'CFS/ME'-NICE Guideline-10 reasons not to implement

[Guest guest]

Reference: *CFS/ME* -Reasons for Judicial Review of

the NICE Guideline -Prejudice-based Medicine?;

By Margaret ; Help ME Circle, 28 October 2008:

http://www.meactionuk.org.uk/Prejudice-based_Medicine.htm

~jvr

``````

From: Greg crowhurst

Permission to repost

From the literature:

ten reasons not to implement

the NICE Guideline on " CFS/ME "

Greg Crowhurst

10/28/2008

*....Virtually all the UK ME/CFS charities

condemned the Guideline as unfit for purpose:

such was the outrage and disgust throughout the

ME/CFS community at the way that NICE had

deliberately ignored so much evidence about

ME/CFS " ....*

*Margaret Prejudice-based Medicine?

Reasons for Judicial Review of the NICE Guideline on

" CFS/ME " *

*1) Unfortunately this remains a document which

not only fails to grasp the full nature of neurological

ME and the implications for management, but also

fails to provide adequate guidance for diagnosis.

It also recommends widespread use of the

psychosocial rehabilitative treatments of CBT

(Cognitive Behavioural Therapy) and GET (Graded

Exercise Therapy) in spite of reports of harm from ME

patients. At best this means that the main thrust of

the guidelines are irrelevant for most people with

ME, at worst dangerous.

*NICE guideline on diagnosis & management of

CFS/ME in adults and children - WAMES statement

September 2007*:

http://www.wames.org.uk/NICE%20WAMES%20Statement.pdf*

*2) " ..I do not support the NICE CFS/ME guidelines.

I feel they are detrimental to patients and that they

fail to consider the relevant evidence about the

illness... "

*Dr Ian Gibson MP*:

meagenda.wordpress.com/2008/06/01/dr-ian-gibson-mp-position-statement-on-the-nic\

e-cfsme-guidelines/

*3) The trustees are disappointed to note that the

guidance still places undue emphasis on two

treatments - cognitive behavioral therapy (CBT) and

graded exercise therapy (GET) - for which the

underlying evidence is inadequate and

unrepresentative.

Many patients have reported little or no benefit from

CBT and others have experienced seriously adverse

effects from GET.

They are also disappointed that the GDG could not

agree to recognise the World Health Organisation's

classification of M.E. as a neurological illness.

In addition, the summary guideline does not convey

or reflect the impact which the illness can have on

the lives of those people who are most severely

affected by M.E.

*Action for ME, Statement from Trustees*:

http://meagenda.wordpress.com/2007/08/22/afme-statement-nice-cfsme-guideline-ame

nded/

*4) The reasons why the NICE Draft Guidelines

were almost universally condemned was due to the

poor quality of analysis and their lacking in ability to

serve the needs and hopes of people with ME and

their families.

Without drastic change to the draft guidelines the

NICE guidelines would have been irrelevant and, to

quote Des (Chair of the parliamentary APPG

for ME), " ...unfit for purpose.... "

Reaction to the NICE guidelines can still be summed

up as continued dismay that NICE have chosen to

highlight, yet again, Cognitive Behavioural Therapy

(CBT) and Graded Exercise (GET) as the most

effective forms of management (aka treatment) for

ME.

The emphasis still seems to be on these dangerous

and unhelpful psychiatric paradigms - paradigms

referred to and recommended as therapies and as

treatments for ME, despite ME patients and groups

stating they are ineffective or harmful.

*Invest in ME Response to the NICE Guidelines on

Clinical Practice*

http://www.investinme.org/IIME%20Campaigning-NICE-Guidelines%20IiME%20Response.h

tm

*5) I do believe that many problems stemmed from

the scope of the guidelines and York Review. Given

that the aetiology and pathogenesis of the condition

were not part of the scope these could not be

searched for, and subsequently meant that

thousands of papers could not be discussed as part

of the process.

Just one example of this is GET; the question posed

by the York team looked for papers on 'GET and

ME/CFS', it did not however search for papers on

'Exercise and ME/CFS', and this meant that the many

papers showing the potential harm of exercise on

the bodies of people with ME/CFS, and that people

with ME/CFS react adversely to exercise were not

picked up, and no matter how many times I brought

them up in the meetings, I was told that the scope

of the guideline meant that they could not be

discussed, creating a slanted view on exercise and

ME/CFS, with only the papers on GET being able to

be discussed.

* on, Patient Rep on the NICE Guideline

Development Group (BRAME):

http://www.brame.org/contact2.html

*6) The Northern Ireland ME Association is

disappointed that these new guidelines bring us no

nearer a cure for this common and debilitating

illness, and that so few management options are

being offered to NHS patients.

*NIMEA

http://nimea-ni.blogspot.com/2007/08/ni-mea-initial-response-to-nice.html

*7) There can be no doubt that NICE ignored the

international evidence that ME/CFS is a biomedical,

not psychiatric, disorder, claiming that studying this

evidence fell outwith its remit.

Such a claim is mystifying, since knowledge of the

existing evidence-base ought surely to be mandatory

before producing a national Guideline on the

management of any disorder, especially given that

adherence to such a Guideline is obligatory

throughout the NHS (and hence for affiliated

agencies such as the Department for Work and

Pensions and Social Services).

Not only has the " evidence-base " upon which NICE

relied for its recommended management

interventions for ME/CFS been exposed as deeply

flawed by virtue of the heterogeneous populations

studied; the methodological inadequacy; the

corrupted data; the high drop-out rates; the

undeniable ineffectiveness of CBT/GET as shown by

the outcomes measures, and the finding that the

claimed benefits may have been illusory,

(see: " Inadequacy of the York (2005) Systematic

Review of the CFS/ME Medical Evidence Base " by

Malcolm Hooper & Horace Reid at *

http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

but just as importantly, the proscribing by NICE of

appropriate testing and its stipulation that any

vitamin or mineral deficiency must not be corrected

by prescription would seem to constitute a real and

even life-threatening danger to people with ME/CFS.

*More potential dangers of the UK NICE Guideline

on " CFS/ME " for people with ME/CFS Margaret

http://www.meactionuk.org.uk/Dangers_of_NICE_for_MECFS.htm

*8) These recommendations are going to be of no

value whatsoever to many people with ME/CFS. They

are also going to be impossible to implement due to

a lack of both funding and human resources.

Shepherd *Dr Shepherd responds to the

NICE guidelines

http://www.bmj.com/cgi/eletters/335/7617/446

*9) The NICE guidelines as a whole more accurately

describe patients suffering from idiopathic fatigue,

as outlined by the WHO at ICD-10-f48:

this endangers the lives of extremely ill and

severelydisabled people whose disease demands a

biomedical approach. Using vague and minimal

criteria to diagnose patients with this illness

trivialises' the serious nature of ME and focuses

attention on fatigue - a symptom that many people

with severe ME may not even notice in the vast

range of troublesome and disabling symptoms they

experience.

Whilst these NICE guidelines are in use, patients

with ME will continue to be misidentified,

misrepresented and completely side-lined,

particularly if their neurological symptoms are

severe.

Any service recommended then, with a

biopsychosocial emphasis, is likely to be dangerous

and inappropriate in helping them to deal with their

illness. These guidelines, in not following the WHO

classification that this is a neurological disease, are

shockingly inadequate.

They create a wholly inaccurate picture of this

serious disabling neurological and multi-system

dysfunction disease and will surely lead to poor and

incorrect treatment, continuing isolation and a

potential worsening of disability: even people who

are mild and moderately affected, after using CBT

and GET, may find themselves joining those of us,

who are severely affected.

25% Severe ME Group

*25% ME GROUP STATEMENT ON NICE ME/CFS

GUIDANCE DOCUMENT

http://www.25megroup.org/Campaigning/NICE.htm

*10) NICE were presented with a unique opportunity

to provide practical guidance that would help to

ensure that people with ME/CFS were offered

management advice covering all aspects of the

illness that would be acceptable and beneficial.

They have failed the task that was set. People with

ME/CFS in England, Wales, Scotland and Northern

Ireland urgently require a network of physician led

multidisciplinary services based on a biomedical

model of causation.

Where such services already exist they are much

appreciated by patients - as was demonstrated at

the July 2007 meeting of the ME *All Party

Parliamentary Group* at Westminster. They do not

want a network of services that offer little more

than CBT and GET.

*NICE GUIDELINE ON ME/CFS - STATEMENT BY THE

ME ASSOCIATION BOARD OF TRUSTEES

http://www.meassociation.org.uk/content/view/335/70/