Chances of recovery
What are my chances of recovery from CFS/ME?
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 of telephone consultations was completed by the British Society for Ecological Medicine (BSEM). This audit was 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 being 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.
What has to be done
Essentially these regimes involved:
- pacing - see Getting enough rest - an essential part of managing CFS
- Stone Age diet - this is a diet which we all should follow. More often I now prescribe the ketogenic diet - please see Ketogenic diet - the practical details and My book The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds.
- correction of the fermenting gut - see Fermentation in the gut and CFS
- standard package of nutritional supplements - see Nutritional supplements - what everybody should be taking all the time even if nothing is wrong
- sleep hygiene - see Sleep is vital for good health - especially in CFS
- interventions to improve mitochondrial function (more nutritional supplements and/or detox regimes) - see CFS - The central cause: mitochondrial failure
- correction of thyroid and adrenal function - see Thyroid - the correct prescribing of thyroid hormones and Adrenal Gland - the gear box of the car (DHEA and cortisol) – underactive
If you get worse on the regimes
It is common to see initial worsening as people start the regimes for all the reasons iterated in Getting worse on the regime of Stone Age diet and micronutrient supplements when these interventions should make you better
If the regimes do not work
For those patients who did not see improvements, and for very ill patients, it may take 1-2 years to see a change for the better. It is possible that this is due to chronic low grade viral infection. There are possible strategies here, so please see Valacyclovir in the treatment of post viral fatigue syndrome
And also Oxymatrine in the treatment of post viral fatigue. I am also researching the possibility of using neem, a botanical anti-microbial which may have widespread application. Finally, for a more natural way of tackling chronic infections please see Chronic infection – Life is an arms race – how to tackle with natural remedies
How well do the supplements and detox regimes to support mitchondria work?
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 applications for benefits such as ESA, DLA and PIP. Some patients who had had initial 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 by giving a regime of nutritional supplements and, where necessary, by doing detoxification regimes to reduce the toxic load.
Sometimes, in the early stages of improving mitochondrial function, 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! Please see Pattern of recovery for more detail on this topic. In 2013, I co-authored a follow up paper with Norman Booth and John McLaren-Howard, the third of my published papers, which comprised a clinical audit of patients who had followed my treatment protocol. Please see here for more detail regarding the paper -- Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – a clinical audit. Those patients with good protocol compliance improved both their 'mitochondrial score' and their ability levels.
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 the CFS sufferer has 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!
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