Chronic Fatigue Syndrome

This is an article which I don’t want to write, but I also do. I live my life as if nothing happened. I pretend nothing happened. But the effects on my life both then and since have been enormous.

Where were you when 9/11 happened? I was at my parents’ house in Ireland, preparing for my first day at university. I know this because I’ve told myself the story many times by now. I’ve seen the TV reports so often that I can remember the planes crashing into the towers. Only I can’t. I don’t remember any of it.

I was 19 and at least 6 months of my life are completely missing. I got up most days. I talked with people. I successfully registered for university. I moved into on-campus accommodation. I did sport on rare occasions. I even had a girlfriend for 3 months. But the memories were never formed, or if they were I have never had subsequent access (for the neuroscientists out there: they faded out about 12 months later).

My mother reminded me of this period of my life last night. She told me how the doctor who ultimately helped me (Joe Fitzgibbon) was now helping the child of a friend of her’s. In our conversation, she happened to mention that she had met Joe just once. I couldn’t remember that. She met with Joe about 12 months after I got sick. But I also have no memory of that event.

Before getting sick, I was an international level athlete. I had competed in the British National Schools’ Regatta at age 16, bringing my crew in 3rd overall. At the time, this was the premium level of international rowing. I was also an excellent student. I had just spent a year studying French at a French university. (Yes, I studied French alongside French students. It’s one way to get good at it.)

Then I got a virus. I had some fever symptoms. Initially it didn’t seem too bad. I’ve always had allergies, so the symptoms sort of combined and I hoped for rainier days. I moved back to Ireland from France for the summer. And then things got worse.

I was officially diagnosed with mononucleosis. My family doctor was away so I was treated by a locum. He didn’t do the best job. He thought I’d be better in a week and didn’t think to mention that I should avoid alcohol for at least six months (something I learned a few months later when my med-student friends came down with the same infection).

The first two years

Not knowing what is wrong with you is one of the worst things about suffering from Chronic Fatigue Syndrome (CFS/ME). I went from being supremely fit and a world-traveller, before it was common, to needing a rest after going to the corner shop. The symptoms were also getting worse over time. This is not an illness with a sharp onset and a gradual recovery. In my case, there was a defined onset, followed by a decline over two years, before a very rocky recovery.

I have been incredibly lucky, in so many ways in my story. At the end of the first year the Dean of Science in my university told me that it sounded as if I had CFS and that there was one specific doctor who I should definitely see.

I was diagnosed with CFS/ME approximately 12 months following the onset of my viral illness. I had heard of the illness before. In Ireland and the UK, CFS/ME is historically referred to as M.E. (Myalgic encephalomyelitis) and has been popularised as yuppie flu in the media. It’s the flu-like illness that yuppies get when they don’t want to work so hard any more. To this day, CFS/ME is not recognised by the German health service with horrible implications for the many sufferers there.

I was clinically diagnosed according to a standardised protocol which basically rules out all alternatives. Nobody knows what causes CFS/ME and there are almost no known biomarkers for it. There have been many attempts in this area and the NIH in the US are ramping up their spending, but this is still a very under-supported disease and progress is slow.

My doctor was very much focused on the research literature. At the time I was diagnosed, the research strongly supported the approach developed in the PACE trial. Depressingly this guidance has turned out to be based on very shoddy research. Over the first year of my contact with my doctor, we largely worked to stabilise my condition, to prevent further decline.

A very under appreciated factor of CFS/ME is that it is quite degenerative. By overdoing things I would get a rebound effect, which would prevent me from doing much. My general condition would decline and I would be even more susceptible to overdoing things in future. This is a spiral of decline which is extremely common in CFS/ME patients.

Treatment

I don’t have a roadmap for treatment from CFS/ME. In my case, over the course of a four years, in particular, I followed a regime of i) graduated exercise, ii) vitamins, iii) specific fish oil formulations, iv) occasional drug interventions, v) all kinds of quackery, and vi) occasional psychotherapy.

My doctor prescribed the graduated exercise. In the beginning, I would lift only the iron bar, with no weights applied, a single time. A week later, I might move up to two lifts. The goal was to increase my physical ability without provoking a relapse.

There have been many academic studies of CFS/ME which have associated the condition with deficits in certain vitamins and minerals. So, naturally, we supplemented my body with them. In biology, it is never clear what is cause and what is symptom. So it is entirely possible that the supplementation had no effect. But, just-in-case was the motto in this approach.

I attended a talk by Basant Puri where he convinced me that it is entirely plausible that patients with CFS/ME have a genetic abnormality in processing certain fats. He has data which shows that we lack certain conversion factors and end up with an imbalance of fats in our systems. He convinced a supplier to develop a fish oil product which contains exactly the formulation which he recommends in order to both supplement and rebalance the fats in the body. I honestly don’t know if he’s right, you can read about it in his book. What I do know is that when I take his particular fish oil formulation I feel much better (even today) and this effect is not as strong with other formulations.

In the cases of both the vitamins and the fish oils, I cannot point out enough the limitations of the scientific evidence here. This is a regular topic of interest for me. Just because a patient has low chromium levels when they are suffering from an illness does not mean that supplementing them with chromium will help them to recover from the illness. In addition, it is possible to have severe problems from over supplementation (eg. hypervitaminosis). We were careful to supplement with compounds which are known for their anti-inflammatory properties and all of this was supervised by a medical practitioner.

Medication is not something I massively want to discuss on a public forum. To be honest, it largely didn’t work for me. There is no known drug treatment for CFS/ME. There are however drugs which are often prescribed and don’t hurt to try. I had an adverse reaction to one, so we quickly discontinued.

I’m going to skip the quackery. There was a lot of it. I tried it. It’s all bullshit. I highly encourage people to support the Cochrane Reviews in their quest towards evidence-based medical treatments. Did you know, for example, that there is very little evidence for the efficacy of acupuncture, for almost any illness?

Something I have a tendency to overlook is the benefit of psychotherapy. I definitely do not categorise this as quackery. Suffering from a major illness, which leads to ongoing infections and regularly being bed-ridden, is extremely psychologically trying. Get help! Most sufferers of CFS/ME have a certain personality type. We are go-getting, driven people. We are exactly the wrong type of people to recover from this illness. No matter what is causing it, this is an inflammatory disorder in its presentation. By pushing yourself too hard, you drive the inflammatory process and inhibit your own recovery. Psychotherapy and meditational techniques, such as yoga, have helped me enormously in my recovery.

It takes a long time

My current understanding is that only 5% of patients fully recover from CFS/ME. I have to admit that the scientist in me wonders whether the statistic is correctly gathered. It’s pretty gobsmacking if it is true. The Millions Missing project attempts to highlight this issue.

Recovery in my case was extremely slow. I spent 6 years massively debilitated by CFS/ME and a further 2 years where I was still largely incapable of holding down a job. I had memory failures. I couldn’t think clearly. I had regular infections and needed multiple treatments with antibiotics to recover each time. My body ached. Everything sucked.

I focused on progress. I focused on what I could do then that I couldn’t do a few weeks previously.

At this point, I need to point out the devastating impact of the scandal behind the PACE study. In that study, the original data was misclassified to show patients who actually suffered decline in their condition, as a result of the graded exercise, as having improved. This is outrageous and extremely dangerous. So please, do not undergo any interventions blindly. In my case, I did improve over time. But do not infer that the graded program was necessarily the cause.

However, I do feel that a general feeling of progress helped me a lot. I was young when I got sick and so time felt like an eternity. Now, I feel as if I didn’t miss out on so much after all. (Yeah, definitely the mindset of someone who has recovered!)

I had major setbacks along the way. I was supposed to go to Edinburgh to study and had a relapse, 4 years into the illness, that nearly set me back to the very worst state of my condition. The only difference was that, this time my recovery was much quicker.

I learned to monitor everything in my life. It was necessary to my recovery. I mentally monitored my progress and whether things were making me better or worse. Subsequently, this was not such a healthy approach to life but I needed it at the time.

After 8 full years I think I can say that I was physically recovered. I was no longer fit. I still got viral infections much more frequently than is normal. But my body was about average in other aspects.

Moving on

I left Ireland in order to mentally overcome CFS/ME. I took on a major project of life relocation and moved to study in Germany. This is not a project that a typical CFS/ME patient can consider. This is why I date my recovery to this point. At that point in my life I was 27 and had somehow managed to complete both bachelors and masters studies in pure mathematics (I said I was lucky!). I had not been able to work outside of a university environment, since I often needed to sleep-in to recover from over-exertion. So I thought a PhD would be the perfect opportunity to progress in my employability without taking a real full-time job.

Things didn’t work out in Germany. I will write an article about academic malpractice in Germany at another date. It’s pretty endemic here. So I moved to France.

After 2 years in Paris, studying at the École Normale Supérieure, my PhD supervisor moved to the University of Chicago. I went with him. I completed my PhD in 3.5 years and suffered some other life upsets. I applied to a job at Cambridge University, was accepted but was told that the job was actually in Berlin. And so, I moved to Berlin.

For 3 years I taught and researched at the TU Berlin. I was given my own masters course to develop and lecture. I really enjoyed it, but had the misfortune of proving that my boss’ favourite career pillar was incorrect. This did not go down so well. For many reasons, which I will happily write about in another article, I decided to take a break from academia and start my own business. This is what I am currently doing.

I describe here the physical process of moving on. But I have omitted the mental process because it is harder to write about. Having missed out on 8 years of my 20’s is quite difficult. I missed out on many opportunities to develop and grow. I can either dwell on this, and regret it, or I can enjoy the time that is left to me.

I work on highly biological topics. I was motivated in this area, via sports science, before I got sick. But clearly my motivation has increased via my interactions with the medical community. That said, I have steadfastly avoided working on CFS/ME. I don’t think that it would have been good for me to work on this illness. It has already taken a lot from me. From now on, I get to choose on how much more time I give towards it.

Why am I writing this?

I am not really writing this article for the good of my own health or ego. I really, really did not want to write it. But hearing about the reaction recently of a grandmother, whose daughter and granddaughter both have CFS/ME, upon hearing that I had recovered from this illness made me realise that it is important to share the news that there are some good news stories out there.

I did recover. And others will too. In the meantime, I heartily encourage you to give to clinical research on this illness via your national CFS/ME foundation.

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