Let's take the Sackett model and look at the evidence-base for today's treatment of MECFS (see previous blogpost).
Sackett says that sound treatment for any medical condition is founded on:
1. The expertise of the medical professional.
2. The best evidence from research.
3. The patients' values and preferences.
All three are equally important.
Sackett says that sound treatment for any medical condition is founded on:
1. The expertise of the medical professional.
2. The best evidence from research.
3. The patients' values and preferences.
All three are equally important.
Let's see where MECFS fits into the diagram by asking a question for each of the circles.
1. Is there any clinical expertise in MECFS in the UK?
2. Is any MECFS research in the UK based on sound methodology?
3. Have researchers/ clinical experts ever listened to MECFS patients in the UK?
Many patients - and very possibly some researchers and academics around the world - would answer a blunt and perhaps cynical, 'No' to these questions. If the answers are all no, the centre bit where the circles overlap lies sadly empty with no evidence of any successful treatment for MECFS to show for all the research that has been done over the last few decades. Some might say, 'Yes! That's how it is.'
I do want to take a less blunt, less cynical look at this ... so let's not say, 'No' too quickly and we'll try to answer each question more fully.
First, in this blog the question is:
Is there any clinical expertise in MECFS in the UK?
There seem to have been more people researching than treating MECFS since the 1980s and in the UK they are mostly Psychologists. Latterly they have been joined in ME Clinics by Physiotherapists and Occupational Therapists whose work is based on research by ... Psychologists, making Cognitive Behaviour Therapy one of the leading (evidence-based??) treatments to improve physical function of MECFS sufferers.
I've read that some patients believe MECFS was 'hijacked' by Psychologists in the 1980s. It seems that MECFS management is a game of pass-the-parcel and whenever the music stops sharp-elbowed Psychologists grab the parcel ... made easy for them because nobody else wants it. In fact, Neurologists, Rheumatologists and Consultants in Infectious Diseases seem to consider it a poisoned chalice thus tossing the parcel in great haste to the next person like an electrifying game of Pass-the-Bomb.
It's understandable though that these medics, unable to find any clear, consistent symptoms that place MECFS in their specialty, would feel right in distancing themselves and their professions from the condition. I wouldn't consider any of these professionals fools, so I cannot believe they were truly wowed by the false-illness belief hypothesised by psychologists, that forced the condition into a psychological framework, like a jigsaw piece forced into the wrong ill-fitting slot. But perhaps it was easier to wash their hands of it knowing there was someone - an ever willing Psychologist - to pick it up. It seems no medical professional lingered long enough on MECFS in order to question it and to look for an evidence-base other than, it's all in the head.
So it seems in the UK that the search for an evidence base up 'til now has rested with Psychologists as the 'experts' in the field.
My next blog will add in the next two circles of Sackett's model, the research evidence and patient values and preferences and try to tease out how strong the evidence base is for today's treatment of MECFS.
Footnote: I have encountered an amiable Infectious Diseases Consultant and an extremely skilled and revered Neurologist who showed huge knowledge of MECFS and gave me very helpful support, but in my experience these professions do not want to hold the overall responsibility for MECFS.
1. Is there any clinical expertise in MECFS in the UK?
2. Is any MECFS research in the UK based on sound methodology?
3. Have researchers/ clinical experts ever listened to MECFS patients in the UK?
Many patients - and very possibly some researchers and academics around the world - would answer a blunt and perhaps cynical, 'No' to these questions. If the answers are all no, the centre bit where the circles overlap lies sadly empty with no evidence of any successful treatment for MECFS to show for all the research that has been done over the last few decades. Some might say, 'Yes! That's how it is.'
I do want to take a less blunt, less cynical look at this ... so let's not say, 'No' too quickly and we'll try to answer each question more fully.
First, in this blog the question is:
Is there any clinical expertise in MECFS in the UK?
There seem to have been more people researching than treating MECFS since the 1980s and in the UK they are mostly Psychologists. Latterly they have been joined in ME Clinics by Physiotherapists and Occupational Therapists whose work is based on research by ... Psychologists, making Cognitive Behaviour Therapy one of the leading (evidence-based??) treatments to improve physical function of MECFS sufferers.
I've read that some patients believe MECFS was 'hijacked' by Psychologists in the 1980s. It seems that MECFS management is a game of pass-the-parcel and whenever the music stops sharp-elbowed Psychologists grab the parcel ... made easy for them because nobody else wants it. In fact, Neurologists, Rheumatologists and Consultants in Infectious Diseases seem to consider it a poisoned chalice thus tossing the parcel in great haste to the next person like an electrifying game of Pass-the-Bomb.
It's understandable though that these medics, unable to find any clear, consistent symptoms that place MECFS in their specialty, would feel right in distancing themselves and their professions from the condition. I wouldn't consider any of these professionals fools, so I cannot believe they were truly wowed by the false-illness belief hypothesised by psychologists, that forced the condition into a psychological framework, like a jigsaw piece forced into the wrong ill-fitting slot. But perhaps it was easier to wash their hands of it knowing there was someone - an ever willing Psychologist - to pick it up. It seems no medical professional lingered long enough on MECFS in order to question it and to look for an evidence-base other than, it's all in the head.
So it seems in the UK that the search for an evidence base up 'til now has rested with Psychologists as the 'experts' in the field.
My next blog will add in the next two circles of Sackett's model, the research evidence and patient values and preferences and try to tease out how strong the evidence base is for today's treatment of MECFS.
Footnote: I have encountered an amiable Infectious Diseases Consultant and an extremely skilled and revered Neurologist who showed huge knowledge of MECFS and gave me very helpful support, but in my experience these professions do not want to hold the overall responsibility for MECFS.
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