Research information about ME/CFS

General info

Symptoms

Causes

Research

Due to the increased public awareness of ME/CFS through lobbying by charities and other support organisations there has been a large amount of research carried out into understanding the causes and effects of the disease and how ME might actually be affecting the body of the sufferer. For a full list of the relevant published material contact the M.E. Association (see "Links").

Much of the information presented here has been obtained from the literature produced by Dr Charles Shepherd who is the Medical Director of the M.E. association. I have attempted to add any updates in my "ME News" page. Apologies if you find that the information is rather technical (I was a geneticist once!), but this is potentially valuable evidence in the defence of those of us faced with disbelief. You will probably find that the requirement for "evidence" of your disease is much more readily attacked compared to other, more obvious diseases.

Epidemiological facts

About 2 per 1000 people in the adult population have ME/CFS
All age groups are affected, but rare in the very young and very old
Most common age of onset is between 25 and 40 years of age
More women than men have ME, but the difference is not understood
No social or ethnic exclusions

Research findings

Immunology

There seems to be something awry with the immune systems of many ME sufferers, and this is certainly borne out by my experience as I seem to frequently have enlarged lymph glands in my neck and an increased susceptibility to bugs. Some studies have demonstrated:

Some elevation in levels of white blood cells called cytotoxic T cells, as well as elevated levels of cytokines, molecules that help regulate the immune system.
Other studies have demonstrated deficiencies in certain antibodies.

The results of these studies also demonstrated a waxing and waning pattern of deficiency, which mirrors the experiences of many ME sufferers. However, none of these abnormalities are of a great enough degree to be used for diagnosis.

It is not surprising that there is a strong connection between the brain and the immune system. Cytokines can act on the brain directly, thus completing the loop between mind and body - both are inter-related.
Muscle problems

Since muscle problems are one of the cardinal features of ME (and also one of the most obvious and potentailly measurable) it is not surprising that research studies have focussed on this area. Some of these studies have produced evidence that, contrary to many other chronic health conditions, ME patients have muscle symptoms that are not due to inactivity alone. This is quite significant evidence because it has serious implications for those who advocate a "stiff upper lip" approach to the illness, in which the advice seems to advocate exercise as the only way out of the illness.

A recent study (Paul et al in the European Journal of Neurology, 1999, 6) demonstrated that post-exercise fatigue did exist to a much greater degree in ME sufferers compared to the control group. A study using magnetic resonance spectroscopy (McCully and Anderson, Clinical Science, 1999, 97) demonstrated problems in oxygen uptake in muscle metabolism possibly caused by impaired blood flow to the muscles in ME patients compared to the control.

Infections

As has been stated elsewhere ME/CFS is frequently assocaited with an earlier viral infection, though the evidence for a direct involvement in the perpetuation of symptoms is far from clear. It has been noted that the symptoms of ME are very similar to the symptoms experienced by patients recovering from polio. It is also feasible, though not proven in ME, that viral infections can directly alter muscle and nerve tissue since some viruses, such as Coxsackie, go on to specifically infect muscle tissue and alter their metabolic (energy producing) functions. Of course, if the immune system is compromised as suggested by the studies mentioned above then the virus may have a greater chance of evading that immune system. It could also allow latent viruses, like the herpes viruses that cause glandular fever, to become re-activated and cause a relapse of old symptoms.

Changes in Central Nervous System

The fact that most people who suffer from ME/CFS have such a large range of symptoms, which differ from one person to the next, suggests that something that controls many bodily functions could be implicated in the disease. The central nervous system performs such a role in the human body and since ME sufferers tend to display a lot of neurological abnormalities this would seem an important area of research. There is now a lot of evidence to suggest that central mechanisms are more important in producing mental and physical fatigue in ME sufferers than defects in muscles themselves.

Since this area is so somplex I have included a schematic diagram below to illustrate the complex networks of co-dependent factors involved in the abnormalities observed in those with ME.

ME Theory Diagram

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Drugs

I have outlined below a list of treatments that have been tried and tested by many ME sufferers. This table is merely aimed at providing a guide as to what the research has shown with regards to these different therapies. It has to be said that sadly there is, as yet, no universal panacaea for the disease, and most of the therapies below are aimed at reducing symptom severity. You should also bear in mind that because you are already quite ill you may experience unpleasant side-effects when taking some of these drugs.

Name of drug or treatment	Reason taken	Results of research
Allergy treatments	If specific allergies identified	No noted benefit
Ampligen	Antiviral;immunosuppressor and immunoactivator	Positive results in one small trial, but not given approval by FDA in America
Analgesics	Severe muscle pain experienced	Can be effective
Antibiotics	Persisting infections	No evidence for benefit from prolonged course
Antidepressants	Relief of depression, and at a low dose of a sedating tricyclic (e.g. 10mg amitriptyline) for insomnia and/or myalgia	No benefit found in a trial using Prozac/fluoxetine, but individual accounts vary enormously. Some experience an improvement, some experience unpleasant side-effects, but majority have no change in symptomology. St John's Wort - no improvement over placebo in one trial and can cause some side-effects
Antifungal drugs e.g. nystatin	treatment for candida yeast or fungal infection	No evidence of benefit, only individual cases
Antihypotensives e.g. fludrocortisone	For low blood pressure or hypotension due to neural problems	No reported benefits from trial with fludrocortisone
Antiviral drugs e.g. acyclovir	Aimed at stopping viruses from replicating	No reported benefits in trial for acyclovir
Anxiolytics e.g. benzodiazepine	Treatment for anxiety	No proven benefits, risk of dependency and withdrawal problems
Calcium Antagonists	Used to treat cardiovascular problems, like high blood pressure	Relief of cold hands and feet and post-exertional muscle pain
DHEA(dehydroepiandrosterone)	Suggestion that because cortisol is low in some ME patients, and DHEA and cortisol are both produced in the adrenal glands, then an increase in DHEA levels might help	No demonstrated benefits as yet. Reports of inflammation of liver. Also potential for long-term problems when large doses of DHEA are converted into masculinising hormones such as testosterone, which could increase the risk of ovarian and prostrate cancers. Take care!
Galantamine	Affects levels of brain messenger, acetylcholine	No reported benefits
Hormonal treatments e.g. hydrocortisone	Used to treat low levels of hormones, such as cortisol, thyroxine and oestrogen	Cortisol - some benefit in one trial, none in other. Oestrogen - can help some women. Thyroxine - no definite evidence of thyroid dysfunction, risks asscociated with thyroxine.
Hypnotics e.g. zaleplon	Used to treat sleep disturbance	Can be of benefit in conjunction with mild analgesic in severe cases
Immunological drugs e.g.ampligen	Boost the immune system	Some benefit with ImG, but still being researched. Expensive.
Imunovir(inosine panobex)	Immunomodulatory - supposed to improve natural killer cell activity and hence ability to fight infection	Small Canadian study showed some benefit possible. Currently being assessed for safe form of treatment.
Irritable bowel drugs e.g laxatives, antispasmodics	Reducing gut disturbance	Can help ease symptoms, along with altered diet (see "Help Yourself").
Muscle relaxants e.g. Robaxin	Easing of severe muscle spasms	Low doses in severe cases can benefit patient.
Oestrogen replacement	Pre-menstrual exacerbation of symptoms connected to lower levels of oestrogen. Blood tests for serum oestradiol and FSH levels.	Improvement with oestrogen patch and cyclical progestogen therapy.
Provigil(modafinil)	Successful treatment of narcolepsy (acute episodes of daytime sleeping). Assessed in multiple sclerosis and fatigue.	Beneficial in MS. Multi-centre trial taking place in USA.
Supplements e.g. carnitine	Replacing necessary substances not available in diet	Evening Primrose Oil - some benefit noted. NADH - a natural substance that aids ATP (energy-providing molecule) production - effective in small trial. Carnitine - benefit noted in one trial.
Thyroxine	Belief that low thyroid function is reason for fatigue.	Ongoing trials. Caution. V.low doses can be harmful.
5-HT3 Reception antagonists (navoban/tropisetron & zofran/ondansetron)	Relief of severe vomiting normally. Affect levels of serotonin.	Beneficial effect in German trial.
Vitamins and minerals	Supplementing substances not absorbed in diet Deficiencies in magnesium, folic acid, B vitamins and zinc have been observed in ME sufferers.	No benefit in clinical trials. Megadosing of vits and minerals can cause serious harm, including liver damage.

Non-drug treatments

Many people with ME find that the most effective treatments do not involve drugs at all. Unless the symptoms are so severe that they require pharmacological intervention, the alteration in lifestyle, diet and overall attitude can be very powerful in effecting an improvement in your lot. The ME sufferer regains some control over their lives, and in my experience the boost to your self-confidence and self-esteem is much greater if you have helped yourself to better health by making positive choices to change, thus taking an active role in the recovery process. In my mind this is a vastly more satisfactory position to be in compared to being a passive receptacle for whatever drugs you think might, just might help you. Unfortunately some of the therapies described below may be expensive but rather than concentratin on eradicating the disease, which at the moment is a long way off, they focus on making the ME sufferers life much easier. I have outlined below the research that has been carried out on this area.

Name of treatment/therapy	Comments
Activity management	Very useful if applied correctly. This must be tailored to the individual's needs A gradual increase in activity, punctuated by rest has been shown to help some sufferers, but others have their symptoms exacerbated by doing too much, too soon. Any increase in activity must only be carried out if the patient is feeling well. Pushing through has an adverse effect. Rest is important. Some surveys (ME Association, Action for ME and 25% Group) all indicate a significant number (50%) of ME sufferers are harmed by following a graded exercise programme. Flexibility is the key and the ME sufferer should be in control all the time, not the doctor. Graded activity should be treated like any other form of medication, as doctors have been advised by the Medical Defence Union. Pacing according to individual levels is advised and most patients find this is the best approach. (see Bazelmans et al., Psychological Medicine, 31, 107-114)
Management of sleep problems	In early stages of illness extra sleep may be crucial to aid long-term recovery. Once sleep patterns have stabilised the following is advised: avoid excessive amounts of caffeine-containing drinks, such as coffee avoid afternoon sleeps unless essential and only if it doesn't affect night sleeps establish a regular routine for the day relax properly before retiring at night
Cognitive Behaviour Therapy (CBT)	This provides help in managing lifestyle and negative thinking processes. Can be useful for some ME sufferers, but I personally did not benefit from this. If you're quite a positive, optimistic person despite your ME this will probably not provide you with any skills that you already have! Results from clinical trial are inconclusive.
Acupuncture	Some benefit possible for muscular pain, but expensive
Homoeopathy	Some benefits possible, but expensive if not on NHS, for example

Next...relapses and why they happen

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