Unique characeristics of pw ME/CFS as defined by the CCC and ICC and exercise physiologist experts eg Workwell Foundation, Snell, VanNess, Stevens, Klimas

Robin Ellis made this Freedom of Information request to National Institute for Health and Care Excellence

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

The request was partially successful.

Dear National Institute for Health and Care Excellence,

I am aware that the NICE guidelines for CFS are based on two papers from 2004 and the "flawed PACE trial" of 2011. As no doubt you are aware the PACE trial results as touted in the media belies the extremely poor results ie patients entered the trial severely disabled and by objective data ie the 6 minute walk test remained severely disabled at the end of the trial - this was statistically a "moderate" improvement but it was hardly effective. The "moderate" improvement resulted in patients with an average age of 39 having a similar functional capacity as people in their mid eighties. The tribunal ordered the release of the raw data and already analysis of this information is confirming the patients and scientists suspicion that the results were much worse than published in The Lancet.

Notwithstanding that, in the 12 years since 2004, much research has been published on the physiological markers of ME/CFS and two diagnostic criteria are widely accepted worldwide, namely the Canadian Consensus Criteria (CCC) of 2003 for ME/CFS and the International Consensus Criteria (ICC) 2011- 2014 for ME.

These two strict criteria select a group of patients that are much sicker than those selected by broad criteria such as that used for CFS in the NICE Guidelines and the PACE trial, i.e. the Oxford, London etc which include less ill patients with idiopathic fatigue states, who may or may not have the core diagnostic feature of post exertional malaise and numerous other symptoms that define ME/CFS.

To date patients with ME/CFS and ME (as per CCC and ICC) have not been identified and catered for in the NICE Guidelines. It appears, that at the time the NICE Guidelines were written the existence of this subset of CFS patients was unidentified, missed or ignored.
The patients meeting the CCC criteria for ME/CFS and the ICC criteria for ICC - are being studied by biomedical researchers investigating the pathophysiology of ME/CFS in the UK, the USA, Australia..etc. Easily observable symptoms, include a temperature typically lower than normal that decreases after exercise, an inability to re-produce the results of a CPET test, on a second day (to date this has not been found in any other patient cohort), postural orthostatic tachycardia syndrome (POTS) as is demonstrated by a heart rate increase of 30 beats or more on moving from supine to standing - if they stand still for up to 10 minutes, orthostatic intolerances, their heart rate is elevated after minimal exertion and slowly returns to its resting level, low anerobic threshold, a broken aerobic system resulting in abnormal intake of oxygen during exercise....the full criteria are readily available online.

In 2015, the USA Institute of Medicine wrote a report on the devastating severity of ME/CFS, the National Institute of Health is using the CCC criteria plus mandatory post exertional malaise for research into the disease. The USA has retired the use of the Oxford criteria for CFS believing it to be harmful to people with ME/CFS and ME and does NOT support the PACE/NICE style beliefs that the disease is caused/perpetuated by false illness beliefs. The USA Agency for Health has determined that CBT and GET are not effective as treatments for ME/CFS given the poor outcomes reported, including but not limited to the PACE trial and the associated Cochrane review (3 PACE authors on the panel).
The primary goal for someone with ME/CFS is not to carry out any exertion that makes them worse - be that physical, mental or emotional. This is not addressed in the NICE Guidelines nor are many other aspects of ME/CFS as detailed in the CCC and ICC criteria eg multiple chemical sensitivities, food intolerances...migraines,
The NICE Guidelines are dated and published research on how to improve the quality of life of people with ME/CFS, such as the work on energy conservation and restorative exercise published by Staci Stevens, Mark VanNess, Christopher Snell over the past 7 or so years, needs to be included. The Workwell Foundation has a number of videos on how to use heart rate based monitoring to manage activity levels and recommends patients NOT to exceed their anerobic threshold which is estimated at 100 beats per minute or 50-60% of maximum age predicted heart rate. In the first instance, most people with ME/CFS have to severely reduce their activity levels to stay under their anerobic threshold- to stop deterioration, to allow their bodies to heal. Only then can exercise - maybe stretching and flexibility for a year be introduced. Patients are flocking to these websites and buying heart rate monitors and devising their own programs, in spite of the dated advice provided by allied professionals ruled by the NICE Guidelines.
The published findings by the above expert exercise physiologists is at odds with the NICE Guidelines, heart rate monitoring guidelines, which appear to be based on guidelines that are applicable for healthy persons with "normal" hearts - rather than specific guidelines for people with a broken aerobic system, a lower than normal anerobic threshold and orthostatic intolerance.

As you will be aware 74% of the people the ME Association surveyed reported harms caused by GET carried out in the manner prescribed in the PACE and NICE Guidelines.
A further problem with the current guidelines is that typically doctors try to apply them to ALL patients regardless of severity of the disease because there are no appropriate physiological guidelines specified.
In the UK we have a wide network of ME/CFS clinics and could quickly move from the pack to the front if the NICE Guidelines were updated and physiological based management of ME/CFS was implemented. While in the meantime eminent scientists like Ron Davies hunt for a cure.

I am concerned that the NICE guidelines have not been updated and am seeking copies of information (meeting minutes/briefings/information sharing/emails) relating to:
1/ Amendments/discussions/impact of How the NICE Guidelines are impacted on by the findings in the USA of the Institute of Medicine, the Agency for Health , the publications of research relating to the aerobic, anerobic, 2- day CPET tests such as those by Snell, Stevens, VanNess et al, Dr. Nancy Klimas, Dr. Lucinda Bateman etc).
2/ Amendments/discussions/impact of the biomedical findings in people with ME/CFS as detailed in the Canadian Consensus Criteria-2003, and the International Consensus Criteria-2011.
3/ The cost/benefit/decisions to update the NICE Guidelines in view of the enormous changes in the knowledge of this disease in the past 10 years.

Thank you for your time.

The NICE Guidelines

Yours faithfully,

Robin Ellis

NICE Mail, National Institute for Health and Care Excellence

Dear Robin

 

Reference No: EH73066

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 12
September 2016, in which you requested the following:

 

Copies of information (meeting minutes/briefings/information
sharing/emails) relating to:

1/  Amendments/discussions/impact of How the NICE Guidelines are impacted
on by the findings in the USA of the Institute of Medicine, the Agency for
Health, the publications of research relating to the aerobic, anerobic, 2-
day CPET tests such as those by Snell, Stevens, VanNess et al, Dr. Nancy
Klimas, Dr. Lucinda Bateman etc).
2/ Amendments/discussions/impact  of  the biomedical findings in people
with ME/CFS as detailed in the Canadian Consensus Criteria-2003, and the
International Consensus Criteria-2011.
3/ The cost/benefit/decisions to update the NICE Guidelines in view of the
enormous changes in the knowledge of this disease in the past 10 years.

 

Your request will now be considered and you will receive a response within
the statutory timescale of 20 working days as defined by the Act, subject
to the information not being exempt or containing a reference to a third
party. In some circumstances we may be unable to achieve this deadline. If
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earliest opportunity.

 

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NICE.

 

Should you need to discuss this further please contact the enquiry
handling team on 0300 323 0141.

 

Regards

Janet 

 

Janet Fahie

Communications Executive

Corporate Communications

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
Kingdom

Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: [1]http://nice.org.uk

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Dear NICE Mail,

I am writing as I have not received a response to my request for information in relation to the unique characteristics of pwME/CFS as defined by the CCC and ICC and exercise physiologist experts e.g. Workwell Foundation, Snell, VanNess, Klimas et al.

As no doubt you are aware the release of the PACE raw data, and even the PACE authors reanalysis of their raw data confirms that the misleading nature of the results published in The Lancet in 2011.

The lack of effectiveness of PACE /NICE style GET and CBT, has been confirmed by both the the multi-million pound PACE and the multi million pound FINE trial.

I requested information relating to NICE's position/discussions about the data published by lead experts in the CCC (2003) and ICC (2011) diagnostic criteria and guidelines (in use worldwide for researching ME/CFS) and the expert exercise physiologists, whose published and online protocols are improving the quality of life of people with ME/CFS, as detailed in my initial request.

A response to this request is overdue.

I look forward to your response.

Yours sincerely,

Robin Ellis

NICE Mail, National Institute for Health and Care Excellence

Dear Robin

Reference No: EH73066

FREEDOM OF INFORMATION ACT 2000

Thank you for your request for information, received at this office on 12 September 2016,

I am sorry for the delay in sending a reply. I can confirm that we have drafted the response, however I am liaising with people outside of NICE who have been involved in correspondence in the information that we propose to release. I hope to be in a position to send you a reply later today.

I hope this information has answered your question(s). Please tell us how we did by completing our short survey. It will only take you a couple of minutes.

Kind regards
Janet

Janet Fahie
Communications Executive
Corporate Communications
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk

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Dear NICE Mail,

Thank you for your response, I was just worried that you had forgotten about my request.

Please don't stress over the time frame a response in the nest 10 days is fine.

I appreciate the time you are taking to action my request.

Yours sincerely,

Robin Ellis

Dear NICE Mail,

I am concerned that NICE are consulting with persons outside of NICE in relation to my information request.

I am concerned that you may be consulting with the very persons that encouraged, QMUL to spend a quarter of a million pounds, fighting the release of raw data from the PACE trial, ie the UK biopsychosocial mob who appear to eschew science and objective data that separates CFS into readily identifiable categories as defined by the CCC and the ICC - e.g. continuous heart rate data, physiological data, elevated heart rate in response to exertion, orthostatic intolerance and other measurable physiological signs.

It appears that persons with links to the insurance industry, may be encouraged by NICE, to have input into and to unduly influence my request for information as per this, FOI request.

I rescind my permission to extend the FOI information due date and request the release of the FOI response that as per your email has been drafted, by return.

I apologise for any inconvenience caused but see no valid reason for why an FOI request made to NICE is being influenced by persons outside NICE.

Yours sincerely,

Robin Ellis

NICE Mail, National Institute for Health and Care Excellence

Dear Robin

Thank you for your email below, I am sorry for the delay in responding to your FOI request.

I want to reassure you that the only reason we have contacted a third party external to NICE is to seek that person's permission to release information that is their personal data.

However, because we have not yet received this permission, we will release the response but without this individual's information. This means we need to remove this information which will take us a few hours.

You will therefore receive the response to your request tomorrow.

Kind regards

Helen

Helen Finn
Communications Manager (Enquiries)
National Institute for Health and Care Excellence
Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom
Tel: 44 (0)300 323 0141 Fax: 44 (0)300 323 0149
Web: http://nice.org.uk

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NICE Mail, National Institute for Health and Care Excellence

1 Attachment

Dear Robin

 

Reference No: EH73066

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 12
September 2016, in which you requested the following:

 

Copies of information (meeting minutes/briefings/information
sharing/emails) relating to:

1/  Amendments/discussions/impact of How the NICE Guidelines are impacted
on by the findings in the USA of the Institute of Medicine, the Agency for
Health, the publications of research relating to the aerobic, anerobic, 2-
day CPET tests such as those by Snell, Stevens, VanNess et al, Dr. Nancy
Klimas, Dr. Lucinda Bateman etc).
2/ Amendments/discussions/impact  of  the biomedical findings in people
with ME/CFS as detailed in the Canadian Consensus Criteria-2003, and the
International Consensus Criteria-2011.
3/ The cost/benefit/decisions to update the NICE Guidelines in view of the
enormous changes in the knowledge of this disease in the past 10 years.

 

I am sorry for the delay in sending this response. As advised in my email
of 10 October, because we were releasing emails with a third party, we
needed to clear the release of the information. This is because under the
Data Protection Act we are required to seek permission before releasing
personal information relating to another organisation or individuals
external to NICE. I appreciate that you are frustrated by this delay,
however we are required to comply with the requirements of the Act. As
explained in the email from Helen Finn, sent to you on Monday 17 October
2016, we are releasing the information you requested without this third
party’s information as we have not received the relevant permission yet.

 

We have interpreted your request for information as follows:

 

1)     Any information held by NICE relating to the impact on the NICE
guideline following the publication of evidence in the USA by the
Institute of Medicine and the Agency for Health. Also any information
relating to the impact of the publication of research relating to the
aerobic, anerobic, 2- day CPET tests such as those by Snell, Stevens,
VanNess et al, Dr. Nancy Klimas, Dr. Lucinda Bateman etc.

2)     Any information held by NICE relating to the impact of the
biomedical findings in people with ME/CFS as detailed in the Canadian
Consensus Criteria-2003, and the International Consensus Criteria-2011.

3)     Any information held by NICE relating to the cost/benefit/decisions
to update the NICE Guidelines in view of the enormous changes in the
knowledge of this disease in the past 10 years.

 

Following a search within the organisation, we can confirm that NICE holds
information that falls within the scope of your request in response to
questions 1 and 2. However, we are withholding some information relevant
to your request under section 40 of the Freedom of Information (FOI) Act.
Section 40 of the Act - personal information - provides an exemption from
the right to know where the information requested is personal data
protected by the Data Protection Act (DPA). Having considered your
request, we have withheld the data of staff below associate director level
and the personal information of a third party as we believe disclosure
would contravene the first principle of the DPA and would be unfair to the
individuals concerned.

 

In addition, some information has been withheld under section 21 of the
Act, this applies to the attachments to document 4. Section 21 -
information reasonably accessible to the applicant by other means, applies
where information is already publicly available. A copy of the letter from
the Countess of Mar to Professor Mark Baker is attached to the document
and for ease of access we have attached the cover sheets for the remaining
3 documents, but we have not attached the full documents as they are
exempt from disclosure because they are reasonably accessible to you by
other means.

 

Please see attached pdf of the information that we hold, all the
information removed is withheld under section 40 of the Act.

 

In response to question 3; we do not hold this information because we have
not made a decision to update the guidance. We will publish the decision
about whether or not we will update the guidance at the end of 2017. We
are committed to reviewing the guidance earlier than the original
anticipated review date of 2019 and we brought the review date forward
following information provided to NICE since the previous review took
place. You can visit our website for updates.

 

For background; this guideline was transferred to the static list in
December 2013 following a public consultation. Guidance is transferred to
the static list when there is no quality standard planned or a previous
review resulted in a decision not to update it. The documents relating to
the [1]review decision and public consultation are available on our
website. At this time no new evidence was identified which would suggest a
significant change in clinical practice. Guidelines on the static list are
still reviewed, although less often than guidelines on the active list.
They can still be updated earlier than planned if new evidence or
information from clinical practice comes to light that is likely to
require changes to the recommendations. We welcome information about the
publication of any new evidence if it arises before the next 5 year
review. Research can often take time to complete, which is why we consider
5 years to be an reasonable amount of time between reviews for guidelines
on the static list.

  

If you have any questions on this response you are welcome to call the
corporate communications team on 0300 323 0141 (weekdays 09:00 – 17:00).

 

If you are unhappy with this response and want an internal review of how
we handled your request, you must write to us within 20 working days
of our response. Send your request to: Associate Director, Corporate
Office, National Institute for Health and Care Excellence, 10 Spring
Gardens, London SW1A 2BU or email: [2][email address]. When we
receive your request we will send you an acknowledgement within 5 working
days.

 

The Associate Director, Corporate Office, will review your complaint and 
send you a full reply within 20 working days. If you are dissatisfied
with the outcome of this review, you can apply directly to the
Information  Commissioner for a decision at: The Information
Commissioner’s Office,  Wycliffe House, Water Lane, Wilmslow, Cheshire SK9
5AF.

 

I hope this information has answered your question(s). Please tell us how
we did by completing our [3]short survey. It will only take you a couple
of minutes.

 

Kind regards

Janet

 

Janet Fahie

Communications Executive

Corporate Communications

National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United
Kingdom

Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: [4]http://nice.org.uk

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Dear National Institute for Health and Care Excellence,

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of National Institute for Health and Care Excellence's handling of my FOI request 'Unique characteristics of pw ME/CFS as defined by the CCC and ICC and exercise physiologist experts eg Workwell Foundation, Snell, VanNess, Stevens, Klimas'.

Dear Sir/Madam

I appreciate that NICE provided some information to me, but next to nothing has been provided.
The impact of the release of the PACE trial raw data as directed by the First Tribunal has an enormous impact on the basis for the NICE Guidelines i.e. the 5 million pound PACE trial, like the multi million pound FINE trial both found that GET and CBT , were ineffective for people with CFS.
The USA Heath agency has found GET and CBT ineffective for people with CFS and said that its blatantly obvious that nobody has studied people with ME/CFS. The Centre for Disease Control, in the USA has retired its toolbox that used to recommend the PACE/NICE style GET and CBT.
The ME Association found that 74% of its members were harmed by GET, a significant but lesser percentage were harmed by CBT.
The PACE trial authors did NOT release and often did not gather on harm caused by GET and CBT- unless it required hospital admission. Hospital admission is counter indicated for people with CFS as the light/noise/chemicals makes them worse and there is NO effective treatment.
So at best PACE/NICE style CBT and GET are ineffective and at worst they are harmful.

My request relates to information on what NICE has done in view of the knowledge that the PACE authors mislead them?

Patients worldwide (including some UK private clinics, a few NHS clinics (under the radar)) are using the heart rate based pacing, staying below their abnormally low anaerobic threshold and other self help methods described in the Canadian Consensus Criteria-2003 and International Consensus Criteria -2011 and the IAMECFS and published works by the named scientists.
These patients are often managing to slowly and sustainably improve their health and quality of life. If the NICE guidelines reflected best practice management for ME/CFS then the NHS clinics would be in a good position to become centres of excellence and research into the physiology underlying ME/CFS.

A series of recent papers has identified that patients with ME/CFS are in a hypometabolic state, others that there is a genetic abnormality on the stress receptors in the innate immune system- these finding's are consistent with the low anaerobic threshold and blunted heart rate response found by the exercise physiologists and the CCC and ICC and IAMECFS guidelines.

No information was provided by NICE in relation to its consideration of the Canadian Consensus Criteria and the International Consensus Criteria, or on the work of expert exercise physiologists such as the Workwell Foundation, Snell, VanNess, Stevens, Klimas. UK scientists were involved in the CCC and the ICC.

I asked for information around the decision NOT to update the NICE Guidelines, non was provided.

It is not clear who the third party that has not responded to the request to release information. It appears that patient's health and costs to the taxpayer (benefits, loss of earnings, health care, NHS clinics) are taking second or third place to an unknown third party.

There is no need to identify the third party hence once de-identified this information should be released.

One author in the USA said that a large proportion of the medical profession in the UK has been hijacked by psychiatrists for the past three decades. The proponents of PACE, and their grip on the British establishment, is at odds with the biomedical UK scientists and researchers such as those associated with Invest in ME.

QMUL spent 250,000 pounds fighting the release of the PACE trial raw data (Peter White, Trudi Chalder, Micheal Sharpe), to hide the fact that its results were 1/3 of what they published and on the basis of a preliminary analysis not even statistically significant.

Money that could have been better spent on research.

I trust that NICE is open and transparent and that money, time and effort are directed at improving patients outcomes, as a priority.

Patients and their carers and families deserve to know the basis for the decisions made by NICE as it is them that are the most affected by the guidelines.

A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.whatdotheyknow.com/request/u...

Yours faithfully,

Robin Ellis

Dear NICE Mail,

Further to my request for an internal review please note that your decision to withhold " the data of staff below associate director level" , is not agreed to. I seek the information requested, regardless of the staff level at which the information was produced.

Please note that I am not seeking any personal information in relation to the third party just the information related to the request held by NICE, be that internally or externally produced information.
I have been made aware that some of the third parties, who may have advised NICE, have links to the insurance companies. I am not seeking these persons details or details of their financial interests.

None of the information requested, relates to personal information.

I fail to see how the provision of information relating to NICE Guidelines could be seen as "unfair to the individuals concerned" and seek the release of all information requested.

Why would any third party individuals be concerned about the public release, of the information that they provided to NICE? I put it to you that third parties would only be concerned about the release of the information that they provided if the data lacks robustness, scientific accuracy and/or there is a poor factual basis for the advice provided.

The PACE trial saga demonstrates, the dangers of allowing "scientists" to hide. As you are aware, the first tribunal ordered release of the PACE trial raw data. Re-analysis of this data, showed how grossly misleading the results published in The Lancet were, the revised figures of effectiveness are 1/3 of the "2011" figures and on the basis of the preliminary reanalysis are not statistically significant.

In my opinion there is no basis for NICE refusing to release the requested information.

Please feel free to contact me if you need any more clarification.

Robin Ellis

David Coombs, National Institute for Health and Care Excellence

Dear Robin

 

I write to confirm receipt of your request below for an internal review.
This will be considered in accordance with NICE’s Freedom of Information
Policy and Complaints Procedure and you should usually receive a response
with 20 working days.

 

Should there be a delay, I will let you know as soon as possible of any
revised timescale.

 

Kind regards

David

 

 

David Coombs

Associate Director – Corporate Office

National Institute for Health and Care Excellence

10 Spring Gardens | London | SW1A 2BU | United Kingdom

 

 

 

 

 

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David Coombs, National Institute for Health and Care Excellence

3 Attachments

Dear Mr Ellis

 

Freedom of Information (FOI) request regarding information relating to
Unique characteristics of pw ME/CFS as defined by the CCC and ICC and
exercise physiologist experts eg Workwell Foundation, Snell, VanNess,
Stevens, Klimas

 

Introduction

 

This email sets out my decision in respect of your request for an internal
review of NICE’s response to the above request.

 

The purpose of the internal review is to take a fresh look at the
application of the Freedom of Information Act 2000 (FOIA) in respect of
your request of 10 September 2016. In carrying out the review I have
considered the information held at the time of the request, the
information already published on the NICE website and the views of
external parties regarding their personal data we hold.

 

The request

 

On 10 September you requested the following information:

1.       Amendments/discussions/impact of How the NICE Guidelines are
impacted on by the findings in the USA of the Institute of Medicine, the
Agency for Health, the publications of research relating to the aerobic,
anerobic, 2- day CPET tests such as those by Snell, Stevens, VanNess et
al, Dr. Nancy Klimas, Dr. Lucinda Bateman etc).

2.       Amendments/discussions/impact  of  the biomedical findings in
people with ME/CFS as detailed in the Canadian Consensus Criteria-2003,
and the International Consensus Criteria-2011.

3.       The cost/benefit/decisions to update the NICE Guidelines in view
of the enormous changes in the knowledge of this disease in the past 10
years.

 This was interpreted as follows:

1)            Any information held by NICE relating to the impact on the
NICE guideline following the publication of evidence in the USA by the
Institute of Medicine and the Agency for Health. Also any information
relating to the impact of the publication of research relating to the
aerobic, anerobic, 2- day CPET tests such as those by Snell, Stevens,
VanNess et al, Dr. Nancy Klimas, Dr. Lucinda Bateman etc.

2)            Any information held by NICE relating to the impact of the
biomedical findings in people with ME/CFS as detailed in the Canadian
Consensus Criteria-2003, and the International Consensus Criteria-2011.

3)            Any information held by NICE relating to the
cost/benefit/decisions to update the NICE Guidelines in view of the
enormous changes in the knowledge of this disease in the past 10 years.

This interpretation was not challenged and therefore this review is based
on your FOI request as interpreted above. While I appreciate there may be
a great deal of information related to the matters you refer to, this
review is only concerned with the information held by NICE.

 

I have reviewed the response to your request and considered (i) whether
all information within the scope of your request and held by NICE was
reviewed (ii) whether information withheld or redacted was withheld in
compliance with the FOIA and (iii) whether or not the FOIA was otherwise
complied with.

 

In your request for an internal review you state that no information has
been provided around the decision not to update the guideline. However, I
note that you received 48 pages of information in response to your request
and you have also been advised of where extensive additional information
is accessible in the public domain, including the NICE website.

 

The Enquiry Handling Team explained the context in which decisions are
made to update our guidance. They have explained that a decision has not
yet been made to update the guidance, but that a decision has been made to
bring forward the review date of the guidance. The pdf document provided
to you contained a report relating to the review date (annotated as
document 9). The response from the Enquiry Handling Team also explained
how you can keep updated on this matter.

 

I have reviewed the documentation and the application of s40 of the FOIA.
Section 40 applies where disclosure of personal data would contravene the
Data Protection Act 1998. In this case the names and contact details of
some individuals have been correctly redacted as they would have no
reasonable expectation that their personal information would be disclosed
and it would therefore be unfair to do so. If disclosure would be unfair
it would also be unlawful under the Data Protection Act and I therefore
conclude that this information was correctly withheld except in one
instance.

 

I consider information in two emails (dated 28 April 2016 and 28 October
2016 – document 10) were incorrectly redacted under section 40 of the FOIA
and this is now attached. The identity of the third party is personal data
and exempt under s40 of the Act; it has therefore been redacted.

 

In undertaking this internal review I have identified that you did not
receive information held by NICE - an earlier draft of the paper regarding
the review of the guidance (the final version was document 9 in the
original release). This draft report, was attached to the email sent at
14.37 on 23 October 2015 (document 11). It is now enclosed.

 

I have also identified that one further email which was part of document
11 was incomplete. However the additional information is exempt under s40
of the FOIA. The email, with the redacted information, is enclosed.

 

Conclusion

 

In conclusion, I partially uphold your complaint as some information
within the scope of your request was not disclosed and a small amount of
additional information was incorrectly withheld. I apologise for the
oversight.

 

If you do not agree with the outcome of the internal review, you may apply
directly to the Information Commissioner for a decision who can be
contacted at: The Information Commissioner’s Office, Wycliffe House, Water
Lane, Wilmslow, Cheshire, SK9 5AF.

 

Kind regards

 

David

 

 

David Coombs

Associate Director – Corporate Office

National Institute for Health and Care Excellence

10 Spring Gardens | London | SW1A 2BU | United Kingdom

 

 

 

 

 

 

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Paul Watton left an annotation ()

An Email dated 28th April 2015 within Item 10 from NICE's response of 11th Nov 2016 makes reference to a Cochrane review.
It might therefore be useful to have a look at the following critique by Prof. James Coyne, in order to understand the research backgrounds of those involved, their connections with the PACE trial investigators and their potential conflicts of interest.

https://jcoynester.wordpress.com/2016/04...

Paul Watton left an annotation ()

In the Email dated 12th Oct 2015 in response to Prof Mark Baker, (contained in item 11b) the undisclosed writer talks about "drafting a "challenge to static list" paper."

I'm surprised that document hasn't been released in response to this FOI request.