Researchers have discovered that ME/CFS results from a dysfunction of the immune system.

The latest line of thought is that there are several triggers like giardia, herpes virus, enteroviruses and retroviruses, Hepatitis, flu, bronchitis, chemical sensitivities, and glandular fever (Epstein bar virus) to name few.

Some people have found that exposure to certain chemicals or even food can cause their symptoms to worsen so an environmental or dietary change at times must be taken. In some M.E. sufferers there is no clear cut underlying cause for their M.E.

Scientific research is clearly showing M.E. is a physical illness. ME/CFS sufferers are often highly motivated and will try anything to get better whereas people with depression suffer low motivation.

Currently diagnosis is made by clinical presentation and by ruling out all other possible causes of fatigue. Routine blood tests typically return "normal". Research overseas is finding that gene profiling is showing promising results and there are hopes a test for M.E. will be produced in the near future.

Treatment

What kind of treatment is available?

Symptom Control

The current treatment for ME/CFS in N.Z. at this time is to relieve specific symptoms which include (but not limited to) sleep disorders, pain, stomach problems, allergies and depression. Low doses of medications should be trialed first and gradually increased where appropriate. e.g. The sleep disorder is often best treated with tricylic antidepressants e.g. Amitriptyline, Doxepin, but only at doses of about 10-20 mg.

New things are being researched all the time to help, so if the medications you have tried haven’t helped so far there may be something to help you shortly.

It is found that if symptom relief is given for pain, headaches, stomach problems etc there is a higher chance of person getting better. Different approaches can be used. Here are a few medicines that may help.

Pain Killers: There is a range of simple pain killers like panadol through to codeine and stronger drugs like morphine. The opiate group is rarely used because of addiction problems.

Anti inflamatories: .e.g. Brufen, Voltaren. These can help with inflammation and pain relief particularly if muscular in some cases.

Estrogen: (sorry guys this is for woman only). There is a small risk of side effects like blood clots and increased risk of breast cancer, but if this can be taken it can help sluggish brain flow, thinking, sleep, and general function. Research undertaken by John Studd has shown that many women with ME/CFS over 40s do benefit from estrogen.

Calcium Channel Blockers: These open the blood vessels in the body and brain. They are in fact used to treat high blood pressure normally, but those with M.E. need to take more salt and fluid to prevent a further fall in blood pressure, which may already be low. They can help relieve the brain fog, fainting sensation etc.

Isoprinosine or Immunivir: Can help to quieten over activity of the immune system in a very small percentage of patients. It is not yet subsidized by Pharmac and is very expensive.

Selective Serotonin Uptake Inhibitors: (e.g. Prozac, Aropax) Serotonin gives us the “feel good factor” and these drugs increase the levels of this brain hormone. You only need tiny doses of these drugs which are normally used as antidepressants. They can give energy and a clear brain at these doses and make you feel more normal again. Used regularly this may help the immunes system to settle down.

Ritalin: (Methylphenidate): A one off thing to help get you through a family wedding or crisis situation. This drug can be addictive so care needs to be taken. However this drug is now controlled and maybe difficult for your doctor to prescribe.

If you are suffering from some underlying infection one of the following may help.

Antibacterials - Antibiotics e.g. Doxycycline taken for 6-12 months can help kill off long term bacterial infections such as mycoplasma or Lyme..

Antivirals - Can be useful if you have had cold sores, genital herpes, chicken pox, shingles etc. They need to be taken over several months.

Anti parasitic drugs - For those with parasitic infections this range of drugs will kill off parasitic infection. Energy levels could then improve.

Ampligen - Now in the stage 3 trial in the USA. This drug quietens the immune system and has been shown to have real benefit in those CFS/ME sufferers who are very seriously afflicted. It is not yet available for regular use.

Modafinil – used to treat fatigue in various diseases. Some do very well on it. Again it is expensive, about $3 a day. If you are on a benefit you may get help. There are no apparent problems with addiction but it can have side effects.

Neurontin (Gabapentin) - quietens electrical activity in nerves and gives pain relief. It is also very expensive but is used a lot in Pain Clinics and hopefully Pharmac will eventually fund it.

Nystatin - taken for candida overgrowth has often been reported to make people feel a bit better, but this is likely to be due to the fact that it improves brain blood flow rather than any effect on the systemic candida, which is unlikely to be an issue in CFS.

Fludrocortisone - Useful especially in teenagers helping the body to retain salt which in turn helps to normalize the blood pressure which can help cognition (thinking).

Antihypertensive Therapy - Beta blockers such as Atenolol (Tenormin) have also been prescribed for patients with a positive tilt table test. Increased salt and water intake is also recommended for these patients.

It is always necessary to be aware of toxicity, and also allergy/sensitivity to medication. However, sometimes there are side effects initially with any new medication and benefits may take time to show. It is always worth pressing on if possible.

Before you get your prescription, if the drug is not subsidized you can ring around chemists for a price quote, as there can be large differences in price.

Currently there is no specific treatment that cures the underlying immune system dysfunction which appears to be at the heart of the condition. There are also some exciting drugs in the pipeline for treating immune abnormalities and fatigue.

Several treatments are currently in therapeutic trials overseas e.g. ampligen

Supplements

1. Take supplements to fix deficiencies. i.e. take iron if anaemic. There is no use trying to fix something if there is nothing wrong. – If there is no definite deficiency you can get toxicity and become ill, especially with iron. Use common sense.

2. If you take extra salt you need potassium as salt can leach this out of your system. Bananas and kiwi fruit taken 3-4 times a week should supply enough potassium.

3. Take calcium if on a dairy free diet, and only take magnesium if tests show you are short of it etc

4. Evening Primrose Oil has been researched in Newcastle when they looked at the lipid abnormalities. ME sufferers could be divided into 3 groups:

   1. 1-60% of ME /CFS sufferers improved with evening Primrose Oil

   2. 20% Of ME /CFS sufferers improved with using flax seed oil

   3. 20% had not benefit from either. Take one or the other- not both at the same time as they offset each other.

5. B12- about 60% of people show some benefit. Taken by mouth B12 is not usually helpful. The B12 in the blood is usually normal so your system won't absorb any more from food or pills, but B12 in the brain cells maybe depleted. Injections of B12 can help this. It may take 4 weeks of weekly injections before benefit shows. You need to balance this with folic acid in tablet form.

6. Amino Acids. Over 30 Amino Acids have been studied by the Australian biochemists. Many imbalances have been shown and serine (an Amino Acid) seems to be consistently low. Serine is precursor of Serotonin, and supplementing maybe helpful for some people, but not everyone. It is not worth taking mixed Amino acids that you can buy, as there is such a small amount of each one and some could aggravate you anyway. Serine is not on prescription but can now be purchased in NZ..

7. 5HT or 5 hydroxytriptamine has not yet been shown to help in ME/|CFS.

8. Glutamine is sold over the counter but can cause depression so be careful of the side effect.

9. Magnesium – some find it very helpful but it is questionable. If you overdo the magnesium the gut can be seriously affected and you can get irritable bowel.

10. Carnitine for muscles –research has shown Carnitine often quite depleted in the muscles. This causes weak muscles. To buy Carnitine it is

    1. is expensive,

    2. has been shown by research that taking carnitine you need to take a huge amount to change the levels in your body. Some people taking carnitine find it beneficial, but exercise is an easier and cheaper way to push up your carnitine levels.

11. Vitamin C helps iron absorption whilst caffeine decreases it. Too much vitamin C however should be avoided as it hypes up the already overactive immune system and also can cause symptoms of irritable bowel.

12. Zinc is occasionally helpful but too much can be hard on the system so be careful.

Lifestyle changes, including increased rest, reduced stress, dietary restrictions, nutritional supplementation and minimal aerobic exercise also are frequently recommended. Although anecdotal reports of successful treatments are frequently heard, people with ME/ CFS need to approach claims of such 'cures' with caution. There is no proven effective treatment that totally cures ME/CFS at this time although many medications help.

Pace Yourself!!

The single most effective technique is careful self-management of daily activities (pace yourself).

Specialist Advice

One specialist I was talking to said we may not be able to completely cure M.E. sufferers today but who knows about next month, or next year. At the rate medical science and research on M.E. is progressing there is always hope a total cure will be found soon!!

Individuals views expressed in MEISS do not necessarily reflect those of the Otago ME/CFS Support Group. Any information provided is not intended for use as, or to replace professional medical/diagnostic advice. If you have medical issues you should consult a physician. MEISS Otago/Southland Inc assumes no responsibility for the choice or outcome of any treatment by its readers.