Tuesday, April 7, 2009

Countess of Mar and NICE

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From: "Stephen Ralph"

by Dr Charles Shepherd.



Countess of Mar slates NICE and
the health insurance industry

The NICE Guideline on ME/CFS, and the attitude of
many health insurers towards people with the
illness, came under withering fire from the Countess
of Mar in a debate in the House of Lords yesterday
(March 18).

The Countess said the Guideline was published amid
"a barrage of criticism" from the ME community
because the only two treatments it recommended -
on the basis of very limited and strongly criticised
scientific evidence - were Cognitive Behaviour
Therapy (CBT) and Graded Exercise (GET).

The recent judicial review did not test the
scientific validity of NICE's recommendations. The
Countess said the assertion made by Professor
Peter Littlejohns, NICE clinical and public health
director, after the legal challenge was rejected -
he said this "means that the NICE guideline is the
gold standard for best practice in managing
ME/CFS" - was not accurate.

Speaking in a debate opened by Baroness Tonge on
the cognitive therapy programme launched by the
NHS. the Countess said: "People with ME already
bear a great burden of disbelief about the reality of
their illness from their closest relatives, their
friends, the medical profession and other care
professionals they encounter, as well as the
community at large.

"There has been a preponderance of articles on
"yuppie flu" in the press and broadcast media;
research funding, other than that provided by the ME
charities, has been exclusively weighted in favour of
the psychosocial as opposed to the biomedical
aspects of the illness; and ME patients seem to have
to go through a great many more hoops, including
CBT, to obtain and retain social security benefits
and social care packets, as well private health

But the Countess, who chairs a strategic ME planning
group called 'Forward ME' comprising the heads of
several national ME charities and voluntary groups,
reserved her most intense criticism for the health
insurance industry for their misinterpretation of the
illness as a psychiatric condition

"I have a quotation from Health Insurance News
UK dated 22 February 2009. Under the heading,

"Medical Insurance May Not Cover Chronic Fatigue",

"it gives a condensed description of ME. It then

"This sounds like a physical problem, doesn't it?
However, the NICE guidelines suggest that it is a
psychiatric condition rather than a physical one.".
"It goes on to say:

"Because of the NICE guidelines private health
insurance companies are within their right to refuse
cover if an applicant's policy does not include
psychiatric cover".

"I cannot find any confirmation for the extraordinary
suggestion that ME is a psychiatric condition in the
NICE guidelines. Will the Minister ensure that this
misinformation is rapidly withdrawn?"

She added:

"I have been dealing with ME sufferers for 17 years
and I have never encountered a group of patients
who are so maligned. The last straw for them is the
requirement that they undertake a course of CBT
and/or GET in order to qualify for benefits and
private insurance payments.

"I accept that, in some cases, CBT alone may be
beneficial. I suspect that in the old days it would
have been called "grin and bear it". However, CBT is
rarely offered without GET and ME patients know
only too well-and their views are supported by some
4,000 papers on scientific and clinical research-that
GET makes their symptoms worse.

"The NICE guidelines lay great stress on the
importance of shared decision making, working in
partnership with the patient and the need for
specialist expertise.

Unfortunately, because this is a "Cinderella"
condition, there are few specialists. Indeed, some of
the specialist centres set up following the CMO
report in 2002 have had to close because of a lack of
funding and expertise. For this reason, "referral out
of area" and "choose and book" should be available
to all sufferers.

"The Department of Health and the World Health
Organisation acknowledge that this is not a
psychiatric condition
. What action is the Minister's
department taking to ensure that people with ME are
as respected as people with other medical
and that they are not forced to accept, as
a condition for receipt of benefits and social care,
"treatments" such as CBT and GET that, at best,
provide no beneficial effects and, at worst, are
positively harmful?."

Replying to the debate for the Government,
Baroness Thornton said:

"The noble Countess, Lady Mar, made a very
interesting and well informed speech about CFS/ME,
whose sufferers she has championed for many years.
I will be pleased to investigate the issues that she
has raised about CFS/ME treatment, recommended
by NICE. It is important to restate the value which
the Government place on the independence of NICE's
evaluation process, but I undertake to follow up the
disturbing point she made and see whether I can
provide her with clarification."

To read the full debate in Hansard, please click here.
The Countess of Mar's contribution starts in column
317 and Baroness Thornton's full reply to the debate
starts in column 323.




The ME Association has become increasingly
concerned about feedback from our members
regarding the way in which some insurance
companies are behaving when it comes to claims
for private sickness/disability related benefits -
PHI (income protection/replacement) policies in

We do not believe that the NICE guideline on ME/CFS
is helping matters, especially the way in which one
insurance website has interpreted the outcome of
the NICE guideline judicial review to mean that
ME/CFS is now classified as a psychiatric illness
rather than a physical illness.

As a result, it is claimed that insurance companies
can opt of making payments to people with ME/CFS
where there is a psychiatric illness exclusion clause
in the contract. See also our report on the Countess
of Mar raising this issue during a House of Lords

We have therefore arranged a meeting with
representatives from the Association of British
Insurers (ABI) to discuss these and other
insurance-related concerns. The meeting will take
place on Wednesday 8 April.

Whilst we cannot undertake to deal with individual
insurance related problems at this meeting, we are
keen to hear from anyone who has any important
general points which ought to be raised at this
meeting. The agenda for the meeting will be based
on the concerns noted above about the NICE
guideline and the various problems that are
discussed in the new MEA information leaflet on PHI


We are also about to start updating our database on
insurance companies that are either helpful or
unhelpful when it comes to offering travel insurance
policies to people with ME/CFS. If you have any 2009
information on helpful/unhelpful travel insurers
please let us know the basic details.

MEA iterature can e obtained using the pdf ORDER
FORM on the MEA website:

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