Monday, October 23, 2006
Comprehensive MEA response to NICE Guideline on ME/CFS (draft 2)


MAY BE REPOSTED

This second draft takes account of the very helpful comments and feedback 
that has been sent in by people with ME/CFS over the past week.

Further comments to the MEA are most welcome - see notes at the end.

A further draft will be prepared next week.

SECOND DRAFT

Following on from our previous statements on the September draft of the 
NICE guideline on ME/CFS, and our summary of the meeting held at NICE on 
Thursday 5 October, the MEA has now produced a second draft of the 
comprehensive response that we intend to send to NICE at the end of this 
stage in the consultation process.

This response takes account of all the feedback that the MEA has received 
so far and the discussion that took place at NICE on 5 October. Thank you 
to everyone who has sent in comments.

As a stakeholder in the guideline development process the MEA has a duty to 
consult with its members and produce a response that reflects their views.

So we want to know if you feel that our response is appropriate and 
constructive. We want to know if there are any omissions or areas where we 
have been too critical, or not critical enough. We also want to know if 
there are any areas where we should be praising the guideline.

In April 2007 NICE will publish a final version of a guideline on ME/CFS. 
This will have a major effect on how your illness is going to be managed 
for years to come.

The MEA believes that the current attempt is seriously flawed and is not 
therefore fit for purpose.

Over the coming weeks and months we need to do all we can to make changes 
while there is still an opportunity to do so.

_______________________________________________________________________________________


MEA RESPONSE TO THE SEPTEMBER DRAFT

The ME Association (MEA) has carefully considered the contents of this draft.

As a stakeholder in the guideline development process we have actively 
sought the views of our members over the past few weeks as well.

We have also taken note of the responses to our criticisms that were made 
at the meeting with NICE on Thursday 5 October.

The comments below represent the outcome of this extensive consultation 
process.


OVERALL CONCLUSIONS

The MEA fully supports the view that a guideline on the assessment and 
management of ME/CFS should be prepared by NICE and made available to all 
health professionals in the UK.

Such a guideline must reflect the wide variety of clinical presentations 
and pathophysiological mechanisms that come under the ME/CFS umbrella.

Above all, it must be acceptable to people who have this illness.

Overall, we feel that the current (ie September 2006) version of the 
guideline that has been prepared by NICE is unfit for purpose and we would 
not be willing to endorse it.

We have five major disagreements.

a.. First involves the unbalanced coverage of CBT and GET.

a.. Second is the failure to provide any meaningful advice on management 
during the acute and very early stages of the illness before a firm 
diagnosis of ME/CFS has been made.

a.. Third is the failure to provide any meaningful advice on symptomatic 
management as the illness enters a more chronic stage.

a.. Fourth is the way in which it deals with issues affecting the severely 
affected

a.. Fifth is the failure to acknowledge the WHO classification of ME/CFS 
(and PVFS) as being neurological disorders (in section G93.3 of ICD 10) - a 
position that the Department of Health also accepts - and instead adopts a 
new and much wider clinical definition of ME/CFS that includes almost 
anyone with chronic unexplained fatigue.

We will first elaborate on these five objections in more detail:

1 A VERY UNBALANCED ACCOUNT OF THE BENEFITS OF CBT AND GET (section 1.3.1)

Our principal disagreement involves the way in which almost all of the 
management section is devoted to a manual-like approach that sets out how 
the authors believe that cognitive behaviour therapy (CBT) and graded 
exercise therapy (GET) should be used as an automatic first line treatment 
for almost everyone who has mild to moderate ME/CFS.

The sections on CBT and GET contain numerous recommendations on how to deal 
with specific management problems - most of which are based on opinion 
rather than the type of evidence based medicine that normally dominates a 
NICE guideline.

Some of the advice on non-pharmacological management contains sensible and 
common sense suggestions. We already recommend some of these coping 
strategies in our own self-help literature. But there is no reason why this 
type of advice has to be given by specially trained behaviour therapists in 
hospital. Where the advice is sensible, and not based purely on the 
psychosocial model of abnormal illness beliefs and behaviour, it should 
form part of a self-help or Expert Patient management programme. This sort 
of advice could easily be given out in a primary care setting - where most 
people with ME/CFS are, and will continue to be managed.

However, much of the coverage here is seriously flawed because the opinions 
of those who are obviously very enthusiastic about the overall value of 
hospital-based CBT and GET are given undue emphasis whereas any form of 
critical opinion from people who have been treated with these approaches is 
simply ignored. The Chief Medical Officer's report adopted a trident 
approach to deal with this difficult issue whereby it took note of opinion 
from clinicians and patients, as well as the results from published 
research studies, when it came to dealing with CBT and GET.

This is crucial because patient opinion submitted to the CMO report 
indicated that the results for CBT were not at all impressive with around 
65% saying that this approach had not been helpful. And around 50% of 
people who had been placed on a graded exercise regime reported that this 
had made their condition 'worse'.

NICE has clearly not grasped the fact that the treatment trials being 
quoted to support the use of CBT and GET have only used relatively small 
numbers of carefully selected patients, have generally been carried out in 
tertiary care centres that support the psychosocial model of ME/CFS 
causation, and in some cases have had quite high drop-out rates (37% in one 
GET trial). Our feedback in relation to GET dropouts is that some of these 
people have gone on to relapse as a result of the exercise programme - but 
this is never made clear in published results.

While preparing this response we have received feedback from someone who 
has recently been treated at an internationally recognised centre where 
this type of behavioural research is carried out. This person has stated 
that when someone cannot build up the exercises in the speed that the 
centre require, they are then told that they are not motivated enough to 
follow the programme and have to leave We would be willing to forward the 
complete response to NICE if requested.

CBT

With regard to CBT (sections 1.3.1.11-13), we believe it is completely 
unacceptable to imply that everyone with mild to moderate ME/CFS needs to 
take part in a hospital-based CBT programme that includes an underlying 
assumption that symptoms are maintained by factors such as abnormal illness 
beliefs and behaviour. While there are some people who come under the 
diagnostic umbrella of CFS who do fit the psychosocial model of illness 
perpetuation, there are many others who do not, have no psychiatric 
co-morbidity, are well motivated, and are doing everything they can to try 
and get better. They would, quite rightly, object to such an approach to 
their management.

The Guideline Development Group (GDG) should also take note of the most 
recent research study on CBT. This found that CBT did not offer any 
significant overall benefit when compared to education and support and 
standard medical care (reference: Cognitive behaviour therapy in chronic 
fatigue syndrome: a randomised controlled trial of an outpatient group 
programme. Health Technology Assessment. 2006 Oct; 10: number 37 - 
available on-line at: http://www.hta.ac.uk/fullmono/mon1037.pdf).

Neither does NICE appear to appreciate that counselling may well be just as 
effective as CBT in some instances. Two relevant references are:

Chronic fatigue in general practice: economic evaluation of counselling 
versus cognitive behaviour therapy. British Journal of General Practice 
2001; 51: 15-18.
Chronic fatigue in general practice: is counselling as good as cognitive 
behaviour therapy? A UK randomised trial. British Journal of General 
Practice 2001; 51: 19-24.

GET

We have a number of major concerns about the information being given on GET 
(sections 1.3.1.14 - 18).

Our first concern relates to the word exercise. Exercise is, of course, a 
completely misleading term for energy management in the severely affected 
group. It is also inappropriate for most people in the moderately affected 
group. It may or may not be appropriate in mild cases.

The unqualified and frequent use of the term exercise clearly implies that 
exercise is the key to recovery and that rest/relaxation is generally harmful.

NICE only have to look at the press coverage of the York systematic review 
in the Journal of the Royal Society of Medicine to see that this is how the 
media is already interpreting this type of advice. The same sort of 
over-simplistic interpretation will be made by most doctors who have no 
special interest in ME/CFS. What is required is a name and a practical 
approach that advises people with ME/CFS on how to achieve a sensible and 
flexible balance between activity or energy management (not exercise) and 
rest. This will depend on the stage, severity and variability of their 
condition - as we point out in some detail in our own information 
literature. Some people may need to increase their activity levels whereas 
others may actually need to reduce them, especially in the early weeks and 
months following an acute onset - this is not what graded exercise implies.

Our second concern relates to the way in which the guideline appears to 
have dealt with energy/activity management during the very early stages of 
this illness (ie first few weeks and months) before a firm diagnosis of 
ME/CFS has been made. At this stage we believe that a period of appropriate 
rest and convalescence is essential (we are not advocating that people go 
to bed and stay there) and that inappropriate exercise could well produce a 
further deterioration. Is NICE really advocating graded exercise during the 
very early stages of ME/CFS? This appears to be the case in section 1.2.1.10.

Our third concern relates to what is commonly referred to as the 'glass 
ceiling' effect whereby people with ME/CFS often make a degree of 
improvement over the prolonged course of time, but then reach a point at 
which they are unable to increase their physical activity - despite high 
levels of motivation. The guideline does not even acknowledge this 
situation - presumably on the assumption that graded exercise will 
eventually return almost everyone to normal health.

Our fourth concern relates to the advice that activity levels should 
largely be maintained during a period of relapse or setback (section 
1.3.1.20). We believe this advice is over simplistic and potentially 
dangerous, and is once again based on opinion rather than any sound 
evidence. We do not believe that spending a few days resting in bed during 
a significant relapse of symptoms, certainly one caused by an infection, is 
going to be harmful or result in deconditioning. This is the way in which 
many people with ME/CFS successfully cope with a relapse and we believe it 
would be irresponsible to ignore the views of patients yet again. We also 
believe that NICE has not taken appropriate note of several research 
studies which refute the role of deconditioning in the perpetuation of 
symptoms.

The section covering relapse or setback is curious in that while it 
provides advice on how to cope with a relapse/setback it fails to include a 
list of very common causes of relapse (ie infection, over-exertion, trauma, 
surgery and general anaesthetics, some types of vaccination). This is 
important information that doctors ought to be aware of and passing to 
their patients.

CBT AND GET

The sections on CBT and GET are unbalanced and contain advice that is 
potentially harmful for a significant proportion of people who come under 
the ME/CFS umbrella. We cannot therefore endorse them.

Instead, we would like to see a guideline that advocates the type of common 
sense, self-help strategies (ie pacing their activities according to stage 
and severity) that have been repeatedly endorsed by people with ME/CFS. 
This is an approach that could be incorporated into primary care management 
and/or an Expert Patient programme, and we find it strange that the Expert 
Patient Programme in relation to ME/CFS is not even mentioned in the 
shortened version, which will presumably form the basis for what is sent 
out to health professionals.

We also wonder whether NICE is living in the real world. The clear 
implication being given in this guideline (key priorities section on p6/48) 
is that if people with mild to moderate ME/CFS want to improve then they 
need to be referred by their GP to a multidisciplinary hospital-based 
ME/CFS service that has expertise in CBT and GET. NICE acknowledges that 
these services cannot be delivered by general practitioners.

But where is the money going to come from to assess and treat around 
180,000 people with ME/CFS in the mild to moderate category? If an 
assessment and course of CBT and/or GET costs around £1,000, the total cost 
to the NHS would be around £180 million.

And where are all the cognitive behaviour therapists going to come from? 
CBT services are already in a position where they cannot cope with a 
rapidly increasing referral rate for common psychiatric conditions such as 
anxiety and depression - a steadily worsening situation that NICE has been 
well aware of for some time.


2 A FAILURE TO PROVIDE INFORMATION ON THE VERY EARLY STAGES OF THE ILLNESS

Our second major disagreement concerns the way in which the guideline has 
almost completely ignored (apart from section 1.2.10) what happens in the 
first four months before a diagnosis of ME/CFS is confirmed. Whilst we 
agree that a period of time needs to elapse before the diagnostic label of 
ME/CFS is used, there are a number of crucial points that need to be 
discussed in relation to how these patients should be managed during the 
very early stages (ie the first few weeks and months).

On the question of labelling, the 2005 ME Alliance report into early 
diagnosis suggested that there are appropriate names that could be used 
while the diagnosis of ME/CFS is being considered - one example being a 
post-viral fatigue syndrome.

But what is far more important is the fact that advice on aspects such as 
sleep disturbance and energy management is likely to quite differ quite 
significantly from that offered once the illness enters a more chronic 
stage. In regard to sleep, excessive sleep (hypersomnia) is very common at 
this stage and may well form a crucial part of a natural recovery process. 
We know of no evidence to suggest that people who are needing to sleep for 
a long period of time at night following an acute infection should be 
coerced into adopting a more normal pattern of sleeping (as in 1.3.2.1).

Anecdotal evidence is overwhelmingly in favour of a period of carefully 
monitored rest during the very early stages, something that may include a 
period of bed rest, followed by convalescence. Exercise in the normal sense 
of the word usually has little or no role to play during this very early 
stage. In fact, an inappropriate exercise programme is very likely to make 
the illness worse.


3 A FAILURE TO PROVIDE AN ADEQUATE DESCRIPTION OF MANY IMPORTANT ASPECTS OF 
MANAGEMENT (mainly section 1.3.4)

Our third major disagreement is that having spent most of the guideline 
recommending CBT and GET, the remainder contains a totally inadequate 
review of all the other aspects of management - many of which are extremely 
important to patients, and are likely to be dealt with in primary care 
rather than hospital-based services.

In particular, the almost non-existent coverage of pain, which for some 
people is the most disabling aspect of their illness, is very poor - 
especially when this is compared to the vast amount of space given to sleep 
disturbance.

In other words, there is very little of practical value in this guideline 
for general practitioners and members of the primary healthcare team - who 
are likely to remain the main source of information, advice and support for 
people with ME/CFS.


4 ISSUES AFFECTING THE SEVERELY AFFECTED (mainly section 1.4)

Although the guideline acknowledges that its recommendations regarding CBT 
and GET do not apply to the severely affected, we feel that the information 
that has been supplied does not take account of the enormous difficulties 
currently being experienced by many people in this group when it comes to 
accessing either hospital-based or domiciliary-delivered medical care, 
obtaining practical support, and being refused one or more component of the 
disability living allowance because both lay and medically qualified 
assessors have received misinformation about the nature of this illness.

The description of severe ME/CFS (pp 4 - 5 of the short version) needs to 
include the type of more severe neurological symptoms - ie blackouts, 
atypical convulsions, loss of speech and swallowing necessitating tube 
feeding - that are prominently referred to in section 4.2.1.2 of the CMO 
report.


5 DIAGNOSTIC CRITERIA FOR ME/CFS (section 1.2)

We are very concerned at the way in which the guideline has modified the 
current Fukuda research criteria for CFS (section 1.2.1.2) to produce a new 
clinical criteria that extends the boundaries of what currently constitutes 
ME/CFS (ie chronic unexplained fatigue + one other symptom). Many 
clinicians and researchers believe that the existing research criteria are 
already far too wide and as a result CFS has become a dustbin diagnosis for 
anyone with unexplained chronic fatigue. The diagnostic criteria proposed 
by NICE means that almost anyone with unexplained chronic fatigue, or 
feeling 'tired all the time' will now be diagnosed as having ME/CFS.

The practical result is that hospital-based services, which are still 
virtually non-existent in some parts of the UK, or are struggling to cope 
with their existing workload in others - will be flooded with referrals for 
people with unexplained chronic fatigue.

It makes no sense whatsoever to advocate what is basically a 'one treatment 
fits all' approach to the extremely heterogeneous range of illness 
presentations that comes under the existing ME/CFS umbrella. To try and do 
this to everyone with unexplained chronic fatigue indicates a very serious 
lack of judgement.

And while we appreciate that the aetiology and pathogenesis of ME/CFS falls 
outside the NICE guideline remit, the situation regarding ME/CFS is unique 
in that a significant proportion of doctors still do not even accept that 
this illness exists as a distinct clinical entity (reference: Primary 
healthcare provision and Chronic Fatigue Syndrome: a survey of patients' 
and General Practitioner's beliefs. BMC Family Practice 2005; 6: 49; 
epublication: http://www.biomedcentral.com/content/6/1/49). So there must 
be reference to some of the important neuroradiological, neuroendocrine and 
neuroimmunological research findings that support the World Health 
Organisation classification of ME/CFS as a neurological disorder.

There should also be some reference to the important new research into gene 
expression that is being carried out in both the UK and the USA. This has 
already identified abnormalities in gene expression which may be 
characteristic of ME/CFS - a finding that could, of course, lead to a 
diagnostic test and specific forms of treatment.

We are disappointed to find that the Guideline Development Group (GDG) 
appear to have totally rejected the way in which the Canadian Guidelines 
have, quite sensibly, moved towards a much tighter clinical definition that 
clearly recognises the importance of sub-grouping under the ME/CFS umbella, 
and recommends that individual differences in symptoms and signs should 
play an important role in how an individual patient should be managed.

If NICE fails to take note of these crucial points relating to causation 
and subgrouping in formulating a new clinical criteria, ME/CFS will 
continue to be trivialised as a dustbin diagnosis with patients being 
incorrectly labelled as having some sort of psychosomatic or somatiform 
disorder.

As a result, people with ME/CFS will not receive the individual approach to 
management that they deserve and this will add to, rather than alleviate, 
the cost of health and social service provision.



We now move on to comment on some of the other conclusions and recommendations:


GENERAL PRINCIPLES OF CARE (section 1.1)

The is the one and only area where we find the content to be generally 
balanced, helpful and sensible - as it sets out the common sense protocols 
that should govern the management of any chronic disabling illness. We are 
particularly pleased to see that information regarding the issue of 
informed consent has been included here.

However, the value of the advice in this section is obviously dependent on 
the quality of the advice that is contained elsewhere in the guideline.


CLINICAL ASSESSMENT

The failure to include a compehensive list of illnesses that ought to be 
considered before the diagnosis is confirmed is a serious omission - as is 
the failure to point out that there are important clinical and research 
findings that differentiate ME/CFS from depression.

Where symptoms are being discussed in relation to disease severity (eg on 
page 5 of the shortened version) it should be pointed out, as was done in 
section 4.2.1.2 of the CMO report, that some people with more severe ME/CFS 
may have neurological symptoms and signs such as those already referred to.

With regard to the investigation of people with a possible diagnosis of ME/CFS:

Some of the recommendations regarding the investigation of people with a 
possible diagnosis of ME/CFS in section 1.2.2 suggest that the authors are 
not in touch with the sort of information that patients are taking to their 
doctors regarding diagnostic tests. For example, having funded research 
into the value of investigations involving RNaseL (for antiviral activity) 
and chronic fatigue syndrome urinary markers (CSFUMs), the ME Association 
is surprised to find no mention of these tests.

We are also concerned at the lack of emphasis regarding the need to further 
investigate people who, while they fit the diagnosis of ME/CFS, still have 
a symptom or symptoms, which is/are more prominent than is normally found 
in this illness. For example, the need to exclude sarcoidosis in someone 
who also has respiratory symptoms. Or systemic lupus and parvovirus 
infection in someone with joint pains. Or multiple sclerosis where 
neurological symptoms and signs are difficult to differentiate between the 
two - as does sometimes happen. Or an assessment for possible sleep apnoea, 
with an Epworth sleepiness score, where daytime sleepiness is excessive or 
comes on sudddenly.

There also needs to be far more information on where extended investigation 
is required from points that are gathered during the routine history taking 
(eg a positive response to a past history of blood transfusion prior to 
1991 indicates the need to check hepatitis C status).

And why is the estimation of creatine kinase (section 1.2.2.2) only 
recommended in children when it may be a marker of a muscle disease in adults?

With regard to the physical examination:

We are perplexed as to why there is no mention of clinical examination in 
the diagnostic assessment - in particular the assessment of problems such 
as dysequilibrium where a Romberg test or Fukuda test (for vestibular 
function) may demonstrate abnormal findings. Equally, people with symptoms 
suggesting postural hypotension should have their blood pressure checked 
lying and standing, and may in some circumstances require hospital based 
investigations. The various fibromyalgia trigger points need to be checked 
in those patients who have a fibromyalgic component.


PROGNOSIS

The very short sections on prognosis (1.2.3.3 and 1.2.4.3) are inadequate 
and fail to provide an accurate overall picture of current research 
evidence on prognosis. While we accept that an approach of cautious 
optimism, especially early on, should be adopted, the overall impression 
being given of a generally good prognosis is not consistent with published 
evidence. We suggest that the Guideline Development Group refer to the 
information on prognosis that is provided in section 1.4.3 of the CMO report.


SYMPTOMATIC RELIEF AND PHARMACOLOGICAL TREATMENT (section 1.3.4)

This section is hopelessly inadequate because, for many people with ME/CFS, 
providing effective management for one or more of their symptoms can be far 
more imprtant than the contribution of lifestyle management..

People with ME/CFS have a number of symptoms - pain, sleep disturbance, 
gastric symptoms - where a combination of self-help strategies and 
medication can often be very helpful. We do not understand why the 
guideline cannot provide more detailed information on the sort of 
approaches that can and should be given to patients. We have already 
referred to pain control, which for some is the most disabling aspect of 
having ME/CFS, but there are numerous other symptoms where symptomatic 
relief plays an important role in any management programme.

We enclose some examples of MEA self-help literature on pain relief and our 
ABC of symptomatic management to illustrate what could actually be done here.


DIET AND NUTRITION (section 1.3.5)

Again, this is hopelessly inadequate - especially in view of the fact that 
people with ME/CFS are very interested in dietary approaches and are going 
to ask questions about what may or may not be helpful. They clearly need 
straightforward and sensible advice that covers a wide area of dietary 
management, along with advice on the vitamins, minerals and supplements 
that are extensively used and recommended to people with ME/CFS.

Why, for example, is there no information about the reasons why some people 
(especially those with self-imposed dietary restrictions) with ME/CFS could 
be at increased risk of developing osteoporosis and how diet may be 
relevant here. Why is there no mention about the value of complex 
carbohydrates in helping to stabilise blood sugar levels? Why is there no 
mention of the importance of a good fluid intake? - especially in relation 
to those who have postural hypotension or orthostatic intolerance. Why is 
there no mention of simple self-help approaches that can help in the 
management of nausea (eg use of ginger) or the use of drugs such as 
ondansetron if this is more severe.

Why is is there no mention of EPA supplements, which are probably the most 
popular supplement currently being used by people with ME/CFS. While we 
accept that there have been no randomised controlled trials to support the 
use of EPA, it is untrue to say that there is 'no evidence' in relation to 
this supplement (reference: The use of eicosapentaenoic acid in the 
treatment of chronic fatigue syndrome. Prostaglandins, Leukotrines and 
Essential Fatty Acids 2004; 70: 399 - 401).

It is also unhelpful to simply state that 'Exclusion diets are not 
generally recommended for the management of CFS/ME' when irritable bowel 
symptomatology is quite common in this illness and there is good evidence 
to show that exclusion diets can be helpful in identifying food 
intolerances - where these occur in IBS. This section should also include 
advice about not going on a gluten free diet before a screening test for 
coeliac disease has been carried out. We could go on.


ALTERNATIVE AND COMPLEMENTARY APPROACHES (section 1.3.6)

Again, this section is hopelessly inadequate and appears from the first 
sentence - 'There are no complementary therapies that treat CFS/ME for 
adults and children and their use is not recommended' - to be very 
dismissive about any aspect of alternative medicine. With the lack of 
recognition, or limited management input from many NHS practitioners, 
people with ME/CFS have been spending large amounts of time and money in 
the alternative health sector.

The pros and cons of the popular alternative treatments - eg anticandida 
regimes; dubious allergy tests and treatments, Reverse therapy - commonly 
aimed at people with ME/CFS must be properly reviewed, and where necessary 
discredited. Approaches such as acupuncture for pain relief, which can be 
supported by some degree of clinical evidence, need to be included in a 
fair and balanced discussion.


SERIOUS OMISSIONS

As the CMO report acknowledged, the management of ME/CFS crosses many 
boundaries. It is not just dealing with a wide range of symptoms. The NICE 
guideline, while acknowledging that other management issues exist, almost 
completely ignores what could and should be done in these areas.

State sickness and disability benefits, for example, are a major source of 
worry for people with ME/CFS with many currently have to go to appeal in 
order to obtain benefits to which they should be entitled. Any guideline on 
management must, therefore, contain a section on state benefits, and make 
it clear that where ME/CFS is concerned people should be entitled to 
Incapacity Benefit and Disability Living Allowance where there is a genuine 
need. It also needs to be pointed out that ME/CFS has been recognised as a 
disease that can be covered by the Disability Discrimination Act, and that 
this can be very useful in relation to employment and education.


LEGAL ISSUES

The medical defence organisations have repeatedly warned doctors that 
prescriptions for exercise must be given with exactly the same care as with 
a prescription drug. Failure to do so is likely to result in litigation if 
harm occurs as a result of inappropriate advice. The MEA continues to 
receive reports from people with ME/CFS whose condition has relapsed 
following inappropriate advice about exercise and as a result we believe 
that the guideline must include this warning if it continues to use the 
term exercise - even when what is being referred to is activity or energy 
management.


UNHELPFUL OR INAPPROPRIATE LANGUAGE

Section 1:3:1:3 'Where the adult or child's main goal is to return to 
normal activities....' Many people will find this offensive as it implies 
that there is a substantial proportion of people who do not want to return 
to normal activities. The statement thereforet reinforces the prejudices 
about sick role behaviour held by some health professionals.


TWO FINAL POINTS

1 We welcome the inclusion of information about informed consent but feel 
that the guidance needs to make it clear, as did the CMO report in section 
4.4.2, that benefit provision must not be made conditional on agreeing to 
participate in a particular form of treatment.

2 The guidance, certainly in the shortened version, repeats itself at times 
to no added effect.


CONCLUDING REMARKS

In sending in this response as a stakeholder in the guideline development 
process, the MEA has consulted widely with its members and reflected their 
very strong views on the composition of the current draft.

We find it hard to imagine another situation where a group of people, many 
of whom have little or no direct experience in the clinical care of an 
illness they are advising on, have produced such a poor quality guideline.

We cannot understand why the views of people with ME/CFS and their charity 
representatives are not being listened to.

Unless NICE takes on board what the stakeholders representing patient 
opinion have to say, they will have failed the stakeholder principle - 
something that government continually tells us is at the heart of the 
consulting and listening process.

If this draft guidance becomes definitive guidance for health professionals 
in April 2007, it will be a very sad day for people with ME/CFS.


CONTACTS

If you wish to send in your views on the current NICE draft, or this second 
draft of the MEA response, this can be done by clicking on following link 
to email The MEA

More details on the MEA response so far, and a summary of the meeting held 
at NICE on 5 October, can be found elsewhere on this blog.

The MEA blog also contains a link to the shortened version of the NICE 
guideline and all other NICE documents relating to the September draft.

ENDS