When I met Philip about three years ago, one of the first things he told me was that he suffered from Chronic Fatigue Syndrome (CFS) also known as Myalgic Encephalomyelitis (ME).
I didn’t pay much attention to his “condition” because frankly, I didn’ see anything wrong with him: We went out every weekend and stayed out till the early hours, we had excellent laughs and in general enjoyed a very active and social friendship. Everything was normal.
Then with no warning and no apparent reason, Philip changed. He stopped going out with me, didn’t bother to answer my calls or even respond to text messages and his conversations were dry and unenthusiastic. On the odd occasion that I saw him, he was moody and passive and generally, not a great pleasure to be around with. Philip was not the same person I grew to know and like. When I eventually confronted him with this change, he explained that he was having a bad relapse with his CFS…
CFS/ ME: Ignorance is cruel
Almost a year down the line since his relapse, Philip has given me a wonderful insight into what life is like living with CFS. Knowing how this condition can disrupt one’s life and destroy friendships and relationships, he persisted in maintaining a friendship with me and did not allow me to write him off. I’ve observed him on days that he clearly had no energy or focus but still kept pushing forward trying to be “normal”. Other times he would simply collapse in a chair holding his head and I could see him shutting down in a cloud of fatigue. I experienced his short-term memory loss and his terrible brain fog. I’ve seen the heavy blanket of lethargy that this condition pulls over a vibrant personality to such an extent that he would not be able to go to work for weeks…
Since it is CFS/ME Awareness Month, I’ve decided to do a short alert series about this condition. This alert is essentially for the people out there who experience symptoms they or their doctor cannot explain; people who may perhaps be too scared or embarrassed to talk about how they feel but need some answers. It is also for everyone out there who may still believe (like I did) that Chronic Fatigue Syndrome and Myalgic Encephalomyelitis is some mocked-up imaginative condition.
CFS/ ME: much more than what you bargained for
CFS/ ME is now recognised by the Department of Health as a real, long-term disease and is a condition that causes extreme physical and mental fatigue that seriously interferes and disrupts the lives of sufferers.
CFS/ME can affect any age group, but most commonly starts in people aged between the early 20s and mid 40s. In children, the most common age of onset is 13 to 15, but it can occur in children as young as five. It’s about twice as common in women.
The severe fatigue usually has a clear starting point, often after a bout of illness, and it doesn’t improve after rest. It makes sufferers less able to cope with levels of activity in their work, school or social life that were previously normal for them. CFS/ME isn’t the result of over-exercising. Even normal physical activity may make sufferers feel very tired.
CFS/ ME: Common symptoms
- muscle and joint pain, but with no swelling
- fatigue that lasts more than 24 hours after exercise or exertion at a level that you usually used to be able to manage without feeling tired
- forgetfulness, memory loss, confusion, or difficulty concentrating, brain fog
- sleep disturbances – waking up feeling tired or unrested or having trouble getting to sleep
- flu-like symptoms
These symptoms may vary throughout the day – some days they may be mild and other days more troublesome.
In addition to these diagnostic criteria, CFS/ME has about 50 recognized symptoms, including dizziness and balance problems, allergies and chemical sensitivities, anxiety, stiffness, numbness, and irregular heart beat. While not required for a diagnosis, these other symptoms can help your doctor identify what’s going on in your body.
CFS/ ME: Other associated symptoms
- feeling faint or problems with balance
- painful glands in your neck or armpits
- a sore throat
- feeling sick
- mood swings
These symptoms may be caused by problems other than CFS/ME. You should visit your GP for advice if they occur along with other CFS/ME symptoms.
CFS/ME and Depression
CFS/ME is often mistaken for depression, which could not be further from the truth. However, a CFS/ME sufferer can have depression as a CFS/ME symptom.
There is a big difference between a person suffering from depression (without CFS/ME) and a person suffering from CFS/ME. Firstly, people with depression have enlarged adrenal glands. In contrast, CFS/ME sufferers often have small, exhausted adrenal glands.
In general, people with depression also feel better after exercise, whereas CFS/ME sufferers usually feel worse.
It is extremely important to tackle depression as a CFS/ME symptom (if it is indeed present). If you suffer from depression as a CFS/ME sufferer, then this alone, is a very serious and soul-destroying symptom to experience.
But in addition to this, depression makes it extremely hard for anyone to recover from a chronic illness. So it’s very important to address depression, if it is part of your CFS/ME symptoms.
CFS/ ME: Causes
What causes chronic fatigue syndrome? Tough question!
The cause of CFS/ ME is unknown. Some people develop CFS/ME after an infection, but it’s not the same as the normal tiredness that often follows infection with the flu virus. Glandular fever is thought to be a common trigger for CFS/ME. However, many people who develop CFS/ME were previously fit and active.
There are several theories to explain CFS/ME, for example that it’s a disorder of the immune system or the hormonal system. Some research indicates that the nervous system is also involved in CFS/ME. However, more research is needed.
So far, doctors don’t have a diagnostic test that can accurately detect CFS/ME. The condition is not curable, and so far, no medications are approved as treatments for it. Researchers are, however, getting closer to understanding the causes of CFS/ME and learning more about treatments.
In the follow-up alert, I will look at possible causes for this debilitating condition and explore treatments available to make life more bearable for sufferers.
Spending time with Philip has given me priceless insight into something I did not understand. The last time I saw him he asked me to go on a bicycle ride with him – which amazed me because it involved physical activity. I eagerly joined him and we spent a lovely afternoon together cycling around London. After an hour of steady comfortable physical activity, Philip said: “We should turn back soon because I don’t want to pay for this new lease on life tomorrow…”
CFS/ ME: Support and Community:
The ME Association
0870 444 1836
National ME Centre
Association of Young People with ME (AYME)
Action for ME
0845 123 2380
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Chronic fatigue syndrome or myalgic encephalomyelitis published online 01.01.08, hcd2.bupa.co.uk
Are ME/CFS & Depression The Same Thing? published online, sleepydust.net
Chronic Fatigue vs. Chronic Fatigue SyndromeBy Adrienne Dellwo, published online 26.01.09, chronicfatigue.about.com
Differences between CFS/ME and Fibromyalgia: Are Chronic Fatigue Syndrome and Fibromyalgia the Same Thing? ?? by Maija Haavisto, published online 12.11.08, chronic-fatigue- syndrome.suite101.com