point where I turned the corner. Something changed at age 29, the mid point of my illness. Now, if it were an entirely physical thing, if my own body beat M.E, I am not going to be able to share this cure with you. However, my recovery from M.E also had obvious environmental, behavioural and social aspects. In addition, psychologically, I had to recognise recovery for what it was. To recover from M.E I had to learn how to recognise recovery and how to re-enforce it.
I had to work, for years, to nurture and grow and protect my recovery from others and from myself.
All these things I can share. I hope they will be enough. I would dearly have liked to have investigated and discussed the biological mechanics of M.E, but aggression and abuse and bullying from too many of those involved in biomedical research has prevented this. M.E patients can't seem to get a break. Even now after all these years of miserable illness they are given scientists who publicly pervert the scientific method by promoting abuse or denying its existence.
If I were an M.E patient right now, I'd be dismayed at the state of the science. I'd be shocked at the entrenched points of view and the impossibility of even simple discussion of my disease.
But, you know, I'd also look at the people who report getting better from M.E and I would take heart.
For us, M.E was not a life-sentence.
For us, the energy returned and the pain subsided. Seriously: I can walk in heat, sunlight and traffic noise. I can get drunk. Within the limits of my tarred lungs, I can run. My recovery means that you know of someone who had M.E and who is now skipping up and falling down the mountains of Wales. You know someone who is crawling not to the bathroom, but through horse manure to photograph beautiful butterflies. You know someone whose mind was full of treacle who's now writing a book on AI. You know an ex-M.E patient who is training to run the London Marathon. And do you know what?
I think, yes: Most likely, you can get better too.
In summary: I think that people can recover from M.E.
