United Kingdom: ME Association governance issues

Jonathan Edwards said:
It says that he is a GP in Essex.
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aha:

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Dr Tony Copperfield is pen-name of two British doctors - Dr Keith Hopcroft and Dr Martyn Hobley - who are GPs.
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This is very confusing. Are we pond life, or are we victims of gaslighting? I was so pleased to read the article in Pulse that at last tells the truth about the whole psychobehavioural nonsense pushed in ME/CFS, Long Covid, FM and pain clinics in the UK. The emperor has no clothes and Copperfield is prepared to say so.
Isn't that a wholly good thing?
 
forestglip said:
Interesting and refreshingly self-aware.


Some patients. But other forums are filled with people who think the treatment is in the next supplement. Or people who don't read about ME/CFS every day like us. They got sick, the doctor says there's a name for it, and they expect the doctor to do something to make them feel better.
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They are looking for the cures because no doctor has told them that they aren’t any cures. You’ll always find some people that are unwilling or unable to accept their ill health with no treatments, but that number can be drastically lowered if the doctors did their job.

Edited for accuracy.
 
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I think the Pulse article perfectly encapsulates the way that ME/CFS is perceived and framed by many doctors – that the primary problem is for the poor GPs who don’t know what to do with these inconvenient patients who block up their clinics, rather than the suffering of patients. That is why SW was embraced – he offered them a way to get rid of their patients.

From SW interview on The Life Scientific:
And as I got a bit older I had a stroke of luck that I went to Queens Square, The National Hospital for Neurology and that was in this fantastic hospital, surrounded by neurologists, so there were only three psychiatrists, and that’s when I really started to get interested in research, and that’s where I got interested in “chronic fatigue syndrome”.

And because these patients were being seen there. I have to be honest, and say nobody really liked them.
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Fill transcript: https://meassociation.org.uk/2017/0...life-scientific-bbc-radio-4-13-february-2017/

Discussion of SW including that interview: https://www.s4me.info/threads/who-is-simon-wessely.9364/
 
Jonathan Edwards said:
There are a few doctors already taking a medical approach, like Binita Kane, but we need them to be responsible and pushing forward with proper studies.
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As usual, I’m struggling to keep up. My unreliable memory tells me that you were critical of Binita when she appeared to be promoting micro-clot theories and experimental treatments. Do you feel she is pulling in the right direction these days?

Jonathan Edwards said:
And on the buildings side, we have the facilities. It is just that at present they are dedicated to treatment of leukaemia and the like. At UCLH there are single rooms that can be darkened and are sound proof. Nurses come in and out quietly and either alone or in pairs if the person needs lifting etc.. I have recent experience of this because poor Jo Cambridge spends a lot of time in just such a room.
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Really sorry to hear that Jo is so poorly again.

There is a members thread about Jo here but the last post indicated that she was much better:
 
BrightCandle said:
This is a strawman on patient expectations. The patients know there isn't a cure, they are seeking diagnosis and symptom relief. They want their condition accurately reflected in their medical records, having the guidance applied with good intent and for their doctors to represent properly how sick they are and apply their part in pressure to get real research done. Most importantly they want doctors to stop harming patients.

If the only reason they are denying diagnosis and symptom relief treatments and sending patients off to be harmed is because the conversation that it can't be cured is too hard than frankly the situation is not just that they are appalling, its worse much worse than that. Because telling people there isn't a cure is their job, the difficulty of that conversation in no way validates this behaviour at all.

Wow just wow.
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It's also completely transparent bullshit. Physicians have to deal with this every day. Well, most of them anyway. People die of diseases medicine can't do anything about every single minute. And about the only way we happen to end up dying because of this illness is the negligence. So they are actually making this problem far worse than it is, all to provide relief to themselves. By which they admit that they find relief in abandoning people to lifelong misery and early death, which is extremely disturbing. Even more disturbing is they don't even see anything wrong with admitting it. Even far more disturbing is that it can be admitted and it still changes nothing.

So even when they admit they're not honest about why they do this, they're not honest about why. They bullshit about why they bullshit. Which is normal, psychosomatic ideology is a system built entirely on lies with an ends justify the means approach. An approach that only ever leads to the same outcome: the means become the ends. Lies, the means, have become the end, the goal, so all they have is lies, even lying about lying.

There is no system that can succeed with even a fraction of this dishonesty. Not even minor systems. Not even a small cafeteria can function with a fraction of such blatant lack of integrity.

The one root cause to fix everything wrong in medicine starts with this, it's what unlocks everything: the truth, the whole truth and nothing but the truth. It's what would set everything else right, because everything wrong so obviously fails it, and everyone knows it because it's intentional.

This is an entirely human problem with a human solution. It has no natural limitations, nothing we can't fix, it's a purely made-up problem.
 
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Utsikt said:
They are looking for the cures because no doctor has told them that they are any. You’ll always find some people that are unwilling or unable to accept their ill health with no treatments, but that number can be drastically lowered if the doctors did their job.
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Which is perfectly normal given that there is zero meaningful support, professional or otherwise. A cure is the only good way out. The idea that sick people will just give up is so absurd that it's literally the main message about the behavioral treatments: "well, then, just give up and spend the rest of your life in bed", they will see to people literally seeking a cure from it.

If support were offered, along with the truth that no treatment exists, people would not continue to seek a cure. Medicine is refusing to solve a problem and essentially creates multiple problems as a result, all while making the original problem worse. It even makes them feel worse about it, but they refuse to change even though it's not even that they have the key to the solution, they closed the lock themselves and refuse to even admit that!

It's all so damn absurd. Nothing about this makes sense but it's impossible to even convince people that it must be fixed, even people who can plainly see this is all completely broken.
 
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