Studying health instead of disease
That was the motto of an informal but far reaching international study that I lead in 2006 into the devastating illness known variously as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Deficiency Syndrome (CFIDS), Myalgic Encephalopathy/Encephalomyelitis (ME), or most recently Systemic Exertion Intolerance Disease (SEID).
Titled the CFS/ME/CFIDS International Recovery Register, the study sought to discover how those who had successfully recovered from this condition had done so.
The chief problem for patients at that time was extremely basic – getting their illness taken seriously by mainstream medicine.
It’s a personal bugbear of mine that too many doctors back then, and only slightly fewer today, would sweep real physical illnesses into a catch-all psychogenic basket. “It’s psychological.” [Brush…]
In translation, “I don’t know what’s causing your condition, but I read something about psychology so it must be that. Off you go now.”
Whether it’s ego or ignorance will depend on the individual. Certainly it’s cavalier, somewhat insulting, and deeply unhelpful. That’s not to say that the psychology field has nothing to offer CFS recovery, as you will see shortly, but that’s a world of difference from asserting that a condition is in someone’s head or entirely emotional.
Running a close second in terms of difficulty for patients, was that even those doctors who did take the condition seriously and were working hard towards a solution, were flying blind without research data to elucidate the aetiology. Each patient was an n=1 longitudinal experiment.
Thankfully, research funds have been increasingly devoted to this condition, but we still have limited insights for guiding doctors with treatment.
Hence the Recovery Register‘s angle – if we can’t figure out the cause in short order, then let’s use our time productively by trying to figure out the cure.
The results were published on my clinic web site a few years later, but this article you are reading now updates that report and makes specific current recommendations for patients pursuing recovery.
For context, below 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 ME/CFS/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 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, ME/CFS 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.”
The Recovery Register collects comprehensive data about ex-patients’ symptoms, remedies which they tried but failed, and details of their eventual recovery.
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 was certainly interesting enough to make one sit up and listen.
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 stress be relevant to recovering from a disease that’s most likely caused by a pathogen, toxin or faulty microbiome, or a metabolic, endocrine or nervous system dysfunction? I will explain in a moment.
Some also attributed their recovery to finding faith — to religion. I made a bold re-interpretation of that and bundled 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. Yes, I said physiological effects.
Hold it right there. What’s all this stress mumbo jumbo? Well, what most people don’t understand is this:
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 essentially the same biochemistry.
So 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.
No-one feels insulted when it’s suggested that athletic over-training, or a bout of Glandular Fever, may contribute to CFS. It should be no different when it’s suggested that severe emotional stress can have a similar effect.
Consider that we now know this, for example:
Just 5 minutes of anger can depress your immune system for up to 6 hours.
That tells us that not having learned to remain calm puts you at a tremendous disadvantage. It makes you more vulnerable to pathogens that might cause CFS, and makes it much harder for your body to fight them off once infected.
It’s a similar issue with chronic anxiety or depression – though I appreciate that CFS itself is liable to induce depression, and often anxiety. Your body is spending most of its time in defence/survival mode, instead of growth/repair mode. Both modes cannot operate at the same time, just as a light can only be either on or off, never both.
For chronic illness, chronic stress puts you at a chronic disadvantage. There is simply no window of opportunity your body can leverage to take a really good run at recovery.
This does not mean that learning to be zen-like will be a cure-all for everyone with CFS. I very much doubt that. Lyme borreliosis and its close relatives, pathogens which may be behind many cases diagnosed as CFS, infect even the most tranquil among us.
What it does mean is that learning to be more zen-like at least gives your body a fighting 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 control subjects 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 is looking like our era’s Penicillin.
Anecdotally, because I’m considered a ‘friendly’ on the CFS circuit, I have had many psychological counselling clients with CFS. All experienced improvements in their symptoms across time, and at least one post-viral case achieved an apparent full recovery – not just by my hand of course, as most were also deploying, with my enthusiastic support, a multitude of wellness strategies.
It is interesting, though, that all of them had a psychological profile characterised by unusually high diligence or perfectionism – traits which, when taken to the extreme, must have been placing higher than normal demands on their immune, nervous and endocrine systems, diverting critical resources.
Learning to de-stress may not be the whole answer for you. I suspect that it’s similar to excellent nutrition — incredibly helpful, but not a solution all by itself.
Still, do take heed that those who have gone before you with CFS 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.
Strategies for CFS recovery
Because there can be many causes for a given set of symptoms, it’s necessary to be broad-minded and multi-faceted in your approach to resolving your CFS. Based on working directly with CFS patients, my current recommendations include…
- Comprehensive Thyroid function testing. Thyroid problems can mimic many facets of CFS. Run-of-the mill Thyroid testing may not reveal the true extent of Thyroid problems, so I recommend finding an integrative/functional medicine physician who can test this thoroughly.
- Standard blood testing for all of the usual suspects, with an emphasis on directly energy-relevant factors such as ferritin, B12 and folate, plus Vitamin D and inflammatory, autoimmune or infection indicators.
- Test for Coeliac Disease and intolerance of related gluten-like peptides.
- Test for, and treat, chronic infections such as Lyme Disease and its close relatives, plus mycoplasma, etc. These infections, and doctors inclined to test for them, can sometimes be hard to find. Be persistent.
- High quality, micronutrient-dense food, plus relevant supplements and nutraceuticals. You are likely to get the best advice on this from an up-to-date specialist nutritionist or integrative/functional medicine physician. Ordinary dietitians, such as those attached to hospital services, may not have the richness or recency of knowledge required.
- Treat any underlying candida (fungal) infections.
- Participate in psychological therapy with two points of focus: 1. Resolving anger, anxiety, perfectionism, low mood or generalised stress – i.e. Anything that interferes with your capacity to get well by wasting critical immune, endocrine or nervous system resources. 2. Coaching and support for managing the work, family, social and emotional challenges that living with CFS entails.
- Decompress your life. Make structural changes to your domestic, work/school and social lives, to give yourself more time and far fewer demands. This has to be done. I know it’s far from easy, but it’s essential. Work with your psychologist on how.
- Rest. If your body is telling you to lie down, do it. Don’t let your intellect force you to override biological imperatives. On such fundamental matters, your body knows best. It is, after all, millions of years old (so to speak). Many sufferers use a structured method for managing their energy ‘credits’ and ‘debits’ called pacing. You may like to investigate that and try it.
- Find a CFS buddy. Being able to speak freely with a fellow CFS sufferer who understands what you are dealing with, will help to protect your sanity and prevent feelings of isolation. For example, Emerge Australia coordinates CFS peer support.
- Detoxification diet followed by careful reintroduction of various foods. This requires specialist guidance by a competent nutritionist or integrative/functional medicine physician. Do not embark upon this on your own.
- Graded exercise – at the right time. Doing this too soon in your illness may be inappropriate and demoralising. At the right time, once you have had glimmers of improvement, your body may respond to very gentle, calculated, increasing demands being placed upon it.
The idea is to create a critical mass of wellness – enough for your body to be able to get a fingerhold. From there, it should gradually take the reins and recovery will pick up momentum.
The best news of all
Perhaps the most wonderful thing to emerge from the Recovery Register study was the collection of stories from 7, 12 and even 20-year CFS veterans who were able to report 70-90+% recovery, after such long periods under the CFS cloud. In other words…
Yes, long-term recovery does happen
That’s why, although I won’t tell you to never lose hope because I know that occasionally you will, I can confidently recommend that you never, ever give up.
More recovery stories and research
Even though the Recovery Register work is long finished, I would love to hear from anyone else who’s found the right key to turn for their CFS, and has recovered or almost so. If you’d like to, please tell other sufferers your success story in the comments below.
Or, if you’ve come across new medical research that may help other CFS sufferers, please post that too.