Chronic Fatigue Syndrome - I've tried the NHS, and now it's back to the drawing board

Dr James Le Fanu's column in yesterday's Telegraph caught my attention. It started with the question: "When the findings of an authoritative scientific study into the efficacy of some treatment appear to be contrary to the experience of at least some of those taking it, which is likely to be more reliable?" Le Fanu then cites two examples, the first of which is a study whose results were published in the Lancet in 2011, which essentially viewed CFS as a psychological condition, and "found" that 60% of sufferers would benefit from a mixture of CBT (cognitive behavioural therapy) and graded exercise therapy (i.e. a steady increase in the amount of exercise undertaken by patients) - and 20% would be cured outright. The NHS developed a course of treatment for CFS patients based on these findings. The only problem is that the Lancet (or PACE) trial has since been exposed...

...as (to put it mildly) "flawed".

In 2016, the researchers were required by a court order to release their raw data, which revealed serious problems with the methodology (I'm too knackered to go into detail, but there's an article by a science writer and CFS sufferer about it here). Last month, a paper published on the BMC Psychology website concluded: "...the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence."

The reason I'm interested in all this (apart from the fact that I'm 52 months into a bout of CFS) is that an NHS therapist cited the Lancet report as justification for the treatment I was receiving during a session last month. I pointed out that the findings had been widely debunked - or, at least, questioned - but she didn't respond to my observation.

I applied for the NHS CFS course a year ago. It took about nine months to be accepted, and I attended five hour-long sessions at Hillingdon Hospital (unreachable by public transport, a 25 minute drive down the M4, and parking an absolute nightmare, so my poor wife had to drive me there and hunt for a space while I was being "treated", and hang around till my session was over). I was due to attend ten sessions in all, but I phoned up last week and cancelled the two I was due to attend tomorrow - one with an occupational therapist, the other with the physiotherapist. I felt guilty about throwing in the sponge, because the team in the carefully-hidden prefab at the hospital were very nice, and because they're always having patients bale on them (I've met two refuseniks so far).

But it really wasn't doing me any good, the stress of attending the sessions was taking its toll, and I found some of the advice to be - for me, at least - counterproductive. I was asked to accept that we use three different kinds of energy - cognitive (i.e. what I'm drawing on as I write this), physical, and emotional. Each of these types of energy has a different source - i.e. it's being produced by one of three internal energy batteries. While you're drawing energy from one battery, the theory goes, the other two batteries are quietly being replenished with available energy. If I were to stop writing this post right now and - say - go for a walk, I would return to my desk with increased cognitive energy. But this didn't work for me.  Had I walked around the block instead of heading for my desk, I would now be too fatigued to organise my thoughts. I tested out the theory over several months - and it simply isn't correct!  

The other main plank of the NHS approach - a steady increase in the amount of exercise the patient takes releases more energy - is also questionable. Before starting the course, I was already taking one 15-minute walk a day - sometimes two - and doing a series of gentle stretching exercises once a day. I was asked to increase the length of my daily constitutional, and to quicken my walking pace. I refused to do either, because I'd already tried both, and they'd proved counterproductive - I could easily do a fast(ish) 25 minute walk right now, but it would wipe me out for the rest of the day, and the whole of tomorrow. I opted, instead, for two 15-minute walks and two sets of stretching exercises a day - which led to nightly attacks of sleep-destroying restless legs... I've now reverted to one walk and one set of exercises a day. The final straw came when I was advised to meditate, and told that meditating late at night might help me get to sleep. But I've tried meditation several times in the past, it hasn't worked, and, even before I knew what the letters CFS stood for, I discovered that meditating last thing at night guarantees hours of wakefulness (a well-known phenomenon).

The one thing I was hoping to get out of the course was some help with my deranged sleep patterns, but I was told that "sleep" would be covered later in the course (I'm sure it was all the usual stuff about avoiding tea and TV or computer screens after 9pm, not reading anything interesting in bed, and taking late-night baths with the lights doused, while surrounded by scented candles or whatever  - I tried all of those things, apart from the scented candles, and they worked for a while and then didn't). I was told I should ask my doctor for sleeping pills (as I'd explained, I'd already done that - and they leave me zombified for the whole of the next day). I brought up the point that a fellow-CFS sufferer who used a Fitbit to measure the amount and quality of their sleep discovered that they were getting no proper, refreshing, deep sleep at all! This observation drew a blank stare.

Still, they meant well. And I suspect the treatment might benefit some patients who, while not bed-bound,  have given up on exercise altogether, don't routinely overindulge in cognitive activity, have never encountered the phrase, "Remember - we are human beings, not human doings", have never meditated, who are suffering from depression, or who have feelings of guilt about suddenly being so utterly useless. The only guilt I felt was about accepting a place on the course, because the NHS should really be concentrating on people of working age and those with extreme muscle pain. CFS is an inconvenience to me, and a bore and a worry for my family, but it can be an absolute disaster for people who have to earn a living and raise a family: they really do need all the help they can get. I hope whoever takes my place on the course is able to benefit from it.

Back to James Le Fanu's question about scientific studies versus the experience of patients. The problem with the Lancet research was that it seemed to imply that CFS is a mental health problem, and that sufferers are basically sloths who should get off their arses and do more exercise. I don't think the report really suggested either thing. It's true that it would be easy to give up on  exercise altogether and slip into the Slough of Despond, and the very least the NHS course might achieve is to halt or even reverse this self-defeating downward trajectory in some cases. Neither do I believe that going with the CBT/graded exercise approach is stopping the Health Service from offering alternative therapies - the only alternatives are fantastically expensive and experimental, and therefore beyond the NHS's remit or budget.

The harm that the Lancet report may have done by perpetuating the myth that CFS is a psychological condition which results in some physical symptoms rather than a physical condition with some psychological symptoms is to convince employers, friends and family and many doctors that it's all in sufferer's head, and they should just snap out of it (the next person who tells me that what I need is "a good holiday" dies). As Le Fanu points out, researchers have found convincing evidence that CFS patients have "impaired functioning of the autonomic nervous system in response to physical and cognitive challenges." With a bit of luck, sufficient research funds, and a lot of painstaking work,  the American, Australian and Swedish medical researchers who are making all the running in this field will eventually discover what causes it, and how to put the damn thing right. Sod it. 

As part of my eternal quest for silver linings, I pointed out to my wife the other day that, if nothing else, CFS has at least allowed me to experience what it's like to be stupid and indolent all the time - not, as in the past, occasionally.