If any disease state demonstrates the fallacy of symptom-based medicine, it’s CFS. This all-consuming problem typically describes an extreme lack of energy sustained over a period of several months and can see individuals unable to work or exercise. Beyond that, it can severely hamper brain function. It is no wonder that so many want to know if they will recover and when.
Before discussing such a subject, we should acknowledge that CFS is not a disease. Unlike say osteopenia, tonsillitis or pleuresy (which describes specific maladies with specific causes), CFS is simply a label used to describe people who have ‘similar’ symptoms.
Consequently, you should IGNORE anyone who talks about The Best Things For CFS, or How Many People With CFS Recover, or anything else that generalises this group. They are often talking about a bunch of people with totally different metabolic terrains – yes, they’re all tired and yes, they’ve all got brain fog. But that’s where the similarities end; the causes will vary greatly.
To illustrate this message, let’s imagine a new disease state labelled VDS (Very Dizzy Syndrome). Dizziness can be caused a a variety of imbalances, including:
– low blood sugar
– low adrenal function
– poor function of cholinergenic neurons
– spinning around too fast on an office chair for too long
That’s 6 potential causes of dizziness. Now let’s say you notice some severe dizziness that won’t go away. You go to the doctor and he tells you that you have “VDS” and that the only treatment for VDS is spinning you anti-clockwise on an office chair.
Now this treatment for VDS may work, but ONLY in those who became dizzy due to spinning clockwise on an office chair. Everyone else will find that this treatment does nothing for them, or makes them feel dizzier. So what next? Visit internet forums for support? “Eating regularly with a specific ratio of carbs/fats/proteins is THE cure to VDS”… “How I cured my VDS with salt and water”… etc. These approaches will work for you ONLY if you share the same root causes and same metabolic balance.
This is possible but unlikely; rehydrating might work for some, but what about the individuals whose dizziness was down to poor cholinergenic function? Or those people with adrenal imbalance? Or those whose dizziness was caused by several issues at once?
All of these individuals will not get better because the root causes of their problems have not been addressed. Yet doctors will tell them that ‘the treatment works… so you must be depressed or stressed or both’. Or they warn that ‘you can’t expect to get better, you will just have to live with it’.
This is a particularly negative message. Clinics offering mainstream treatment of ME/CFS report improvement rates of around 20% after a year. Some Australian studies produced a recovery rate of just 6%. After 3 years. But this is rubbish. These figures are not ‘recovery rates’, they are ‘ recovery rates when CFS sufferers follow the same well-trodden path’. This means rest, graded exercise and anti-depressants. It may involve a visit to a nutritionist who gives you second-hand suggestions for a mountain of lotions and potions, or an ‘ME specialist’ who does a sloppy heavy metal cleanse or bumbles through an adrenal stress index test*. In all cases, many of the more common causes are never even investigated, and the possibility of multiple/simultaneous dysfunctions is paid mere lipservice on the hunt for THE cause. Shoddy treatment, shoddy results.
Doing the sort of work I do, I regularly see individuals who have seen 8 or 9 other practitioners before me and have ‘tried everything’. But rarely have they covered the starting points:
– adrenal stress index
– steroid hormone balance (a full test, including SHBG, not just a single point testosterone/estrogen test)
– assessment of thyroid system (the system, not the gland)
– dysbiosis, malabsorption and intestinal wall integrity
– neural inflammation and oxygenation
– integrity of the blood-brain barrier
– neurotransmitter balance and receptor sensitivity (ie. phospholipid status)
– sensory gating/function of the trigeminal nerve
– food allergies
– sleep quality, including assessment of slow-wave and REM sleep
– reactions to food chemicals such as glutamates, polyphenols, free thiols, oxalates, lectins, etc
– mineral status (especially magnesium and iodine)
– mitochondrial function
Often I see individuals that have covered 1-2 of these, occasionally 3. Never have I seen individuals on a first consultation that have got close to assessing even half of these important factors. Never have I seen individuals who were measuring these factors in the right order (there are some things, such as neurotransmitter balance, which are fairly pointless to measure if you are yet satisfied with the balance of adrenal/sex hormones).
It is only by addressing the RIGHT things (in the RIGHT order) that we can determine what are the driving factors behind the symptoms and then take the appropriate action. And only then can we see a progressive and sustained improvement.
When you do this, you find the causes (plural – there is NEVER just one). When you find the causes, you get better. Importantly, I have never once made it all the way through the list I laid out above; individuals have always achieved improvement before the investigations have been exhausted. This is not to say my success rate is 100% – this is largely impossible, as some patients have not seen through treatment and some have not applied my recommendations – but I am yet to meet anyone that cannot be helped.
In summary, I get excellent success with CFS sufferers specifically because I never treat CFS. There is no such illness as CFS, simply a broad variety of underlying imbalances that create symptoms that doctors place under the CFS umbrella. Consequently, I cannot generalise when it comes to recovery rates but can offer the following as guidelines:
– I would be surprised if the individual did not feel noticeably better within 3 weeks of the initial consultation
– it would be unusual if the individual was not feeling ‘ decent’ after 6 months. By decent, I mean ‘better but not perfect’, at the threshold of considering full-time work but still sensitive to stressors, and in a state whereby they can live like everyone else around them and no-one would ever notice a difference.
– feeling ‘perfect/fixed’ tends to occur in 12-24 months, depending on the exact issues at play and the individual metabolic balance. It is rare but, on some occasions, this can occur within just a few months.
*this is not to say that these tests are not useful, far from it. But I see huge errors in interpreting Adrenal Stress Index tests all the time. And trying to conduct a heavy metal cleanse on a patient with an over-active immune system is just plain stupid.