STOP the SMILE Lightning process trial on children - Please HELP

[kermit frogsquire]

Esther Crawley epitomises everything that is wrong about doctors treating ME - pictures are better than a thousand words as they say - see Crawley creep and crawl in the flesh -

http://www.youtube.com/watch?v=FGtChQPNUQw

Anyone and everyone that can, would do well to write a letter, see their MP, and demand that this trial be stopped. Please help get this trial stopped! Crawley is claiming that this trial can be done on children because

"CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children."

Under the rules trials cannot normally be done on children unless there is no other option. But lightning process practitioners are claiming there is an 85% success rate in adults and that children respond equally well - so Dr Esther Crawleys statement is absolutely misleading in this instance.

Letters should go to the National Research Ethics Service. Please help STOP this utter abomination of a study! Remember that these UK doctors are the very ones responsible for advising the CDC and responsible for Bill Reeves agenda - this affects us all!

Joan Kirkbride
Head of Operations, England
National Research Ethics Service
National Patient Safety Agency
Darlington Primary Care Trust
Dr Piper House
King Street
Darlington
Co. Durham
DL3 6JL
UK

 

[fred]

This is already being discussed at some length in the thread below. I fail to see the relevance of starting a new thread on it, especially as it circumvents the questions being raised about this matter in the existing thread. If you are going to duplicate this post, then, for the sake of completeness, and to show respect to those who have taken the time to respond, you should also copy across all the comments pertaining to it.

http://www.forums.aboutmecfs.org/sh...re-of-Research-in-CFS-ME”&p=131989#post131989

 

[kermit frogsquire]

The purpose Fred is to give the maximum possible coverage for this very important piece of news that was secured by people that instead of arguing the toss, like some, have been working very hard and writing cogent letters that have secured the review.

Instead of waffling on about procedure, legal process and "informants", and attacking those that have done this amazing work for us, perhaps you could try writing to the NRES yourself.

I cannot say this clearly enough - there is no procedure for review - even if there was - they are not a law court and they would not have to follow it any way - and even if they didnt follow it - their decision would still stand. And your fixation on adversarial procedure is crazy given that the majority of legal processes in the world are carried out in a much more relaxed fashion in any case.

There is one factor and one factor only - the NRES decide whether the crawley study will go ahead - so write to them and use the best arguments and facts you have to persuade them otherwise.

Also since the thread resulted in people linking in to the you tube, it has had the desired effect of increasing coverage - which is exactly the point. Why was it necessary, well because you and ME Agenda swamped the other thread will argumentative rubbish.

 

[Dx Revision Watch]

The purpose Fred is to give the maximum possible coverage for this very important piece of news that was secured by people that instead of arguing the toss, like some, have been working very hard and writing cogent letters that have secured the review.

Instead of waffling on about procedure, legal process and "informants", and attacking those that have done this amazing work for us, perhaps you could try writing to the NRES yourself.

I cannot say this clearly enough - there is no procedure for review - even if there was - they are not a law court and they would not have to follow it any way - and even if they didnt follow it - their decision would still stand. And your fixation on adversarial procedure is crazy given that the majority of legal processes in the world are carried out in a much more relaxed fashion in any case.

There is one factor and one factor only - the NRES decide whether the crawley study will go ahead - so write to them and use the best arguments and facts you have to persuade them otherwise.

Also since the thread resulted in people linking in to the you tube, it has had the desired effect of increasing coverage - which is exactly the point. Why was it necessary, well because you and ME Agenda swamped the other thread will argumentative rubbish.

I do not consider that it is a productive use of my time to engage further with you, either on or off list and I shall not be responding to any further comments from you, whether inflammatory, as above, or otherwise.

Any further inflammatory comment from you will be flagged up to the moderators.

Suzy

 

[fred]

I have reported Kermit's post as a personal insult. Challenges to statements made on this forum are just that: challenges. Kermit may not like them or agree with them but that does not make them "argumentative rubbish". Kermit also might not like the fact that Suzy and I pursued him for explanations of his statements but that does not make our posts "waffling" nor does it give him/her the right to define it as such.

It was (and still is) evident from Kermit's posts that he/she has no knowledge of the work that has gone on behind the scenes with the REC and NRES over many months nor the people who have been involved in doing this. The assumption that he/she and his counterparts are the only ones working on this issue and who are in contact with the REC and NRES and who, therefore, have 'secured a review' is erroneous.

 

[kermit frogsquire]

I have reported Fred's post as aggressive.

Since you and ME Agenda both challenged the post, and questioned the truth about the statement, which is tantamount to calling that poster a liar, I quite honestly do call that argumentative rubbish, Fred. Just because you do not get shown the bit of information, does not give you the right to question the truth of the post. You are not the guardians of truth on the board and indeed both you and suzy are guilty of trying to bully me into disclose the source, and for that reason I have reported you both also.

It is quite intolerable that you continue to attack my posts and post falsehoods

>>The assumption that he/she and his counterparts are the only ones working on this issue>> "Me and my counter parts" - this is what was actually written :-

"I have been informed just today that a letter was recently received, stating that the National Research Ethics Service will be launching an investigation to undertake an ethical review of the project. That is as much as I know. No doubt the result of the work of many people, including yourself, our MP's and academics, that have worked together to help bring the attention of this terrible biased and unethical project to the attention of those that can review the decision. The only important point is that we now have an opportunity to write to someone that will be reviewing the decision."

There is absolutely no excuse, Fred or Suzy, for attacking the truth of another poster for 3 pages. That I'm afraid is waffle.

I hope that you take ME Agenda's lead and do not reply to my posts in the future. Repetitively spamming the board with argumentative comment prevents others from gaining the benefit of what was a very important bit of information. This board is for ME sufferers to help one another not for you to get on a soap box and bury others posts under pages of argument, that in the end ME Agenda had to accept was true, vis a vis it was rubbish and an utter waste of everyone’s time.

 

[eric_s]

"SMILE" and "NICE"
Those names are really the maximum of irony...

 

[Dx Revision Watch]

Reported to the moderators

I have reported Fred's post as aggressive.

Since you and ME Agenda both challenged the post, and questioned the truth about the statement, which is tantamount to calling that poster a liar, I quite honestly do call that argumentative rubbish, Fred. Just because you do not get shown the bit of information, does not give you the right to question the truth of the post. You are not the guardians of truth on the board and indeed both you and suzy are guilty of trying to bully me into disclose the source, and for that reason I have reported you both also.

It is quite intolerable that you continue to attack my posts and post falsehoods

>>The assumption that he/she and his counterparts are the only ones working on this issue>> "Me and my counter parts" - this is what was actually written :-

"I have been informed just today that a letter was recently received, stating that the National Research Ethics Service will be launching an investigation to undertake an ethical review of the project. That is as much as I know. No doubt the result of the work of many people, including yourself, our MP's and academics, that have worked together to help bring the attention of this terrible biased and unethical project to the attention of those that can review the decision. The only important point is that we now have an opportunity to write to someone that will be reviewing the decision."

There is absolutely no excuse, Fred or Suzy, for attacking the truth of another poster for 3 pages. That I'm afraid is waffle.

I hope that you take ME Agenda's lead and do not reply to my posts in the future. Repetitively spamming the board with argumentative comment prevents others from gaining the benefit of what was a very important bit of information. This board is for ME sufferers to help one another not for you to get on a soap box and bury others posts under pages of argument, that in the end ME Agenda had to accept was true, vis a vis it was rubbish and an utter waste of everyones time.

 

[Dx Revision Watch]

On a general note, in order that there is no confusion around my previously stated concerns:


The responses that the NRES has been giving out, that I have been advised of, are:

"...there is to be an investigation into the ethical review of the project" ​

and

NRES has received the submissions from the ME Association and others concerning the SMILE study, a childrens study investigating treatment of ME in this age group.

Following our Standard Operating Procedures, we have collated the information weve received and will work with the REC to consider it.

Given that this treatment is currently available, ME Association survey data suggests it has a similar profile to other therapies and the split opinions in the ME community (this study has the support of particular ME charities who have also been involved in its planning), we feel that a fair way forward is to seek the responses of the researchers, sponsor and the ME charities involved in the development of the study before asking the REC to review its favourable opinion. We also note that in this project, subjects will not be deprived of what is current care in this clinic. Research participants will receive this intervention in addition to their standard treatment.

We will also be seeking the views of our National Research Ethics Panel."​

Neither confirms to me that their investigation will automatically result in a review of the application and its outcome, only that they intend to return to the researchers, the sponsors and the ME charities in the development of the study, in the first instance, to seek their responses before asking the REC to review its favourable opinion.

This could be taken to mean that the NRES will first seek responses from the above. Then they will decide whether NRES is prepared to review the application or whether NRES will be asking the REC to review the application and that they may decide that there is no case for either.

That is not the same as the assertion that NRES has said it will be:

"launching an investigation to undertake an ethical review of the project".

Additionally, the responses being given out have thus far not confirmed that any and all information subsequently sent into the NRES will be taken into consideration as part of whatever process the NRES is currently in the midst of, which is not a transparent process.

Nor do they give a deadline by which information sent to the NRES would need to be received in order to be considered.

I therefore reserve the right to express my concerns that the responses being given out so far, that I have been advised of, lack clarity.

I also reserve the right to consider that, personally, I would not be prepared to send information and concerns to the NRES, at this juncture, based on the information that has currently been placed in the public domain.

Suzy Chapman

 

[kermit frogsquire]

Please, Suzy, can you stop posting to my statements as you said you would. You are just wasting everyones time. You have already been informed of the wording of the original source material, and you are now playing semantics for the sake of it. Calling my statements assertions when you have been informed of the wording is quite honestly very underhand.

The original source material, now seen by me, stated "As part of the investigation which we will undertake into the ethical review of this project" - that as far as anyone can read is that there is going to be an ethical review and as close as one can get to my original wording - So please drop this wasteful argument.

That was the news last week before you started up with this nonsense, which sadly continues. What damage you have done I cannot say and if the review is now in doubt, then we all know the cause.

 

[Otis]

i'm not a moderator, just a lowly admin. I haven't the mental capacity to sort out such disagreements. But given that a moderator isn't around, i'll take action if necessary and it would be more draconian than anyone would like.

So. Please abide by the forum rules and show common courtesy. If that isn't possible then just stop posting.

There have been quite enough reported posts so please discontinue as of now.

 

[Dx Revision Watch]

To whom are you addressing your post, Otis?

 

[Dx Revision Watch]

Post #9 was a general note of clarification for readers of this thread and the associated thread and not addressed to Kermit Frogsquire, per se.

 

[Martlet]

Moderator: First of all, thank you, Otis, for stepping in while I was away from my computer.

Now to what has been going on in this thread:

People may post opinions.

People may disagree with those opinions.

What people may NOT do is use personal statements and insults.

Given the above, I am asking that everyone take a step back and consider the tone of their posts. And just in case people don't know what I am talking about, this from "Kermit":

Please, Suzy, can you stop posting to my statements as you said you would.

Suzy may continue to post to any statement on this board, as long as she does so without resorting to personal insult. Only the forum staff are permitted to decide who can post to what.

 

[kermit frogsquire]

Thank you Martlet -

Of course it is best if everyone takes a step back and thinks about how they are treating others, because Im sure that you will agree that after pages of unconstructive attack, posting of personal information and insults it is hard not to ask some one else to - please stop attacking them or spoiling the topic. I apologise if that appeared like an attempt to stop another poster, but it was just a reply to multiple statements that there would be no further posts by that member - of course it goes without saying that only moderators can stop people posting.

Just in case the message has been lost in all the arguing this was the news -

Esther Crawley epitomises everything that is wrong about doctors treating ME - pictures are better than a thousand words as they say - see Crawley creep and crawl in the flesh -

http://www.youtube.com/watch?v=FGtChQPNUQw

The NRES is holding a review of the ethics approval of this proposed Esther Crawley SMILE lightning process trial. Currently they are accepting submissions from people. This review has no specific time frame - when the NRES make their decision that will be it. Rather like a Police investigation - they do not say you have until friday to give me your evidence - they simply investigate. However once they have investigated it will be almost impossible to have the file reopened again. Therefore anyone that wants to make a polite and cogent submission to the ethics committee please write now. Also if you can contact doctors, MP's or anyone else that would like to make a submission themselves please contact them now. This will be the only review on the ethics decision, this is the only chance at getting the SMILE Lightning Process stopped.

Under the rules trials cannot normally be done on children unless there is no other option. But lightning process practitioners are claiming there is an 85% success rate in adults and an 89.7% success in children - in other words that they respond equally well - so therefore equal information about objective effectiveness could easily be gained from a study on adults - It is against GMC, MRC, DoH rules AND international convention, to use children for experiementation - furthermore under the Declaration of Helsinki (2000) there is no distinction between therapeutic and non-therapeutic trials, therefore a "training program" is treated as if it was a medicine under the law.

Letters should go to the National Research Ethics Service. Please help STOP this utter abomination of a study! Remember that these UK doctors are the very ones responsible for advising the CDC and responsible for Bill Reeves agenda - this affects us all, and if this study goes ahead the Lightning Process may end up being sold in the USA. So please help.

Joan Kirkbride
Head of Operations, England
National Research Ethics Service
National Patient Safety Agency
Darlington Primary Care Trust
Dr Piper House
King Street
Darlington
Co. Durham
DL3 6JL
UK

 

[Dx Revision Watch]

Thank you Martlet -

Of course it is best if everyone takes a step back and thinks about how they are treating others, because Im sure that you will agree that after pages of unconstructive attack, posting of personal information and insults it is hard not to ask some one else to - please stop attacking them or spoiling the topic. I apologise if that appeared like an attempt to stop another poster, but it was just a reply to multiple statements that there would be no further posts by that member - of course it goes without saying that only moderators can stop people posting.

This poster has already been moderated for alleging that he has been subject to "attack" and "insults".
I have already written that I do not intend to respond to further posts from this person. I have made no statement to the effect that I would not continue to post in the thread for the interest of others.

 

[Martlet]

Of course it is best if everyone takes a step back and thinks about how they are treating others, because Im sure that you will agree that after pages of unconstructive attack, posting of personal information and insults it is hard not to ask some one else to - please stop attacking them or spoiling the topic. I apologise if that appeared like an attempt to stop another poster, but it was just a reply to multiple statements that there would be no further posts by that member - of course it goes without saying that only moderators can stop people posting.

Moderator: Once again Kermit, a poster may respond to whatever posts they like. They are even allowed to say they won't respond any more, then change their minds! Please stay on topic and off the personal attacks.

 

[Dx Revision Watch]

Response from Joan Kirkbride, NRES

Response from Joan Kirkbride, by email, Monday, 8 November 2010:

Posted in this thread, here:

http://www.forums.aboutmecfs.org/sh...arch-in-CFS-ME&p=135293&viewfull=1#post135293

also in the main Lightning Process pilot study thread here:

http://www.forums.aboutmecfs.org/sh...dy-on-Children&p=135292&viewfull=1#post135292

Suzy Chapman

 

[kermit frogsquire]

The latest news as of the 22nd Novemeber is that Dr Shepherd continues work hard to make representations to stop the trial. Furthermore Invest in ME have added their support to get the trial stopped

http://www.investinme.org/Article-501 Childrens Study.htm

"If people are concerned about this study then they can send their comments to Joan Kirkbride, at the National Research Ethics Service, at the address below."

Please if anyone has any additional info - especially those that feel they have been harmed by the Lightning Process, contact the NRES and/or myself and I will pass the story along. Additionally, representations have been made to the Office of Fair Trading and meetings have been held with the news media to get this story covered. By working together we can stop Phil Parker.

Again, this is what we are trying to stop.
http://www.youtube.com/watch?v=FGtChQPNUQw

It really is terrible that some people continue to post attacks and completely uncontructive comments against those trying to stop this trial. Especially when the charities involved have been so helpful. Again, Martelt, thank you for your comments. I hope you will agree that "asking" people to stop attacking them is not the same as trying to prevent someone from posting, which obviously no one can do anyway.