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Chronic Fatigue Syndrome

Stepping In To The ‘Minefield’ Of Finding The Right Treatment For Chronic Fatigue Syndrome


Date: 18/06/09
 
What are the treatment options for someone suffering from Chronic Fatigue Syndrome / Myalgic Encephalomyelitis CFS/ME? Part of the answer probably lies with the doctor that gave the diagnosis or whether a medical diagnosis has been made at all. (Most sufferers still struggle to get their condition recognised by their GP and travel from doctor to doctor in an effort to get a proper diagnosis.) If you are lucky enough to get a sympathetic doctor and a positive diagnosis, you can start with treatment. But where do you begin? CFS/ME is after all a multi-level illness...

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I spoke to one of our regular readers two weeks ago, who also happens to be a CFS/ME sufferer. Greg said to me: ‘I look forward to the potential treatments article for CFS/ME, which I hope will not be too much of a minefield, as none of them come without a great deal of controversy.’

‘Minefield’ is a bit of an understatement, dear Greg. As difficult as it is to find answers regarding the cause of CFS/ME it’s doubly hard to find an all encompassing treatment for it. Whilst doing research for this particular article I kept on thinking: I thank my lucky stars I’m not suffering from CFS/ME. It must be so discouraging not to know exactly what causes it and then to also face the challenge of trying to find a treatment that closely fits your individual symptoms and diagnosis.

Hat full of tricks

So what are the treatment options for someone suffering from CFS/ME? Part of the answer probably lies with the doctor that gave the diagnosis or whether a medical diagnosis has been made at all. (Most sufferers still struggle to get their condition recognised by their GP and travel from doctor to doctor in an effort to get a proper diagnosis.)

If you are lucky enough to get a sympathetic doctor and a positive diagnosis, you can start with treatment. But where do you begin? CFS/ME is after all a multi-level illness...

Below are three approaches to treating CFS/ME. Knowing that CFS/ME is a multi-level illness and knowing that CFS/ME comes in different degrees with clusters of symptoms the best would be to get a multi-level treatment programme that incorporates aspects of each of the following, tailored to your needs and symptoms.

CFS/ME and Hypnotherapy / NLP/ Body-Mind approaches to healing CFS/ME

There is an array of Mind-Body therapies available that are tailored to treat CFS/ME. Just to mention a few such as Reverse Therapy, Mickel Therapy, The Perrin Technique, Emotional Freedom Technique, Neuro-Linguistic Programming (NLP), Acupuncture and the Bowen Technique. Whilst these therapies focus on the mind and it’s relationship with the body it seems to do very little for physiological symptoms because it almost assumes that the mind is manifesting the physical symptoms of CFS/ME. The Lightning Process, for instance is an NLP technique that involves a process for calming unhelpful mental patterns and entering a more resourceful ‘healing state’. This often gets very good results, however, some people improve significantly and then relapse because it does not necessarily treat the physiological symptoms. On the other hand, these treatments are excellent as motivational tools and should possibly be factored in, in the final stages of recovery.

CFS/ME and Toxic cleansing

Our environment and lifestyle expose us to toxins, from antibiotics to mercury poisoning to electrical pollution. Many CFS/ ME therapies focus strongly on detoxifying the body. The belief behind these therapies is that a toxic overload lies at the heart of CFS/ME which has a knock-on effect on all levels of health. Once the body is cleansed of toxins it can cope with it’s environment in full capacity again. Toxic cleansing will involve a bowel/colon cleanse, the draining of the lymph system, chelation therapy and will perhaps rely on supplements supporting and strengthening the immune system such as wormwood – which removes harmful bacteria, parasites and fungus from the gastrointestinal tract. This is possibly a good place to start when your overriding symptoms stem from gastrointestinal problems as well as a lack of energy.

CFS/ME and the Nutritional approach

Some therapies focus strongly on nutrition as the road to recovery for CFS/ME sufferers and this often coincides with a detoxifying programme. In general, nutritional therapy focuses on the nutrients that provide the most immune support for a person with CFS/ME. Whilst this is a very relevant and beneficial therapy, since many CFS/ME sufferers have severe digestive problems, it is not always an accurate science. It takes a lot of commitment from sufferers that often don’t have the energy to eat properly in the first instance, let alone focus on a dietary process of elimination. However, I believe that nutrition plays a key role in the recovery of any disease.

CFS/ME sufferers have reduced energy levels, and many experience poor memory, poor concentration, and assorted gastrointestinal problems that may indicate Vitamin B-12 deficiency. Folic acid and pantothenic acid are also related to fatigue, and increasing intake of these B vitamins could be beneficial for some people with CFS. Omega-3 deficiency is also associated with fatigue, poor memory and poor circulation, heart problems, and depression, so it is easy to see why these nutrients are important for CFS sufferers.
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The ones to avoid

Like with most complex diseases and disorders there are many theories and treatments that’s been tried and tested and some lead to excellent progress whilst others are best ignored. Five of the following 6 therapies are best filed far away and left untouched. The first one, Glutathione/ Adenosine Triphosphate (ATP) injections, (even though it made little impact) lead to further research, which holds possible answers to better treatment for CFS/ME in the future. (More about this in a future alert.)

Glutathione/ Adenosine Triphosphate (ATP) injections - Glutathione (an amino acid) and adenosine triphosphate (ATP) are often deficient in CFS/ME sufferers. Glutathione detoxifies the body from free radicals and heavy metals. Viruses and other chronic infections deplete the body's reserve of glutathione. ATP is the key molecule in cellular energy metabolism and is produced by the mitochondria. Dr. Patricia Salvato of Houston, Texas, reported she has treated 276 CFS/ME patients with these injections. Eighty-two percent of her patients experienced improvement in their fatigue, while 71 per cent had improvement in memory and concentration, and 62 per cent had reduced pain. Whilst the injection certainly showed improvements in a majority of patients, the degree of improvement was not measured. In other words a sufferer may have had severe muscle pain before treatment and felt slight noticeable relief after treatment. Many of these patients were treated for as long as sixteen weeks and none have reported drastic life-changing improvements. The verdict is that even by injecting the Glutathione and ATP to supplement shortages, the body is often so depleted from these compounds that intravenous therapy makes very little noticeable lasting difference.

Graded exercise – This means starting with an activity that you can do comfortably, such as walking, and increasing your level of activity every few days. Too much exercise can positively harm CFS/ ME sufferers. If anything a CFS/ME sufferer must be shown how to pace their energy levels and not how to exhaust or deplete it. It is extraordinary that this can be advocated as a treatment - as if some people find it hard to distinguish between CFS/ME and lack of fitness! Certainly, movement is imperative for proper blood circulation, but for someone with depleted levels of energy movement – not to mention exercise – can be arduous and demotivating. Most CFS/ME sufferers have reported feeling ill after exercise. Those CFS/ME sufferers with post-external malaise (crash after exercise) will certainly do one-step-forward-three-steps-back with this regime.

Cognitive behaviour therapy (CBT) - CBT is a psychological treatment that is based on the theory that most unhealthy ways of thinking and behaving have been learned over a long period of time and it can manifest in ill health. Using a set of structured techniques, a CBT therapist aims to identify how the sufferer is thinking and how this can cause problematic feelings and behaviour. The sufferer will then learn to change this way of thinking. The problem is clear in the simple fact that this therapy makes CFS/ME to be some psychological disorder or behavioural problem, which research has proven it is not. It doesn’t incorporate any dietary changing or consider some form of detox.

Cocktails of Low Dose Antidepressants and Treatment of CFS/ME – This treatment is based on the theory that CFS/ME patients have low levels of neurotransmitters across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA and serotonin, which causes the multiplicity of symptoms including fatigue. In theory the fatigue in CFS/ME has its origin in the brain due to certain abnormalities. These abnormalities are within the mid-brain, thalamus and hypothalamus and are neurological in origin. I think we can all hear the alarm bells ring: Depression may be one of the symptoms of CFS/ME – it is however not the same thing. Treating neurological disorders with a cocktail of drugs when it is unnecessary can leave CFS/ME sufferers with many drug related side effects which may worsen their condition.

Heparin by injection – This form of treatment suggests CFS/ME may be caused by being in a state of hypercoaguability - meaning sufferers get tiny clots in their capillaries which impair blood flow and steady supply. This would certainly explain the multiplicity of symptoms in CFS/ME and theoretically could be treated by heparin (an anticoagulant) injections. However, this is not the case and the treatment could worsen the already unbearable symptoms of CFS/ME, such as pain, dizziness, digestive problems and nausea.

Cold water therapy – This almost takes me back to the middle ages. The underlying premise of cold water therapy is that exposing the body to certain kinds of natural stresses (like cold water) can enhance health. It therefore implies that repeated cold stress may reduce fatigue in CFS/ME because brief exposure to cold water may momentarily reverse some physiological changes associated with CFS/ME. This is pure hocus-pocus and anecdotal. In normal healthy people, cold water gives the body a sensory shock which puts the adrenal glands in over-drive, but CFS/ME sufferers already have malfunctioning adrenal glands so they may feel exhilarated for a brief moment and then completely exhausted afterwards being depleted from the precious little adrenaline they have in their systems.

After looking at all these forms of treatment, I am left with one question: What if the root of the problem is ‘malabsorption’ - which is defined as the inability of the body to absorb nutrients from food in the first place? This brings us back to ‘bad bacteria’ and fungal-and parasite infections in the digestive tract, which is most probably in the digestive track because of lowered immunity and lowered defences. Meaning something must be wrong on a cellular level...

Dr Sarah Myhill, a medical practitioner in Wales, had the same thought on the matter and has done extensive research regarding the subject along with Dr. Norman E. Booth from the Department of Physics and Mansfield College at the University of Oxford. They have recently submitted the findings of their promising study: Chronic fatigue syndrome and mitochondrial dysfunction, of which I will tell you all about in the next alert in this series.

CFS/ME: Related reading:

Understanding Chronic Fatigue Syndrome And Myalgic Encephalomyelitis

What Causes Chronic Fatigue Syndrome?

Diagnosing Chronic Fatigue Syndrome

Chronic Fatigue Syndrome: Natural Measures Can Help Combat This Debilitating Condition

Myalgic Encephalopathy

Exploring The Benefits Of Malic Acid

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Sources:

‘Why use Body/ Mind Approaches in ME/ CFS/ FM Recovery?’ by The ME Recovery Clinic - The Integral Approach to healing ME/CFS, published online themerecoveryclinic.co.uk

‘Chronic Fatigue Syndrome Nutrition - Eating the Right Diet to Help Control Your CFS Symptoms’ by Christina Gleason, published online 18.04.08, nutrition.suite101.com

‘CFS - The Central Cause: Mitochondrial Failure - updated June 2008 and January 2009’ by Dr. Myhill, published online 06.06.08, drmyhill.co.uk

‘CFS - treatments which are not worth trying - updated November 2008’ by Dr. Myhill, published online 06.06.08, drmyhill.co.uk

‘Chronic fatigue syndrome or myalgic encephalomyelitis - Cognitive behavioural therapy’ published online, hcd2.bupa.co.uk

‘Cold Water Therapy’ published online 19.07.08, marksdailyapple.com

‘Possible use of repeated cold stress for reducing fatigue in chronic fatigue syndrome: a hypothesis.’ published online 24.10.07, ncbi.nlm.nih.gov

‘CFS/ME Treatment Programme’ published by Breakspear Hospital, breakspearmedical.com
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Comments

Shelli Posted 18/06/2009

Having CFS for three years, this is a great summary of the treatment programs out there. I especially like your warnings about the ones to avoid, because you can get so desperate, you'll try anything! As a side note, you can take the precursors for glutathione as a supplement and sidestep the injections. That would go along with the nutritional approach. Also, when you want to start exercising, a graded exercise approach is wise, but of course it shouldn't be considered a treatment. Shelli www.chronic-fatigue-community.com

Greg Timson Posted 19/06/2009

Another great one sir!

A point worth mentioning is that according to the NICE guidelines/Chief Medical Officers report on CFS/ME - GET and CBT are the both amongst the recommended treatments along with Counselling and Pacing (a form of lifestyle management). I notice you listed them amongst your treatments to avoid - and it is certainly true that they are amongst the most controversial of the therapies.

However, as I'm sure you're aware; for every different potential cause for CFS/ME there is a potential treatment all of which can seem to make perfect sense for the purposes of explaining the value of the treatment.

The parties who advocate their belief as to CFS's causes and invariably the sale of their own brand of treatment cannot all be correct, and much doubt still remains (even in cases such as that of Dr Myhill) as one party's cause for CFS is merely another party's persons resulting symptom.

Marianne Posted 19/06/2009

Have a look at Dr David Smith's website which advocates a severe reduction in all forms of stimulii and activity to obtain a baseline of activity before a gradual and paced increase. I use seratone 5HTP and a small dose of Melatonin to aid with sleep difficulties but have found that after a year of no TV, reading, and limited computer use I can now walk for a total of 30 minutes a day, watch an hour's TV, use the computer for about an hour in the day and get a good night's sleep and am on the road to recovery after having been very ill for 7 years following a car crash and nasty bang on the head which triggered CFS/ME. I was not diagnosed for 4 years and then not by the GP who wished me to try Graded excercise therapy as did the physiotherapist - I did and nearly fainted each time - so listen to your body and take note. I have become a devotee of BBC radio 7 during the past few years as without visual stimulation the challenge was to find entertainment and this fits the bill for me and has really helped. I think Dr David Smith is on the right track and his programme aims not to manage the illness but to recover from it. I have also found Applied Kineaseology invaluable as a way of identifying foods, potions etc to which I am intolerant - simple muscle testing done at home with my husband. CBT was useful too and helped provide alternative behaviour patterns to cope with long term illness, reactions from partner, family and friends and my own reactions to the loss of employment, social life, good health and to find value in a very altered daily lifestyle.

Andrew Porter Posted 19/06/2009

GET, CBT, and antidepressants, through the good old NHS meant disaster, as I became so ill. Consequently, the NHS discharged me as a patient. One private doctor, at a private hospital, and one chronic bio film bacterial infection found, one reactivated Herpes viral infection, and some heavy metal toxicity. What makes these three conditions so much worse? GET, CBT, and antidepressants! Why do the NHS promote GET, CBT and antidepressants for anybody presenting fatigue as their dominant symptom? Simple, they are cheap, in fact significantly cheaper than conducting the medical tests to correctly diagnose the problem. I now refuse NHS treatment as it is too bad for my health.

Alexandra Barton Posted 20/06/2009

The Daily Mail reviewed the book "RECOVERY FROM CFS - 50 PERSONAL STORIES" last week. The 50 authors describe many different ways they used to get well again and returned to normal life - and recommend books, websites and therapies that helped them. Many also give contact details. Dr Teitelbaum wrote the foreword. Most therapies you can think of have been mentioned in this book. It is an uplifting, positive book of recovery stories.

Richard Drozda Posted 30/08/2009

I would also add that for CBT; I agree 100% that ME is not a psychological illness. However, neither is the Flu but research has shows that maintaining a healthy outlook significantly speeds recovery. Don't overlook this one - it may not be a cure in so far as treating the cause, but it's a good boost, is physically non-invasive and is a massive help for secondary symptoms.



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