Published in InterAction 67 Spring 2009
Memory problems can be very distressing but knowledge is power so here are some techniques that can help.
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Dear Doctor: Struggling with short-term memory
I’m finding with my M.E. that my short-term memory is really struggling. I have to write everything down and even then, I sometimes forget what I’m writing! I can finish a phone call and then not remember anything about it and I often simply can not find the words when speaking. This confusion is so humiliating when it happens in front of other people and I sometimes worry that I’m going mad. Is there anything I can do to help with this symptom?
Professor Tony Pinching commented:
Many people with M.E. are concerned about the impact of their illness on aspects of memory, as well as on concentration and word-finding. These symptoms and changes in function are very common, even universal, as part of this condition, which affects the function of the nervous system. Of course, such symptoms can be quite alarming, and many patients can fear that this is a sign of some form of dementia (and you aren’t going mad!).
The effect on memory is typically on ‘short-term’ or ‘working’ memory, so that people may forget what they have recently been told, forget what they were just about to do, forget where they have put things, and so on. They increasingly need to write lists, when they would have kept things in their head before. Then they forget where they left the list!
Remembering people’s names, remembering familiar phone numbers can also be a problem. They can get muddled enough to put things in the wrong place too, which is more to do with concentration and sequencing of tasks. Finding that you have put paperwork or keys in the fridge can be a bit confusing, and upsetting! Multitasking, decision-making, acquiring new knowledge and accessing existing knowledge can all be affected, as described by patients. Brain fog is an evocative phrase for the problems.
In general, these cognitive (brain function) symptoms fluctuate with variations in fatigue and other symptoms. They are also worsened if there is sleep disturbance – sleep quality and quantity are important for laying down memory and other key brain functions. They will also be worsened by anxiety or depression, if these co-exist with the M.E. This can be a bit of a vicious cycle.
All the evidence and experience suggests that these are changes in brain function, and are not due to loss of the neurones, the ‘little grey cells.’ As people improve from M.E., so these functions improve, although the cognitive symptoms may be a bit slower to improve than the physical ones. Indeed, some people become more aware of the memory and other problems as they start to improve and when they can challenge the brain a bit more.
Recently a patient told me a fascinating story, which emphasises the fact that this is a reversible change in function: He had had a lot of problems with memory and ‘brain fog’ with his M.E., but when he had a separate and unrelated bacterial infection, he went through a phase when the brain fog suddenly and completely cleared. Unfortunately, as he recovered fully from the infection, it reverted. The likelihood is that the altered function of the nervous system in M.E. is due to the altered levels of immune chemicals (cytokines) interfering with more complex nerve function (see my article on the biological mechanisms underlying the disease in InterAction 61, p 12). The bacterial infection may have temporarily reset these levels to a better mix.
Increasingly, data are being published from detailed research studies using neuro-psychology tests that show which functions are affected and which are not. The pattern is very different from those seen in dementia, as are the clinical accounts. The increasing sophistication and discrimination of these tests will be helpful in defining the nature and basis of these cognitive problems. Where there are doubts clinically about the cause of cognitive changes, some of these tests may be clinically useful.
One fairly recent report, using brain scanning to assess the volume of parts of the brain, seemed to suggest that there were areas of actual brain loss. However, it was later shown that these volume changes reversed as patients improved. We know that the flow of blood to different parts of the brain is strongly regulated in relation to the local brain activity. If there is less activity, there will be less blood flow, and that will reduce the apparent volume, even if the numbers of cells are the same.
So what can you do about these memory and related problems?
Well, firstly, knowledge is power! So, if you know what is (and isn’t) going on, it can help, especially if you know that it usually will improve. Some people are so worried that they may not even volunteer their concerns about these symptoms (or may not realise that they are connected), and so they may worry unnecessarily. Also if you are not thinking about or worrying about the problem, it is often less evident (just as it is easier to putt the ball in friendly golf, than if you are playing the same shot for £10,000!).
Of course, we don’t have the technology yet directly to solve problems with the function of the brain – the most complicated computer that we know about! We also still lack the knowledge about how to correct the biological processes that lead to these changes in the central nervous system.
However, we can often help indirectly. If you have sleep disruption or unrefreshing sleep, then it will exacerbate or bring out your memory problems. Treating these (see InterAction 60, p 13) can often help to reduce the memory problems. Using low-dose tricyclic agents is often helpful. Similarly, reducing anxiety or depression can reduce the added impact that these have on the cognitive function. Avoiding things that seem to make brain function worse (eg. alcohol and some medications) can be helpful. Controlling frequent migraine-like headaches using preventive treatment, such as pizotifen, can also help if they are present.
Some people have found that ‘brain training’ activities can help a bit. But otherwise you may need to have notepads left in obvious places, and lots of Post-it notes! Use routines to jog memory: eg. put your night time or morning medication by your toothbrush? Some of my younger patients, whose extensive use of mobile phones never ceases to amaze me, may not have thought to use them to set reminders for appointments, etc. Maybe the rest of us can gently embrace the easier bits of new technology, if available.
But of course the other solution is pacing your activities within sustainable levels (physically and cognitively). This approach – setting a sustainable baseline, and building up by small increments slowly – is a way of minimising symptoms, maximising function and increasing the prospects of improvement. And using it can help cognitive function to improve too. It may take time and there may be blips on the way but, for most people, it makes a difference. I hope that helps a bit. It can be a hard one for you, but every little helps.
Dr Hazel O’Dowd, Consultant Clinical Psychologist, advised:
Memory loss is a very distressing symptom. There is no quick fix, however a few things may help. First of all, remember you are no less intelligent than you were but you have less capacity than previously to manage cognitive tasks. A large number of people in the population have these problems, not just you. It’s horribly normal! There are two ways forward:
- Improve the chances of information going in
- Pace mental activity as much as you would physical.
It’s worth understanding a little bit about memory. In order to make a memory, the information needs to go in and be stored in an accessible place so that it can be retrieved when required. The better the quality of the information going in, the more chance you will have of accessing it when you need to.
To make sure information goes in when you need it to:
- Minimise environmental distractions
- Choose a good time, making sure you have rested before, or done a non-mental task
- Read or listen to what you need to focus on. Paraphrase it back, perhaps make notes, check you have understood both what you need to understand and what you need to do with the information.
- Ask a friend to go with you if you have an appointment
- If you need to make a decision – anything from booking a holiday, changing phone contracts or a doctor’s appointment – and you don’t feel you have processed all the information, ask for more time or a second appointment.
Mental tasks can cause fatigue as much as physical. Mental activity is often neglected as ‘just’ reading, ‘only’ using the computer, watching TV etc as they are not primarily physical activities. Consider mental activity as an activity as much as you do physical activities. How long are you doing these activities for? How long can you manage? Try to work out a baseline in exactly the same way you would for walking, vacuuming and other physical tasks. Can you can manage the task regularly eg. can you watch TV for three hours one day but not again for the rest of the week? If so you probably need to reduce your hours of TV.
Only once you are settled on your baseline should you very gradually do more until you settle on a new baseline. Increasing mental tasks is done in much the same way as you would increase physical activities. Remember the 70% rule – stop while you still have some capacity. Break activity into chunks eg. record TV programmes and watch 20 minutes at a time. Do sections of a form, not the whole thing at once.
Try not to multi-task. You may manage to do more overall if each activity is done separately. Do not read while eating or listening to the radio, for example.
When reading, it may help if you:
- Find your baseline; you may find that you need to alter how long/ how much you can read depending on the material.
- Try using a reading window or piece of paper to cover up text you aren’t reading, or a bookmark held under the line you are reading
- If you are using the internet, print things off if you find looking at the screen too fatiguing. Try different font styles, font sizes and background colours (some people find that reading a rounded print in 14 point font size on a cream paper is easier than reading Times typeface on white paper in size 12)
- Make notes as you go along – some people have kept track of characters in novels this way. Try using post-it notes throughout a book.
Don’t try to keep all the information you need in your brain, use external props to take some of the load, such as planners and diaries. Opt for doing a little, often, rather than prolonged activity. Alternate between physical and mental tasks. Remember that stress, anxiety and depression can affect everyone’s mental processes. You aren’t going to manage as much activity if you are stressed or anxious about it, so factor this into your baselines.
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