Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
Well, if anyone has heard of the phrase "divide and conquer", it's certainly been achieved in this thread.
I see a lack of tolerance, compassion and understanding on both sides of the argument.
Many people are expressing views based solely on their own self-interests.
In those terms, both sides of the argument are identical.
If our community always approached this subject with the aim of mutual support and trying to further each others' needs and aims, then discussions wouldn't degenerate and become divisive.
We could be promoting each others' interests with enthusiasm.
In my opinion, promoting each other's needs, would also promote our own at the same time.
I'd like to see people with 'ME' treated as they would like to be treated, and I'd like to see people with 'CFS' treated as they'd like to be treated.
Patients have a lot of combined experience and insight, and they are the real 'experts' in this subject.
So, I think they should be listened to, and treatments designed for their needs, as they express them.
I understand both sides of the debate, and I agree with what Mark has said, that the subject needs to be addressed creatively, constructively, positively and inclusively.
It seems that some of the entrenched opinions, expressed in this thread, are probably irreconcilable, which I think is a shame. It seems futile discussing the subject, if people are not prepared to understand the subject from other people's points of view.
We should be asking questions of each other, and seeing what we can do for each other, not attacking each other for holding strong opinions based on years of illness.
My own opinion is that we need research, research and more research, based on subsets and exclusive cohorts (any cohorts, as long as they are as selective as possibly). Luckily, this seems to be happening in the USA.
And we need to get rid of the psychiatric lobby. I think we can all agree on that. Can't we?
And I think that clinics should be part of the research efforts, and should also focus heavily on misdiagnoses. The clinics should offer counselling for coping with long-term illnesses, and other emotional support. And they should organise home-support. (And they should offer physiotherapy, occupational therapy, and massage, if they are helpful for patients.) They should treat the illness as the severe biomedical illness that it is, including looking after in-patients. I'm not sure what they'd be able to offer, in terms of biomedical treatments, but they could be part of the effort to develop treatments, for subsets of CFS/ME. They should also diagnose patients by all the various diagnostic criteria, and keep records, to be part of the research effort. (I've never quite understood exactly what a clinical 'center of excellence' would involve, but I hope it would be along these lines.)
Also, patients should be offered social care and home assistance when needed, without having to jump through millions of hoops, only then to be denied it.
When I first became ill, I was bewildered, and desperately ill. (As we all were.)
Nothing was offered to me, and the doctor was clueless.
This has got to change, and patients have got to be offered real support and information.
This can only come about by treating the illness as a serious biomedical condition.
Four years later, I found out that there was a local NHS CFS/ME service.
What did they offer me? CBT/GET.
What an insult.
The consultant didn't even understand the nature of CFS/ME. He was ignorant.
I had improved a bit by the time I was offered a place at the clinic, so I was just about self-sufficient again (in terms of looking after my daily needs), and so I could make it to the clinics and participate in the group.
But the illness that I'd experienced was not represented at that clinic.
I'd been totally physically knocked out, with severe malaise and weakness, not even able to stand up, but the group therapy just involved talking about irrelevant nonsense, cutting out pictures from magazines to make a collage, and planning daily activities etc. (As if my illness was a result of me having an infant-like mental capacity.)
What a load of patronising, neglectful and insulting nonsense.
So, I think we should focus on supporting each other.
And on positive and creative advocacy.
I see a lack of tolerance, compassion and understanding on both sides of the argument.
Many people are expressing views based solely on their own self-interests.
In those terms, both sides of the argument are identical.
If our community always approached this subject with the aim of mutual support and trying to further each others' needs and aims, then discussions wouldn't degenerate and become divisive.
We could be promoting each others' interests with enthusiasm.
In my opinion, promoting each other's needs, would also promote our own at the same time.
I'd like to see people with 'ME' treated as they would like to be treated, and I'd like to see people with 'CFS' treated as they'd like to be treated.
Patients have a lot of combined experience and insight, and they are the real 'experts' in this subject.
So, I think they should be listened to, and treatments designed for their needs, as they express them.
I understand both sides of the debate, and I agree with what Mark has said, that the subject needs to be addressed creatively, constructively, positively and inclusively.
It seems that some of the entrenched opinions, expressed in this thread, are probably irreconcilable, which I think is a shame. It seems futile discussing the subject, if people are not prepared to understand the subject from other people's points of view.
We should be asking questions of each other, and seeing what we can do for each other, not attacking each other for holding strong opinions based on years of illness.
My own opinion is that we need research, research and more research, based on subsets and exclusive cohorts (any cohorts, as long as they are as selective as possibly). Luckily, this seems to be happening in the USA.
And we need to get rid of the psychiatric lobby. I think we can all agree on that. Can't we?
And I think that clinics should be part of the research efforts, and should also focus heavily on misdiagnoses. The clinics should offer counselling for coping with long-term illnesses, and other emotional support. And they should organise home-support. (And they should offer physiotherapy, occupational therapy, and massage, if they are helpful for patients.) They should treat the illness as the severe biomedical illness that it is, including looking after in-patients. I'm not sure what they'd be able to offer, in terms of biomedical treatments, but they could be part of the effort to develop treatments, for subsets of CFS/ME. They should also diagnose patients by all the various diagnostic criteria, and keep records, to be part of the research effort. (I've never quite understood exactly what a clinical 'center of excellence' would involve, but I hope it would be along these lines.)
Also, patients should be offered social care and home assistance when needed, without having to jump through millions of hoops, only then to be denied it.
When I first became ill, I was bewildered, and desperately ill. (As we all were.)
Nothing was offered to me, and the doctor was clueless.
This has got to change, and patients have got to be offered real support and information.
This can only come about by treating the illness as a serious biomedical condition.
Four years later, I found out that there was a local NHS CFS/ME service.
What did they offer me? CBT/GET.
What an insult.
The consultant didn't even understand the nature of CFS/ME. He was ignorant.
I had improved a bit by the time I was offered a place at the clinic, so I was just about self-sufficient again (in terms of looking after my daily needs), and so I could make it to the clinics and participate in the group.
But the illness that I'd experienced was not represented at that clinic.
I'd been totally physically knocked out, with severe malaise and weakness, not even able to stand up, but the group therapy just involved talking about irrelevant nonsense, cutting out pictures from magazines to make a collage, and planning daily activities etc. (As if my illness was a result of me having an infant-like mental capacity.)
What a load of patronising, neglectful and insulting nonsense.
So, I think we should focus on supporting each other.
And on positive and creative advocacy.