Responses to NICE Guidelines

Responses to the NICE Guidelines for M.E. and CFS By Patient Organizations In the U.K.


Presented to the
Chronic Fatigue Syndrome Advisory Committee
Department of Health and Human Services
U.S. Federal Government
Washington, D.C.
May 6, 2008


Mary M. Schweitzer, Ph.D.



Recently, the U.S. Centers for Disease Control and
Prevention (CDC) have added a new item to their
website for medical professionals. The addition was
made on the page marked "Treatment Options and
Management Plans," at the following website:
http://www.cdc.gov/cfs/cfstreatmentHCP.htm

The paragraph praises the "NICE" guidelines and
offers links to the British public health website where
they can be found.


NICE Treatment Guidelines -- NEW!

The National Institute for Health and Clinical
Excellence in the UK developed a new guideline to
improve the diagnosis and management of chronic
fatigue syndrome (CFS) and myalgic encephalo-
myelitis (or encephalopathy) (ME) in adults and
children. The guideline provides recommendations to
help diagnose and manage the condition, aimed at
maintaining, and if possible, gradually extending an
individual's physical capacity.

It also highlights the importance of shared
decision-making between health professionals and
people with CFS/ME, providing therapies suitable to
the individual, and the individual's right to refuse or
withdraw from any part of their treatment plan
without it affecting future care. Read more about the
guidelines :
http://www.nice.org.uk/guidance/index.jsp?action=byID&o=11824

or download the entire document.
http://www.nice.org.uk/guidance/index.jsp?action=download&o=36190


The statement from NHS in Britain suggests that the
guidelines were created and are being implemented
with the cooperation of patients. Nothing could be
further from the truth. In this packet you will find
formal responses from a number of British patient
organizations asking for changes that have yet to
take place.

The greatest concern in Britain - and on the
Continent, where other countries with socialized
medicine are trying to adopt the NICE guidelines - is
that despite the fact that European nations are using
ICD-10, where both M.E. and CFS are coded in the
chapter on neurology, not psychology, the guidelines
have not directed anyone towards a neurological
workup. Rather, they have been used to emphasize
the favorite programs of British psychiatrists,
Cognitive Behaviour Therapy (CBT) and Graded
Exercise Therapy (GET). You will read about the
problems with these programs in the patient
testimony.

If the U.S. is going to tacitly adopt, or praise, or
encourage insurance companies to work with,
guidelines created for socialized medicine, the public
should at least be made aware of it. Very few
patients with a "CFS" diagnosis ever get approved for
disability in the United States; consequently, very
few are on Medicare, our own public health. The
consequences of guidelines suggested by the CDC
are felt in the private sector, where patients may be
denied private disability, or reimbursement for
testing that the CDC has insisted is irrelevant for the
disease. Please read these statements.


Thank you.


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The packet contained the following:


1. The summary presentation to the Health Select
     Committee on NICE, signed by THE M.E.
     ASSOCIATION, ACTION FOR M.E., THE YOUNG
     M.E.SUFFERERS TRUST, CHROME,THE BLUE
     RIBBON FOR THE AWARENESS OF M.E., THE
     NATIONAL M.E.CENTRE, WEST MIDLANDS GROUP
     CONSORTIUM (NICE stakeholder-ME/CFS
     Guideline, November 2006), SOUTH WEST
     ALLIANCE FOR M.E., SUFFOLK YOUTH AND
     SUPPORT GROUP for young people with long term
     illnesses and their parents, M.E.POSITIVE -EAST
     MIDLANDS

2. The Doris Jones "Executive Summary" of March
     2007

3. Response from the 25% group, from their website

4. Simon Lawrence's response, from the 25% website

5. Charles Shepherd's response

6. A statement by Jane Colby about how the NICE
     guidelines are being used against students with
     M.E.,

6. The British Psychological Society critique
     http://www.bps.org.uk

7. The letter from Malcolm Hooper, Eileen Marshall,
     and Margaret Williams to the BJM

8. NICE guidelines: Garbage In, Gabage Out, by
     Margaret Wiliams

9. Deliberate Deceit or Inexcusable Ignorance, by
     Margaret Williams




Mary Schweitzer

* * *

Again, many thanks to Mary for taking the laboring oar and attending these meetings at great cost to her own health.