| A Pressure Group that provides opposition to the psychiatric paradigm for patients suffering
from diseases such as Lyme Disease/Borreliosis and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
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Please see the Home page to find out about recent changes. This page will always contain the 8 latest news items, scroll down to read them. If the item you wish to find is not here, then go to the news archives on the left. | Dildo Dillon Runs Out Of Excuses | Andrew Dillon, CEO of the National Institute for Health and Clinical Excellence (NICE sic) has apparently vibrated off in a huff, quite possibly to service the psychiatric lobby at close quarters.
It should be remembered that Dillon is the man directly responsible for deliberately stacking the psychiatric deck in the production of these CFS/ME Draft NICE Guidelines that have been proclaimed as 'unfit for purpose' right around the country. Dillon would do well to remember that what he has sanctioned and actively participated in is known as criminal political and medical manipulation of due process.
Dillon is the man who has sanctioned the possible spending of over �180million of British taxpayer's money on the methodologically and ethically flawed views of a very small group of British psychiatrists that are not based on any credible science. Dillon is the man who, throughout the development of these appalling CFS/ME Guidelines, has been instrumental in arranging for all of the biomedical evidence on ME/CFS, spanning the last fifty years or more, to be expunged from these Guidelines. Is Dillon on kickbacks from the psychiatric lobby we ask? And if so, how much? What else could explain his extraordinary behaviour, designed to damage all 240,000 patients labelled with ME/CFS in the United Kingdom?
Dillon was so desperate to find any excuse to prevent The One Click Group Response - NICE Guidelines evidence being placed on the NICE record that he ludicrously contended that our document could not be submitted as evidence to NICE because it was not produced on their online proforma piece of paper.
Dear friends, Dillon has just run out of excuses. One Click has now arduously transferred the entire contents of this 72 page document on to this online proforma. What will Dildo's next excuse be for NICE refusing to formally accept the One Click Stakeholder evidence? That the material is in the wrong font? The wrong colour? That there is a semi-colon after Simon Wessely's name that makes it inadmissible evidence? What other excuse will he come up with tomorrow?
We need answers from this disgraceful and disgraced man who could not legitimately find his way out of a paper bag, but who seeks by sleight of hand and manipulation to damage the best interests of all ME/CFS labelled patients.
We have now experienced two solid days of sheer grinding frustration at the hands of the man whose job it is to care for patients. Under the circumstances, it is little short of a miracle that our language is as moderate as it is. If this carries on, Dildo today, far worse tomorrow.
We need answers. And it is truly the case that the longer this goes on the worse it gets as has been so clearly shown.
If you would like to leave comment with the Chairman and Chief Executive of NICE, do please be our guest.
Michael Rawlins
michael.rawlins@nice.org.uk
Andrew Dillon
Andrew.Dillon@nice.org.uk
The One Click Group
***********************************
From: The One Click Group
Sent: 23 November 2006 18:07
To: Andrew Dillon
Andrew Dillon
Andrew.Dillon@nice.org.uk
Cc: Mercia Page
Mercia.Page@nice.org.uk
Colette Marshall
Colette.Marshall@nice.org.uk
Sarita Tamber
Sarita.Tamber@nice.org.uk
Michael Rawlins
michael.rawlins@nice.org.uk
Subject: RE: Responses to consultation
Importance: High
Dear Mr. Dillon
We require answers. NICE has put a deadline on us for tomorrow. Please would you answer these very simple questions without further prevarication or delay. You are paid by the taxpayer and with respect, it is time for you to speak up and earn your salary.
With best wishes
Jane Bryant
Director
The One Click Group
www.theoneclickgroup.co.uk
*******************************************
From: The One Click Group
Sent: 23 November 2006 18:07
To: Andrew Dillon
Andrew Dillon
Andrew.Dillon@nice.org.uk
Cc: Mercia Page
Mercia.Page@nice.org.uk
Colette Marshall
Colette.Marshall@nice.org.uk
Sarita Tamber
Sarita.Tamber@nice.org.uk
Michael Rawlins
michael.rawlins@nice.org.uk
Subject: RE: Responses to consultation
Importance: High
Dear Mr. Dillon
You are playing games. One Click is a Stakeholder on these Guidelines and you are contravening your own regulations at every turn.
Let's get this perfectly straight shall we?
If you force us to place the One Click document on to your online proforma and we do this, you will:
1. Acknowledge it as you must with all Stakeholder submissions.
Please answer Yes or No.
2. Formally respond to it by every point as you must with all Stakeholder submissions.
Please answer Yes or No.
3. Publish it as you must with all Stakeholder submissions.
Please answer Yes or No.
I will deal with the NICE behaviour in regard to either lying or deliberately misleading Dr Ian Gibson (MP) and the Countess of Mar when I have the answers to these very simple questions first.
Please answer immediately.
Jane Bryant
******************************************
-----Original Message-----
From: Andrew Dillon
Sent: 23 November 2006 16:09
To: The One Click Group
Cc: Mercia Page; Colette Marshall; Sarita Tamber; Amanda Trought; Michael Rawlins
Subject: RE: Responses to consultation
Dear Ms Bryant,
Thank you for your email.
If you choose to make a submission other than through the web proforma, it will be read by the guideline developers but it will not receive a written response, for the reasons set out in my earlier email.
We have agreed to transfer that element of the 25% ME submission which is in a form suitable for use in the web proforma. We have not made a commitment to do so for any other organisation.
Yours sincerely,
Andrew Dillon
| | Thu, November 23rd, 2006. 08:08 pm | | The Last NICE 36 Hours... | What is going down with The One Click Group Response - NICE Guidelines is entirely redolent of an episode of the 24 television drama series that One Click Group Technical Director young Ben, is so fond of.
The events of the last 36 hours delineate the following in relation to The One Click Group Response - NICE Guidelines.
1. Yesterday, NICE wrote to One Click and refused to accept The One Click Group Response - NICE Guidelines because the document had not been produced via its online proforma piece of paper. This is despite the fact that a precedent had been set by the 25% ME Group whose document was to be accepted by NICE in document format.
2. This morning, One Click is given the news from both the Gibson ME/CFS Parliamentary Inquiry Office and the Countess of Mar (all in writing), that the One Click evidence will be accepted and that NICE is proposing to type up the One Click evidence line by line to insert it into their online proforma, wasting British taxpayer's money by employing this fool strategy.
3. This afternoon, One Click receives an email from the NICE Chief Executive Office, one Andrew Dillon, who states that NICE has changed its mind and will not transfer the contents of the One Click document on to the proforma. This shows that NICE either lied or deliberately misled both Dr Ian Gibson (MP) and the Countess of Mar.
Dillon's email indicates that:
3.1 The One Click Response - NICE Guidelines will not be formally acknowledged, recorded or published by NICE.
3.2 NICE will not respond to any of the points made in the document.
3.3 NICE will not accept the One Click evidence and it will not publish it on its website.
It states in the Guidelines Manual, April 2006, that NICE must "Treat Stakeholders in a collaborative and transparent manner." Really? Has any of this been collaborative and transparent and designed to help patients?
Not to put too fine a point on it, has NICE CEO Andrew Dillon completely lost his head? Is he on medication or has he overindulged on wacky baccy during office hours? What is the matter with this man who is supposed to act with due diligence and care towards the millions of the sick in the United Kingdom?
Where is NICE Chairman Michael Rawlins in all this? Has he been stuffed and gagged in the office cupboard or is he sitting on the dunce's stool with his fingers stuffed in his ears on the basis of hear no evil, see no evil and speak no evil and all will be smooth and retirement peachy?
For the One Click document to so petrify NICE and the Wessely School psychiatrists as it clearly has done is quite probably the biggest compliment that we have ever been paid.
NICE is acting against its very own regulations throughout this extraordinary drama and it will be held accountable.
We will keep you all posted of developments.
The One Click Group
| | Thu, November 23rd, 2006. 04:50 pm | | NICE CEO Refuses To Record One Click Evidence | Andrew Dillon, the CEO of NICE, has written to One Click over our One Click Response - NICE Guidelines.
What Dillon is proposing to do is as follows:
1. Accept the One Click Submission to NICE as information only and not as evidence. There is, dear friends, a vast difference between the two.
2. Because our Submission has not been produced on the online proforma, our points will not be responded to by NICE nor will it be published on its website.
3. Because we have not critiqued the CFS/ME Draft NICE Guidelines in the way that NICE wants us to, our information will not be used.
In other words, what Dillon is attempting to do once more is to make the contents of a 72 page document to all intents and purposes disappear. This is precisely what has occurred with ALL the biomedical evidence that The One Click Group has submitted to NICE, using its online proforma, for the last eighteen months.
For how long is this going to be permitted to go on?
This is a very poor attempt at sleight of hand by Dillon and has been immediately rumbled. It is absolutely DISGRACEFUL that a government body CEO is being permitted to play these games with the lives of ME/CFS labelled patients.
This behaviour from this NICE government quango is completely unacceptable and contravenes its very own regulations as set out in the Guidelines Manual, April 2006. Please see the correspondence below.
These people are trying to do anything and everything not to formally accept the One Click evidence and at all costs, trying not to have to publish it on their website. This is because the One Click Response - NICE Guidelines, provides the primary building block for Judicial Review.
We will keep you all informed of developments.
The more this goes on, the worse it gets.
Please keep those emails coming in to NICE. All the email addresses that you will need are set out below.
These games being played with the work of Stakeholders will not be tolerated.
Many thanks.
The One Click Group
******************************************
From: The One Click Group
Sent: 23 November 2006 13:42
To: Andrew Dillon
Andrew.Dillon@nice.org.uk
Cc: Mercia Page
Mercia.Page@nice.org.uk
Colette Marshall
Colette.Marshall@nice.org.uk
Sarita Tamber
Sarita.Tamber@nice.org.uk
Michael Rawlins
michael.rawlins@nice.org.uk
michael.rawlins@nice.org.uk
Subject: RE: Responses to consultation
Dear Mr Dillon
Thank you for your email.
1. The One Click Group has not yet sent its Stakeholder Response in to NICE so I find it a little odd that you are writing to me to thank me for sending it.
2. The One Click Group requires a written response from NICE to our Stakeholder Submission and NICE publication of same on the website. This is particularly vital since all the Submissions that we have provided to NICE for the past eighteen months using your online proforma have gone unacknowledged, unrecorded and unpublished.
3. I have been informed by both the Gibson Inquiry and by the Countess of Mar that submissions such as ours will be typed up by NICE and placed on the proforma. I have this in writing from both. Please email by return to confirm that this is correct. I intend to publish this fact shortly.
We require acknowledgement of our Submission and publication of our Submission by NICE on the website.
I look forward to hearing from you with confirmation of the above points with immediate effect.
With best wishes
Jane Bryant
Director
The One Click Group
www.theoneclickgroup.co.uk
*******************
-----Original Message-----
From: Andrew Dillon [mailto:Andrew.Dillon@nice.org.uk]
Sent: 23 November 2006 13:09
To: mail@theoneclickgroup.co.uk
Cc: Mercia Page; Colette Marshall; Sarita Tamber; Amanda Trought
Subject: Responses to consultation
Dear Ms Bryant,
Thank you for contacting my office yesterday.
The arrangements we have in place for receiving comments from stakeholders are explained in our published guide and stakeholders have been advised of them. The reason we operate a structured approach is to ensure that each comment made by stakeholders can receive an individual response, which will be published on our web site. We receive many responses resulting, in some cases, to thousands of individual comments. It would simply not be possible to handle written consultation comments within the guideline development timeline in any other way.
Comments submitted in a form other than through the web proforma (including, in this instance, your document and those from the 25% ME Group and the Gibson enquiry) will be seen and taken into account by the guideline developers, but will not receive a written response.
The 25% ME Group document contains a response in the form required by the web proforma. We have agreed to transfer this element of their document to the web site on their behalf. We are doing this because they were advised, in an earlier communication that we would and because they have presented their comments in a form which enables us to do so.
Your response is a valuable contribution to the development of this guideline and we are grateful to you for sending it to us.
Yours sincerely,
Andrew Dillon
Chief Executive
National Institute for Health and Clinical Excellence
| | Thu, November 23rd, 2006. 02:24 pm | | Incompetent NICE...The Saga Continues | One Click has now been provided with information that states National Institute for Health and Clinical Excellence (NICE sic) is being so precious about its online proforma for Stakeholder Submissions that it is proposing to itself manually type up line by line each Stakeholder Submission to fit into the online proforma!
Are these people living in the real world? They have been given PERFECTLY good documents that they currently will not accept. Instead, they are proposing to spend British taxpayer's money on a completely POINTLESS exercise.
If this truly comes to pass, One Click will be publishing financial calculations of how much British taxpayer�s money is being spent by NICE on secretarial services per hour to turn perfectly good documents into this online proforma. Has NICE not got better things to do with its time and our money?
The NICE incompetence level rises hourly. You really couldn't make it up if you tried.
The One Click Group
| | Thu, November 23rd, 2006. 11:40 am | | NICE Set To Bar One Click Evidence | The CFS/ME Draft NICE Guidelines
Please help us to help you.
********************************
The National Institute for Health and Clinical Excellence (NICE) has written to us today refusing point blank to allow The One Click Group Response - NICE Guidelines to be sent to them in document format, but is insisting that this must be done using the online proforma. One cannot copy and paste a 72 page document into a table which is what the online proforma is and have it come out intact. NICE has stated that unless we do this, our evidence will be excluded.
NICE has already set two precedents by permitting the Stakeholder evidence from the 25% ME Group and the Gibson Parliamentary Inquiry to be delivered to them in report format, just such as ours, but Stakeholder One Click is to be denied this facility.
NICE is attempting to bar The One Click Group evidence on a spurious technicality. This is presumably because The One Click Group Response - NICE Guidelines is a primary building block upon which any Judicial Review will be based.
The latest NICE antics are truly disgraceful. If you would like to see The One Click Group Response - NICE Guidelines submitted as evidence to this government quango, please send your worldwide comments to the following:
Professor Sir Michael Rawlins - NICE Chairman
michael.rawlins@nice.org.uk
Andrew Dillon - NICE Chief Executive
Andrew.Dillon@nice.org.uk
Please help us to help you.
Many thanks.
The One Click Group
| | Wed, November 22nd, 2006. 05:38 pm | | We Will Do It Our Way... | For the last eighteen months, all the work and biomedical evidence submitted by One Click as a Stakeholder on the CFS/ME NICE Guidelines has gone unacknowledged, unrecorded and unpublished, totally against the regulations imposed by NICE itself. We have used their online proformas to submit our evidence and we have absolutely played by their rules throughout due process.
If NICE uses the excuse that our One Click Response - NICE Guidelines will be inadmissible because we did not produce it on their piece of online paper, we promise you that all hell will shortly break loose. <> This would be the ultimate icing on the incompetent, not to say fraudulent, NICE cake.
See the correspondence in relation to this issue with NICE below.
We will keep all our readers (and solicitors) duly informed.
The One Click Group
***********************************
From: The One Click Group
Sent: 21 November 2006 15:03
To: Colette Marshall
Colette.Marshall@nice.org.uk
Cc: Andrew Dillon
Andrew.Dillon@nice.org.uk
Mercia Page
Mercia.Page@nice.org.uk
Subject: CFS/ME NICE Guidelines
Dear Colette
I have just received an email from Shannon Leonard saying that the Stakeholder response to these Guidelines must be done on the online proforma.
The One Click Group will *not* be submitting our comments on the online proforma, but in a PDF document. We understand that the 25% ME Group for the Severely Affected charity have also had difficulties with NICE and they too have prepared their response in a proper document and that this procedure has been agreed by you.
Our document will be with you by email on the 23 November. We will also be sending a paper copy to Michael Rawlins et al.
If NICE is going to use the online proforma excuse to exclude the One Click Response to these Guidelines, do please speak up now and we will contact our solicitors, as ever.
Best wishes
Jane Bryant
Director
The One Click Group
www.theoneclickgroup.co.uk
Cc. Saunders Solicitors LLP
*******************************
From: Guidelines Temp [mailto:Guidelines.Temp@nice.org.uk]
Sent: 21 November 2006 14:23
To: Guidelines Temp
Subject: Consultation - Chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) guideline
Importance: High
Dear Stakeholder
I am writing as an additional reminder that consultation on chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME) guideline will be closing on 24th November 2006.
Please note that the Institute is unable to accept, and will not respond to, comments that are not on the correct proforma as highlighted in the letter to stakeholders on 29th September 2006. Copies of the consultation documents are available on the NICE website:
http://www.nice.org.uk/page.aspx?o=368933
Many thanks,
Shannon Leonard
Guidelines Coordinator (Temp)
National Institute for Health and Clinical Excellence (NICE)
MidCity Place
71 High Holborn
London WC1V 6NA
Direct line: 020 7067 5864
Direct fax: 020 7061 9764
Main switchboard : 020 7067 5800
Website: www.nice.org.uk
NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health.
| | Tue, November 21st, 2006. 03:50 pm | | Thanks....And Vested Interests | I am writing to sincerely thank all of those who have sent such kind emails to One Click for our One Click Response - NICE Guidelines.
I would also particularly like to thank Catherine Broughton, Craig Coady, Jane Colley, Nigel Hall, Dorian McClain and others for their comments on this paper and their invaluable assistance with proof reading - something that I'm just not good at! :(
The latest version of the One Click Response - NICE Guidelines, has now been uploaded to the website incorporating all corrections. The One Click Group Technical Director, young Ben, tells me that some may need to Clear Private Data before the latest version is available for view on their computers. Since I'm not sure what that means, I pass this on in good Mum Technie Git faith. :o)
Unfortunately, not all is good cheer. As is ever the case when The One Click Group publishes evidenced information to benefit patients, we have the usual garbage that arises from those carrying the heavy burden of vested interests - in this case a person named 'Ann T' at abtweed98@yahoo.co.uk on the EuroLyme internet group. This is now the third time that NHS employee Ann T has attempted to publicly destabilise crucial health advocacy initiatives and promulgate deliberate misinformation. Such destructive and purposeful game playing on evidenced issues that matter so much to so many will simply not be tolerated. People should realise that quite often, those like Ann T who pretend to be 'helping', have a very different, vested interests agenda in mind. Be careful of these people - they can do deliberate harm.
I would like to thank all the readers and participants in the One Click campaign from all over the world who have given me the strength and resolve needed to carry on for the time being with what is a most difficult endeavour. Your emails of support have truly touched me and thank you very much indeed.
There is so much more work to be done...
All the best to everyone.
Jane Bryant
The One Click Group
| | Mon, November 20th, 2006. 02:40 pm | | CFS/ME NICE GUIDELINES | As a Stakeholder on the CFS/ME NICE Guidelines, The One Click Group Response to the CFS/ME draft NICE guidelines is a coherent, thoroughly researched and well put together document.
We all owe an enormous debt of gratitude to The One Click Group and
all those who participated in the production of this document. We
know that One Click has been totally committed to producing a document
which has the sole purpose of safeguarding the wellbeing of those who
have been diagnosed with ME/CFS and the ever growing number of those
who are now being treated for Borreliosis having previously been
misdiagnosed with ME/CFS.
Jane Colley
| | Mon, November 20th, 2006. 09:20 am | You are welcome to redistribute or reprint documents from this website without
seeking our permission provided: 1) you do not abbreviate, add to, or change the
text in any way; 2) the authorship information is retained; and 3)
www.theoneclickgroup.co.uk is credited as the source. Construction, maintenance and development of this site is by young Borreliosis sufferer Ben Bryant.
His health and strength determine the site�s activity. Launched on the 22nd May 2004. |
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