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Treatment for ME/ CFS – Dr Vinod Patel
ARTICLE EXCERPT POSTED FROM MEPOSITIVE
“The main treatments that I find useful are as follows, however, it must be pointed out that none or all of these treatments may work in any specific patient and indeed, a lot of the treatments listed below do not work at all in some specific patients. I can definitely conclude that at least 50% of my patients have benefited from the treatments below, either in isolation or with one or more of the other treatments in the list.
- Pacing; Pacing allows patients to use their energy levels “wisely”. If, for example, I am capable of doing a 45 minute brisk walk during the day, there is absolutely no way that I would not suffer after doing a 2 hour brisk walk. It is therefore particularly important to know the limits of ones physical activity. I have found that a pedometer works in some patients to work out personal limits.
- Amitriptyline; Low dose Amitriptyline at night often helps with sleep and also reduces night pain.
- Nortriptyline; Nortriptyline is a treatment that is related to Amitriptyline, however it probably has better efficacy in moderate to severe fibromyalgia. It also allows a better quality sleep at night. Clearly if patients have side-effects such as sedation, it may well be that Nortriptyline or Amitriptyline is only used at night (or not at all).
- Gabapentin; Gabapentin is very useful, as is Amitriptyline and Nortriptyline, for neuropathic pain. I have also used Gabapentin for myoclonic jerks in patients to good effect.
- Melatonin; Melatonin is a very interesting agent and is a natural sleep hormone that we all have. Melatonin is very useful in patients with a poor sleep pattern. I normally only use 2 -5mg at night, 4 days a week, so that the patient does not become dependant on Melatonin. In some patients there has been a dramatic improvement. Other drugs such as Zopiclone can also be used to improve sleep.
- Duloextine; Duloextine is very good for severe neuropathic pain. It also has anti-depressant actions (as do Amitriptyline and Nortriptyline to some extent). This relatively new agent has had a dramatic effect in one or two of my most severely affected patients with neuropathic pain or even very severe fibromyalgia.
- Testosterone Replacement; Testosterone replacement has been helpful in both men and women to give stamina and often a positive general outlook.This can only be used in patients who have low testosterone levels which have been tested at least twice. In the majority of cases treatment can be given with injections or a gel.
- Cognitive Behavioural Therapy; Cognitive behavioural therapy also helps many patients, however, its availability is very limited locally.
Treatments are often based around diagnosing specific conditions that can mimic ME/CFS. These include the following:
- Thyroid disorders: treated with thyroxin or thionamides.
- Adrenal Insufficiency: treated with low dose steroids.
- Postural Hypotension treated with fludrocortisone.
- Low testosterone states as above.
- Calcium disorders: treated with calcium, vitamin D.
- Coeliac Disease: treated by eliminating gluten from diet.
- B12/Folate deficiency: treated by replacement of these vitamins.
- Pyridoxine supplementation: especially if symptoms relate to periods.
- Low potassium states: treated by diet and or potassium replacement.
- Myasthenia Gravis: specific disorder of neuro-muscular junctions.
- Systemic Lupus Erythematosus: treated by rheumatologists.
- Reactive Hypoglycaemia: low glucose states treated by diet.
- Depression and Neuropathic: a rare diagnosis, citalopram useful.
- Sleep Apnoea: treated specifically with weight loss and special mask.
- Obesity: carrying extra weight can increase tiredness.
- Rheumatological Disorders: specific diagnosis and treatment.
It is also important to stop certain drugs that cause tiredness, for example, statins, codeine, Tramadol, other pain killers, cannabis. At this point I would also like to state it is very difficult to give general advice on pacing and I prefer that the majority of our patients are seen by our Occupational Therapist or Physiotherapist for specific personalised advice on pacing after a detailed history on activities of daily living and physical activity patterns is established.”
Related articles
- Why Am I So Tired? – 7 Medical Causes of Fatigue! (chronicfatiguetreatments.com)
- Study finds older men more likely to lose the ability to orgasm due to gabapentin (medicalxpress.com)
Causes of CFS – Toxins. A Discussion …
Toxic causes of CFS: Organophosphate Poisoning, Silicone, Carbon Monoxide, Mercury and Others?
Recognising The Problem and Typical Symptoms
For patients with CFS, the cause is often either viral or “I don’t know”. It is thought by some that many of the “I don’t knows” could be cases of poisoning either by organophosphates, silicone, carbon monoxide, sick building syndrome (formaldehyde, volatile organic compounds etc) and so on. Furthermore many patients with post viral CFS may have been poisoned by some chemical which weakened the immune system so that it was unable to cope adequately with a subsequent viral infection. Some potential causes of include:
- sheep dipping,
- spraying agricultural chemicals,
- being sprayed by tractor or helicopter and spray drift,
- working in a chicken farm (fumigation, control of parasites),
- working in the sea of factory farmed salmon in Scotland (where chemicals are used to control fish lice),
- repeated head lice treatments,
- house fumigations for flea control or bed bugs,
- handling flowers (many are imported from overseas and are heavily sprayed)
- insect control in hot countries with DDT, OPs etc,
- control of sand flies (Gulf War Syndrome),
- greenhouse fumigations,
- working in a research plant centre where chemicals were weekly used to prevent cross contamination,
- ‘A’ level student doing a biology project with pesticides,
- carpet factory where fleeces are washed after sheep have been dipped,
- lorry driver delivering OPs to farmers,
- Government Inspectors in sheep markets,
- dairy farmers daily exposed to OPs for fly control in the milking parlour,
- poisoning through exposure to dumped cans of sheep dip,
- welders working in a factory which was manufacturing OPs, timber
- treatments in houses,
- treatment of external parasites in dogs, cats, cows (OP pour ons) and so on.
There are many other occupations where people are exposed to chemicals, but incidents are often forgotten.
Silicone as a trigger for CFS
May silicone protheses have biologically active materials. Examples include:
- testicular implants,
- lens implants,
- Norplant contraceptive device (silicone rods),
- TMJ work,
- facial contouring,
- meshes for hernia repairs etc.
In the veterinary world reactions to suture materials are well documented – not so in the medical world.
Burnt Organic compounds
This often goes into the category of carbon monoxide poisoning but actually it is the burnt organic compounds whihc cause the long term damage. Think of
- Aerotoxic syndrome – poisoning caused by fumes – affects pilots, cabin crew and passengers!
- old central heating,
- condensation suggesting blocked chimneys,
- free standing gas fires which do not vent to the outside
Volatile organic compounds
- building projects,
- poultry and egg rearing (formaldehyde)
- manufacturing industry,
- paints,
- new carpets,
- printing industry,
- photographic industry
- “sick building syndrome” and so on.
Other problems from chemical poisoning
These toxic patients present with a chronic fatigue syndrome and it is largely this which prevents them from working. However these chemicals are extremely toxic to other parts of the body and may also cause:
- Damage to nerves – Central nervous system (psychological problems, psychiatric, sleep, brain fog etc) autonomic nervous system (sweating, temperature control, hyperventilation, etc) and peripheral nervous system (numbness, tingling etc).
- Damage to bones – osteoporosis, abnormal bone biopsies, abnormal bone metabolism.
- Damage to the immune system – allergies, autoimmune disorders and multiple chemical sensitivity (and of course CFS). Tests often show immune damage.
- Damage to the heart – particularly the electrical conduction system producing arrhythmias
- Damage to the endocrine system – abnormalities of the hypothalamic-pituitary-adrenal axis, thyroid damage, sex hormones
- Probable damage to the liver
These chemicals are also carcinogenic, teratogenic (damage to the unborn baby), and damage sperm causing low sperm counts and infertility.
Further information from Pesticide Action Network UK and their contact page.
Related Tests
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References
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Related articles
- New Consensus Criteria for ME/CFS (fightingfatigue.org)
- Causes of Chronic Fatigue Syndrome (curesfibromyalgia.com)
- Where next for chronic fatigue after XMRV a bust (mindhacks.com)
- Carbon Monoxide Poisoning (socyberty.com)
- Brain Fog in Chronic Fatigue Syndrome and Fibromyalgia (psychologytoday.com)
- Magnesium: Maybe Your CFS Cure? (connectwithwellness.wordpress.com)
- XMRV Not Associated with Chronic Fatigue Syndrome (theness.com)
- Chronic fatigue research: life after XMRV (nature.com)
Chronic Fatigue Syndrome and M.E. 