Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

Indigophoton said:
If nothing else, the BPS lobby have amassed a large body of results that, read correctly (where they can be read at all), show that their hypotheses are wrong. If ME were psychological, they'd have proved it by now.
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And having failed to prove it they should have reassessed and moved on.

I begin to wonder exactly who are the subjects of their experiments:

the patient group: but as @Indigophoton points out they have already disproved their own theories.

the establishment: just how far can they be pushed to collude? How many will put their own careers and reputations on the line to keep the in-crowd happy?

society as a whole: how much cruelty and injustice can you inflict on a vulnerable group before people not directly affected are prepared to take notice?
 
How can you prove something is "psychological"?

First problem: How is "psyche" defined? Does there exist a unique definition of "psyche"? Does "psyche" define something from nature (e.g. some object, some physical/biological...entity), or is it something philosophical, normative, spiritual...? If it's something from nature, why wasn't it found and explained yet, and why is there no research about it's shape, characteristics etc.? To say something is "psychological" would need a definite correlation, maybe even causation, between a phenomenom and the psyche.

Second problem: Although we already have good technologies and know some things, we don't know and can't see or measure everything. So if with our knowledge we can't find the cause of some symptoms/illnesses, that doesn't mean it's psychological. It just means we don't know yet.
We can understand reality step by step, we will come closer and closer, but will we ever know its completeness?

You cannot prove ME is psychological. You cannot prove it's not. Believers will always find a way to explain why the psyche is the cause of everything.
 
Invisible Woman said:
society as a whole: how much cruelty and injustice can you inflict on a vulnerable group before people not directly affected are prepared to take notice?
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A lot, as we know from history and present.

As always I can only speak for the country I live in: people here are very pro psychological. Even in chit-chats, psychological matters are spoken about as about the weather. But behold, "psychological illness" is something disgusting, so you only speak about others and keep it secret if it's you. "Bad things" only happen to others, so why should I care about the consequences which arise from psycho and BPS beliefs? Most people who are healthy assume they will certainly remain healthy and that disadvantages that arise from illness will never affect them.

So why should the majority care about the Wesselys, Crawleys, Nixes, Henningsens and Finks of this earth?
 
Inara said:
So if with our knowledge we can't find the cause of some symptoms/illnesses, that doesn't mean it's psychological. It just means we don't know yet.
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Yes. Ignorance of cause is not the same as proof of some claimed cause. It could be biochemical, informational (the only type of "psych" disorder I think might exist), or a plot by aliens, the Illuminati or those evil creatures the unicorns. If you are going to claim its some unproven fictional cause, then you open the door to all the other unproven fictional causes. I "think" it might be a plot of the lizard people who hunt alligators in the sewers under major cities ... even in those countries where alligators do not exist! Pick your own far out there theory.

The brain is still largely unknown territory. We still wait for advances in technology. We are also just beginning to understand how the biology of the brain is tied to the biology of the gut, environmental toxins, a myriad of pathogens, and so on. Science takes time. We are still not close to a fully complete science of medicine. Its a work in progress.

The Age of Unreason is still alive and well in psychiatry it seems. Their theories are largely unproven and/or unprovable hypotheses at best.
 
Inara said:
A lot, as we know from history and present.

As always I can only speak for the country I live in: people here are very pro psychological. Even in chit-chats, psychological matters are spoken about as about the weather. But behold, "psychological illness" is something disgusting, so you only speak about others and keep it secret if it's you. "Bad things" only happen to others, so why should I care about the consequences which arise from psycho and BPS beliefs? Most people who are healthy assume they will certainly remain healthy and that disadvantages that arise from illness will never affect them.

So why should the majority care about the Wesselys, Crawleys, Nixes, Henningsens and Finks of this earth?
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True, it can be changed though, albeit slowly.

I'm thinking back to attitudes to being gay in the 80s, to people who contracted HIV, racism.... Now those prejudices do, sadly, still exist, but they are not considered to be socially acceptable anymore.
 
It's been a full week now, and I've still had no response from TEDxBristol regarding the letter, nor even acknowledgement that they received it. I sent it to several email addresses listed on their site, since they don't have a dedicated one for complaints or other problems.

I think the next step is to complain to TEDx and send them the same letter, perhaps with an extra introduction, though I'm busy currently with family and the holidays.
 
Invisible Woman said:
True, it can be changed though, albeit slowly.

I'm thinking back to attitudes to being gay in the 80s, to people who contracted HIV, racism.... Now those prejudices do, sadly, still exist, but they are not considered to be socially acceptable anymore.
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Changes can be made, absolutely. But not by few (unless they're rich). In the 80s (or starting in the 60s) the mentality was different. People were outraged; there even were some forms of revolts. (A revolt has not to be violent in order to be successful.)

That's, in my opinion, a problem, also with ME being mostly ignored. No outrage - no 'revolt', no change. (Well, we with ME don't lack the outrage. :) )

I think a very important factor is informing and making things public. That's what we (try to) do. I believe it was major that several people published critique about the PACE, and it started a change in the US (please correct me).

There's a very actual example: In Germany, abortion is illegal, but exempt from punishment. Any form of 'public' information about abortion (i.e. where to get it, how it works, the risks...) - even by doctors - is deemed to be 'advertisement' and therefore punished. I didn't know this before. A doctor started a petition, and women were outraged. Ca. 150.000 people signed. Now a change of law will be discussed in parliament (which doesn't mean anything; and to be fair: the state would have to pay far more for people with ME than for women who seek abortions, so the probability is higher that a 150.000 ME-petition would be ignored).
 
I think the lack of outrage is because of ignorance. I think if people realized just how prevalent it is and how severe and that it could happen to them then they would be angry.

You are right @Inara - this change must be brought about by many. I think this can be done - we just have to find the right key. Hopefully Unrest will prove the thin end of the wedge in getting the door to recognition open.

I think that the gathering here in this forum is a formidable group. There's a lot of expertise and intelligence and together we can make changes. Not everyone can contribute in the same way as Alem Matthees or Tom Kindlon, but every small contribution counts.

Regarding the abortion example in Germany - women were outraged because suddenly they woke up and realized it could affect them. That's what we need here.

The cost of the ME patient raised in the abortion example above is an important one: we need to turn this argument it's head. With effective treatment the cost of an ME patient could actually be reduced and the capacity of the patient to earn and contribute to taxes and their local communities etc. could be achieved.

We need our communities to realize that they are paying for ineffective, even came treatments that actually keep patients sick, they are paying for benefits for people who could possibly be cured or at least have their condition managed to the extent of a return to normal function. But these changes can only come about by initial investment in real biomedical research. I think many tax payers would be interested in hearing that.I

edited to correct autocorrections
 
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I totally agree with you, @Invisible Woman, and let me say that you and we all here rise hope :)

Invisible Woman said:
The cost of the ME patient raised in the abortion example above is an important one: we need to turn this argument it's head.
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I agree. I once had the idea to determine estimations of costs for ME patients and compare it with cancer or MS e.g.. I'd say cancer is more expensive. It's always said costs are so high - truly? I don't believe it. And I don't believe estimations by officials and politics.
 
Invisible Woman said:
they are paying for benefits for people who could possibly be cured or at least have their condition managed to the extent of a return to normal function.
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I don't get benefits. I have to go to court. If I didn't have family who helps, I wouldn't know what to do. I daresay I'm not the exception. So there's no 'tax wasting'. But I see what you want to say.

There's a good article about that in this thread: https://www.s4me.info/index.php?thr...-unevidenced-and-misleading’.1620/#post-27606

I wonder: Would it be helpful to write more such open letters?

I really hope TEDx replies, but I fear after the Twitter messages by TEDx that won't happen. How to handle that no replies are written?
 
Inara said:
I agree. I once had the idea to determine estimations of costs for ME patients and compare it with cancer or MS e.g.. I'd say cancer is more expensive. It's always said costs are so high - truly? I don't believe it. And I don't believe estimations by officials and politics.
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The thing is I'm not sure you can accurately compare the costs because the cost of treating cancer and MS involve actually treating cancer and MS and presumably improving and extending the lives of patients.

The cost of treating ME (in the UK) doesn't include treating or improving lives generally. The treatment seems, at best, helpful in adjusting to being chronically ill; at worst actively harmful.

I do know that there are some great and sympathetic docs out there, but without biomedical research to underpin their efforts they are very limited in what they can actually do.
 
Inara said:
I don't get benefits. I have to go to court. If I didn't have family who helps, I wouldn't know what to do. I daresay I'm not the exception. So there's no 'tax wasting'.
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In the UK some of us do manage to get benefits. Some of us don't so e only getting after going to tribunals ( a bit like going to court), but it is always a battle.

The arguments that have been used historically to deny benefits here were developed by the BPSers. So it may well be that even if you aren't entitled to benefits there, the same arguments are used to deny payments to those who are insured, or to support the current BPS regime there.

While we live in a number of different countries with different social systems, we are all affected by the same attitudes to ME/CFS.
 
Invisible Woman said:
The thing is I'm not sure you can accurately compare the costs because the cost of treating cancer and MS involve actually treating cancer and MS and presumably improving and extending the lives of patients.

The cost of treating ME (in the UK) doesn't include treating or improving lives generally. The treatment seems, at best, helpful in adjusting to being chronically ill; at worst actively harmful.

I do know that there are some great and sympathetic docs out there, but without biomedical research to underpin their efforts they are very limited in what they can actually do.
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It's not just the treatment. Cancer sufferers benefit from many add ons that improve the quality of life ( wigs/ peripheral treatment such as acupuncture/ not such problems with disability benefits/ blue badge) what is the cost of this?
 
i am ignorant, but:

is it possible that ted, having hosted ted fellow jen, and probably knowing her personally, might want to rein in tedx if they have tacitly or explicitly supported ec?

ted know their brand is tarnished recently. they probably are concerned they overextended their brand with the tedx franchise. now might be just the time for ted to exert influence and reclaim their core values.
 
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