Today is ME Awareness Day. Many people have heard of ME, but the chances are that, unless you have ME, or are a carer for a person with ME (PWME), you do not really know it for the brutal debilitating effect it has. It wastes people’s bodies, fogs their minds and it can crush their spirits.
You might not really know ME because it is very difficult to diagnose. Often people with other fatigue conditions may be lumped in as ME patients. The key criterion for ME, in my opinion (other opinions are available) is Post Exertional Malaise (PEM). In other words you have only a certain limited amount of energy. If you go beyond that, you suffer PEM, which is not just taking a bit longer to recover, it is a crash that can last for weeks or more.
You might not really know ME because you do not understand what it actually does. Making it synonymous with “Chronic Fatigue Syndrome” is one of the worst misnomers ever. It is not just feeling a bit tired, it is not just feeling exhausted. Think of the worst flu you’ve ever had. Now think about feeling like that all the time. Think of constant stomach pain. Think of constant migraine. Think of headaches coming and going. Think of there never being an end in sight. Not everyone has these symptoms all the time; they are variable. But you never know when one is going to strike.
Another reason you might not really know ME is that you don’t see it. If people with ME are not stuck in bed (where you can’t see them) with their face fifty shades of ill, they might be sitting outside. And you don’t know that they can only walk ten yards. The illness is invisible, and PWME pay the same penalty as all the other people with invisible disabilities: people don’t believe they’re ill.
And you don’t really know ME if you think it is curable. It is not. Sometimes people get remission, which is fantastic for them. But many people never do, and all the cures that are touted as being 100% effective, well, they aren’t. Sometimes people get better after a “cure”. All the evidence suggests that it was random, or that they were one of those who had something other than ME in the first place. It also enables people to say that some cures have no side effects so it can’t hurt to try them. Wrong. One case among many: two sessions of acupuncture resulted in two weeks of deep illness. (And please don’t even think of saying, ah, that’s all the bad stuff coming out.)
The lack of robust scientific evidence for much of what happens in the ME world is a big problem, because it enables people to make all sorts of claims that cannot be challenged. If people claim something they really need to say what the evidence for it is rather than saying there is no evidence against it.
You really don’t know ME if you still think that the obvious things which work for other people work for people with ME. Just exercise your way out of it: recipe for disaster. What you think intuitively must work does not. It takes a good deal of attention to your own thinking process to accept that what seems like common sense to you just doesn’t work for people with ME. When they hit that wall that you cannot see, they crash, and there is no genuine way in which they can exercise their way past it.
Another reason you really don’t know ME is that nobody really knows ME (apart from those who have it). Scientific knowledge of ME is still in its very early stages. It is a complex and difficult condition to research. There is nowadays a great deal of work going on but it is like a giant jigsaw in which people are occasionally placing random pieces which don’t yet connect up in any meaningful way. There are many lines of research which look “promising”. No promise has yet borne fruit. It may well be that in ten years time, we will understand what causes ME and we will have cures for it. I have a hope, a desperate hope, that that is so. That will depend on scientists continuing to find more and more pieces of the jigsaw until patterns start to emerge, But we are only at the beginning of that process now. Going into detail about this is very difficult to do in a rational way. The research strands that are taking place are so disparate and disconnected at this stage that the simple way to summarise them is a list, a very long list. I will not do that here, but refer you for further information to Science for ME, which has a massive archive.
Another reason that you don’t know ME may be that some people have a vested interest in not telling you the truth. This is contentious, and I will be clear here that I am giving you my opinion and that other opinions are available. But many very much better versed people than me share my opinion. Some people would have you believe that ME is a psychological condition and can be cured by strategies such as cognitive behavioural therapy and graded exercise. A subset of those people equate ME with false beliefs, and posit that people can be cured by changing their beliefs. This stems partly from what is called the biopsychosocial model of illness which originally attempted to combine biological, psychological and social environmental explanations of illness so that a holistic portrait of the subject could be constructed. It is not a very good model and, once it entered mainstream thinking, it suffered perversion from commercially vested interests. In other words it was used to emphasise the “psycho” bit so that the focus was put on the subject’s beliefs and thought patterns at the expense of both biological and environmental factors. This was too useful to insurance companies looking for ways to reduce their claims bills to be ignored. And to people like Iain Duncan Smith, looking to punish ill people for being ill.
ME is a perfect playground for the biopsychosocial model because so much about the illness cannot be proved. The most prominent example of this approach is the PACE trial of 2005-2010, a five million pound examination of the effectiveness of treatments such as CBT and graded exercise for PWME. The architects of the PACE trial were highly experienced, skilled academics and scientists with international reputations, or, as I prefer to call them, snake oil salesmen (they were mostly men). PACE’s purported results – that CBT and GE were effective - are still robustly defended by its champions. But their methods and their findings have been dismantled with varying degrees of elegance and destructiveness by statisticians, clinicians and other academics and practitioners from all over the world. The most comprehensive demolition has been by David Tuller: see his Virology blog. An account of the PACE trial and the controversies surrounding it can be found at Mepedia. I won’t go into detail here, but just to give a flavour of the quality of the trial and its amendments, it was possible to emerge from the trial in a worse condition than you went in, and still be deemed “cured” (not just “improved” but actually “cured”).
Why would people defend a trial with such obvious flaws? I cannot see inside the minds of those who do, but I suggest a combination of arrogance, defence of reputation, commercial interest in particular outcomes and professional closing of ranks.
(Note: I do not believe that CBT is useless. It can be an effective tool for managing the condition and getting the best one can out of life within the limits ME imposes. But it is not, and never will be, a cure. As long as powerful people tout it as a cure, it is very difficult to advocate its use for what it can be used for.)
More than that, so many professionals disbelieve it that they regularly investigate parents of children who have it for child abuse or neglect. I can only state in the strongest terms that that should not be.
In a nutshell, it is a condition that, whatever you see on the outside, ruins life for those who suffer from it. It causes pain and extreme lethargy. It is also limiting because of an extreme lack of energy combined with the possibility of post exertional malaise. There is not yet a clear scientific explanation, not even a reliable method of diagnosis, but there is much research going on. A condition misunderstood and disbelieved by ordinary healthy members of the public and, shamefully, by many clinicians and researchers. A condition that takes away people’s ability to live their lives, to follow their hobbies or their desires. A condition that leads to millions being missing from the everyday lives of their friends and peers, and missing in fact from their own lives. #millionsmissing
You might not really know ME because it is very difficult to diagnose. Often people with other fatigue conditions may be lumped in as ME patients. The key criterion for ME, in my opinion (other opinions are available) is Post Exertional Malaise (PEM). In other words you have only a certain limited amount of energy. If you go beyond that, you suffer PEM, which is not just taking a bit longer to recover, it is a crash that can last for weeks or more.
You might not really know ME because you do not understand what it actually does. Making it synonymous with “Chronic Fatigue Syndrome” is one of the worst misnomers ever. It is not just feeling a bit tired, it is not just feeling exhausted. Think of the worst flu you’ve ever had. Now think about feeling like that all the time. Think of constant stomach pain. Think of constant migraine. Think of headaches coming and going. Think of there never being an end in sight. Not everyone has these symptoms all the time; they are variable. But you never know when one is going to strike.
Another reason you might not really know ME is that you don’t see it. If people with ME are not stuck in bed (where you can’t see them) with their face fifty shades of ill, they might be sitting outside. And you don’t know that they can only walk ten yards. The illness is invisible, and PWME pay the same penalty as all the other people with invisible disabilities: people don’t believe they’re ill.
And you don’t really know ME if you think it is curable. It is not. Sometimes people get remission, which is fantastic for them. But many people never do, and all the cures that are touted as being 100% effective, well, they aren’t. Sometimes people get better after a “cure”. All the evidence suggests that it was random, or that they were one of those who had something other than ME in the first place. It also enables people to say that some cures have no side effects so it can’t hurt to try them. Wrong. One case among many: two sessions of acupuncture resulted in two weeks of deep illness. (And please don’t even think of saying, ah, that’s all the bad stuff coming out.)
The lack of robust scientific evidence for much of what happens in the ME world is a big problem, because it enables people to make all sorts of claims that cannot be challenged. If people claim something they really need to say what the evidence for it is rather than saying there is no evidence against it.
You really don’t know ME if you still think that the obvious things which work for other people work for people with ME. Just exercise your way out of it: recipe for disaster. What you think intuitively must work does not. It takes a good deal of attention to your own thinking process to accept that what seems like common sense to you just doesn’t work for people with ME. When they hit that wall that you cannot see, they crash, and there is no genuine way in which they can exercise their way past it.
Another reason you really don’t know ME is that nobody really knows ME (apart from those who have it). Scientific knowledge of ME is still in its very early stages. It is a complex and difficult condition to research. There is nowadays a great deal of work going on but it is like a giant jigsaw in which people are occasionally placing random pieces which don’t yet connect up in any meaningful way. There are many lines of research which look “promising”. No promise has yet borne fruit. It may well be that in ten years time, we will understand what causes ME and we will have cures for it. I have a hope, a desperate hope, that that is so. That will depend on scientists continuing to find more and more pieces of the jigsaw until patterns start to emerge, But we are only at the beginning of that process now. Going into detail about this is very difficult to do in a rational way. The research strands that are taking place are so disparate and disconnected at this stage that the simple way to summarise them is a list, a very long list. I will not do that here, but refer you for further information to Science for ME, which has a massive archive.
Another reason that you don’t know ME may be that some people have a vested interest in not telling you the truth. This is contentious, and I will be clear here that I am giving you my opinion and that other opinions are available. But many very much better versed people than me share my opinion. Some people would have you believe that ME is a psychological condition and can be cured by strategies such as cognitive behavioural therapy and graded exercise. A subset of those people equate ME with false beliefs, and posit that people can be cured by changing their beliefs. This stems partly from what is called the biopsychosocial model of illness which originally attempted to combine biological, psychological and social environmental explanations of illness so that a holistic portrait of the subject could be constructed. It is not a very good model and, once it entered mainstream thinking, it suffered perversion from commercially vested interests. In other words it was used to emphasise the “psycho” bit so that the focus was put on the subject’s beliefs and thought patterns at the expense of both biological and environmental factors. This was too useful to insurance companies looking for ways to reduce their claims bills to be ignored. And to people like Iain Duncan Smith, looking to punish ill people for being ill.
ME is a perfect playground for the biopsychosocial model because so much about the illness cannot be proved. The most prominent example of this approach is the PACE trial of 2005-2010, a five million pound examination of the effectiveness of treatments such as CBT and graded exercise for PWME. The architects of the PACE trial were highly experienced, skilled academics and scientists with international reputations, or, as I prefer to call them, snake oil salesmen (they were mostly men). PACE’s purported results – that CBT and GE were effective - are still robustly defended by its champions. But their methods and their findings have been dismantled with varying degrees of elegance and destructiveness by statisticians, clinicians and other academics and practitioners from all over the world. The most comprehensive demolition has been by David Tuller: see his Virology blog. An account of the PACE trial and the controversies surrounding it can be found at Mepedia. I won’t go into detail here, but just to give a flavour of the quality of the trial and its amendments, it was possible to emerge from the trial in a worse condition than you went in, and still be deemed “cured” (not just “improved” but actually “cured”).
Why would people defend a trial with such obvious flaws? I cannot see inside the minds of those who do, but I suggest a combination of arrogance, defence of reputation, commercial interest in particular outcomes and professional closing of ranks.
(Note: I do not believe that CBT is useless. It can be an effective tool for managing the condition and getting the best one can out of life within the limits ME imposes. But it is not, and never will be, a cure. As long as powerful people tout it as a cure, it is very difficult to advocate its use for what it can be used for.)
More than that, so many professionals disbelieve it that they regularly investigate parents of children who have it for child abuse or neglect. I can only state in the strongest terms that that should not be.
In a nutshell, it is a condition that, whatever you see on the outside, ruins life for those who suffer from it. It causes pain and extreme lethargy. It is also limiting because of an extreme lack of energy combined with the possibility of post exertional malaise. There is not yet a clear scientific explanation, not even a reliable method of diagnosis, but there is much research going on. A condition misunderstood and disbelieved by ordinary healthy members of the public and, shamefully, by many clinicians and researchers. A condition that takes away people’s ability to live their lives, to follow their hobbies or their desires. A condition that leads to millions being missing from the everyday lives of their friends and peers, and missing in fact from their own lives. #millionsmissing
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