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verklaart bezwaren

van Engelse patiŽnten

tegen de NICE richtlijnen










De Hoge Raad in Engeland heeft een gevoelige klap uitgedeeld aan patiŽnten en

mijn rechtvaardigheidsgevoel door de bezwaren tegen de NICE richtlijnen af te wijzen.


Sterker nog, de rechter oordeelde dat de beschuldigingen schadelijk zijn,

omdat het "professionals" zou kunnen doen aarzelen zich in te laten met ME/CVS etc.


Gegeven de lijst van mensen die zich nu t.b.v. de overheid met ME/CVS bezighouden:

Welke patiŽnt of serieuze wetenschapper zou er rouwig om zijn als de zelfverklaarde "vermoeidheidsexperts" besloten zich niet langer met ME/CVS te bemoeien?



Het zeer uitgebreide gerechtelijke vonnis kunt U hier lezen.


Hieronder treft U een artikel uit the Herald aan n.a.v. de uitspraak van de Hoge Raad.


Daaronder de verslaglegging van de uitspraak op de website van BBC News.


Een selektie uit het kritiek van prominente beroepsverenigingen op de richtlijnen

(zie onderaan) toont aan dat de rechterlijke uitspraak volledig haaks staat op

de feiten en zeer steekhoudende argumenten van talloze professionele organisaties.

Je vraagt je af hoe een rechter tot het oordeel komt om de patiŽnten te veroordelen...




Voor het officiŽle kommentaar op de gerechtelijke uitspraak,

klik op het logo van de betreffende organisatie.














Voor berichtgeving over de aanloop naar en verslaggeving van

de rechtszaak tegen de NICE richtlijnen: klik hier, hier, hier, hier en hier.







Court rejects challenge over ME treatment



Web Issue 3407, March 14 2009


By Jonathan Liew



Charities have condemned a court decision to throw out a bid by two ME sufferers to change guidance given to NHS doctors on treating the condition.









ME pair lose NHS treatment appeal


Published: 2009/03/14 15:55:16 GMT



Two ME patients have lost a High Court appeal against what they claimed was an "unfair and irrational" approach by the NHS to their condition.






Citaten (kritiek van beroepsverenigingen en andere belanghebbenden)



Onderstaande selektie van citaten uit het officiŽle kommentaar van prominente beroeps-verenigingen en patiŽntenorganisaties op een konceptversie van de NICE richtlijnen,

die niet veel afwijkt van de eindversie (klik hier) is alleszeggend...


De citaten werden verzameld/gekategoriseerd door Margaret Williams (klik hier).




It almost seems that

a select group of psychiatrists with a polarised view of this complex condition

is directing the development of the guideline from "behind the scene'.


The draft guideline is fundamentally flawed

because it presupposes certain interventions

(CBT and GET) to be highly effective in CFS/ME for routine clinical use

despite lack of adequate evidence.


The draft guideline reflects

an incomplete and psychiatrically polarised view of CFS/ME.


It would be immoral for NICE

not to recognise the huge dissatisfaction about this draft guideline

amongst most patients, carers and clinicians.


The GDG is neither competent nor empowered

to redefine CFS/ME by using only one of all the minor criteria:

by doing so, the Group is tactically promoting the Oxford (i.e. Wessely School) criteria

over the more widely used and recognised international CDC criteria Ė

again, a clear evidence of psychiatrists" influence on this group.


This paragraph deals with a publication (Wessely et al, Lancet 1999)

which was published as a HYPOTHESIS and which remains to be proven.

However, the GDG seems to have taken it as a matter of fact.

Please refer to the criticisms of this article in the Lancet.

Being only a hypothesis,

(it) is totally irrelevant for the purpose of a dedicated guideline on CFS/ME.


It is highly misleading to state that CBT is the therapy of first choice,

since the only relative efficacy RCT quoted in the Guideline

(Ridsdale et al, Br J Gen Pract 2001:51:462:19-24) shows that

counselling has better outcomes than CBT.


This recommendation seriously conflicts with

the recommendation that patient choice and preference

need to be uppermost in the collaborative approach to care,

and the finding that

45% of patients report either being made worse or not helped at all by CBT

and, elsewhere, only 7% of patients surveyed report being helped by CBT.

Why is a misleading recommendation being made?


We see responses to the Action for ME Membership Survey rate

CBT and GET as the least helpful of a range of interventionsÖ

It would be a shame to antagonise patient groups,

which are often not convinced by

the benefits of CBT as demonstrated in clinical studies.


If 50% get worse with GET,

why suggest it as first line of treatment?


Can we clarify which name is preferable to use

and identify that CFS/ME falls within the umbrella of neurological conditions?


GET is dangerous without activity management first.


Many patients experience food intolerances

and find a clinically supervised exclusion diet a helpful tool

in identifying those symptoms which may be related to foods.

We feel that this should be reflected here.

People with ME/CFS ... clearly need straightforward and sensible advice

that covers a wide range of dietary management

along with advice on the vitamins, minerals and supplements

that are extensively used and recommended to people with ME/CFS.


We note the discrepancy between the results of the surveys of patient groups

showing that a large number have found dietary change helpful

(59% in one survey and 65% in the other)

and the final recommendations in the Guideline.


Second line tests should include autoimmune serology.


Are we now saying that

all patients have chronic fatigue rather than chronic fatigue syndrome?


The draft produced by the Guideline Development Group (GDG)

is unsafe and unsatisfactory (ďunfit for purposeĒ)

because it does not engage with key issues

involved in the diagnosis and management of ME/CFS.


(Commenting on

ÖCBT is an evidence-based treatment for CFS/MEÖ)

It is not.

The evidence base consists of

only five trials which have a validity score of less than 10.

We note that the most recently published RCT on CBT (O"Dowd 2006) states:

"there was, however, no evidence that

the treatment restored normal levels of function for the majority of patient."


The rationale for using CBT in ME/CFS is that

inaccurate beliefs/ineffective coping maintain and perpetuate the illness,

but it has never been proven that

these illness beliefs have caused or maintain the illness,

and correlations (where they exist)

might just as well have arisen from

the valid belief that the illness does have a physical cause,

and that activity avoidance is the correct course of action.


Neither CBT

(a form of psychotherapy designed to manage dysfunctional illness beliefs)

nor GET (which is used as part of

a biopsychosocial programme predicated on a model of physical deconditioning)

are evidence-based to a level

that would allow NICE to recommend

that these management strategies be rolled out

to the 120,000 Ė 240,000 people with ME/CFS in the UK.


(Commenting on

ÖA programme of CBT should includeÖexplanation of the CBT model for CFS/MEÖ)

There is no CBT model for ME/CFS.

Rather there is CBT, a form of psychotherapy,

which can be applied to all illnesses through the supposed biopsychosocial model.


The belief that evidence-based guidelines

can be constructed on such an inadequate evidence base is, in our opinion, misguided.


If promulgated, even if subject to subsequent review,

the guidelines are likely to be in force for at least five years,

during which time force people with ME receiving NHS care

force will be unable to benefit from whatever scientific advances may be made.


The diagnostic criteria detailed in paragraph

do not conform to any existing clinical case definition for CFS/ME

and appear to be based on poor evidence.


Greater evidence should be placed on medical interventions,

including symptom control and

improved access by patients to services, information and resources.


The (draft Guideline), as it stands, has obvious defects,

which make it unsuitable for general application throughout the NHS.


There is no indication that

the document reflects a balanced view of expert opinion on CFS/ME.


The review claims to be evidence-based

but in fact is mostly based on expert opinion, rather than on evidence.


We strongly recommend that the draft be rewritten

to reflect more accurately the current state of scientific knowledge,

and also the views of stakeholders (and) patients organisations,

which do not appear to have been taken much into account.

NICE guidance is of such importance in the NHS,

and has such huge repercussions on patterns of treatment and care.

It therefore needs to be accurate.

Where there are differences of opinion among experts,

such differences should be reflected in the document.


However, NICE largely pays lip service to the principle of consensus,

with patient evidence being viewed as biased and virtually ignored.


Diagnostic Recommendations: this is a curious paragraph in a number of respects:

ME is a neurological illness (ref. The WHO classification),

so why would patients with neurological signs be excluded from diagnosis?


The biomedical research evidence suggests

it cannot be safely assumed that

negative effected reported by patients following exercise

are attributable to inappropriate application

of what we are told is an intrinsically helpful approach.

However as is common practice sale techniques,

the "customer" is gently led into a corner by a set of very cleverly designed questions

aimed at achieving agreement on everything the salesman offers.


It is essential that this issue of deconditioning and exercise/rest is resolved,

since the advice given to maintain exercise

even when there is an increase in symptoms is potentially harmful and dangerous,

and the supposed negative effects of deconditioning

would be negligible in comparison.


Some research should be done on thyroid function. Levels of T3 and T4

and TSH should be measured at times in all patients

and readings scrutinised to see if many are at the bottom end of the normal range.

There is also evidence to suggest that

there may be some "peripheral resistance" to thyroid hormone in CFS/ME.


Supplements: again there is inconsistency:

(NICE states)"There is no evidence for the use of supplements",

whereas the Full Guideline details that there is

some evidence for Essential Fatty Acids and magnesium.

The statement in NICE is misleading

and potentially prevents many patients deriving benefit from certain supplements.

Another failing of the strictly "evidence-based" approach.


A guideline based on dysfunction and disability

will inevitably remain focused on rehabilitation

rather than on cure and prevention.


We are concerned that doctors reading this Guideline

might interpret this Guideline as that

anxiety and depression are primary causes of CFS/ME

for which, as far as we are aware, there is no evidence.


There is a danger in relying solely on

information from systematic reviews of clinical and randomised trial reports

for non-pharmaceutical treatments

that are not easily defined or replicated, such as CBT and GET.


For many interventions there is a lack of evidence of efficacy.




We think that this is a potentially dangerous statement

(i.e.) that with increases in CFS/ME symptoms,

exercise or physical activity should be maintained

to avoid the negative effects of deconditioning.

We are not aware of any clinician who would make this recommendation,

except in a very mildly affected patient


The consensus Guideline Development Group, with one exception,

did not include any single expert in major aspects of CFS,

i.e. clinical aspects or research


Clinical evidence and patient experience

suggest strongly that some patients may be worsened by GET


We do not believe that an acceptable definition of CFS/ME has been adhered to states "there is no pharmacological treatment or cure for CFS/ME".

This is ostensibly true,

but misses the point thatÖ..

most patients have additional symptoms,

e.g. sleep disturbance, pain, anxiety, mood changes,

new onset headache, bowel symptoms, allergies, vertigo etc.

Without management of these symptoms the individual is unlikely to improve easily.


It is stated that GET may be an appropriate addition

to help patients develop their physical capacity and functioning.

GET in its traditional form is not applicable,

and not possible in the very severe dependent patients.


CBT and GET are mentioned several times.

However, there may be other approaches which are more helpful.

Lack of evidence

does not necessarily mean lack of effectiveness for these approaches.







Met dank aan Jan, Rubia, Brigit en anderen



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