What are my chances of recovery from CFS/ME?
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The key point to remember about chronic fatigue syndrome/ME is that it is a symptom which may have many causes. The aim is firstly to identify those causes and then put in place the necessary treatment regimes and allow time for those regimes to work. In theory this should work extremely well, but what happens in practice?
I regularly audit my practice to see how well patients are doing. The first audit into the efficacy telephone consultations has just been completed by the British Society for Ecological Medicine. These were done for patients who were too ill to come and see me, but who consulted me by telephone. They had sent me a detailed questionnaire with respect to their medical history, I had reviewed any tests they’d had done and perhaps ordered others, we had spoken for one hour by telephone, a treatment plan had been put in place and the GP informed. Initially these patients were followed up at six months. At this point, their response to treatment was rather equivocal with half seeing some modest improvements, but no glaring successes. I suggested to the BSEM audit team that perhaps the improvements were not noticeable because these telephone consultations were with, by definition, very sick patients. Perhaps it was simply a case of time and further follow up should be arranged? So this is what we did and two years down the line these same patients were contacted. Of the 21 questionnaires sent out we received responses from 17.
This second batch of figures were very much more encouraging. Fourteen out of the seventeen had seen worthwhile improvements with some back to almost normal activities, albeit with pacing. Three out of the seventeen had remained about the same. None of the patients had been made worse.
Essentially these regimes involved:
- Pacing http://www.drmyhill.co.uk/wiki/Getting_enough_rest_-_an_essential_part_of_managing_CFS
- Stoneage diet http://www.drmyhill.co.uk/wiki/Stone_Age_Diet_-_this_is_a_diet_which_we_all_should_follow
- Correction of the fermenting gut http://www.drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
- Standard package of nutritional supplements, http://www.drmyhill.co.uk/wiki/Nutritional_Supplements_-_what_everybody_should_be_taking_all_the_time_even_if_nothing_is_wrong
- Sleep hygiene http://www.drmyhill.co.uk/wiki/Sleep_is_vital_for_good_health_-_especially_in_CFS
- Interventions to improve mitochondrial function (more nutritional supplements and/or detox regimes), http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
- Correct thyroid function, http://www.drmyhill.co.uk/wiki/Thyroid_-_the_correct_prescribing_of_thyroid_hormones
- Correct adrenal function http://www.drmyhill.co.uk/wiki/Adrenal_Gland_-_the_gear_box_of_the_car_%28DHEA_and_cortisol%29_%E2%80%93_underactive
It is common to see initial worsening as people start the regimes for all the reasons iterated in http://www.drmyhill.co.uk/wiki/Getting_worse_on_the_regime_of_Stone_Age_diet_and_micronutrient_supplements_
when_these_interventions_should_make_you_better!
For those patients who did not see improvements, it is possible that this is due to chronic low grade viral infection. There are possible strategies here, so please see http://www.drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome#Post_Viral_CFS_
may_be_due_to_low_level_chronic_infection_with_Epstein_Barr_Virus_or__.22Mono.22_and_others
And also http://www.drmyhill.co.uk/wiki/Oxymatrine_in_the_treatment_of_post_viral_fatigue I am also researching the possibility of using neem which is a botanical anti-microbial which may have widespread application.
The second study which is significant is my ongoing audit of patients who have had repeat mitochondrial function tests. I have to say these tests have been extremely useful in managing CFS – there is no doubt that mitochondria dysfunction is a central player here, as demonstrated by the paper I produced with Dr Norman Booth and Dr John McLaren Howard (Ref:http://www.ijcem.com/files/IJCEM812001.pdf). What this paper showed is that the worse the disability, the worse the mitochondrial function and of course vice versa – indeed this is a very useful way of assessing patients objectively and helpful for application for benefits. Some patients who had first tests, we then went on to do follow up tests and what is so interesting is that these tests improve reliably well. Broadly speaking there can be problems either because of nutritional deficiencies, or because of toxic stresses blocking enzymes in mitochondria and both are amenable to treatment either by giving a regime of nutritional supplements and by doing detoxification regimes to reduce the toxic load.
In the early stages of improving mitochondrial function, sometimes this is not necessarily accompanied by clinical improvement. My guess is that the reason for this is that in chronic fatigue syndrome there is a great deal of tissue damage and this is evidenced by the very high cell free DNAs we see in these sufferers. Clinically it looks as if early gains in mitochondrial function go to fuel energy delivery to the immune system to help with the process of healing and repair. Once the healing and repair is effective and the cell free DNA comes down to more normal levels, then the patient gets energy to allow them to have a life! See: www.drmyhill.co.uk/wiki/Pattern_of_recovery.
It is never easy recovering from CFS/ME. The regimes are difficult with respect to diet, nutritional supplements, detoxing regimes and lifestyle interventions. However, once put in place and held there, the regimes represent a blueprint for good health for life! Once recovered, all the regimes recommended will help protect one from western diseases associated with western lifestyles such as diabetes, heart disease, cancer and degenerative conditions. The point here is that there is a life beyond CFS/ME and there is no reason why it should not be a good one!