Understanding Chronic Fatigue Syndrome And Myalgic Encephalomyelitis


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

  • palpitations
  • sweating
  • feeling faint or problems with balance
  • painful glands in your neck or armpits
  • a sore throat
  • headaches
  • 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
01708 378050

Association of Young People with ME (AYME)

Action for ME
0845 123 2380

Bear in mind all the material in this email alert is provided for information purposes only. We are not addressing anyone’s personal situation. Please consult with your own physician before acting on any recommendations contained herein.


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

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  • I’ve been treated for depression on and off my whole life. I’ve never responded well to antidepressants. CFS describes my symptoms, how do I convince my doctor to consider this? Shall I ditch the pills?

  • Is it possible that this person is suffering from chemical intolerances? It might be worth considering this as a possible cause of the problem and if chemicals are the cause of this person’s difficulties then removing the chemicals which cause the problem might result in an improvement in the condition.

    Such intolerances have the same effect on me but if I avoid all the chemical irritants I am very well.

  • I personally suffered from M.E. for seven years from 15-22, and was virtually bedbound for the first two years. After numerous different treatments I tried (and reading over 500 books in the area of health etc) I eventually recovered (and had a book published about my story). Having been through so much myslf, I felt compelled to help others and went onto set up a clinic in London specialising in the area. We’ve subsequently gone onto treat over 5,000 patients in over 25 countries with M.E./C.F.S./Fibromyalgia and recently won CAM Magazines Outstanding Practice Award based on our approach of researching and testing all the different treatments out there. If anyone is interested in finding out more about treatment for these conditions, you can find us online by doing a search for Freedom From ME.

  • Further to the very comment made by Sorrel Pindar re the work of Dr. Raymond Perrin, I would like to confirm that his treatment method really does work! I was diagnosed with ME secondary to severe spinal damage following failed spinal surgery. For years I felt sick, dizzy and exhausted, with sore throats and chronic thirst which I always put down to my chronic neurological pain. Very soon after I started the Perrin treatment my nausea and dizzyness improved dramatically. That alone feels like a miracle. I am one year into treatment and making good progress. I would urge anyone with ME to give it a go.

  • I have been treated with chronid Depression for over 20yrs, it was only after an accident at work last year, 2008 that one of the Doctors who treated me, had a good long chat with me when I visited her clinic. Just for once she seemed to understand my symptoms exactly. And rather than dish out more ‘ Prozac’, just one of many drugs that I have been given. She almost read my life story of symptoms. She discovered I had an underactive thyroid, low blood pressure, and had great trouble sleeping.
    During 2008 I think I slept through the whole year. I suffer from ‘chronic back problems also. After my accident at work I developed ‘ Sweet Syndrome’, which destroyed my immune system. I had to resign from work, which made matters worse.I still want to crawl back into bed & have ‘Duvet days, but I envy other people who seem to get on with their lives without constantly being unwell, I think people are gettin a little fed up with me now.

  • I have been feeling tired for the last 8 years,and at times really exhausted.Any little physical effort leaves me tired. I have had numerous blood test that have shown nothing abnormal.The initial assessment was that my chronic fatigue was caused as a reaction to Larium, an anti-malaria table which I took on the way to a holiday to Africa. My fatigue is affecting my work too, and I am going through tests again, with the doctor looking at my glands. I have a colleague at work who had the same symptoms for 18 years, untill she was referred to a specialist by her doctor, a few months ago. They discovered that it was her thyroid glands that was not working properly, and she is now on medication and feels great. If my recent tests prove inconclusive, I am going to ask my doctor to refer me to a specialist. According to my colleague, she too had many blood tests before which proved inconclusive. I used to play football, but have not kicked a ball in 8 years.

  • Hi

    I’ve just read your excellent article on CFS/ME. I would like to draw your attention to the work of Dr Raymond Perrin, a Manchester osteopath who has been treating CFS for 20 years, using osteopathic techniques.
    The target of Dr Perrin’s treatment is the lymphatic system, which becomes extremely sluggish in CFS patients to the point that the valves in the vessels fail and backflow develops. the lymphatic system is responsible for removing wastes from the body tissues (veins only carry away blood plasma and small particles), so this backflow results in the build-up of metabolites and other toxic wastes in the tissues, and in the brain.

    The treatment offered by Dr Perrin, the Perrin Technique, serves to improve flow through the lymphatics and to restore normal fluid motion in the brain. The treatment is not an overnight cure and requires a commitment of between three and eighteen months depending on the severity of the illness and how long the patient has been ill for.
    Obviously if you’ve been ill for 25 years it will take considerably longer to restore your health than if you’ve only been ill for a few months. The other important aspect of the Perrin Technique is that it encourages the patient to take control with a home massage routine, gentle exercises, activity management and changes to diet.

    There is a network of practitioners around the country who have been trained in the Perrin Technique (myself included). Further information can be found on the website: http://www.theperrinclinic.com.

    Also see: http://www.jaoa.org/cgi/content/full/107/6/218

    With kind regards

    Sorrel Pindar
    Registered Osteopath

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