What is this about? WHat is SMILE Lightning Process, what is she pitching? If you did your video in a more informative manner with less distracting music it would maybe make more sense.
I do hope you are not trying to incriminate the Lighning Process though as I have done it and recovered from ME. It would be a shame if you scared people off about it and prevented them from the potential of getting better and living their lives fully.
The neck scratch at 3:06 when she starts to talk about XMRV is what body language experts (or poker players) refer to as a "tell". Seems like Creepy Crawly doesn't even believe her own BS.
@JerichoPenguin This selectively edited 'amusing' nonsense adds nothing to the debate. In fact is significantly damages ME/CFS sufferers credibilty as sadly the public will lump all of us with you - a selective reporting obsessive who objects to anybody trying to do any research into areas that you personally believe are bad. I am grateful to any doctor or scientist who works with ill kids everyday and also contributes to the evidence base. Please don't deter researchers.
@vespapete, "selective reporting obsessive", as others have pointed out abuse is the weapon of the vulgar. I'm not sure you have read the comments on here properly. Everyone, including the poster of the video is calling for research. Proper research. Properly controlled research. On adults. Even Professor Robin Gill, expert in medical ethics has called Esther Crawley's study unethical. You have not put one specific cogent argument forward, when others have, you merely attack the poster.
@vespapete, btw what I think it adds to the debate is the very heart of the problem with M.E. research. $Millions has been wasted on psychiatric research, GET, CBT, and now this - the con of all cons, The Lightning Process. A product that is called criminally illegal by Trading Standards in the UK.
A product that comprises standing on coloured squares and saying STOP, Im not "doing" illness, I'm a powerful genius, I will think happy thoughts. I'm glad this video has highlighted the issue.
@vespapete, Has Professor Hooper ever suffered abuse? Dr Julia Newton, Dr Leonard Jason, Dr Mikovits... Whilst no one condones abuse, the doctors claiming they have suffered abuse are only the very ones abusing patients. Claiming the illness is in their minds. Such dogma has abused millions, and even killed patients, desperate for real medical help. And indeed it is those psychiatrists that deter research, real doctors are being put off by the stigma of M.E, created by the psychiatrists.
More false statements from Dr Crawley - she wrote in the BMJ - "They said I was having an affair with a lightning practitioner, they doctored a video I appeared in, they reported me to the GMC. "
Nothing about this video was doctored. All clips are shown in their original context, including the repeated "money money money." Dr Crawley is putting children at risk of serious harm due to experimenting on them with the LP. A product that has been declared criminal by UK trading standards.
For clarity, no one has ever said that Dr Crawley is having an affair with Alastair Gibson, (one of the Lightning Process practitioners involved in the trial.) However, hugging and kissing is intimate contact beyond that of a professional relationship, and a clear conflict of interest. Doctors must maintain a professional distance from both their patients, and especially trials involving commercial products where bias could result in erroneous conclusions, and thousands of children being harmed.
Always follow the money. In this case from the Gov and insurers. Who promotes the Oxford Criteria to select for patients with poor lifestyles (poor sleep, diet, exercise, stressing the small stuff). They can be treated (parented) with CBT, and lifestyle changes (eg. do some exercises - GET).
If the WPI is about money, what is Unum's Cardiff Uni link - philanthopy??
History overwhelmingly shows that very bad ideas are pushed along by employing idiots, often with either ego or greed issues.
It has come to my attention that a Lightning Process vendor is trying to impersonate us by calling themselves "jerichopenguin1." They are posting misleading comments on the LP on the web, and uploading misleading videos to YouTube.
Such behaviour is vile and repugnant, please do not trust these people - this is the only place that you will find our comments.
@Saybooboy sadly the original video is copyright so it cannot be uploaded, but there is a transcript on the internet. I'm sure someone you may know may have the original though and send it to you. Sorry about the music, it should have been quieter.
Wow. I have to admit I have not read anything about SMILE or the lightening process because I knew it would piss me off. And watching this video pretty much confirmed it--I am pissed off. What gal this woman has to say the WPI is all about money when she is conducting bull@#)% meaningless studies like this one. Ugghh! I can't even write anymore I am just so disgusted.
Lightning has ALREADY been trialed and rejected by two ME doctors. Professor Findlay did a Lighting pilot with Phil Parker, never published. On 1/3/2009 Phil Parker and Dr Mike Broughton, Clinical Lead ME/CFS Sussex, met at Swallows LP centre Sussex, they discussed further LP clinical trials. The LP pilot study in Sussex 2009 was never published. Dr Broughton later said that Lightning doesn't help people who are ill (quoted from All Party Parliamentary Group for ME meeting 2/12/2009 Transcript)
@donaldcamberly2 As for your argument that 250 children are doing LP therefore we better find out if it is harmful, it is utterly perverse. Children are doing the LP because of illegal and criminally unlawful claims by Phil Parker. The solution therefore to preventing this harm, is for Phil Parker to stop making such claims and stop selling his product before it is properly trialled and proven to work. This must be at HIS expense, on adults, as one would expect for any other medical product.
@donaldcamberly2 I think you are missing the point, perhaps deliberately! One does not confirm a therapy is harmful by experimenting on children and damaging them in the process. And you do not under any circumstance USE children simply because you have access to them. The problem with a study on adults is that Phil Parker will not agree to such a trial, indeed one such informal study WAS doen in the past with Professor Findley. The result, that only 1 in 30 or 1 in 40 people are helped by LP.
@donaldcamberely2 - one problem with this study is the fatigue based diagnostic process that doesn't distinguish ME from chronic fatigue. Another is that the precondition for being accepted to do LP is a high level of belief in it. Critical thinking or scepticism about LP is an exclusion criteria from doing LP. There's instances of children saying their LP Trainer said if LP doesn't work its because the person didn't believe in it properly. That plays into ideas about magic in Harry Potter etc
Given that 250 youngsters are doing the lightning process each year anyway we had better do a study to see whether it works. If it is harming these kids we better know so that we can stop it. If it works then great we have a working treatment. Not doing a study is the worst outcome.
At the Royal Society of Medicine ME Conference 2008, the Director of Tymes Trust ME children’s charity said there were cases of youngsters persuaded by LP trainers to say they were well when they were very ill. Even veterans of holism are horrified by LP's hard sell and the LP trial on children through the NHS instead of government funded bioresearch.
Critics of LP are not fools, many are familiar with the NLP language patterns and Eriksonian hypnosis used in LP and exploited to SELL it.
@dcrawley0 No one has anything to "loose", but certainly children have much to lose by being used for experimentation!
Jericho outlined a study that would be suitable above. Preferably on strictly defined ME patients such as those meeting both the Canadian Criteria and 1994 CDC fukuda. You will agree that using strict criteria is essential.... otherwise you get the "wrong answers!"
I don't know how many times that people have to write this, any study on the LP must be on consenting adults!
@Frogsquire Good, I would like to see a study in adults done. It seems however that you aren't really going to do anything to push such a study forward.
As for the study in Children, if LP is harmful we better confirm that with data given that lots of children are doing LP right now.
@dcrawley0 what on earth can be resolved by phoning, no argument can convince any reasonable person that children should be experimented on! I am just thankful that people are prepared to put energy in to stop child abuse.
@Frogsquire, well I'd like to get a sense for the kind of study you would like to have done. You've got nothing to loose - go on, I'll be waiting for your call. Or give me a number I can reach you at.
@donaldcamberly2 Professor Robin Gill is an expert on medical ethics, children are considered as incapacitated adults for the purpose of consent. So an expert on medical ethics has said it is unethical, precisely why the approval is now in review.
Phil Parker claims the study is equally effective for adults and children, yet Dr Crawley, to gain ethics approval, stated different outcomes; that is disgraceful.
What is your issue with this study being done on competent adults?
@Frogsquire Yes I thought Prof. Gill's piece was an excellent, reasoned and dispassionate perspective. A very useful contribution to the debate. Its important to note that the legitimate issues he raises are dealt with in the research proposal using real data.
Wow, JerichoPenguin, looks like a lot of energy is going in to this. I'd like to hear more about your perspective. Give me a call on +44 20 8816 8411 saturday or sunday after 4pm. Actually anyone on this board should call - there are some productive things we could do.
@donaldcamberly2 the transcript fully supports the video, I suggest you take another look.
Different phenotypes of ME are equally present in adults, even Phil Parker states the results are equal for adults. This has led Professor Gill, who sits on the board of the British Medical Association to publicly state that the study is unethical - if you are a researcher I suggest you research 'Children Must Not Be Used as Guinea Pigs.' You will agree, lying to gain ethical approval is unacceptable?
- The SMILE study is not properly controlled - it is not blinded - "specialised treatment" is meaningless. Regardless, there are questions regarding Dr Crawley's relationship with the product vendors
- the trial could be done on adults.
- the video shows Dr Crawley, factually and truthfully and asks questions - she assassinates herself - the transcript confirms the accuracy.
- Published data backs up the statements, unlike the unpublished "lovely data" used by Dr Crawley.
@JerichoPenguin So what exactly is your background that you make such serious assertions about study design? Do you have a PhD or a research background?
@donaldcamberly2 Quite honestly it's not even worth responding to the 4.7% figure - just search Dr Leonard Jason's work - To suggest that 2 children in every average school class in the UK has the serious neuroimmune condition M.E. is utterly insane.
Dr Crawley's presentation was the attempt at character assassination - 50% of her presentation was a blatant attack on XMRV researchers - the full transcript is online at MEAgenda - its clear to me that this video is very accurate. Thanks Jericho!
@donalcamberly2 Actually the National Ethics Service has had to step in to urgently review the regional decision because of a number of falsehoods that Dr Ether Crawley told the committee - disgraceful! The regional committee did not have all the information before them, only Esther Crawleys own evidence was used as a basis of approval - do you think it is acceptable to lie to an ethics board to get approval?
ME is a multisystem neuro-immune inflammatory disease.
Dr Crawley says she has has "lots of lovely data" to show that by wrongly defining ME as chronic fatigue, and calling it sleep problems with fatigue, and by treating the sleep problems, then CBT counselling "works". But not for Neuro-immune ME it doesn't.
The Chief Medical Officers' Working Group Report said that ME (not vaguely defined fatigue that Dr Crawley talks about) should be given parity with MS and Motor Neurone Disease.
At the Royal Society of Medicine ME Conference 2008, the Director of Tymes Trust ME children’s charity said there were cases of youngsters persuaded by LP trainers to say they were well when they were still very ill.
Critics of LP are not fools, many are familiar with the NLP language patterns and Eriksonian hypnosis used in LP and exploited to SELL it.
Phil Parker has avoided the business mistakes of Richard Bandler by trademarking LP from the beginning, creating a big commercial machine
In the media, there have been endless claims of ‘ME cures' by... bass playing, hiking, miracles, pole dancing etc. The UK ME diagnostic criteria is based on vague fatigue, it doesn’t distinguish between Neuro-immune ME and chronic fatigue states that are not ME - including time limited post viral conditions, burnout, overtraining syndrome, eating disorders, depression, all misdiagnosed as ME. Unless the stricter Canadian Criteria are used in the LP study, the results won't be about ME anyway
@donaldcamberly2 - Phil Parker and Alastair Gibson (both involved in the trial) claim LP works for 85% of adults and 89.7% of children - roughly equally well. It is an absolute rule that research must only be done on children if it cannot be done on adults.
- On what planet do you think that using children for experimentation to test out this product is acceptable?
No argument can support experimentation on chidlren just because Dr Crawley has access to them!
No one is against an LP trial, but it must be a blinded trial, carried out by unbiased researchers, on adults who can properly consent. Blinding can be achieved with a sham LP group. To trial it on children is abuse, against the Declaration of Helsinki, against MRC, GMC and Department of Health rules. Why children? - because LP involves bullying people into saying they are well and children are easy to bully - see Professor Robin Gills artcile in Church Times
@JerichoPenguin So let me get this straight, you want me to believe that you, know whether this meets ethical guidelines better than the ethical review committee that has seen all the data, seen the entire research proposal in detail and has loads of experience in this area. Have you ever even published a peer reviewed research paper?
Anyway we are digressing from what will really further knowledge. Why don't you write a research paper on ME / CFS. Email me on donaldcamberly@gmail to discuss.
@JerichoPenguin Perhaps you should read the research document. They are controlling the study correctly. You should also read the section on disease phenotyping. This study will provide insight in to this terrible disease.
@donaldcamberly2 The video shows Esther Crawley as she is - nothing more - it does not claim to make any arguments other than showing the truth.
Donald one does not need to know the cause of a disease to know that it is a physical condition, no one knows the cause of Lupus, MS, most cancers, yet they are all treated medically. Anyone that claims to cure a condition - without proof - such as Phil Parker with the LP is breaking the law - that is the only important fact - see above for harm!
@JerichoPenguin the video asserts that the 4.7% claim is absurd, yet you present zero data. You assert that "Exactly, The WRONG ANSWERS." again with zero data. You assert "That True ME Patients were denied treatment". again with zero data. I am not even getting in to what you insinuate. If you really wanted to show Dr. Crawley nothing more then you would show the whole video not excerpts, no editing, no text inlays no strange music. This is clearly an attempted character assassination.
Evidence of harm - apart from the now dozens of reports on the internet of people reporting serious relapses there is also the MEA survey 2010 - the largest ever survey of outcomes - showing 20% relapse rate. Also common sense would tell any reasonable person that standing on coloured pieces of paper and saying "STOP", then denying ones symptoms, will not have a good outcome for any medical condition, let alone ME that is specifically worsened by physical activity!
@JerichoPenguin I have done research for years, rarely is anything "common sense". Many of newton's laws were derided as not being "common sense" initially. I think a more productive way forward is to actually do studies to find out the truth.
VivianeOfAvalon, I want serious research as to what works. XMRV theory as a cause for CFS or ME has less data than the "Luminiferous aether" theory which proved to be wrong. Even if XMRV theory is right, then LP still might be valuable as part of the treatment mix and I don't see alternatives suggested.
If LP doesn't work, that will show up in the trial. Then that would be great for all of us. If you really think LP isn't going to work then a trial on its efficacy should be welcome.
ME Expert Professor Nancy Klimas speaking about ME (CFS) on 19/9/2010:
“there is a chronic inflammation, neuro-inflammation, the patients become terribly ill….The immune system is really cranked up; a tremendous amount of inflammation....if doctors could get this in their heads that it’s like lupus or one of these really inflammatory disorders..it is that level of inflammation. There’s a tremendous amount of inflammatory stuff going on, and there’s a lot of inflammation in the brain itself”
ME is a multisystem neuro-immune inflammatory disease.
Dr Crawley says she has has "lots of lovely data" to show that by wrongly defining ME as chronic fatigue, and calling it sleep problems with fatigue, and by treating the sleep problems, then counselling "works". But not for neuro-immune ME it doesn't.
The Chief Medical Officers' Working Group Report said that ME (not vaguely defined fatigue that Dr Crawley talks about) should be given parity with MS and Motor Neurone Disease.
This video, while emotional - doesn't actually level a single meaningful fact based accusation against Dr. Crawley. It insinuates, implies, and tries to accuse, but is pretty hollow. For example - it ridicules a claim of a 4.7% incidence without any data whatsoever. The video implies that counselling will not work, but again without a shred of data. Show real data and you have rational debate, this video is really just a personal attack.
A doctor too ignorant to know the difference between chronic fatigue and the discrete neurological illness myalgic encephalomyelitis should not be working with children suffering from the latter.
The Whittemore Peterson Institute (WPI) have a time lapse video on their website showing the construction of this building, which is now open and attached to Nevada University.
There are now two papers showing that this retrovirus IS associated with ME, and many more are coming.
Do not trust Crawley! Do your own research. She needs to be struck off by the GMC
The British ME Policy is a pack of lies! WHO classified Myalgic Encephalomyelitis (ME) is Neuro Immune, disabling, incurable - NOT mere tiredness!
ME cannot be cured by Life Coaching, Dr Crawley!
You are confusing ME with a sleep problem, Dr Crawley. Inexcusable from a British paediatrician! But you get lots of lovely research millions, don't you, Dr Crawley?
Our UK medical establishment have lied to us, lied to the NHS, lied to the Media and to the world
From the 1st November Patients diagnosed with ME will be banned from donating blood. Dr Crawley had better start distinguisng between patients with the Neuro immune disease ME, and patients with "chronic fatigue" - or she will have a lot of confused and worried parents, wondering if their children suffer from chronic fatigue - or a contagious retrovirus! The World is watching. British medicine and "medical" research is a now laughing stock because of the antics of the likes of Dr Crawley.
@VivianeOfAvalon very good point, Dr Esther Crawley could be mentally traumatising children who will now be banned from giving blood for their whole lives because they will be presumed to have a retrovirus similar to HIV. Whilst the UK government is claiming it is for our health, all other blood services such as the Canadian and Australian are stating clearly it is because of XMRV. You cannot prevent children from worrying with another lie.
@VivianeOfAvalon well anyone who spent more than 6 months in england at the end of the 80s and the start of the 90s is banned from donating blood here in the US. Does that mean that 50million britons are all suffering from some physical disease?
As a researcher myself who is based in the US claiming that
"British medicine and "medical" research is now a laughing stock" really is a bit extreme, and couldn't be further from the truth.
@GerryTrick Believe me, it is real, very real - and in fact she said more - and worse - it was just impossible to fit in to a you tube presentation! She made a point about the original Sciene paper results being 67% yet it being now 95% positives, and implied that they had made up the second figure - yet when someone in the audience questioned Dr Crawley it was clear she knew the WPI had added better testing methods and tested more samples. Hopefully Esther Crawley will be sued for all she said.
In August the University of Nevada and Whittemore Peterson Institute hosted an open day at the Center for Molecular Medicine. Researchers and representatives of Whittemore Peterson Institute and University of Nevada School of Medicine discussed the new facility and its research. Yet Dr Crawley claims the Institute doesn’t exist! The Life Coaching scam Lightning costs £650. Dr Crawley's joined up with a dubious life coach to do research on children without even properly defining the disease
Lightning Process trainers say Lightning isn't all about ME anyway. You can use it on almost anything in you life that you would like to change! That's a typical Personal Growth/NLP course sales pitch. I first heard that one in 1979! Worrying that Dr Crawley has fallen for it. Lightning tactics create worrying levels of compliance in LP clients; the In-Group/Out-Group tactics are cultish. Lightning gets people saying they aren’t ill when they are. Lightning should not be trialed on children
The Whittemore Peterson Institute (WPI) research found retrovirus XMRV in ME patients. The patient samples came from all over the USA. Patients in the WPI study group fulfilled both the Fukuda diagnostic criteria AND the Canadian Consensus Criteria with neurological, neurocognitive, neuroendocrime, immune symptoms and Post Exertional Malaise
The UK uses fatigue-based criteria and mixes up Neuroimmune ME with fatigue.
Dr Crawleys Lightning Trial is condemned as unethical by 5 ME charities.
What is this about? WHat is SMILE Lightning Process, what is she pitching? If you did your video in a more informative manner with less distracting music it would maybe make more sense.
I do hope you are not trying to incriminate the Lighning Process though as I have done it and recovered from ME. It would be a shame if you scared people off about it and prevented them from the potential of getting better and living their lives fully.
CoraRora 5 months ago
The neck scratch at 3:06 when she starts to talk about XMRV is what body language experts (or poker players) refer to as a "tell". Seems like Creepy Crawly doesn't even believe her own BS.
mercurialism 6 months ago
Why is Creepy Crawly wearing a coat indoors to deliver a lecture? Is she suffering from false temperature beliefs perhaps??? I wonder ...
mercurialism 6 months ago
Comment removed
vespapete 7 months ago
@JerichoPenguin This selectively edited 'amusing' nonsense adds nothing to the debate. In fact is significantly damages ME/CFS sufferers credibilty as sadly the public will lump all of us with you - a selective reporting obsessive who objects to anybody trying to do any research into areas that you personally believe are bad. I am grateful to any doctor or scientist who works with ill kids everyday and also contributes to the evidence base. Please don't deter researchers.
vespapete 7 months ago
@vespapete, "selective reporting obsessive", as others have pointed out abuse is the weapon of the vulgar. I'm not sure you have read the comments on here properly. Everyone, including the poster of the video is calling for research. Proper research. Properly controlled research. On adults. Even Professor Robin Gill, expert in medical ethics has called Esther Crawley's study unethical. You have not put one specific cogent argument forward, when others have, you merely attack the poster.
Frogsquire 7 months ago
@vespapete, btw what I think it adds to the debate is the very heart of the problem with M.E. research. $Millions has been wasted on psychiatric research, GET, CBT, and now this - the con of all cons, The Lightning Process. A product that is called criminally illegal by Trading Standards in the UK.
A product that comprises standing on coloured squares and saying STOP, Im not "doing" illness, I'm a powerful genius, I will think happy thoughts. I'm glad this video has highlighted the issue.
Frogsquire 7 months ago
@vespapete, Has Professor Hooper ever suffered abuse? Dr Julia Newton, Dr Leonard Jason, Dr Mikovits... Whilst no one condones abuse, the doctors claiming they have suffered abuse are only the very ones abusing patients. Claiming the illness is in their minds. Such dogma has abused millions, and even killed patients, desperate for real medical help. And indeed it is those psychiatrists that deter research, real doctors are being put off by the stigma of M.E, created by the psychiatrists.
Frogsquire 7 months ago
More false statements from Dr Crawley - she wrote in the BMJ - "They said I was having an affair with a lightning practitioner, they doctored a video I appeared in, they reported me to the GMC. "
Nothing about this video was doctored. All clips are shown in their original context, including the repeated "money money money." Dr Crawley is putting children at risk of serious harm due to experimenting on them with the LP. A product that has been declared criminal by UK trading standards.
JerichoPenguin 8 months ago
For clarity, no one has ever said that Dr Crawley is having an affair with Alastair Gibson, (one of the Lightning Process practitioners involved in the trial.) However, hugging and kissing is intimate contact beyond that of a professional relationship, and a clear conflict of interest. Doctors must maintain a professional distance from both their patients, and especially trials involving commercial products where bias could result in erroneous conclusions, and thousands of children being harmed.
JerichoPenguin 7 months ago 3
Dr Crawley further claims in the BMJ article that children have a 94% recover rate from ME. If that statement was true
1. Why is Dr Crawley investigating this product when the expected recovery rate - in 6 months - according to her own words is 94%?
2.Can Dr Crawley not see the danger in that LP practitioners will claim a 94% recovery rate, albeit all those children would recover regardless?
These are the dangers of misdiagnosis unblinded "control groups" and bogus science.
JerichoPenguin 7 months ago 2
Always follow the money. In this case from the Gov and insurers. Who promotes the Oxford Criteria to select for patients with poor lifestyles (poor sleep, diet, exercise, stressing the small stuff). They can be treated (parented) with CBT, and lifestyle changes (eg. do some exercises - GET).
If the WPI is about money, what is Unum's Cardiff Uni link - philanthopy??
History overwhelmingly shows that very bad ideas are pushed along by employing idiots, often with either ego or greed issues.
temperance123 8 months ago
It has come to my attention that a Lightning Process vendor is trying to impersonate us by calling themselves "jerichopenguin1." They are posting misleading comments on the LP on the web, and uploading misleading videos to YouTube.
Such behaviour is vile and repugnant, please do not trust these people - this is the only place that you will find our comments.
JerichoPenguin 9 months ago
This is really great JP but is there any chance you could show the original video with out your edits?
I find the music over the top distracting because my brains shit :0)
Saybooboy 9 months ago in playlist ME Stuff
@Saybooboy sadly the original video is copyright so it cannot be uploaded, but there is a transcript on the internet. I'm sure someone you may know may have the original though and send it to you. Sorry about the music, it should have been quieter.
JerichoPenguin 9 months ago
Wow. I have to admit I have not read anything about SMILE or the lightening process because I knew it would piss me off. And watching this video pretty much confirmed it--I am pissed off. What gal this woman has to say the WPI is all about money when she is conducting bull@#)% meaningless studies like this one. Ugghh! I can't even write anymore I am just so disgusted.
tiggerkenwood 10 months ago
I really wish you'd remix this so the music isn't so loud, it's incredibly hard to hear what she's saying!
jetandjazz 1 year ago
Lightning has ALREADY been trialed and rejected by two ME doctors. Professor Findlay did a Lighting pilot with Phil Parker, never published. On 1/3/2009 Phil Parker and Dr Mike Broughton, Clinical Lead ME/CFS Sussex, met at Swallows LP centre Sussex, they discussed further LP clinical trials. The LP pilot study in Sussex 2009 was never published. Dr Broughton later said that Lightning doesn't help people who are ill (quoted from All Party Parliamentary Group for ME meeting 2/12/2009 Transcript)
VivianeOfAvalon 1 year ago 5
@donaldcamberly2 As for your argument that 250 children are doing LP therefore we better find out if it is harmful, it is utterly perverse. Children are doing the LP because of illegal and criminally unlawful claims by Phil Parker. The solution therefore to preventing this harm, is for Phil Parker to stop making such claims and stop selling his product before it is properly trialled and proven to work. This must be at HIS expense, on adults, as one would expect for any other medical product.
Frogsquire 1 year ago 3
@donaldcamberly2 I think you are missing the point, perhaps deliberately! One does not confirm a therapy is harmful by experimenting on children and damaging them in the process. And you do not under any circumstance USE children simply because you have access to them. The problem with a study on adults is that Phil Parker will not agree to such a trial, indeed one such informal study WAS doen in the past with Professor Findley. The result, that only 1 in 30 or 1 in 40 people are helped by LP.
Frogsquire 1 year ago 2
@donaldcamberely2 - one problem with this study is the fatigue based diagnostic process that doesn't distinguish ME from chronic fatigue. Another is that the precondition for being accepted to do LP is a high level of belief in it. Critical thinking or scepticism about LP is an exclusion criteria from doing LP. There's instances of children saying their LP Trainer said if LP doesn't work its because the person didn't believe in it properly. That plays into ideas about magic in Harry Potter etc
VivianeOfAvalon 1 year ago 2
Given that 250 youngsters are doing the lightning process each year anyway we had better do a study to see whether it works. If it is harming these kids we better know so that we can stop it. If it works then great we have a working treatment. Not doing a study is the worst outcome.
donaldcamberly2 1 year ago
At the Royal Society of Medicine ME Conference 2008, the Director of Tymes Trust ME children’s charity said there were cases of youngsters persuaded by LP trainers to say they were well when they were very ill. Even veterans of holism are horrified by LP's hard sell and the LP trial on children through the NHS instead of government funded bioresearch.
Critics of LP are not fools, many are familiar with the NLP language patterns and Eriksonian hypnosis used in LP and exploited to SELL it.
VivianeOfAvalon 1 year ago
@dcrawley0 No one has anything to "loose", but certainly children have much to lose by being used for experimentation!
Jericho outlined a study that would be suitable above. Preferably on strictly defined ME patients such as those meeting both the Canadian Criteria and 1994 CDC fukuda. You will agree that using strict criteria is essential.... otherwise you get the "wrong answers!"
I don't know how many times that people have to write this, any study on the LP must be on consenting adults!
Frogsquire 1 year ago
@Frogsquire Good, I would like to see a study in adults done. It seems however that you aren't really going to do anything to push such a study forward.
As for the study in Children, if LP is harmful we better confirm that with data given that lots of children are doing LP right now.
donaldcamberly2 1 year ago
Comment removed
Frogsquire 1 year ago
@dcrawley0 what on earth can be resolved by phoning, no argument can convince any reasonable person that children should be experimented on! I am just thankful that people are prepared to put energy in to stop child abuse.
Frogsquire 1 year ago 2
@Frogsquire, well I'd like to get a sense for the kind of study you would like to have done. You've got nothing to loose - go on, I'll be waiting for your call. Or give me a number I can reach you at.
dcrawley0 1 year ago
@donaldcamberly2 Professor Robin Gill is an expert on medical ethics, children are considered as incapacitated adults for the purpose of consent. So an expert on medical ethics has said it is unethical, precisely why the approval is now in review.
Phil Parker claims the study is equally effective for adults and children, yet Dr Crawley, to gain ethics approval, stated different outcomes; that is disgraceful.
What is your issue with this study being done on competent adults?
Frogsquire 1 year ago
@Frogsquire Yes I thought Prof. Gill's piece was an excellent, reasoned and dispassionate perspective. A very useful contribution to the debate. Its important to note that the legitimate issues he raises are dealt with in the research proposal using real data.
donaldcamberly2 1 year ago 2
Wow, JerichoPenguin, looks like a lot of energy is going in to this. I'd like to hear more about your perspective. Give me a call on +44 20 8816 8411 saturday or sunday after 4pm. Actually anyone on this board should call - there are some productive things we could do.
dcrawley0 1 year ago
@donaldcamberly2 the transcript fully supports the video, I suggest you take another look.
Different phenotypes of ME are equally present in adults, even Phil Parker states the results are equal for adults. This has led Professor Gill, who sits on the board of the British Medical Association to publicly state that the study is unethical - if you are a researcher I suggest you research 'Children Must Not Be Used as Guinea Pigs.' You will agree, lying to gain ethical approval is unacceptable?
Frogsquire 1 year ago
@donaldcamberly2
- The SMILE study is not properly controlled - it is not blinded - "specialised treatment" is meaningless. Regardless, there are questions regarding Dr Crawley's relationship with the product vendors
- the trial could be done on adults.
- the video shows Dr Crawley, factually and truthfully and asks questions - she assassinates herself - the transcript confirms the accuracy.
- Published data backs up the statements, unlike the unpublished "lovely data" used by Dr Crawley.
JerichoPenguin 1 year ago
@JerichoPenguin So what exactly is your background that you make such serious assertions about study design? Do you have a PhD or a research background?
donaldcamberly2 1 year ago
@donaldcamberly2 Quite honestly it's not even worth responding to the 4.7% figure - just search Dr Leonard Jason's work - To suggest that 2 children in every average school class in the UK has the serious neuroimmune condition M.E. is utterly insane.
Dr Crawley's presentation was the attempt at character assassination - 50% of her presentation was a blatant attack on XMRV researchers - the full transcript is online at MEAgenda - its clear to me that this video is very accurate. Thanks Jericho!
Frogsquire 1 year ago
@Frogsquire You might want to read what she actually said, its on ME agenda
donaldcamberly2 1 year ago
@donalcamberly2 Actually the National Ethics Service has had to step in to urgently review the regional decision because of a number of falsehoods that Dr Ether Crawley told the committee - disgraceful! The regional committee did not have all the information before them, only Esther Crawleys own evidence was used as a basis of approval - do you think it is acceptable to lie to an ethics board to get approval?
Frogsquire 1 year ago
This has been flagged as spam show
@Frogsquire Please ping me with more details donaldcamberly@gmail.com
donaldcamberly2 1 year ago
ME is a multisystem neuro-immune inflammatory disease.
Dr Crawley says she has has "lots of lovely data" to show that by wrongly defining ME as chronic fatigue, and calling it sleep problems with fatigue, and by treating the sleep problems, then CBT counselling "works". But not for Neuro-immune ME it doesn't.
The Chief Medical Officers' Working Group Report said that ME (not vaguely defined fatigue that Dr Crawley talks about) should be given parity with MS and Motor Neurone Disease.
VivianeOfAvalon 1 year ago
At the Royal Society of Medicine ME Conference 2008, the Director of Tymes Trust ME children’s charity said there were cases of youngsters persuaded by LP trainers to say they were well when they were still very ill.
Critics of LP are not fools, many are familiar with the NLP language patterns and Eriksonian hypnosis used in LP and exploited to SELL it.
Phil Parker has avoided the business mistakes of Richard Bandler by trademarking LP from the beginning, creating a big commercial machine
VivianeOfAvalon 1 year ago
In the media, there have been endless claims of ‘ME cures' by... bass playing, hiking, miracles, pole dancing etc. The UK ME diagnostic criteria is based on vague fatigue, it doesn’t distinguish between Neuro-immune ME and chronic fatigue states that are not ME - including time limited post viral conditions, burnout, overtraining syndrome, eating disorders, depression, all misdiagnosed as ME. Unless the stricter Canadian Criteria are used in the LP study, the results won't be about ME anyway
VivianeOfAvalon 1 year ago
Comment removed
VivianeOfAvalon 1 year ago
@donaldcamberly2 - Phil Parker and Alastair Gibson (both involved in the trial) claim LP works for 85% of adults and 89.7% of children - roughly equally well. It is an absolute rule that research must only be done on children if it cannot be done on adults.
- On what planet do you think that using children for experimentation to test out this product is acceptable?
No argument can support experimentation on chidlren just because Dr Crawley has access to them!
Frogsquire 1 year ago
No one is against an LP trial, but it must be a blinded trial, carried out by unbiased researchers, on adults who can properly consent. Blinding can be achieved with a sham LP group. To trial it on children is abuse, against the Declaration of Helsinki, against MRC, GMC and Department of Health rules. Why children? - because LP involves bullying people into saying they are well and children are easy to bully - see Professor Robin Gills artcile in Church Times
JerichoPenguin 1 year ago 4
@JerichoPenguin So let me get this straight, you want me to believe that you, know whether this meets ethical guidelines better than the ethical review committee that has seen all the data, seen the entire research proposal in detail and has loads of experience in this area. Have you ever even published a peer reviewed research paper?
Anyway we are digressing from what will really further knowledge. Why don't you write a research paper on ME / CFS. Email me on donaldcamberly@gmail to discuss.
donaldcamberly2 1 year ago
@JerichoPenguin Perhaps you should read the research document. They are controlling the study correctly. You should also read the section on disease phenotyping. This study will provide insight in to this terrible disease.
donaldcamberly2 1 year ago
@donaldcamberly2 The video shows Esther Crawley as she is - nothing more - it does not claim to make any arguments other than showing the truth.
Donald one does not need to know the cause of a disease to know that it is a physical condition, no one knows the cause of Lupus, MS, most cancers, yet they are all treated medically. Anyone that claims to cure a condition - without proof - such as Phil Parker with the LP is breaking the law - that is the only important fact - see above for harm!
JerichoPenguin 1 year ago
@JerichoPenguin the video asserts that the 4.7% claim is absurd, yet you present zero data. You assert that "Exactly, The WRONG ANSWERS." again with zero data. You assert "That True ME Patients were denied treatment". again with zero data. I am not even getting in to what you insinuate. If you really wanted to show Dr. Crawley nothing more then you would show the whole video not excerpts, no editing, no text inlays no strange music. This is clearly an attempted character assassination.
donaldcamberly2 1 year ago
Evidence of harm - apart from the now dozens of reports on the internet of people reporting serious relapses there is also the MEA survey 2010 - the largest ever survey of outcomes - showing 20% relapse rate. Also common sense would tell any reasonable person that standing on coloured pieces of paper and saying "STOP", then denying ones symptoms, will not have a good outcome for any medical condition, let alone ME that is specifically worsened by physical activity!
JerichoPenguin 1 year ago 3
@JerichoPenguin I have done research for years, rarely is anything "common sense". Many of newton's laws were derided as not being "common sense" initially. I think a more productive way forward is to actually do studies to find out the truth.
donaldcamberly2 1 year ago
VivianeOfAvalon, I want serious research as to what works. XMRV theory as a cause for CFS or ME has less data than the "Luminiferous aether" theory which proved to be wrong. Even if XMRV theory is right, then LP still might be valuable as part of the treatment mix and I don't see alternatives suggested.
If LP doesn't work, that will show up in the trial. Then that would be great for all of us. If you really think LP isn't going to work then a trial on its efficacy should be welcome.
donaldcamberly2 1 year ago
Comment removed
VivianeOfAvalon 1 year ago 3
ME Expert Professor Nancy Klimas speaking about ME (CFS) on 19/9/2010:
“there is a chronic inflammation, neuro-inflammation, the patients become terribly ill….The immune system is really cranked up; a tremendous amount of inflammation....if doctors could get this in their heads that it’s like lupus or one of these really inflammatory disorders..it is that level of inflammation. There’s a tremendous amount of inflammatory stuff going on, and there’s a lot of inflammation in the brain itself”
VivianeOfAvalon 1 year ago 3
ME is a multisystem neuro-immune inflammatory disease.
Dr Crawley says she has has "lots of lovely data" to show that by wrongly defining ME as chronic fatigue, and calling it sleep problems with fatigue, and by treating the sleep problems, then counselling "works". But not for neuro-immune ME it doesn't.
The Chief Medical Officers' Working Group Report said that ME (not vaguely defined fatigue that Dr Crawley talks about) should be given parity with MS and Motor Neurone Disease.
VivianeOfAvalon 1 year ago 3
This video, while emotional - doesn't actually level a single meaningful fact based accusation against Dr. Crawley. It insinuates, implies, and tries to accuse, but is pretty hollow. For example - it ridicules a claim of a 4.7% incidence without any data whatsoever. The video implies that counselling will not work, but again without a shred of data. Show real data and you have rational debate, this video is really just a personal attack.
donaldcamberly2 1 year ago
The WPI should sue her for the lies she has deliberately told about them.
Bluebottle83 1 year ago 11
A doctor too ignorant to know the difference between chronic fatigue and the discrete neurological illness myalgic encephalomyelitis should not be working with children suffering from the latter.
Bluebottle83 1 year ago 13
@Bluebottle83 Did you read the talk transcript of the talk where she talks about disease phenotyping
donaldcamberly2 1 year ago
@Bluebottle83 You sir, are an idiot
stewylolol 1 year ago
@stewylolol
"~ Abuse is the weapon of the vulgar." ~ Samuel Griswold Goodrich
Bluebottle83 1 year ago
@stewylolol "Abuse is the weapon of the vulgar"
~ Samuel Griswold Goodrich
Bluebottle83 8 months ago
@stewylolol "Abuse is the weapon of the vulgar"
~ Samuel Griswold Goodrich
Bluebottle83 8 months ago
What do we think Crawley is doing? Trying to deceive us.
edittubev 1 year ago 5
The Whittemore Peterson Institute (WPI) have a time lapse video on their website showing the construction of this building, which is now open and attached to Nevada University.
There are now two papers showing that this retrovirus IS associated with ME, and many more are coming.
Do not trust Crawley! Do your own research. She needs to be struck off by the GMC
edittubev 1 year ago 4
Tell the TRUTH, CDC!
The British ME Policy is a pack of lies! WHO classified Myalgic Encephalomyelitis (ME) is Neuro Immune, disabling, incurable - NOT mere tiredness!
ME cannot be cured by Life Coaching, Dr Crawley!
You are confusing ME with a sleep problem, Dr Crawley. Inexcusable from a British paediatrician! But you get lots of lovely research millions, don't you, Dr Crawley?
Our UK medical establishment have lied to us, lied to the NHS, lied to the Media and to the world
VivianeOfAvalon 1 year ago 4
From the 1st November Patients diagnosed with ME will be banned from donating blood. Dr Crawley had better start distinguisng between patients with the Neuro immune disease ME, and patients with "chronic fatigue" - or she will have a lot of confused and worried parents, wondering if their children suffer from chronic fatigue - or a contagious retrovirus! The World is watching. British medicine and "medical" research is a now laughing stock because of the antics of the likes of Dr Crawley.
VivianeOfAvalon 1 year ago 4
@VivianeOfAvalon very good point, Dr Esther Crawley could be mentally traumatising children who will now be banned from giving blood for their whole lives because they will be presumed to have a retrovirus similar to HIV. Whilst the UK government is claiming it is for our health, all other blood services such as the Canadian and Australian are stating clearly it is because of XMRV. You cannot prevent children from worrying with another lie.
JerichoPenguin 1 year ago 5
@VivianeOfAvalon well anyone who spent more than 6 months in england at the end of the 80s and the start of the 90s is banned from donating blood here in the US. Does that mean that 50million britons are all suffering from some physical disease?
As a researcher myself who is based in the US claiming that
"British medicine and "medical" research is now a laughing stock" really is a bit extreme, and couldn't be further from the truth.
donaldcamberly2 1 year ago
This has been flagged as spam show
@VivianeOfAvalon Did you read what she said about phenotyping?
donaldcamberly2 1 year ago
The woman's a damn disgrace. She hasnt got a clue about ME .
cazsb 1 year ago 4
The woman's a damn disgrace. She hasnt got a clue about ME.
cazsb 1 year ago 4
And this woman is the medical advisor to the Association of Young People with M.E....
kaazoom 1 year ago 4
Thanks JP. I wonder if the LP can cure delusional disorder? For Ms Crawley's sake, I hope so.
GerryTrick 1 year ago 2
Is this a real presentation or a spoof?
If it's real, then it is frightening.......the frightening process?
If it's a spoof, then it's creator might be libellous.
If this is not Esther Crawley, then Esther Crawley might sue. If it is Esther Crawley, then she might be sued.
GerryTrick 1 year ago
@GerryTrick Believe me, it is real, very real - and in fact she said more - and worse - it was just impossible to fit in to a you tube presentation! She made a point about the original Sciene paper results being 67% yet it being now 95% positives, and implied that they had made up the second figure - yet when someone in the audience questioned Dr Crawley it was clear she knew the WPI had added better testing methods and tested more samples. Hopefully Esther Crawley will be sued for all she said.
JerichoPenguin 1 year ago 4
In August the University of Nevada and Whittemore Peterson Institute hosted an open day at the Center for Molecular Medicine. Researchers and representatives of Whittemore Peterson Institute and University of Nevada School of Medicine discussed the new facility and its research. Yet Dr Crawley claims the Institute doesn’t exist! The Life Coaching scam Lightning costs £650. Dr Crawley's joined up with a dubious life coach to do research on children without even properly defining the disease
VivianeOfAvalon 1 year ago 2
Lightning Process trainers say Lightning isn't all about ME anyway. You can use it on almost anything in you life that you would like to change! That's a typical Personal Growth/NLP course sales pitch. I first heard that one in 1979! Worrying that Dr Crawley has fallen for it. Lightning tactics create worrying levels of compliance in LP clients; the In-Group/Out-Group tactics are cultish. Lightning gets people saying they aren’t ill when they are. Lightning should not be trialed on children
VivianeOfAvalon 1 year ago 2
The Whittemore Peterson Institute (WPI) research found retrovirus XMRV in ME patients. The patient samples came from all over the USA. Patients in the WPI study group fulfilled both the Fukuda diagnostic criteria AND the Canadian Consensus Criteria with neurological, neurocognitive, neuroendocrime, immune symptoms and Post Exertional Malaise
The UK uses fatigue-based criteria and mixes up Neuroimmune ME with fatigue.
Dr Crawleys Lightning Trial is condemned as unethical by 5 ME charities.
VivianeOfAvalon 1 year ago 2
bag,she should be struck off
theonlyfluffyone 1 year ago 3