kermit frogsquire
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The next 87 posts have been split off from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014"
Thank you Professor Edwards! However, I am a little more cautious about a retaliatory attack on the "psychiatric model". Having met hundreds of patients over several decades and spoken with experts from both sides of the fence my conclusion is that there must be common ground - diametrically opposed opinions are not helping patients and they are not helping patients for the following reasons.
1. There certainly are patients with purely psychiatric who are diagnosed with ME/CFS, possibly more than those with organic disease.
2. The above patients main psychosis is that they believe they have an illness. They predominantly develop symptoms through hearing or reading about them.
3. It is both dangerous to those patients (for reasons of reinforcing their psychosis) and to the patients who have organic disease (for reasons that their illness becomes dismissed through decades of never ending argument) to deny these facts.
Perhaps a better way forward would be to have some form of dialogue with the "opposite side", put forwards cases of definitive organic disease, likewise be prepared to listen to their cases of definitive psychiatric illness - and yes there are many.
Perhaps a better was forward would be to abandon the label "CFS" and "M.E." completely - and two (or more) new separate entities coined, a formulation devised to separate those with psychiatric illness from those with organic disease? And no, neither the Canadian Criteria, nor the ICC achieve this.
Do meme's exist? - of course. We can hurl abuse and claim it is intellectually devoid, but we all know they exist. They exist for both patients and practitioners.
- the entire cottage industry that developed around ADHD is a meme, in some locations some 30% of children in the USA were/are diagnosed with it.
- Homeopathy is the memsiest meme of all.
- All the defunct alternative therapies (dare I mention the Lightning Process) are memes.
- Integrative medicine and anything Dr Cheny says seems to become a meme.
- The psychiatric idea that M.E. is "all in the head" is a meme.
- And lastly I'm sorry to say it, the idea that M.E. is "real" is a meme.
It is true, the words used in the BMJ were harsh and unsympathetic and twenty-five years ago, I would have been pissed off by comments from some nitwitt psychiatrist calling Chronic Fatigue Syndrome a meme.
But what I'm pissed off about now is that there is still a diametrically adversarial approach to ME/CFS, there is denail from both sides, and no one is using their brains to sit down, talk about the issue like professionals and help patients! Jesus - let's not continue to make ME/CFS some kind of war of belief!
I would love it if, just as with MS, Parkinson's, stomach ulcer, diabetes, or any of the other illnesses that psychiatrists once claimed (in a meme-like fashion) were "all in the head", some brilliant physician would sweep in and prove them all wrong. But my conclusion is, after the aforementioned decades, that just isn't going to happen. And the reason it isn't going to happen is because of the mess that ME/CFS has become, literally everyone is being diagnosed with it no matter what they have.
So, I don't want anyone to curry my favour, I want a solution that will separate the hotch-potch of ME/CFS, dialogue between sides, and a way forward.
The next 87 posts have been split off from this thread -- "BMJ Rapid Response: Is Chronic Fatigue Syndrome a meme? 18 June 2014"
In case anyone is in doubt abut my position on such things let me say that this is not just awful, it is very very awful and worse than even the worst comments above indicate. It is awful of 3 counts.
1. It is dangerous because a lot of doctors will think they can diagnose this psychosomatic condition without bothering to find out if there is something else wrong.
2. It is a crass insult to patients. Even if ME did have psychosomatic overtones doctors should know that this is not how you even help people with psychosomatic illness. There is clearly no evidence that interventions aimed at dealing with 'false beliefs' do anything. Somebody needs to take a basic lesson in human nature - how you talk to people in a way that does not piss them off completely - it helps to know a bit of that if you are doctor. Jesus - are they surprised that PWME are pissed off!
3. The whole fabric of the proposal about memes and emergent phenomena is just hot air. It is the pseudoscientific psychobabble of people who do not understand ... well anything much to be honest. Emergent phenomenon is what you call something when you want to explain it by magic rather than science (and do some bonding with other dim people who like emergent phenomena). If anyone has any uncertainty - there is no intellectual content here whatever.
Thank you Professor Edwards! However, I am a little more cautious about a retaliatory attack on the "psychiatric model". Having met hundreds of patients over several decades and spoken with experts from both sides of the fence my conclusion is that there must be common ground - diametrically opposed opinions are not helping patients and they are not helping patients for the following reasons.
1. There certainly are patients with purely psychiatric who are diagnosed with ME/CFS, possibly more than those with organic disease.
2. The above patients main psychosis is that they believe they have an illness. They predominantly develop symptoms through hearing or reading about them.
3. It is both dangerous to those patients (for reasons of reinforcing their psychosis) and to the patients who have organic disease (for reasons that their illness becomes dismissed through decades of never ending argument) to deny these facts.
Perhaps a better way forward would be to have some form of dialogue with the "opposite side", put forwards cases of definitive organic disease, likewise be prepared to listen to their cases of definitive psychiatric illness - and yes there are many.
Perhaps a better was forward would be to abandon the label "CFS" and "M.E." completely - and two (or more) new separate entities coined, a formulation devised to separate those with psychiatric illness from those with organic disease? And no, neither the Canadian Criteria, nor the ICC achieve this.
Do meme's exist? - of course. We can hurl abuse and claim it is intellectually devoid, but we all know they exist. They exist for both patients and practitioners.
- the entire cottage industry that developed around ADHD is a meme, in some locations some 30% of children in the USA were/are diagnosed with it.
- Homeopathy is the memsiest meme of all.
- All the defunct alternative therapies (dare I mention the Lightning Process) are memes.
- Integrative medicine and anything Dr Cheny says seems to become a meme.
- The psychiatric idea that M.E. is "all in the head" is a meme.
- And lastly I'm sorry to say it, the idea that M.E. is "real" is a meme.
It is true, the words used in the BMJ were harsh and unsympathetic and twenty-five years ago, I would have been pissed off by comments from some nitwitt psychiatrist calling Chronic Fatigue Syndrome a meme.
But what I'm pissed off about now is that there is still a diametrically adversarial approach to ME/CFS, there is denail from both sides, and no one is using their brains to sit down, talk about the issue like professionals and help patients! Jesus - let's not continue to make ME/CFS some kind of war of belief!
I would love it if, just as with MS, Parkinson's, stomach ulcer, diabetes, or any of the other illnesses that psychiatrists once claimed (in a meme-like fashion) were "all in the head", some brilliant physician would sweep in and prove them all wrong. But my conclusion is, after the aforementioned decades, that just isn't going to happen. And the reason it isn't going to happen is because of the mess that ME/CFS has become, literally everyone is being diagnosed with it no matter what they have.
So, I don't want anyone to curry my favour, I want a solution that will separate the hotch-potch of ME/CFS, dialogue between sides, and a way forward.
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