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Action for ME
InterActions Monthly Update
August 2000
Cover story from InterAction 34 (August 2000 issue)
InterAction is the quarterly magazine of the UK charity Action for M.E.; for subscription details, tel. (0)1749 670 799 or e-mail info@afme.org.uk (www.afme.org.uk)
Understanding Cognitive Dysfunction (No, You’re Not Going Mad)
By Elaine Myers
Possibly the most crippling symptom of ME, especially in the long-term patient, is the loss of intellectual abilities, collectively known as cognitive dysfunction.
Symptoms include: poor memory and concentration, muddled speech, poor comprehension, confusion and muddled thinking and inability to learn and retain new information, often accompanied by vision and hearing malfunctions.
A neurological illness
Consultant Microbiologist Dr. Betty Dowsett states that ME is primarily a neurological illness. There is strong supportive evidence of abnormalities of brain function leading to movement disturbances, anomalies of hormone and neurotransmitter function and of the electrical activity of the brain (suggesting a central cause for fatigue) as well as of cognitive function (for more details see our research update in this issue). We need to think of the brain as a computer with circuits and terminals, some of which are not working properly.
A sophisticated SPECT brain scan can show that in ME there is a reduced blood flow in the brain stem. MRI scans may also show up abnormalities. The brain stem is important because it controls breathing and consciousness. Reduced blood flow seriously affects brain function because the energy requirements for the brain are far higher than for any other part of the body. You cannot force your brain to cope in this situation.
Contributing factors
Prof. Jonathan Brostoff, former allergy specialist at the Middlesex hospital, believes that where mental symptoms are a result of food intolerance, there will usually be other physical symptoms too. Similarly if one has a fungal or parasitic overgrowth problem, brain fog may be accompanied by irritable bowel symptoms. Low blood sugar is also a common cause of poor memory and concentration and is linked with mood disturbances such as anxiety, irritability and mild depression. All of these contributing factors can be tested for and treated, alleviating brain symptoms for some people.
Oxygen deprivation is also a factor. Low levels of oxygen damage brain cells. Taking a few deep breaths gives the brain a kick-start. If symptoms are alleviated in fresh air, then chemical sensitivities are almost certainly a contributing factor. Also, consider that carbon monoxide poisoning from a faulty boiler may be depleting oxygen supplies to the brain. Finally, it may also be worth considering a thyroid test as an underactive thyroid can cause mental as well as physical lethargy.
Practical tips
Box/other for bullet points?
Write lists and notes as a memory jogger and put them in a prominent place.
Large print is easier to read so try a magnifying glass for small writing. A reading aid can be made by cutting a slit in a piece of card and placing it over the page so only one line of print is visible at a time.
Take rests every day, including good days.
Meditation, deep breathing exercises and listening to relaxation tapes are excellent ways of resting the brain
Be aware of distracting noises when holding a conversation either in person or on the phone
Don’t overload your brain e.g. don’t try to read or study with the radio on
Do one thing at a time and finish it before thinking about the next thing
It is vital to have mental rest as well as physical rest. You need to avoid excess stress. Brain fatigue is as real as muscle fatigue and is often more disabling than the physical exhaustion. Physical exertion affects brain function so if you have a day when you need to concentrate for long periods, limit the physical activity beforehand. Research suggests that it is a good idea to ‘switch’ between different types of activities throughout the day as well as pacing yourself, to alternate the muscle/organ you are using. There is also evidence that the cognitive problems in CFS are made worse by physical overexertion. For this reason, it is not surprising that children with the illness report more difficulties learning on days that they have to do sports or walk to school, and that some can only continue their education with home tuition.
For people with severe speech difficulties, a lightwriter is of great assistance. It requires keyboard skills, hence hand-eye co-ordination. Alison Cummins, who was barely able to speak three sentences a day for many years, found the lightwriter enabled her to communicate and started her on the road to proper speech again. The NHS can fund this but you need to be seen by a speech therapist first.
Can any treatments help?
Sarah Myhill, AfME’s medical adviser, has found that Vitamin B12 given by injection (2mgs per week) can improve brain fog within 12 hours for some patients. B12 increases the oxygen-carrying capacity of the blood and assists in detoxifying the liver, which if working inefficiently, contributes to general malaise.
Low-dose antidepressants may also help cognitive problems. Tricyclic antidepressants like amitriptyline are used to correct deficiencies in certain neurotransmitters which may be causing woolly-headedness, light sensitivities, acoustic problems and even pain. Some sufferers have had success with Lustral, (sertraline) a different type of antidepressant called an SSRI. One woman wrote to say ‘the drug Lustral improved my ability to socialise from 1/3 to 2/3 of the day - but after coming off it, my cognitive function was reduced to almost nil.’
Clonazepam (Klonopin, 0.5mg) is a long acting benzodiazepine, and US specialist Dr Paul Cheney’s preferred drug to improve sleep, (although potentially addictive). However. he also finds that tiny doses during the day improve cognitive function and energy, and may lessen pain.
Finally, while ME specialist Dr Ian Hyams says that the calcium antagonist Nimodipine can improve blood flow to the brain, Dr Myhill has concerns about this drug, saying that it also drops blood pressure and so might leave patients feeling awful.
If you are intolerant to prescription drugs (or are trying anything for the first time), try taking 1/4 of the adult standard dose or cut up pill into as small a piece as possible and then gradually increase the dose under your doctor’s supervision.
Nutritional therapies
Some members have been lucky enough to stumble on nutrients that alleviate brain fog. Fiona takes one called Brain Power, from Natural Health Care in the UK (tel. 01276 675143; 25% off all products to Action for ME members). She says, ‘I have tried several therapies to no effect over the years, but with this one I noticed a difference within a week. It also diminished my sense of feeling “hyper” ’. Although gingko biloba is a main constituent of this product, the combination of nutrients is claimed to oxygenate the brain and enable the neurotransmitters to function efficiently.
The manufacturers of the herbal products gingko biloba (available from AfME Trading) and ginseng also claim to improve brain circulation, in this case by increasing blood flow to the brain and improving memory. And indeed, research has shown memory improvement in older people with cognitive symptoms while taking gingko biloba and Panax ginseng .
InterAction readers have also reported various other supplements as helpful in improving their clarity of thought/alertness, including Enada NADH, CoEnzyme Q10, glutathione and liquid oxygen. However - as ever - what helps one person with ME may not be tolerated by another.
Useful information
Problems with the brain and mind in ME/CFS by Dr Anne MacIntyre covers emotional problems, secondary psychological symptoms and cognitive difficulties in ME and is available from the UK ME Association, (£1.50 to non-members) tel. 01375 642466.
Brain problems in ME/CFS, an article by Dr EG Dowsett is available from YAOnline by post or on its website (www.jafc.demon.co.uk/yaonline )
Tuning the Brain by Dr Jay Goldstein (Haworth Medical Press), Dr Goldstein is a US CFIDS specialist who has researched brain dysfunction in CFIDS/ME using spect scans. $40 from [an association for CFS], 103 Aletha Rd, Needham, MA 02492-3931 or try Amazon via the AfME website (www.afme.org and click on SHOP)
Smart Nutrients by Dr. Abram Hoffer, a world renowned expert on nutrients for the brain with 30 years experience in this field is available from Avery Press, (tel 020 7323 2382).
Calibre, (tel. 01296-432339) is a cassette library in the UK with over 5000 specially recorded unabridged books. Membership is free if your doctor will sign their form confirm that you do have trouble reading in the normal way
With special thanks to Mike Valentine and Dr Ellen Goudsmit
Action for M.E., Po Box 1302, Wells, Somerset, BA5 1YE, UK
tel. (0)1749 670799
fax. (0)1749 672561
website: www.afme.org.uk
e-mail info@afme.org.uk
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