A cure for Chronic Fatigue?

Regular readers of my blog may recall that I have suffered from the condition known as CFS (ME) for the past 19 years. CFS leaves me without enough energy to get me through each day, and in its worst form makes me unable to get out of bed – for weeks, or months at a time.

On the news this morning, I heard about the launch of a large-scale trial for teenagers in the UK, to treat CFS online. It’s estimated that around 2% of UK teenagers suffer from CFS/ME, causing them to miss school, and the condition is currently untreated. A programme in the Netherlands claims success at treating patients, and is being rolled out here in Britain, initially for around a thousand children.

The method involves online counselling, and has come in for criticism by those who believe that CFS/ME is a real disease, and that this psychological counselling perpetuates the idea that it’s just a psychological condition. I am personally firmly convinced that CFS is a physical condition – most likely some kind of pathological and permanent immune response to a viral infection. I believe this because, like most sufferers, my CFS began immediately after a viral infection, and every time it recurs in its worst form I experience exactly the same symptoms as the original infection all over again, even though I don’t have it.

I’ve been trawling around for facts about the study this morning, and it’s been hard, as most of the news reports I’ve found have little to say about the details of the treatment.

From what I understand, listening to interviews with teenagers who have received the treatment, it centres on ways to manage sleep and activity levels – ensuring that sufferers are realistic about how much activity they can undertake, and that they rest sufficiently. The claim is made that 63% of patients treated in this way in the Netherlands showed no symptoms after 6 months, whereas just 8% recovered without it.

This advice – don’t try to do too much, and take sufficient rest – is exactly the advice I gave in my first article on CFS. I still believe this to be sound advice, and if this is what the counselling seeks to achieve, then it sounds like a good programme that could benefit many teenagers (and adults too). Anything that helps people to reclaim their lives should be welcomed. I have used the same kind of approach to manage my own condition, and haven’t suffered from the most debilitating form of the condition for around five years now.

But I am not cured. I have learned a management strategy. And I suspect that the teenagers that this programme claims to have “cured” have also learned to manage a condition that will be with them for the rest of their lives. I hope that the programme teaches that, otherwise patients who think themselves cured may suffer from relapses.

I hope that the study will not reinforce the myth that CFS/ME is a psychological condition. And I hope that research into a real cure will continue. One day, there may be a way to cure this horrible condition for good. In the meantime, this counselling sounds like a very constructive way to help people live with CFS/ME, and I hope it is successful.

Advertisements

10 responses to “A cure for Chronic Fatigue?

  1. Steve,
    Hope they can find a cure for it and you’re able to get relief.

    One quick point. I suspect you already understand this, but some readers may not. Even if it were psychological, that wouldn’t mean it wasn’t serious or something people could just pull themselves out of. “Psychological” would just mean that it’s a problem in the brain rather than other parts of the body. We shouldn’t relegate those types of illnesses to any lesser status.

  2. Thanks Mike, and I did not mean to downgrade the status of psychological conditions. But there has been a feeling among the medical community here for many years that CFS has little or no medical basis, and that patients are somehow imagining their symptoms. I think that’s because there is no test for CFS, and its cause is not understood. I suspect that historically this has also been true of conditions like depression, schizophrenia, etc.

    • Not sure on schizophrenia, but I know with depression that they only have self report and behavior for diagnosis. No one is able yet to do a brain scan for depression or similar conditions, but we know SSRI drugs, TMS (transcranial magnetic stimulation), and other techniques often make a difference, albeit one that still typically requires effort on the patient’s part.

      But I can totally understand the desire that they not put all their effort on the theory that CFS is psychosomatic or something. If nothing else, it may be delaying research that might lead to an achievable cure.

  3. Yep, there are all sorts of trials coming out now based on the PACE trial.

    You can sign a petition to try and stop one from going forward in the NSW university – the petition is open to other countries than Australia. It would be helpful if the international CFS/ME community got behind this as well.

    https://my.meaction.net/petitions/stop-graded-exercise-therapy-trial-at-university-of-nsw?bucket&source=facebook-share-button&time=1476475239

    We are tiny individuals and we are struggling against so much, but in our way (exhausted, from behind laptops) we can be activists too!!

    • Thanks Claire. The main problem with CFS, I believe, is that medical professionals have no way to test for it, because no specific cause has been identified scientifically. Family doctors know as little as anyone else, so weird theories abound – like the ones that were tested in the PACE trial. And because of the fluctuating nature of the condition and the fact that there is no objective measure for its symptoms, almost any study can be expected to report successful outcomes in the short term.

      • Exactly – good management can lead to improved life quality, and patient perception of improvement is subjective – a lot of those studies are just bad science! For instance, very few have control groups or any objective measurements.

  4. This is a good discussion of the errors and problems associated with the PACE study:
    https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/
    Basically, the notion that asking CFS patients to gradually increase their daily exercise regime (in a misguided notion that they have become conditioned psychologically to shun exercise) is entirely unhelpful and may well be counterproductive and harmful.

  5. In fact the more I read about this study the more worried I become. Here is the official website for the study:
    http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/
    Could it be more vague?
    What will the treatment actually consist of?
    The only clue is in the use of the phrase “activity management” which is worryingly close to the phrase “managed activity” that has been used by clinicians involved in graded exercise approaches that have been so thoroughly discredited in the past. I really hope researchers are not about to repeat this mistake all over again on an even bigger scale.

  6. I was going to share the article at Stat but see you beat me to the punch. I can only imagine your frustration. There seems to be too much the medical community doesn’t know and too many instances where the actual research being done is not helping.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s