CFS Checklist - start off and check your treatment regime here

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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.
  • 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.
  • 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.
  • 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 and Mitochondrial Function Profile.
  • Diet: the two dietary problems most often linked to fatigue are a tendency to hypoglycaemia and allergy. The starting point is always the Stone Age Diet which is of low glycaemic index and avoids the major allergens.
  • 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.
  • 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!

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 having the Mitochondrial Function Profile and bring into your recovery plan the nutritional regime specifically designed to support of the 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 below CFS - the Central Cause: Mitochondrial Failure.
  • Get magnesium levels checked if you are not doing the Mitochondrial Function test. See below Red cell magnesium test, Treating magnesium deficiency.
  • 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 CFS and B12 - rationale for using vitamin B12 Make sure you are on a multivitamin containing folic acid when you have injections.
  • Correct hormonal disturbances: adrenal gland dysfunction, hypothyroidism.
  • Gut symptoms: getting gut symptoms right is central to getting the CFS right. Consider Fermentation in the gut and CFS.
  • Care with female sex hormones. The Pill and HRT worsen CFS in the long term and certainly predispose to getting CFS because they suppress the immune system and induce nutritional deficiencies.
  • 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.
  • Hyperventilation can cause fatigue. Often driven by food intolerance and low magnesium levels. Helped by relaxation techniques.
  • 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 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.

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) 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.
  • 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.

Stage 5: New ideas

One of the problems is 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 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 Referal Service Tel: 0845 1232767, or consider healing with Seka Nikolic: expensive but effective. Contact The Kailash Centre, 7 Newcourt Street, London NW8 7AA. Tel: 0207 722 3939 or Hale Clinic tel: 0207 637 3377. Seka now has a website: Seka Nikolic.
  • Geopathic stress: contact Alf Riggs, who visits the home and charges £80 plus his travel expenses, tel: 01233 620 036.
  • 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).

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