CFS Checklist - start off and check your treatment regime here
[UPDATED MARCH 2022]
Chronic fatigue syndrome is not a diagnosis - merely a group of symptoms which may have many causes. By the time someone has been ill for several years there are often several causes. The best results are obtained by identifying as many different causes as possible and tackling them all at once.
Known disease processes must first be considered. By the time people come to see me they have already had a series of blood tests. If you have not had tests done recently, then I recommend doing the disease screening group of tests (see the bottom of the page).
I used to do things one at a time in order to see what does and does not work. I now do things the other way round - treat everything I think to be important, get the patient better, then relax the regime to end up with a balance between the patient's wellness and the toughness of the regime. Indeed, there is now good evidence that mitochondrial failure is not just a part of chronic fatigue syndrome – it is also part of the normal ageing process. What this means in practice is that as we get older we can stay just as fit and just as well but we have to work harder at it and become more disciplined with respect to diet, sleep, micronutrient supplements, the right balance between work and rest, detox regimes and so on..
The following is the programme of treatment I go through with every patient. If I try to cut corners, I often end up missing important problems. The patient who thinks about their illness and works out things for themselves has the best chance of getting better. I can point you in the right direction, but you have to do the donkey work!
I suggest you print this checklist out and use it to find your way round the website! It lists the things I need to think of in the management of CFS.
Don't go on to the next stage until the earlier ones have been fully explored.
Stage 1: make sure it's CFS
- Is the diagnosis right - has known pathology been excluded? e.g. cancer, MS, autoimmune disorders. See CFS/ME - my book Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis
- The two symptoms which are common to every case of chronic fatigue syndrome/ME are poor stamina and delayed fatigue. These are explained by mitochondrial failure. CFS - The Central Cause: Mitochondrial Failure. Indeed, it is the delayed fatigue which should determine how much or little you can do in a day. If you get fatigue the next day then you have overdone things and must pace more carefully. Actually this is true for everybody – athletes who do not observe this rule develop overtraining syndrome and worsen their performance.
- Have a careful think about what caused your CFS as this will give a guide to treatment. Think about the time building up to the start of the illness, what the trigger was, which illnesses run in the family?
- CFS is a diagnosis of exclusion. Tests to exclude serious disease may be helpful, but even if they are all normal, you could still have other serious disease. The opinion of a good physician should always be taken to make the diagnosis. Recent onset of symptoms which may be worsening would suggest serious underlying disease.
Stage 2 - Observe six fundamental rules
This applies to all CFS sufferers:
- Pacing: adopt the 80% rule (which means: know what you are capable of in a day and do just 80% of that. 20% is "getting better" energy), get enough mental and physical rest. Get organised. Accept help. Arrange for deliveries to house. Delegate work. Prioritise: list the 10 most important things in your life, then ignore the last five. You can't do everything. See Getting enough rest - an essential part of managing CFS
- Sleep: quality sleep is essential to life. Don't be afraid to use tablets to restore the normal day/night diurnal rhythm. Sleep disorders. Avoid caffeine after 4pm as it will interfere with sleep. See Sleep is vital for good health - especially in CFS.
- Supplements: it takes at least 6 months for body stores to replete. Supplements are for life. Everybody, regardless of whether they have chronic fatigue syndrome or not, should take a basic package of nutritional supplements. This is because Western agriculture has resulted in food which is deficient in essential micronutrients. We then have what I call the "bolt-on extras" for specific problems. For people with fatigue syndromes there is a package of supplements to support mitochondria which one can either take empirically or, ideally, do the mitochondrial function test first to define this further. See Nutritional Supplements, CFS - The Central Cause: Mitochondrial Failure
- Diet: the two dietary problems most often linked to fatigue are a tendency to hypoglycaemia and allergy. The starting point is always the Ketogenic diet - the practical details which is of low glycaemic index and avoids the major allergens. Please see also My book The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds See also The Paleo Ketogenic Diet - this is a diet which we all should follow , The Paleo Ketogenic Diet - meals which require no cooking or preparation . The Paleo Ketogenic Diet - PK Bread and The Paleo Ketogenic Diet - PK Dairy
- Avoid infections whenever possible. At the first sign of a cough, cold or sore throat use vitamin A (not if pregnant), vitamin C, zinc, selenium and propolis. See Viral infections. If you don't believe you could have any deficiencies, then do the disease prevention screening tests. Also see Infections: how to prevent and cure – first improve the defences. See also My book The Infection Game - life is an arms race
- Do a chemical clean up: throw out all the smellies in your house, keep the house well ventilated, avoid sprays, polishes, aerosols, new paints, new carpets, gas cookers and heaters etc. See Do A Good Chemical Clean-Up.
Many of the above issues are covered in The general approach to maintaining and restoring good health. Indeed for most people this is the most difficult part of treatment and for many people all they have to do to recover! It is tempting to miss out the bits that entail major lifestyle changes and cherry pick the easier changes, but you will just cheat yourself in the long term! See also Healing the Emotional Hole in the Energy Bucket
Stage 3: fighting and nurturing
The interventions below need to be done over and above all the interventions listed in Stage 2 above.
At this stage you should consider the nutritional regime specifically designed to support your mitochondria.
Some interventions work for a high proportion of sufferers (B12 injections, magnesium injections, D-ribose, Coenzyme Q 10 etc). Do as many of these things at the same time as you can. By the time you have been ill for several years, more than one thing will be wrong - you need to tackle them all at the same time to see improvement. The priority is to get well. Once you are better, these things can be knocked off one at a time to find out which is important. See Pattern of recovery.
The manoeuvres to try, in order of importance, are:
- Feed your mitochondria - see CFS - The Central Cause: Mitochondrial Failure
- Get magnesium levels checked. See Magnesium - treating a deficiency and Magnesium test - whole blood.
- Pain: See Pain - this too is just a symptom - try to work out the cause.
- B12 injections: should be tried at some stage. Don't waste money measuring B12 levels, they are irrelevant. It is the response to injections which is important. See B12 - rationale for using vitamin B12 in CFS Make sure you are on a multivitamin containing folic acid when you have injections.
- Correct hormonal disturbances: adrenal gland dysfunction, hypothyroidism. See Common Hormonal Problems in CFS - Adrenal and Thyroid - the correct prescribing of thyroid hormones. See also Adrenal stress profile - salivary and Thyroid profile: free T3, free T4 and TSH
- Gut symptoms: getting gut symptoms right is central to getting the CFS right. Consider Fermentation in the gut and CFS and Comprehensive Digestive Stool Analysis with parasitology.
- Care with female sex hormones. The Pill and HRT worsen CFS in the long term and certainly predispose you to getting CFS because they suppress the immune system and induce nutritional deficiencies. See Female hormone profile (Oestrogen, progesterone and testosterone levels in saliva)
- Low dose antidepressants: many CFSs do well on tiny doses of tricyclic antidepressants such as amitriptyline 10mgs, dothiepin 10mgs, trimipramine 10mgs at night. In these doses I would not expect much effect on depression.
- Chronic low grade undiagnosed infection. See CFS - can be caused by chronic infection, Chronic viral presence in CFS/ME, Valacyclovir in the treatment of post viral fatigue syndrome, and Lyme Disease and other Co-infections. Also see Chronic infection – Life is an arms race – how to tackle with natural remedies and My book The Infection Game - life is an arms race
- Hyperventilation can cause fatigue. Often driven by food intolerance and low magnesium levels. Helped by relaxation techniques. See Hyperventilation - makes you feel as if you can't get your breath
- Chemical poisoning: exposure at work to organophosphates (farmers), dog and cat flea treatments, human head lice treatments, Vapona fly blocks/sprays, woodworm treatments. Contaminated water. Any silicone implants - siliconosis? Gulf War Syndrome?. Chemical poisoning often leads on to MCS. See Chemical poisons and toxins
- MCS (Multiple chemical sensitivity) Suspect if symptoms are better out of doors, better in the summer, better away on holiday. Do chemical clean up. Eat organic where possible. See Multiple Chemical Sensitivity (MCS) - a common problem and often triggered by exposure to chemicals and Multiple Chemical Sensitivity (MCS) - Principles of Treatment.
- Consider Mercury - Toxicity of Dental Amalgam - Why you should have your dental amalgams removed
Stage 4: allergy
If you are still struggling despite having tried all the above (have you? Have you really honestly done it properly?!), then it is likely your problems are caused by multiple allergy to foods, to chemicals or to moulds.
- Get mould allergy tested: either by skin tests (see practitioner list here Practitioners of Ecological (Allergy, Environmental, Nutritional) Medicine) or by going abroad to a warm dry climate, ideally for one month, but two weeks may give you an idea. Make sure that the holiday house is chemically clean. I know it is not easy, but it is important. See also Mould Sensitivity It is also possible to have a mould sensitivity test done through Acumen Laboratories and here is an example of a test result of one of my patients, Craig Robinson--- Example Mould Sensitivity Test Result
See also Chronic Fungal Infection as a cause of disease: the toxicity of mycotoxins
- Consider desensitisation such as neutralisation or my preferred technique Enzyme Potentiated Desensitisation (EPD) for foods and possibly chemicals. EPD does not work so well for mould allergy.
- Consider Reprogramming the Immune System – where conventional and complementary medicine can come together
- Consider Mast Cell Activation Syndrome (MCAS)
Stage 5: New ideas
- Consider Reprogramming the brain in CFS/ME
- Consider Reprogram the immune system with micro-immunotherapy
- Consider Retroviruses in CFS/ME and more - think retrovirus when you get stuck.
One of the problems with CFS is that it is a quack's charter! It is important to look at new ideas and treatments, but not before all the known, and tried and tested, treatments have not succeeded. Especially the psychological treatments should not be considered until the physical issues have been sorted.
Having said that, there are some people who have benefited from the following:
- Healing: Try the National Federation of Spiritual Healers Healer Referral Service (now known as 'The Healing Trust') Tel: 01604 603247. Their website can be found here The Healing Trust. Or consider healing with Seka Nikolic - expensive but effective. She is working from her clinic at 3 Rosemont Road, West Hampstead, London, NW3 6NG TEL: 0207 443 5544. You can also contact her by email: Seka Nikolic. Her website is: Seka Nikolic.
- Geopathic stress: Please contact Roy Riggs by tel: 01273732523 or email Roy Riggs Full details of Roy's services and costs can be found on his website Roy Riggs
- Imunovir - again some patients have reported improvement but it is too early to say if this is going to be useful.
- Gammaglobulin injections - I am uncertain about these - they do help some patients but they are derived from blood products and could theoretically transmit viruses and prions (BSE).
- Consider Hyperbaric oxygen therapy (HBOT)
See Tests but in particular:
- Disease screening tests
- Magnesium test - whole blood
- Adrenal stress profile - salivary
- Thyroid profile: free T3, free T4 and TSH
- Comprehensive Digestive Stool Analysis with parasitology
- Female hormone profile (Oestrogen, progesterone and testosterone levels in saliva)
- CFS - The Central Cause: Mitochondrial Failure
- Nutritional Supplements
- Viral infections
- Do A Good Chemical Clean-Up: chemicals make you fat and fatigued!
- MCS - what is it
- Magnesium - treating a deficiency
- B12 - rationale for using vitamin B12 in CFS
- Sleep is vital for good health
- Getting enough rest - an essential part of managing CFS
- Ketogenic diet - the practical details
- The general approach to maintaining and restoring good health
- Pattern of recovery
- Infections: how to prevent and cure – first improve the defences
- Common Hormonal Problems in CFS - Adrenal
- Thyroid - the correct prescribing of thyroid hormones
- Fermentation in the gut and CFS
- CFS - can be caused by chronic infection
- Chronic viral presence in CFS/ME
- Valacyclovir in the treatment of post viral fatigue syndrome
- Lyme Disease and other Co-infections
- Hyperventilation - makes you feel as if you can't get your breath
- Chemical poisons and toxins
- Multiple Chemical Sensitivity (MCS) - a common problem and often triggered by exposure to chemicals
- Multiple Chemical Sensitivity (MCS) - Principles of Treatment
- Practitioners of Ecological (Allergy, Environmental, Nutritional) Medicine
- Mould Sensitivity
- Example Mould Sensitivity Test Result
- Enzyme Potentiated Desensitisation (EPD)
- Reprogramming the Immune System – where conventional and complementary medicine can come together
- Reprogramming the brain in CFS/ME
- Mercury - Toxicity of Dental Amalgam - Why you should have your dental amalgams removed
- Hyperbaric oxygen therapy (HBOT)
- CFS/ME - my book Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis
- My book The PK Cookbook - Go Paleo-ketogenic and get the best of both worlds
- Chronic Fungal Infection as a cause of disease: the toxicity of mycotoxins
- Reprogram the immune system with micro-immunotherapy
- Retroviruses in CFS/ME and more - think retrovirus when you get stuck.
- Mast Cell Activation Syndrome (MCAS)
- Healing the Emotional Hole in the Energy Bucket
- My book The Infection Game - life is an arms race
Please also see Dr Teitelbaum's useful website, located here
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Postscript - Groundhog Regimes
Overlaying all this, I have developed general strategies for good health, and for dealing with both acute and chronic infections. Please see:
- Groundhog BASIC – what we should all be doing all the time
- Groundhog ACUTE - put in place at the first sign of any infection
- Groundhog CHRONIC – the starting point to treat any chronic infection AND to live to our full potential
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