STATEMENT BY NATIONAL ME ORGANISATIONS ON DWP CFS/ME GUIDANCE DOCUMENT (VERSION 9) 30th January 2007

We are pleased that the DWP has acknowledged that there has been a ‘black hole’ with ME/CFS, resulting in many decision makers/adjudicators having trouble making correct allocations, and has agreed to address this.

We unanimously reject version 9 of the ME/CFS Guideline, and deem it not fit for purpose. We feel that despite everyone’s hopes, even after much consultation, the DWP have made merely minor/limited changes to version 8 of the guideline, which was indisputably rejected by all involved ME Organisations in July 2006.

The guideline fails to adequately describe the different levels of severity. The minimum included in this guideline should be the descriptions used in the CMO Report, with added targeted information specific to the personal and mobility needs of the sufferer, needed by the decision makers/adjudication officers (see attached).

The DWP needs to accept Consultant/GP letters, and, as discussed in our meeting, to adopt the use of a functionality scale, such as the Karnofsky scale to show the level of disability of the claimants.

The guideline also fails to adequately describe the fluctuating nature of this illness, which makes the filling in, and assessment of, the benefits claim forms so difficult. Nor does the guideline deal with relapses, which may mean that a person can go from mild/moderate/severe to severely/very severely affected for months/years.

PHYSICAL NATURE OF ME

• Although we are pleased that the guideline states that the condition is "physical", therefore entitling people with ME to high care and mobility, it fails to mention that ME/CFS is classified by the World Health Organisation (ICD10: G93.3) as a neurological disease, and accepted as such by the Department of Health.

• The guideline grossly understates the seriousness, chronicity and progressive nature of this organic condition, especially for the severely affected, which make up 25% of the ME/CFS population (approx. 60,000). This will lead to decision makers/adjudication officers having difficulty making correct assessments to entitlement. Previous studies found that substantial improvement is uncommon (documented as less than 6%), and full recovery is rare. There is also no acknowledgement that for some the condition can be fatal.

MANAGEMENT AND TREATMENT

The guideline fails to acknowledge there is no cure for ME/CFS, nor a management/treatment suitable for all.

The guideline recommends/describes the blanket use of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) as the treatments of first choice for ME/CFS when:-

• The positive effects of Graded Exercise Therapy are overstated – there is a great deal of clinical and patient evidence (patient surveys on over 3000 patients) showing GET to be harmful/unhelpful in a high proportion of patients who tried this therapy, especially those who are severely affected. There is also much bio-medical research showing that the bodies of people with ME/CFS react differently/adversely to exercise, making GET potentially harmful/dangerous.

• The research evidence base for GET in mildly and mildly/moderately affected ambulant patients is small and unreliable, based on flawed criteria, and it is non-existent for the severely affected and children/young people with ME/CFS, the only evidence available is patient evidence, showing that GET is unhelpful/harmful.

• There is no evidence that GET "is helpful in the majority of adult ambulant patients" nor that CBT "is helpful in the majority of adult and adolescent ambulant patients."

• The wording relating to the Cognitive Behavioural Therapy section is offensive in that it implies that abnormal illness beliefs are a maintaining/causative factor, and that patients are not really ill.

• ME/CFS is not cured by CBT, and many patient surveys show that CBT, especially if used alongside GET, can be potentially harmful to those who have neurological ME. Even the MRC neuro-ethics committee has expressed concern over the use of CBT. For those who do find CBT helpful, there is limited and conflicting research evidence over long term benefits with many showing it is only effective for a short time.

The moderately Affected ME/CFS sufferer

Many of the moderately affected are likely to have impaired ability to maintain hygiene and nutrition and are likely to need some help with personal care and food preparation. Also many moderately affected patients would have a great deal of difficulty consistently being able to walk 100m, especially without an increase in symptoms/setback, and some people may have severe limitations in walking this distance without rest or aids.

The Severely Affected ME/CFS Sufferer

• We feel that the language used in the guideline to describe ME/CFS does not adequately portray just how seriously ill and disabled those with severe ME/CFS are. The decision makers/adjudication officers therefore have not been provided with a true description of the level of disability experienced by these patients, nor their multiple and complex personal care and mobility needs.

• Severely affected ME/CFS sufferers (people who are house/bed-bound and/or tube/PEG fed) have to rely on carers for all their needs. They require disability aids such as wheelchairs, stair lifts, hoists and similar equipment, often specially adapted, in order to maintain the basic needs of their daily lives.

• Severely affected ME/CFS sufferers are severely restricted in their ability to walk. They may need to be supported to walk even a few steps, if able, to the bathroom, or use a wheelchair, or they may use a commode/incontinence pads. If they leave the house they would be unable to do so without a wheelchair, and would usually require assistance.

• The severely affected need help with their personal needs eg. washing, toileting, food preparation/feeding, drinks, housework and medication. They will be unable to make/change their beds or do washing, which may often be necessary due to incontinence or menstruation, often at night.

• The severely affected will require care 24/7. With the chronic pain, frequent micturition/nocturia and sleep dysfunction – often sleep reversal - care during the night is standard/routine and is often extensive/prolonged, meaning the carer gets very disrupted, little, or no sleep.

• The severely affected will usually have significant cognitive impairment, and this impacts on all aspects of their lives, and reinforces their need for 24/7 care.

The above points highlight some of the short-comings of the guidelines, which rely heavily on the psychological approach to this illness (especially in the areas of management/treatment, and include erroneous statements such as a high prevalence of psychiatric co-morbidity, when research shows that it is only present in about a third of patients, which is similar to that found in other chronic organic conditions). This is potentially very bad news for patients claiming DLA, and for DWP staff whose wish is to make the correct allocation first time, and will have difficulty if using this guideline. This concern is heightened if NICE adopts a similarly intransigent attitude in making changes to their draft guidelines, which have also been unanimously rejected by ME organisations.

We - an alliance of National ME Organisations and Medical Professionals involved in the consultation process with the DWP - require that the DWP look again at the sections commented upon and instigate an essential rewrite of the guideline, so that ME/CFS sufferers receive the correct allocation of benefits they are entitled to.

BRAME – The 25% M.E. Group –The M.E. Association – Action For M.E. – The Young M.E. Sufferers Trust – Dr Terry Mitchell – Dr Nigel Speight – Prof Basant Puri

 

Severity Scale Attachment

A paragraph needs to go in before the severity descriptions, stating:

"ME/CFS is a very complex and debilitating illness. The symptoms and illness fluctuate, day by day and often hour by hour. There is a prevalence of relapses, and sufferers often move between levels of severity, sometimes for long periods of time, whilst others can remain severely affected for years/decades."

Mildly Affected

The person would normally be able to wash, dress, bathe, use the toilet and get up and down stairs without difficulty. The ability to plan a meal is unlikely to be impaired and the tasks involved in preparing and cooking food are unlikely to be restricted for the majority of the time. The ability to walk long distances may be reduced, but the person is likely to be able to walk short distances on an unrestricted basis most of the time. Their judgement, thought processes and means of communicating, are usually not affected to the extent that they would be unable to find their way around in familiar and unfamiliar places. Whilst some may be able to continue with some work/education, they are likely to have stopped all leisure and social pursuits, often needing to take days off. Most will use the weekend to rest in order to cope with the week.

Moderately Affected

Those with a moderate level of disability will have reduced mobility and are restricted in all activities of daily living. They would be expected to be able to manage some personal care/hygiene and preparation of food/drink without help from another for some, or most, of the time. Tasks will often/usually take longer than normal, and be fragmented throughout the day/week, they will be followed by a period of rest. Levels of fatigue and symptom severity may vary during the day, or from day to day, this will also depend on whether they are classed as mild/moderate or moderate/severe. They will experience some degree of cognitive dysfunction, and for some this could be significant. They have usually stopped work/education and require rest periods, often sleeping in the afternoon for one or two hours. Sleep quality at night is generally poor and disturbed. The ability to walk more than a hundred metres consistently is likely to be restricted in moderate cases.

Severely Affected

Those with a severe/very severe level of disability will only be able at most to carry out minimal daily tasks eg. face washing and cleaning teeth, and will need help with all personal care and preparation of food/drinks. They will spend most of the day house/bedbound or otherwise immobile. They will be wheelchair dependent due to severe restriction in their ability to walk, there may be clinically evident muscle wasting. They may need aids such as a hoist and stair lift. There is a requirement for supervision at home and out of doors, due to the significant impairment of both physical and cognitive functioning. Severe sufferers require 24 hour care, particularly due to the sufferers’ significantly disturbed sleep pattern. They require general care both day and night; preparing meals/drinks, tube/PEG feeding, medication and toileting (due to frequent micturition, nocturia, menstruation). Symptom control is difficult as ME/CFS sufferers often have new sensitivities to medications. They are usually unable to tolerate noise and are extremely sensitive to light. They are also sensitive to touch and chemicals/smells.

Many severe sufferers of ME/CFS may be much more disabled and dependent than that described above, many needing to be turned.

Many sufferers, of all severity levels, experience pain, often severe, often unrelenting, and not always alleviated by analgesics. Some sufferers also have other intrusive symptoms eg. blackouts, paraesthesiae, stroke-like symptoms etc.