I’ve been doing some research lately for the speech that I’m doing next week at the WI and I saw this article on the ME association website about a book called Cure, by Jo Marchant and wanted to share it.
The extract in the article is about a lady called Samantha Miller who suffers with ME, and the first thing that strikes me is that it is called a “controversial” illness. I really didn’t think that ME was still controversial, obviously I am extremely out of the loop and I thought that in 2016, 24 years after I first got this condition and 23 years after I finally got a diagnosis after a year of going through every test, crazy doctor and mental health worker that I could possibly see, that ME was seen as a health condition in it’s own right, and that people weren’t treated as if it was all in their minds…
After an introduction to Samantha and a brief history of her health we have this paragraph:
Chronic fatigue syndrome is one of the most controversial conditions. Researchers, doctors and patients struggle to agree on its name, its definition or even whether it exists. But the prognosis is bad. An analysis in 2005 of trials that followed patients for up to five years concluded that the recovery rate is 5%.
I honestly did not think that people still challenged the existence of ME!! I knew that there was discussion around the name, but that’s normal for me as my autoimmune condition has recently had a name change, and people were very passionate about what it should and shouldn’t be called and the connotations and implications of having the word chirosis in the name, so if it’s called ME, ME/CFS, or CFS, or if these are all distinct conditions is just part of the discussion around the condition for me, and not something that I am hugely interested in, but to think that people don’t even believe that it exists it completely nonsensical to me!!
It goes on with an explanation of the symptoms and then, “Medical authorities now agree that it is a genuine, discrete condition, even though its causes are debated, but many sufferers still feel they are dismissed as hypochondriacs who need to pull themselves together.” So it is real? We’re just not treated as if it is? Very confusing!
Tim Noakes and Alan St Clair Gibson did a study into athletes suffering from fatigue and found “although there is a physical limit to what the body can achieve, the brain acts in advance of this limit, making us feel tired before any signs of damage occur. In other words, fatigue isn’t a physical event, but a sensation or emotion, invented by the brain to prevent catastrophic harm. They called the brain system that does this the “central governor”.” This is interesting, and as the article goes on to say that if people are convinced that they have an incurable condition, then they with never recover. I do believe that your mind plays a huge part in determining lots of things, and it can have an effect on your health. I am a great believer in positive thinking and that having a good attitude can help you get through things, but I don’t think that positive thinking alone is going to cure you of a health condition!
Getting back to Samantha, she went to see a Doctor Peter White who was working on GET “White was developing similar ideas about chronic fatigue. He doesn’t call it a central governor, but he too believes that a combination of triggers – genetic, environmental, psychological – overwhelms the body and throws the nervous system out of balance, causing the brain to reduce massively what it considers a safe level of exertion. To try to reverse the change, he developed with colleagues an approach called graded exercise therapy (GET), which is intended to work like an ultra-gentle form of interval training.” White uses this along with CBT to help his patients and started Samantha off with tiny movements like rolling over in bed, moving on to sitting up, standing, cooking a meal in parts, then walking outside for 3 minutes. Taking it this slowly meant that getting back to a “normal” life took her 5 years and she had to be so disciplined about what she did so that she didn’t over do it and end up back in bed for weeks to recover. This sounds amazing and so challenging at the same time! To go from being unable to sit up in bed to living a normal life over any period of time I think is brilliant, but to take 5 years seems like ages when you’re at the lying in bed stage.
This research was not loved by the ME community and groups preferred to advocate pacing as a method of managing your life with this condition, so they did a trial with groups trying the pacing method (APT) alongside groups being treated with CBT and GET “The researchers published their results in the Lancet medical journal in 2011. They found that APT was ineffective; patients in this group did no better than the controls. But GET and CBT were both moderately helpful, reducing fatigue and disability scores significantly more than in the other two groups. What’s more, 22% of patients recovered after a year in the CBT and GET groups, compared with only 7–8% in the other two groups.” This didn’t go down well either, which I personally don’t understand.
White goes on to say “A wider shift in attitudes might help patients to accept that physical and psychological factors are entwined in their illness, he argues, without fear of being stigmatised. Chronic fatigue isn’t either biological or psychological. It’s both.” I’m with him on this and the final paragraph about Samantha reinforces this for me “It is now two years since Samantha Miller recovered. “I do more than a lot of women my age,” She says, “I cycled here. I manage to co-ordinate my accessories!” She has to be careful – a challenging bike ride, or getting too stressed at work, can trigger her symptoms. “You have to step back mentally and physically,” she says.”
There are a few comments at the bottom of the article, and I have to agree with the one at the bottom of the page, that ME/CFS is an illness. It affects your ability to carry out your day to day life, it limits what you can do and causes very real physical symptoms. I think that the holistic approach to treating ALL health conditions is the path that we need to go down as a society. Having a chronic illness is a very challenging thing to deal with, and some mental health support is, in my mind, always going to be required in order to manage your life. I think that trying to distinguish between being treated for physical symptoms, OR psychological symptoms is the wrong way to go about things, and that we are whole people, we are complex and we need to be treated as such with help and support for every aspect and issue that arises when we are ill.
What do you think?