Tuesday, 1 August 2017

Yippee! According to researchers at Stanford, CFS is an inflammatory disease, not a psychological disorder!

From today's Telegraph:
Chronic fatigue syndrome is an inflammatory disease which could soon be diagnosed through a simple blood test, scientists have said.
Researchers at the Stanford University School of Medicine discovered that people suffering the symptoms of CFS show spikes in 17 proteins produced by the immune system. The bigger the rises, the more severe the condition...
...for decades the illness was largely dismissed by sceptics as ‘yuppie flu’ because no cause could be found.
The new research is the first to show a concrete reason for the condition: chronic inflammation, driven by the immune system. Inflammation is the body’s way of responding to an invader and the reason that people feel so groggy when combating a cold or the flu.
I'd been thinking about my mental/physical condition this morning when I picked up the paper, after ingesting the array of pills, capsules, potions and powders with which I habitually start the day (they may not make a blind bit of difference...

...but, even if their function is symbolic rather than therapeutic, taking them helps me feel as if I'm doing something positive). I've finally been granted an interview at the nearest NHS CFS clinic, after spending several months on a waiting list. Although I've been unwell for almost four years, I've been unenthusiastic about attending this sort of clinic, because of reports from fellow-sufferers that what's on offer is the standard NHS cognitive behavioural therapy/increased exercise programme regime, which implies that the problem is mental, and that all I need to do is get off my lazy, exercise-phobic arse, do a bit of jogging, and I'll be as right as rain in no time.

I've tried gently increasing the amount of exercise I do each day - and I've paid the price with bouts of what's known as "payback", i.e. a day or two of severe brain fog, total and absolute exhaustion, and little, if any, sleep. It works for a small minority of sufferers, but I'm definitely in the majority. I stick to my 20-minute evening stroll (unless I'm really buggered), and that's that. I've always rejected CBT on the grounds that I'm not in the least depressed: people with CFS are six times more likely to commit suicide than the national average, and clinical depression (as opposed to feeling down in the dumps) is also a danger - but, mercifully, I've remained relatively cheerful throughout this latest lengthy bout.

If I hadn't already retired, and wasn't married to a rather wonderful human being, it would no doubt be another matter: being felled by CFS while trying to hold down a job and without anyone to help you through it on a daily basis must be a nightmare, especially as it's a condition about which most people - including many doctors - remain sceptical (it's bad enough feeling rotten without being generally regarded as a scrimshanker). But, as a doctor friend of mine recently explained, CBT is meant to teach you how to cope better with being ill, rather than to cure the illness itself.  My only doubt about it now is that - apart from being faced with unexpected problems which require a clear head to sort out - I reckon I cope okay.

Well, we'll see. If any help is offered, it will be gratefully accepted. I just hope some some young, working-age person whose life is being destroyed by this thing isn't being denied a place because of me. (I'd give up my place for them, but there's no guarantee I wouldn't be relinquishing it for someone even older and with less severe symptoms than me.)

With any luck, the Stanford breakthrough (America and Australia seem to lead the field in CFS research - bless them) will lead to a number of potential "wins":

(1) It should finally lay to rest the Self-Obsessed Middle-Class Lazy Bastard Syndrome reputation the condition has enjoyed since the 1980s, when it was known as "yuppie flu".

(2) It could lead to the term Chronic Fatigue Syndrome being banned. It's an awful name for it - for a start, "fatigue" doesn't really describe how we feel. Fatigue, tiredness, exhaustion etc. are what I used to feel after a long bike ride, or a proper three-hour walk in the country, or an overnight stint at work, or when I finished writing a book - this is different: this is how I used to feel in the latter stages of a bout of flu, when all the body's resources were being used to fight the virus. The alternative name for the condition, myalgic encephalomyelitis or ME - means "“brain and spinal cord inflammation with muscle pain”, and the Stanford findings suggest that's closer to the mark.

Alternatively, we could choose from the long list of names it's been known by in the past, including Tapanui Flu, Royal Free Disease, The Durban Mystery Disease, Iceland Disease, Lake Tahoe Mystery Disease, Coventry Disease, Soldier's Heart, Overcharged Immune System Syndrome, and, from Japan, my own absolute favourite - Low Natural Killer Cell Syndrome. That last name would mean that, when well-meaning people tell me they've heard that I've been unwell and ask what I've got, they won't be tempted to respond with, "Oh, I know - I've been feeling dreadfully tired myself recently." I hate to sound like a drama queen, but that's like someone with a broken leg being told, "Oh, I know - I've been getting these twinges in my big toe recently."

(3) Far more important than questions of nomenclature and reputation, it could lead to proper medical treatment, and, God willing, in time, an actual cure.

Wherever it leads, this CFS sufferer would like to extend his heartfelt thanks to Dr Mark Davis, professor of immunology and microbiology and director of Stanford’s Institute for Immunity, Transplantation and Infection, and the rest of team involved in this valuable piece of research. To them - and to all the other scientists around the world trying to figure out what this damned thing is - keep up the great work. Much appreciated, believe me.

I'll leave the last word to the study's lead author, Jose Montoya, MD, professor of infectious diseases:
I have seen the horrors of this disease, multiplied by hundreds of patients. It’s been observed and talked about for 35 years now, sometimes with the onus of being described as a psychological condition. But chronic fatigue syndrome is by no means a figment of the imagination. This is real.
It is indeed.


  1. Delighted to read of this breakthrough, Scott. I hope it will result in increased funding for research, and better understanding of the condition among professionals and the general public.

  2. I wasn't aware CFS also causes loss of sleep-sounds ironic perhaps but clearly horribly true. I deeply sympathise.
    Hopefully a full diagnosis and treatment Will soon be available.

    1. Yes, it's ironic, southern man. As CFS folk tend to feel tired all the time - I invariably wake up more knackered than when I eventually went to sleep! - I suspect that the body simply doesn't receive or recognise the normal signals telling it to shut down for the day.

      I suspect a truly effective treatment is still a long way off, and may rely on advances in the treatment of other auto-immune conditions. But, with any luck, there will come a day when sufferers can be diagnosed with a simple blood test, and will be able to cure themselves with a handful of over-the-counter tablets. (Some time next week would be nice, though!)

  3. Well said, Southern Man. I hope that your CFS clinic appointment is a first step to getting it sorted.

    1. Thank you, ex-KCS. Four years in, and I've yet to receive a single useful piece of advice from any of the doctors I've seen - or any effective medication (apart from one particular pill that I asked them to prescribe), so I'm not expecting to walk out clutching a magic bullet answer to the problem. But I'll be interested to find out what - if anything - an expert in the field has to offer. At this stage, I'm up for anything!