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'It Isn't Just In My Mind!': Four Problems in Diagnosis and Treatment of ME/CFS

08/04/2016 10:02 | Updated 08 April 2016

In my previous article about Myalgic Encephalopathy (ME)/Chronic Fatigue syndrome (CFS), Madeleine Lee, long time sufferer of the condition explained her journey of 30 years since she first began experiencing symptoms of the illness.

Although understanding of the condition has improved steadily over recent decades, there is still a gap in knowledge even in clinically advanced countries, as Madeleine explains in her latest video on the subject. Alongside daily experiencing the debilitating symptoms of the condition, such as muscle pain, intense fatigue and cognitive impairments, those who suffer with ME also have to fight even to have it recognised. Here are four of the most common issues in the diagnosis, and treatment, of this life altering condition.

1. There's no test to prove it

Although you can be diagnosed with ME/CFS by meeting a number of set criteria, there isn't actually a clinical test to confirm your diagnosis. As with mental illnesses such as depression or anxiety, you can be diagnosed if you are consistently displaying a set number of the symptoms, which include post-exertional fatigue, muscle and/or joint pain and cognitive dysfunction, such as difficulty thinking and inability to concentrate, as well as a number of other symptoms that can affect sufferers with differing degrees of severity. Those at the severe end of the spectrum can often be bed-bound by their symptoms.

The key factor in the diagnosis of ME however, is that as well as needing to meet the criteria, doctors also have to rule out any other medical or psychological issue that could be causing the symptom. This can make it incredibly difficult to diagnose, especially if the person is suffering with any other condition that may crossover into these symptoms.

2. Because of this, there is a lot of misdiagnosis...

Due to the fact that ME/CFS shares some similar symptoms to common mental illnesses such as depression (e.g insomnia, exhaustion, lack of ability to concentrate), there has been a tendency for some less informed doctors to diagnose depression or personality disorders, and even prescribe anti-depressants as a solution to the problem, as Madeleine explains in her latest video:

"I've just had three visits to doctors here in France. The first doctor who was so old fashioned he basically said to me, 'you're just depressed and it's in your mind. He was actually very patronising and told me that I was lucky to have a husband to look after me, and that if I could just think differently, then I would be well. So then I try another doctor she's French, young, seems really lovely. So we sit in the surgery and I'm telling her my symptoms, and then she turns around to my husband and says 'I think its in her personality' That's so upsetting when people say things like that to you. I have had 30 years of therapy. I've done so much, and I feel so peaceful in my mind, and my heart because of this. So I thank ME for that, BUT I'm still feeling ill so it's got to be something that's physically happened to my body. It isn't just in my mind"

3. No cause has been confirmed

The World Health Organisation lists ME/CFS as a disorder of the nervous system, under 'Post-Viral Fatigue Syndrome'. There have been many studies that appear to have found a link between the start of the condition, and the onset of a virus in the sufferer, but as yet this is still officially unconfirmed. Others believe that it could be caused by a number of factors combined such as nervous system and hormone abnormalities, immune system abnormalities, stressful conditions and exposure to toxins. The inability of the medical profession to understand the cause of ME/CFS has lead to a great deal of controversy in decades past with many refusing to recognise it as a medical condition. Although this has improved a great deal, there is still a lot of misunderstanding, as Madeleine's experiences show.

4. There is a woeful lack of treatment available

The additional frustration for those who suffer from ME/CFS like Madeleine, is the fact that even when you win the battle of finding a doctor who is willing to diagnose you, there is often a lack of treatment they can offer you.

"Now the second doctor I went to, she was British and she believed in ME. Now it was almost like it was quite boring that I came to her with ME because she said, 'There's nothing we can do about it, take an antidepressant, if you need to take some extra vitamins, there's nothing we can do.' I came away thinking she wasn't the right doctor for me, and I did actually speak to her a little bit later and say 'is there any way we can do some more tests because I keep just having the same old blood tests, is there something else?' 'Well we could do....' but then my B12 came back alright, and all the normal run of the mill blood tests, and then it's 'sorry there's nothing we can do for ME'..."

Unfortunately we are still at the stage where there is no cure for ME/CFS. Although pain relief, sleeping tablets and vitamins among other things can be prescribed to ease some of the symptoms of the condition, there is no medicine that exists to tackle it as a whole. Doctors familiar with the condition often advise energy management techniques such as pacing and graded exercise to help people maintain as normal life as possible, but even these have their limits. More research is being done on the condition all the time, and we have come a long way from the days of it being branded 'the yuppie flu', but for the 250,000 estimated sufferers of ME/CFS in the UK alone, it seems like there may still be a long frustrating path ahead to get the help they need.

You can watch Madeleine Lee's full video below:

For more information on ME/CFS please visit ME Research UK

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