This blog has been very helpful to me during the worst times of my illness. It has been there when I was feeling like my life was going nowhere and when the ignorance of others (particularly the medical profession) has been overwhelming. While I am not cured I am a great deal better and am nearing the end of my degree which means that maybe it is time to say goodbye to my blog. I may one day need to return to Real Life Sisyphus to help me get through new life challenges created by having a chronic illness but for now I feel the need to call time on this blog. I hope that it has helped others understand the life of those with CFS/ME or help sufferers understand their illness better. Very little information is out there and the honesty of other blogs has helped me very much to understand where I stood and how to manage my symptoms.
I would like to end on a cycle that I have realised as a result of a lecture recently on chronic pain (in the context of a clinical psychology module).
It appears that chronic pain is viewed in a similar way to chronic fatigue by the medical profession. Chronic pain is generally considered to be pain that is long lasting but without the presence of anything that actually causes pain. While the causes of physical pain are complex and very little is understood, generally the view is that chronic pain is caused by a person being afraid of using a particular muscle or joint because they fear the consequent pain - which in turn leads to the muscle or joint stiffening and becoming painful. Psychologists believe this leads to a vicious cycle in which the patient doesn't use their painful muscle or joint because they think it will hurt, causing it to hurt, causing them to not use it and so on.
I know very little about this cycle, definitely not enough to comment on how accurate it is but I do know two things. The first is that if you look at research into treatments for chronic pain based on this theory, they generally don't work. The second is that this sounds remarkably similar to the medical profession's views on chronic fatigue: fatigue is caused by not exercising due to the fear of exercising, not exercising leads to muscle atrophy and fatigue, fatigue leads to not exercising and so on. I know this second view to be rubbish, partly because treatments for fatigue based on this paradigm also don't work, and partly because I have attempted to push through my fatigue before (believing it myself to be simply muscle atrophy and laziness) which made my illness much worse.
This perspective of the medical profession leads to the belief that CFS/ME sufferers have 'untrue' and 'unhelpful' beliefs concerning their fatigue such as 'All doctors are arrogant/lazy (insert your favourite adjective here!)', 'I feel horrible so something must be really wrong', 'Doctors should work to cure me because I am sick'. Personally I think all of those, maybe I am crazy really.
But on the other hand, if doctors have this perspective they will talk to patients in a way that actually encourages these thoughts in some cases. I have had doctors not talk straight with me about my symptoms regularly which confirms the first belief for example. Where doctors believe that you are almost making it all up, they are naturally going to talk to you in a condescending way and not take you entirely seriously, despite their best efforts to appear sincere. This behaviour then causes the "untrue" and "unhelpful" beliefs, confirming the doctor's perspective of the patient. So maybe I'm not crazy? Maybe my "unhelpful" beliefs are the result of my doctor, not my illness?? My cynicism of doctors is definitely something that has developed very recently and way after my illness started.
Having said the above, I have met the odd very helpful and straight-talking doctors and medical professionals:
- my physiotherapist at my university doctors surgery, who helped me with pacing and not letting my illness hold me back
- Dr. Bansal at the Epsom and St. Helier hospital
- the CFS/ME team at Sutton Hospital
- the lovely nurses at my university doctors surgery, who have given me my B12 injections with little fuss and pain.
Thanks to all of the above, as well as the many friends and family members who have supported me during my worst times, despite many attempts to push them away through letting out my frustrations and fear. You are all amazing.
Showing posts with label Research. Show all posts
Showing posts with label Research. Show all posts
Tuesday, 6 January 2015
Monday, 7 July 2014
The Fundamental Attribution Error
Some psychology student somewhere will google this title and be a little confused as to what's it's doing here. I suppose most other people may be confused too.
As a psychology student, one of the many (many, many) things I have learnt about this last year is the fundamental attribution error. Generally, this is the belief (often made erroneously) that a person's behaviour is due to their own opinions and motivations.
For example, there was a psychology study in which participants were asked to listen to two opposing speeches. Both of the people giving the speeches were given a particular topic to speak on that was controversial and didn't necessarily fit with their viewpoint. Despite the participants being told that the speech topic had nothing to do with the speaker's views, they still attributed the opinions in the speech to the person speaking. So the speaker talking about how battery farming was great was viewed as being someone who supported battery farming, despite always buying free range.
This can also apply to everyday things, such as assuming that a sharp reply from someone is because they dislike you maybe, or have little patience. Usually, this isn't the case (hence F. A. error). I'm not sure why people see others like this but it has some negative consequences when people see the behaviour of those with invisible illnesses.
If I was chatting with a friend and then had to say that I was sorry but I needed to go rest, this could very easily be perceived as me being bored with the conversation rather than me being exhausted and having to drag myself away. And it often is perceived that way. Unfortunately in my world, and in the world of many others with invisible illnesses, can't and won't are entirely different. People who have had activities taken away from them due to illness generally would LOVE to keep doing them. Even doctors sometimes get this one wrong and see the patient's describing being unable to do things as not wanting to do things and diagnose it as depression.
Our brains would like to fit things into neat boxes and so will attempt to make the fundamental attribution error, but you don't have to listen.
As a psychology student, one of the many (many, many) things I have learnt about this last year is the fundamental attribution error. Generally, this is the belief (often made erroneously) that a person's behaviour is due to their own opinions and motivations.
For example, there was a psychology study in which participants were asked to listen to two opposing speeches. Both of the people giving the speeches were given a particular topic to speak on that was controversial and didn't necessarily fit with their viewpoint. Despite the participants being told that the speech topic had nothing to do with the speaker's views, they still attributed the opinions in the speech to the person speaking. So the speaker talking about how battery farming was great was viewed as being someone who supported battery farming, despite always buying free range.
This can also apply to everyday things, such as assuming that a sharp reply from someone is because they dislike you maybe, or have little patience. Usually, this isn't the case (hence F. A. error). I'm not sure why people see others like this but it has some negative consequences when people see the behaviour of those with invisible illnesses.
If I was chatting with a friend and then had to say that I was sorry but I needed to go rest, this could very easily be perceived as me being bored with the conversation rather than me being exhausted and having to drag myself away. And it often is perceived that way. Unfortunately in my world, and in the world of many others with invisible illnesses, can't and won't are entirely different. People who have had activities taken away from them due to illness generally would LOVE to keep doing them. Even doctors sometimes get this one wrong and see the patient's describing being unable to do things as not wanting to do things and diagnose it as depression.
Our brains would like to fit things into neat boxes and so will attempt to make the fundamental attribution error, but you don't have to listen.
Wednesday, 31 July 2013
The Infamous PACE Trial - Ignorance is No Excuse
So I can't be alone in my experiences of the NHS. Thankfully, other than the whole CFS/ME thing, I have always been very healthy and I've only been to A&E once and as a hospital outpatient once, both for fairly trivial things. And they have always been helpful.
It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.
They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.
Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.
Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.
Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!
And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.
CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.
I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.
It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.
It's this CFS/ME thing that seems to have them a cropper, and from what I've heard it's not the only illness that stumps them.
They have so far not found any definitive test for CFS/ME as they have no idea what causes it. From my research of the studies that I can find on this condition, there have been smaller studies which have very few participants and actually come up with something tangible, and there has been the infamous PACE trial.
Not having signed up for the Lancet (who have cheekily classified the study under 'psychiatry') I can't see the whole PACE trial paper, you can only get access to the abstract. So I'm relying on those who have read it - and these such people are generally thoroughly cheesed off.
Being a psychology student who is trained to read research papers and then tear them to pieces, I would definitely rate the flaws in the PACE trial as enough to make it a very unreliable study. For starters, it is based on the idea that CFS/ME is caused by the brain telling the body it's much more tired than it really is leading to people with the condition resting too much. I believe this to be a completely wrong assumption, and I cannot find any studies that support the PACE trial's belief other than a lack of strong evidence with one biological cause.
Also, in terms of participants, the PACE trial only included those healthy enough to travel to the trial, which is only a small percentage and only includes those least affected. Participants dropping out would mean that only those for whom the 'treatments' worked/didn't harm would continue to the end. And the diagnostic criteria are way too lenient and include people who don't even have CFS/ME!
And so, stupidly, NICE (who advise doctors as to evidence-based treatments and diagnostic tools) have been sucked into the findings from this study - which means that us poor patients are being offered CBT (a form of psychological therapy based on combatting faulty thinking) and Graded Exercise Therapy which is a form of gradually increasing your exercise levels.
CBT appears to be not un-useful, unless you are told by the therapist that the whole thing is in your head, because anyone with a chronic illness could do with some help coming to terms with it. On the other hand, GET has in a large number of cases been found to be very hard on patients and make them worse, not better.
I am appalled that such a study is the only one that has been suitably funded and that NICE have decided that such treatments are enough for the victims of CFS/ME. It does not even begin to cover what could be useful for those who are severely affected either, who are let down by those who are supposed to be caring for them.
It all comes down to this wrong belief that CFS/ME is 'all in your head'. It is insulting. Just because you have not bothered to do research that finds a biological cause, you do not have the right to blame it on psychology instead, especially without proper follow-through. Ignorance is no excuse in the medical profession.
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