Review Of My ME/CFS Management Programme at The Dorset ME Clinic, Wareham Hospital
In February i attended a six session bi-weekly fatigue management programme at the Dorset ME Clinic organised by my GP. I understand that treatment for the condition varies depending on the region, but i would like to give a heads up to anyone who may be attending the programme in the future.
The sessions were led by two senior occupational therapists who both have a lot of experience with ME/CFS patients.
During the first session we introduced ourselves and gave everyone some info on our background and history. It was all very informal and i felt at ease straight away. There was a group of around six of us, so it wasn't too daunting!! Below i will talk about the practices i learnt during the course.
Understanding what Myalgic Encephalomyelitis is
During this session we learnt that M.E is a neurological disease which involves the Pituitary gland, the immune system and the nervous system.
When M.E is brought on by certain pre-disposing and Precipitating factors which i talk about below, these systems of the body become 'out of sync'. The messages to the brain do not work as well any more and the body does not know how to regulate itself.
For example, when we sleep - the sleep is unrefreshing because the brain is not being sent the right messages and therefore sleep no longer performs as it should with us. Another good example is that body temperature is not regulated properly, hence why we get very hot and.or very cold in normal situations. It made a lot of sense when this was explained, and i now have a better understanding of the condition myself.
Pacing
One of the most important and essential practice for an M.E patient is pacing. When once we could easily work all day, go out for drinks with friends before coming home, have dinner and watch television before bed, this is something i suspect not many M.E patients can do any more.
Personally my activity is around 30% of what is used to be before my worst episode of M.E last year. We all have a baseline, in that we have our 'normal' level of how we feel each day. Of course when we do too much we then experience the 'crash'. It is said that when any of your normal symptoms become worse then you have overdone it, and this is how you know that you have pushed yourself too far.
The hardest thing for me was accepting that things were now different, and i would have to make lots of lifestyle changes - even now i get frustrated when i try to make the bed and can't because my arm muscles are too weak, or a 30 minute face to face conversation brings a 'crash' on - but i now know my limits, and since i have found these it does make daily life a lot easier.
The Sleep Pattern
In one of the sessions we learn about the sleep pattern. Every person has a sleep cycle of four stages, one being the deep sleep where you experience R.E.M (Rapid eye movement). This is the sleep that refreshes you the next day, and is what every person needs.
Each sleep cycle is 8 hours long. Have you ever noticed before you were unwell that you can sleep for 10 hours one day and feel very tired, but then sleep for 8 hours the next day and feel fine? Well thats because once you go over that 8 hours you are entering a new sleep cycle, and upon waking after 10 hours sleep, you wake during light sleep then your body thinks that you have only slept for 2 hours! This is why sleep is not refreshing for M.E patients. Their body does not enter the 'deep sleep' phase, which explains why upon waking you feel just as exhausted and groggy, if not more, than the night before.
There are medications that can help you achieve the deep sleep stage, one being Amitryptyline which i am on. I found that it was great for a month, and i did feel slightly more refreshed in the mornings, however for me it trailed off and i will having a review soon to possibly increase the dose. However everyone is different, and if you havent been given anything to help sort your sleep pattern out then i would definitely speak to your GP about it.
Predisposing Factors
During the first session we learnt about predisposing factors and precipitating factors. These are the things which make the chance of having M.E more likely, and also triggers which can bring on the onset of the disease.
Several predisposing factors have been identified with M.E. The main ones seem to be stress. We all know that stress can affect us physically in lots of ways, and stress over a long period can certainly make you more vulnerable to the disease, along with traumatic events, such as a car accident, domestic abuse etc. This was definitely the case with me.
Another factor seems to be frequent throat infections (Ie tonsillitis) and virues, if you are one of those people who seem to catch everything (as i was) then this does put you more at risk for developing the illness. Every time we get ill it puts a strain on our immune system, and there is only so much the body can take. Research has also suggested that genetics may be a factor, with a certain gene running in the family.
There have been reports of several family members having the disease, in fact there was a girl in my group whose mother and cousin had it too. Whether or not this is because they have similar personality types (As i will explain later) or there is a faulty gene, remains unknown - but there is certainly evidence to suggest this may be the case.Put all of these factors together and it makes the illness very, very possible.
Balancing Rest & Activity
Before i started the course, i thought i was managing the rest part very well, with regular naps and relaxing reading a book. However we learnt that whilst for healthy people, a way to recharge may be watching TV, or reading a book, however with us even mental activity is exertion and exhausts us. We learnt that before we 'crash', we can help energise ourselves by using relaxation and breathing techniques which use very little energy and refresh the mind and body. I have definitely found this helpful and find if i do this BEFORE i crash, and take 10 minutes out it really can help, and i do feel more refreshed afterwards. I have also found pacing in general is helpful, taking regular time out to relax properly can avoid those big crashes.
The Theory Behind Recovery
Before i attended the course, all i had heard about M.E is that 'most people never recover', however although this may be true, as it is dependent upon many variables, i do believe that recovery is possible if you give yourself the best chance of recovery by understanding the condition and managing it well.
The idea is that currently you may have big crashes, where you are up and down like a yo-yo! If you begin to pace yourself as above, you can reduce the intensity of those crashes a lot. Since i have been doing this my crashes are definitely not as intense as they were. It is said that over time, if you continue to do this - they will gradually become less severe and eventually you will achieve a baseline, in that you know where your level of activity you can manage lies and know what to do to avoid over exertion.
The idea of this is that if you stay on this level for a while, the symptoms will start to lessen in intensity. then this is when you can start trying to gradually increase your activity levels. If you do find you crash, then you are not ready and need to do less. If you don't then, you know that you can continue to stay on this level and gradually build up using the same technique. We were told that it takes longer for some than it does for others, and of course there are no guarantees - but is has been proven to work.
Personality Types
The clinic i went to in Wareham, Dorset has been running for 12 years and during that time 40% of their patients have been back into full time work/education within 4 years, which is a fantastic figure. We were told that between all of the patients they have dealt with, there does seem to be a certain personality type who are more susceptible to the illness. In my group alone, i noticed that we had all come from pretty stressful jobs - i previously worked as a senior sales advisor, and my group included a former police sergeant and social worker. We all seemed to be very determined, people - what some may call 'high flyers', which would explain the 80's nickname for the illness - 'Yuppie flu'. Whereas the illness is not simply 'burnout', but instead a neurological disease, it does seem to affect people of a similar type of personality. You may be someone who always puts other first, who is a perfectionist who is very harsh on yourself - or you may take everyones issues on yourself. A high number of M.E patients seem to have this personality, 'over'achievers'. Which makes it even harder to deal with when you were previously a very active, successful person.
I am generally very impressed with the treatment i received at the clinic. Meeting others made me feel more secure in knowing that there are people in the same boat, and the occupational therapist understood the illness brilliantly. Although i know there is a long road ahead, i have learnt a lot about myself and the illness during the programme and it has given me valuable insights which not only will help me along the way to recovery, but ones that i can take away with me one day, if i am in remission.
I hope this info has been useful, i would certainly recommend the Dorset programme to others and wish you the best of luck.
