PoTS UK, who list Hammond as a patron, say he's also advisor to AYME. No way of checking on AYME's website... How very cosy!
By the way, hi, it's my first comment!
E. Crawley: Time to end the damaging battle over chronic fatigue syndrome
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PoTS UK, who list Hammond as a patron, say he's also advisor to AYME. No way of checking on AYME's website... How very cosy!
By the way, hi, it's my first comment!
Indeed. This would be just as true for a teenager with cancer, a broken leg, MS, etc etc. These biological changes from improved sleep are supportive; helping the patient cope with the consequences, not fix the condition. No argument as it stands.
No not at all, we all know and agree that supportive behavioural treatments are perfectly valid for biological conditions, as per above.
Is this a hint we might be awaiting biomedical results, and in the meantime do more investigations into supportive CBT for teenagers with CFS? Or would you be thinking to trial directive CBT, having built your justification based on supportive CBT?
You want to do supportive CBT? No problem; no argument at all. You know full well that is not what we object to. We, the people who really (really!) do what to help people with CFS (and ME remember), simply object to the history of presuming to treat it with directive CBT. Convincing the world (including health and pension authorities) it will fix the underlying biology of the primary condition, and hence if patients do not do the CBT they are simply not prepared to help themselves, and if they do it and it fails ... they are simply not prepared to help themselves! Heads we lose - tails we lose.
The comparison is invalid. You build your ever so convincing case (to those unaware of the subterfuge) by emphasising the benefits of supportive behavioural approaches, which all reasonable people will understand and agree with. But then you disingenuously infer that this what we object to; it is not of course. We simply object to being told CBT will cure ME, in just the same way a cancer patient would object to being told it will cure their condition. And we object to how this falsehood has been disseminated throughout society, especially including health and social welfare authorities. At the very least you could start setting the record straight.
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We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)
You might not, why not ask the patient community, we've been learning about it for years while you've been busy telling sick kids to exercise and go to school. I think your lack of knowledge on the subject is due to spending so much time scheming with all your psychiatrist chums, instead of talking to medical doctors.
Ron Davis chats to us on here, he's a real ME researcher, maybe you'd like to ask him one or two questions and tell him his work means nothing like you did on the radio?
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Yet progress on this illness is being hampered by controversy, with some people disputing both its cause and treatment
No, progress is being hampered by all the psychiatrists and yourself taking all the research funds. How many millions is it now, I dread to think? Maybe we should add it all up for you, then we'll go and ask Ron Davis what he could achieve with 10 million or whatever it is you've had
Excuse me, there IS no treatment for ME! You must be delusional, do you really believe what you do is 'treatment'?
The only people who dispute the cause are you and your psch chums. 26 years ago, when I first became ill we had good doctors like Betty Dowsett, Melvin Ramsey, William Weir and many others doing fantastic research. My doctors never disputed the fact that it is a biological illness, but that was before your chums took over and hijacked the disease. Look where that got us, so many lives ruined, and you want to continue their 'work'.
No, progress is being hampered by all the psychiatrists and yourself taking all the research funds. How many millions is it now, I dread to think? Maybe we should add it all up for you, then we'll go and ask Ron Davis what he could achieve with 10 million or whatever it is you've had
Excuse me, there IS no treatment for ME! You must be delusional, do you really believe what you do is 'treatment'?
The only people who dispute the cause are you and your psch chums. 26 years ago, when I first became ill we had good doctors like Betty Dowsett, Melvin Ramsey, William Weir and many others doing fantastic research. My doctors never disputed the fact that it is a biological illness, but that was before your chums took over and hijacked the disease. Look where that got us, so many lives ruined, and you want to continue their 'work'.
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from a related thread, about Crawley's BBC Radio Bristol interview ...
Transcript of Radio Interview - Esther Crawley & FITNET
(also available as a PDF, at end of post ...)
Transcript of Radio Interview - Esther Crawley & FITNET
(also available as a PDF, at end of post ...)
taniaaust1
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i personally dont want to see someone like Prof Davis have to waste time with EC in some debate. She's done enough already without wasting reputable peoples time. Let the ones doing good science stay with doing good science and not having to do advocacy.
taniaaust1
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i had a thought but i dont know the legalities of it. Has anyone got Crawley on tape with the things she's said publically? If so maybe a mock debate could be set up somewhere and taped, using her actual things she'd said and her actually saying them and how we'd get them replied back to esp explaination of why what she's saying is shit.
Im suggesting that as I personally dont think she'd put herself into a situation in which there would be some debate in which she may come off looking badly.
Woolie
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Yea, I love these casual causation/correlation booboos. Work makes you healthy. Your chances of being ill are so much lower if you're working full time than if you're on illness benefits....
Yea, and hospitals are bad for your health, because your chances of being sick or of dying are so much higher there than if you're at home.
Haha, the list goes on. Being an air traffic controller gives you such good vision, playing basketball increases your height, and being a model makes you hot - the stats prove it!
alex3619
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I have said this before, but there is an old salespersons trick, which sometimes works, based on persuasive rhetoric rather than solid reasoning. Say a whole bunch of things that people agree with, then switch to things they think are most likely right, then say something that can be misinterpreted as agreeable. For selling products that would be something directly tied to wanting to buy the product. In this case directive CBT is the product.
Under no circumstances should any patient or critic get into a live verbal debate with anybody from the Wessely school, especially Wessely himself. He will wipe the floor with you, independent of the merit of your case. If you are going to engage them then only do it in a written format, with plenty of time allowed for responses and exchanges, and a genuinely independent and competent moderator (if one is used).
They are in the doubling down on tactics that have previously worked a treat phase, which typically happens as those tactics' powers start to fade, as they always would at some point, because propaganda's great weakness is that it is not sustainable forever, at some point reality will always insert itself back into the equation somehow, as is currently happening, albeit excruciatingly slowly and decades overdue.
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Molly98
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I was wondering this morning whether it would be possible to set up a mentoring scheme for Young people with ME, working with/ alongside/ as part of Tymes Trust and MEA?
What I envision is that those of us who are adults with ME and are well enough to manage it, support/ mentor a child /young person with ME ( and perhaps their families), particulalry those who have been newly diagnosed.
A big part of it would be to provide validation of their illness and their experience, let them know they are not alone, giving them moral support and encouragement, provide helpful tips ( from people who know and live with the disease) and information, provide education on ME, all or most of this could be done via internet and skpe ( just like FITNET) so not only is it doable for the children and young people it would be doable for many of us with ME who are largely housebound but could manage a little bit of emailing /skyping from home.
It would help provide support to these children and Young people while we wait for scientific developments and effective treatments.
It would provide an alternative to FITNET, GET and CBT approach and with the help of MEA and Tymes trust we could monitor and measure its effectiveness in supporting Young People and if we get it up and running fairly quickly it could be measured for effectiveness alongside FITNET and MAGENTA and would give young people and their families an option.
It would be difficult for anyone to object to this approach as it is giving the children and teenagers the support they need for living with a Chronic disease.
Before I had my latest relapse I worked as a Therapeutic mentor 1to 1 with Young people who often had complex needs and emotional difficulties. Often schools could not handle them, agencies could not engage them. But building up a relationship with a trusted adult who gave them empathy, understanding, validation and support and was prepared to enter and take an interest in their world made a huge difference to their lives.
Now I am not suggesting for one minute the problems children and Young people with ME face are the same - they are not they are completely different ,but the one to one mentoring approach with someone who lives it and who knows and will have empathy and understanding for their situation may be really helpful and badly needed for these young people. We all know how important it is to be believed and what a difference that can make and to have the experience that we are not alone and someone is fighting your corner.
If we could set this up it would be a positive move to counteract what looks like a worsening of things for children and young people with ME over the next 5 years or so.
If it was done well with the support of the MEA and Tymes trust there should be no reasons why doctors and social workers would not refer to what would be a free, voluntary, vital support service for young people suffering with ME in the UK.
I mean lets face it at the end of the day with medical services, social services and schools, everything comes down to money, I have seen this in may work time and again when trying to provide help for young people. If services have the opportunity to get help and support for children which is Free through a reputable voluntary organisation compared to having to pay to contract in or refer for services, they will usually make the simple choice of going for the free Voluntary option , particularly if outcomes and effectiveness are the same.
Would anyone be interested in being part of something like this?
What I envision is that those of us who are adults with ME and are well enough to manage it, support/ mentor a child /young person with ME ( and perhaps their families), particulalry those who have been newly diagnosed.
A big part of it would be to provide validation of their illness and their experience, let them know they are not alone, giving them moral support and encouragement, provide helpful tips ( from people who know and live with the disease) and information, provide education on ME, all or most of this could be done via internet and skpe ( just like FITNET) so not only is it doable for the children and young people it would be doable for many of us with ME who are largely housebound but could manage a little bit of emailing /skyping from home.
It would help provide support to these children and Young people while we wait for scientific developments and effective treatments.
It would provide an alternative to FITNET, GET and CBT approach and with the help of MEA and Tymes trust we could monitor and measure its effectiveness in supporting Young People and if we get it up and running fairly quickly it could be measured for effectiveness alongside FITNET and MAGENTA and would give young people and their families an option.
It would be difficult for anyone to object to this approach as it is giving the children and teenagers the support they need for living with a Chronic disease.
Before I had my latest relapse I worked as a Therapeutic mentor 1to 1 with Young people who often had complex needs and emotional difficulties. Often schools could not handle them, agencies could not engage them. But building up a relationship with a trusted adult who gave them empathy, understanding, validation and support and was prepared to enter and take an interest in their world made a huge difference to their lives.
Now I am not suggesting for one minute the problems children and Young people with ME face are the same - they are not they are completely different ,but the one to one mentoring approach with someone who lives it and who knows and will have empathy and understanding for their situation may be really helpful and badly needed for these young people. We all know how important it is to be believed and what a difference that can make and to have the experience that we are not alone and someone is fighting your corner.
If we could set this up it would be a positive move to counteract what looks like a worsening of things for children and young people with ME over the next 5 years or so.
If it was done well with the support of the MEA and Tymes trust there should be no reasons why doctors and social workers would not refer to what would be a free, voluntary, vital support service for young people suffering with ME in the UK.
I mean lets face it at the end of the day with medical services, social services and schools, everything comes down to money, I have seen this in may work time and again when trying to provide help for young people. If services have the opportunity to get help and support for children which is Free through a reputable voluntary organisation compared to having to pay to contract in or refer for services, they will usually make the simple choice of going for the free Voluntary option , particularly if outcomes and effectiveness are the same.
Would anyone be interested in being part of something like this?
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This is a great idea Molly, would be a big project but worth thinking about. I'll pm you - check your inbox shortly.
Daisymay
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OK, I'm playing the devils advocate here, personally I think Molly's idea is good, but just pointing out how others might see it. I may be worrying unnecessarily but here goes......
Molly said:
"It would be difficult for anyone to object to this approach as it is giving the children and teenagers the support they need for living with a Chronic disease."
I think there may well be those who would object, the psychiatrists and social services, who may use it against the children and their parents.
They've repeatedly said over the years that being a member of a patient organisation, internet forum etc reinforces patients wrong illness beliefs, worsening the disorder, making it less likely people will recover with CBT/GET. Therefore from their perspective mentors might be seen as harming the children and prolonging their disease by pandering to these misconceptions.
Could they even use it against the parents, that by allowing their child to be mentored by an adult with the disease, these parents are compounding their child's and their own wrong illness belief that they are physically ill, therefore harming their child ?
Molly said:
"It would be difficult for anyone to object to this approach as it is giving the children and teenagers the support they need for living with a Chronic disease."
I think there may well be those who would object, the psychiatrists and social services, who may use it against the children and their parents.
They've repeatedly said over the years that being a member of a patient organisation, internet forum etc reinforces patients wrong illness beliefs, worsening the disorder, making it less likely people will recover with CBT/GET. Therefore from their perspective mentors might be seen as harming the children and prolonging their disease by pandering to these misconceptions.
Could they even use it against the parents, that by allowing their child to be mentored by an adult with the disease, these parents are compounding their child's and their own wrong illness belief that they are physically ill, therefore harming their child ?
Absolutely right. I did a spot of door-to-door selling at a tricky point in my life a long time ago (did not work out - I was too honest
), and one of the things I was taught was the "Yes response". You keep asking the person questions you know they cannot avoid saying "yes" to, and it is a facet of human psychology they will become more prone to still answer "yes" even though the questions are getting a bit more ... questionable. It is about getting someone actively engaged in seeing something in a positive light. (Watch out for this the next time someone tries a hard sell on you).A cannot remember the detail now, but there is a silly trick questions game, where you keep asking someone questions where the obvious answer is "go". Then after a fair few of these you ask them "What must you do when you come to a red traffic light?", and most people will immediately answer "Go", then realise after an embarrassed pause they were hoodwinked so easily. A sort of psychological inertia.
On reflection, it feels like something an unscrupulous CBT practitioner might undertake - right strategy but very wrong cause and intent. Manipulating people into feeling good and positive about something bad (i.e. directive CBT as a cure for ME/CFS) is just ... dishonest.
I find it so hard to believe that all EC's close peers condone this, and that they do not see through it.
I suspect it would be more useful for parents than for children. Also with kids there would be child protection issues with any mentoring scheme and ensuring the mentors have appropriate checks in place.
I think also the mentors might risk laying themselves wide open to accusations of practising health improvement strategies on children, without medical knowledge/qualifications (and yes, I fully appreciate the tragic irony of this!).
Molly98
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Thanks @Daisymay for your input on this, the points you make are very valuable and we definitely need to be aware of this possibility if setting something like this up.
However, I think this would be quite difficult for them to sustain for the following reasons.
1. EC has been quite clear and publically outspoken in her belief now that ME is a Biological not psychological illness. that needs biological medical research. She herself has said it should not be treated as a psychological illness.
2. I think the public would find it highly questionable and suspicious if such support was refused to children and young people. Is there any other illness/ disease or experience that young people have which such support would not be welcomed?
3. We would not be talking about treatment or cures simply 1 to 1 support by adults who live with this disease on a daily basis and therefore have the lived experience of the problems and difficulties these young people face.
4. We would be offering emotional, moral and practical support, I think it would be difficult to oppose that for any child struggling with any difficulty.
5. If this issue came up, If that were their opinion, then the results and feedback of the support would speak for themselves and they would have to prove their claims of harm, which I think would be very difficult. If it's done professionally through the charities of MEA and Tymes trust I think it could be very awkward for them to have this position, to oppose support to children and young people. I think it would look very abusive to be honest, I mean this is what Child abusers do, they cut off the child and isolate them from other forms of support and other people's opinion so that the child only has access to the adult abusing them. They don't allow the child to hear any opinion other than their own. It is very cult like and highly abusive and I am not sure.
6. EC has talked in the media about coming together, about their not being enough help and support for Young People and their families, well this is the patients playing their role in coming together to support these children and young people.
7. All we hear about is the vocal minority who are trying to deny treatment and support to children and young people, well here is an idea that actually would be us being proactive and positive in supporting children and young people so it would not really fit with the image that is being portrayed of us,
@Countrygirl:
EDIT 6 Nov 16: @eafw clarified in a later post that EC did not specifically mention any particular researcher by name. Crossed wires here.
I missed that. Do we have it on record anywhere?
EDIT 6 Nov 16: @eafw clarified in a later post that EC did not specifically mention any particular researcher by name. Crossed wires here.
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