CFCFS - physiological and heart rate based management (100% successful in improving quality of life)

The request was successful.

Dear National Institute for Health and Care Excellence,

It appears that the biological basis of ME/CFS is without doubt given the Centre for Disease Controls multi-site study, the Institute of Medicine report, the Agency for Quality and Health Care and the research protocols of the National Institute of Health and statements by its director Francis Collins.

I am seeking information on NICE's plans to update its guidelines to sound physiologically based rest/activity/exercise programs.

There is a long history of using exercise physiology to manage CFS.

Twenty years ago, in 1997, Peter White co-authored an article on the success of heart rate based exercise training at 40% of VO2 max (approximately 40% of age predicted maximum) for patients with CFS.

Christopher Snell et al recommended limiting activity to under 50-60% of maximum age predicted heart rate, due to abnormally low anaerobic threshold.

Continuous heart rate monitors are now readily available and hence exercise physiological principles have become more and more commonly used in the effective self management of the disease ME/CFS. Patients are having a 100% success rate and are describing needing to rest much more heavily to start with but being rewarded by sustainable (albeit slow) increases in capacity and quality of life - all of which they can objectively measure.

The NICE Guideline of waiting until you can exercise for 30 minutes and then building up to 70% of max age predicted heart rate is at odds with the above advice and also at odds with the patient experience. Patients find that in the first instance they need to rest heavily to keep their heart rate under 50-60% of maximum age predicted heart rate.

I am seeking information on the exercise physiologists/physiological basis/theory that will form the basis of the NICE Guidelines moving into the future .

I am only seeking the most recent information held by NICE on exercise physiology/heart rate monitoring for CFS patients.

Yours faithfully

Freda Frogget

NICE Mail, National Institute for Health and Care Excellence

1 Attachment

Dear Ms Frogget

 

Reference No: EH80679

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 28
April 2017, in which you asked for the following information:

 

1.       information on NICE's plans to update its guidelines to sound
physiologically based rest/activity/exercise programs and,

2.       information on the exercise physiologists/physiological
basis/theory that will form the basis of the NICE Guidelines moving into
the future

 

I am sorry for the delay in acknowledging your request. It 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 this is likely
you will be informed and given a revised time-scale at the earliest
opportunity.

 

There may be a fee payable for the retrieval, collation and provision of
the information you request. If this is the case you will be informed and
the 20 working day timescale will be suspended until we receive payment
from you. If you chose not to make a payment then your request will remain
unanswered.

 

Some requests may also require either full or partial transference to
another public authority in order to answer your query in the fullest
possible way. Again, you will be informed if this is the case.

 

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

 

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)161 413 4079 Fax: 44 (0)300 323 0149

Web: http://nice.org.uk

 

 

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http://www.nice.org.uk

NICE Mail, National Institute for Health and Care Excellence

Dear Ms Frogget

 

Reference No: EH80679

 

FREEDOM OF INFORMATION ACT 2000

 

Thank you for your request for information, received at this office on 28
April 2017, in which you asked for the following information:

 

1.       information on NICE's plans to update its guidelines to sound
physiologically based rest/activity/exercise programs and,

2.       information on the exercise physiologists/physiological
basis/theory that will form the basis of the NICE Guidelines moving into
the future.

 

Our response

1.        this information is exempt from disclosure under section 21 of
the Act as it is publically available [1]on the website and we have
previously answered this question on [2]whatdotheyknow.com.

2.       NICE does not hold this information.

 

We have received a number of very similar and overlapping requests via
whatdotheyknow.com over the last few months and we may consider any
further requests on this subject to be repeated or vexatious under section
14 of the Act.

 

If you are unhappy with this response and wish to ask for an internal
review of the handling of your request it must be made in writing within
20 working days of the Institute’s response to you and sent to: Associate
Director, Corporate Office, National Institute for Health and Care
Excellence, 10 Spring Gardens, London SW1A 2BU - Email:
[3][email address]

 

If we receive your complaint, you will be sent an acknowledgement within
five working days. The Associate Director, Corporate Office, will review
your complaint and a full reply will be sent to you within 20 working
days.

 

If you are not content with the outcome of your complaint, 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

 

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

 

 

 

 

 

The information contained in this message and any attachments is intended
for the addressee(s) only. If you are not the addressee, you may not
disclose, reproduce or distribute this message. If you have received this
message in error, please advise the sender and delete it from your system.
Any personal data sent in reply to this message will be used in accordance
with provisions of the Data Protection Act 1998 and only for the purposes
of the Institute's work.

All messages sent by NICE are checked for viruses, but we recommend that
you carry out your own checks on any attachment to this message. We cannot
accept liability for any loss or damage caused by software viruses.

http://www.nice.org.uk

References

Visible links
1. https://www.nice.org.uk/guidance/cg53
2. https://www.whatdotheyknow.com/body/nice
3. mailto:[email address]

Dear NICE Mail,

It appears extraordinary that NICE has no information on the physiological and heart rate aspects of chronic fatigue syndrome (ME/CFS) , as detailed in many research papers and diagnostic criteria used internationally and is unable to provide any information.

Whilst you keep referring to information in the public domain, the information requested is not addressed in the public domain other than in an extremely perfunctory manner. It is not at all clear why NICE has made up an arbitrary definition for CFS that broadens the definition to include less ill patients whilst excluding those with physiological, objective measurable abnormalities. It's a bit like broadening the definition of skin cancer to include everyone with spots and excluding all persons with melanoma, on the basis that not everyone with skin cancer has melanoma. Very odd.

On the basis of your response it appears that this group of patients have been totally overlooked by NICE, which is problematical for the UK taxpayers, patients and their carers.

I struggle to accept that NICE has no information on the physiological aspects of ME/CFS as these abnormalities have been the subject of more than 20 years of research.

Yours sincerely,

Freda Frogget

NICE Mail, National Institute for Health and Care Excellence

Dear Ms Frogget

Reference No: EH80679

Can I clarify if you are requesting an internal review of our response to this request as you have not specified this in the text of your email?

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

Dear NICE Mail,

Yes, I would like an internal review of the decision or I'm happy for you to provide the information.

To clarify, I am seeking information on whether NICE is going to look at objective physiological and physical functional disability in people with chronic fatigue syndrome i.e. the subset of people with the disease that are currently left out/ignored/not mentioned in the NICE Guideline for CFS.
Those with abnormal heart rate patterns after exertion , orthostatic intolerance, ataxia, abnormally low anaerobic threshold, chronotropic incompetence etc....
The information in the public domain advises that NICE is going to review whether or not to amend its guidelines this summer. It also advises that the NICE guideline for CFS doesn't address the people with objective physical and physiological signs and symptoms as listed in the Canadian Consensus Criteria (2003), and the International Consensus Criteria (2011) and the Institute of Medicine (2015).

What I am seeking is information held by NICE that either supports or refutes its current position of ignoring the people with objective physical signs and symptoms of the neurological disease that can be treated e.g. orthostatic intolerance, heart rate abnormalities.

Yours sincerely,

Freda Frogget

David Coombs, National Institute for Health and Care Excellence

Dear Ms Frogget

 

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

 

 

 

 

 

 

David Coombs, National Institute for Health and Care Excellence

1 Attachment

  • Attachment

    Freedom of Information request CFCFS physiological and heart rate based management 100 successful in improving quality of life.txt

    3K Download View as HTML

Dear Ms Frogget

 

Our reference: EH80679

Response to internal review of request under the Freedom of Information
Act 2000

 

Background

 

I write to set out the National Institute for Health and Care Excellence
(NICE)'s response to your request for an internal review of its response
to your request under the Freedom of Information Act 2000 (the ‘Act’),
made on 28 April 2017 and received by NICE that same day. A copy of the
request is attached.

 

NICE responded to your request on 22 May 2017. On 24 May 2017 you
confirmed that would like an internal review of NICE's response.

 

NICE's response

 

Under the Act, NICE has two duties to individuals requesting information:
firstly to confirm whether or not it holds the information requested and
secondly to provide a copy of that information.  NICE must comply with
both of these duties, unless one of the exemptions contained within the
Act applies.

 

NICE acknowledged your request on 10 May 2017 and interpreted your request
as:

1.                  information on NICE's plans to update its guidelines
to sound physiologically based rest/activity/exercise programs and,

2.                  information on the exercise
physiologists/physiological basis/theory that will form the basis of the
NICE guidelines moving into the future.

 

This interpretation was not challenged and therefore this review is based
on your request as interpreted above.

 

Outcome of the internal review

 

I have carried out the internal review on behalf of NICE. Having
reconsidered your request, I can confirm that as per NICE’s response on 22
May 2017

·         the information held by NICE in respect of point 1 of your
request is exempt from disclosure under section 21 of the Act as it is
already available on the NICE website and NICE’s earlier responses to
requests for information outlined on [1]https://www.whatdotheyknow.com.

·         information is not held on point 2, as in line with the
information that answers point 1, no decision has been taken on whether to
update NICE’s guidance on chronic fatigue syndrome/myalgic
encephalomyelitis (CG53).

 

Your email on 24 May in which you confirm a request for an internal review
also refers to seeking information held by NICE that supports or refutes
NICE’s current position in relation to people with physical signs and
symptoms such as orthostatic intolerance and heart rate abnormalities.
Again, this information is exempt from disclosure under section 21 of the
Act as it is already available on the NICE website as explained in NICE’s
earlier responses to requests for information that are available on
[2]https://www.whatdotheyknow.com.

 

I therefore conclude that NICE has fulfilled its obligations in compliance
with the Act and I do not uphold your complaint.

 

This marks the end of NICE’s consideration of your request. If you remain
dissatisfied with the handling of your request you have a right to appeal
to the Information Commissioner at:

 

The Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

 

[3]www.ico.org.uk

 

NICE has received a number of very similar and overlapping requests via
whatdotheyknow.com over the last few months and we may consider any
further requests on this subject to be repeated or vexatious under section
14 of the Act.

 

Kind regards

 

David

 

David Coombs

Associate Director – Corporate Office

National Institute for Health and Care Excellence