CFS International Recovery Register study results

Themes among those who have recovered from chronic ME
CFS International Recovery Register study results

Studying health instead of disease.

That was the motto of an informal but far reaching international study conducted in 2006 into the devastating illness known as Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.  The CFS/ME/CFIDS International Recovery Register study sought to understand those who had successfully recovered, and to what they attributed their recovery.

This article summarises the key results of the research and proposes an explanation.

To begin, here is the original press release from 2006:

This little understood disease has no known cure and often strikes people in their prime, leaving many debilitated for several years or even decades.

Says the study’s author, Stephanie Thompson, Director of Insight Matters in Australia, “Decades of research and millions of dollars have gone into studying the cause of this debilitating condition in the hope of finding a cure, but still we don’t have a clear answer.

It seems to me that an equally if not more important question is now to ask “What has caused the people who have recovered, to recover?”.

Thus was born the CFS/ME/CFIDS International Recovery Register, an online questionnaire for gathering data from recovered patients.

Thompson makes the point that medical research often misses key information by looking in the wrong place.

Scientific study of the mechanisms and pathogenesis of disease is interesting and very important, but not more important than the grossly neglected field of recovery research”, she says.

What chronically ill patients really want to know is how to get better.  No-one’s been following recovered patients.  They just get better and quietly disappear.

This is a disease close to Thompson’s heart.  Though a Psychologist with a passion for Health Psychology, she says that this study actually has little to do with her profession.

I understand the research process and how to measure human experience, hence the questionnaire, but the main driver is having someone close to me who’s suffered from CFS for over a decade.

In fact, until very recent times, CFS/ME/CFIDS patients have often been brushed aside by doctors, effectively accused of psychological malingering.

It’s certainly not all in their heads!”, emphasises Thompson.  “Some of these patients are almost laid to waste by physical symptomatology, and there are plenty of biochemical markers that we now know about.

The Recovery Register collects comprehensive data about ex-patients’ symptoms, remedies which they tried but failed, and details of their eventual recovery.

Results

As might be expected for such a confounding condition, or set of conditions, results were very varied.  However, one theme stood out from the data as a common story behind numerous cases of recovery.  It's not enough to qualify as ‘scientific proof’ due to the limits of the study design, but is certainly interesting enough to make one sit up and listen very carefully indeed.

Before I explain what it is, let me make something very clear…

Yes, I am a Psychologist.

No, I do not believe that CFS is all in your head, or that it's caused by some froo froo psychological factor or bad attitude.   That is frankly ridiculous and offensive.

I have had many clients with CFS who have encountered these frustrating, belittling beliefs from medical practitioners.  I do understand how that's enough to inspire you to muster your last scraps of energy, stand up and throw a decent punch.

I am acutely aware that those with CFS are not making it up.  I have not the slightest doubt that it is a very real physical condition, almost certainly with a pathogen, toxin or endocrine dysfunction at its foundation.

I am on your side.

Is that clear?!

Right.  With that firmly in mind, the results of the study…

The most universal theme reported by those in the Recovery Register study was that their CFS turned a positive corner when they learned how to reduce stress.

Why might this be relevant to recovering from a disease caused by a pathogen, toxin or endocrine dysfunction?  Hang on in there, I will explain in a moment.

Some also attributed their recovery to finding faith — to religion.  I'm going to make a bold re-interpretation of that and bundle it under reducing stress.  Finding peace by any means, whether it's learning psychological de-stressing techniques or adopting an attitude of faith, will have the same physiological effects.

Hold it right there.  What's all this stress mumbo jumbo?

What most people don't understand is that the body responds to psychological stress, such as having an excessively demanding job or placing extreme performance demands upon oneself, in almost exactly the same way that it responds to a physical stressor such as an injury, infection or over-training.

It's the same biochemistry.

We may think there's a difference between these types of stress, but our bodies do not.  They secrete the same hormones and set up the same physiological coping responses regardless of whether a stressor is physical, psychological or environmental.

Yet no-one throws their arms in the air and storms out when it's suggested that over-training may contribute to CFS.

Now consider that we know, for example, that just 5 minutes of anger will depress your immune system for 6 hours afterwards.

That tells us that not having learned to be calm puts you at a tremendous disadvantage.  It makes you more vulnerable to pathogens that may cause CFS in the first place, and makes it much harder for your body to fight them off once infected.

It's the same with severe anxiety or depression.

For chronic illness, chronic stress puts you at a chronic disadvantage.  There is simply no window of opportunity your body can leverage to make a really serious attempt at recovery.

This doesn't mean that learning to be zen-like will be a cure-all for everyone with CFS.  I very much doubt that.  Lyme borreliosis, which may be behind many cases labelled as CFS, infects even the most tranquil among us.

What it does mean is that learning to be more zen-like at least gives your body a flighting chance — an opportunity to do its best work.  You'll be shifting the odds significantly in your favour, not to mention having a nicer life along the way.

This effect is not small, by the way.  Longitudinal research by Grossarth-Maticek and Eysenck showed that…

In a study of almost 6000 middle-aged people, those with the highest emotional self-regulation abilities were 50 times[!] as likely to be alive and without chronic illness 15 years later than those with the lowest self-regulation scores.

The same researchers then tried teaching self-regulation skills to a study group and followed them for six years.  They proved that a few days spent learning how to control emotion produced dramatic improvements in health and longevity, compared with matched controls who had no such training.

I can't think of any other medical or health intervention that even comes close to the kinds of figures we are talking about here.  Emotional self-regulation looks like the new Penicillin.

Anecdotally, because I'm considered a 'friendly', I have had many psychological counselling clients with CFS.  All experienced marked improvements in their symptoms and at least one post-viral case achieved an apparent full recovery.  The only change was learning to calm down, cheer up and de-stress their lives, and of course the passage of time.

Learning to de-stress may not be the whole answer for you.  It may be similar to excellent nutrition — it's very, very helpful, but not a solution all by itself.

But take heed that those who have gone before you with chronic ME and recovered from it, say that learning to de-stress was highly relevant to that outcome for them.  In the study it was the only prominent theme, so you'd be a fool not to include it in your arsenal against this condition.

Good news — long-term recovery does happen

Also extremely encouraging in the results of the Recovery Register was reading cases of sufferers recovering after many years, and in a few cases after decades, of being under the CFS cloud.

So I won't say never lose hope, but I will say never, ever give up.

Stephanie Thompson  
@StephCThomp

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