25% ME Group response to DWP guideline

The 25% ME Group has issued a response to the DWP medical guideline for DLA decision makers
25% ME Group response to DWP guideline

Greg & Linda Crowhurst

July 20th 2007

The 25% Group does not consider the Final version 10 of the DWP document CFS/ME Guidance to be about ME, instead it concerns itself with psychiatrically-defined Chronic fatigue Syndrome; this is clearly obvious from the minimal list of symptoms and the recommended psychiatric management strategy. It is certainly not about severe ME.

As this document stands it does not represent a fair or accurate picture of the person suffering from ME as defined by WHO (ICD10:G93.3) and will steer the way to unhelpful and incorrect assessments.

It fails:

To mention that ME is classified by the World Health Organisation (ICD10:G93.3) as a neurological disease, and accepted as such by the Department of Health.

To state how serious, how chronic and how progressive ME is, especially for the severely affected.

To acknowledge there is presently, no cure for ME.

To acknowledge that Graded Exercise Therapy is harmful/unhelpful to a high proportion of ME sufferers.

To acknowledge that ME is not caused by abnormal illness beliefs.

To acknowledge that ME cannot be diagnosed without physical (neurological) signs.

To acknowledge that ME, the neurological condition, differs from the mental illness Chronic Fatigue in:

The epidemic characteristics
The known incubation period
The acute onset
The associated organ pathology, particularly cardiac.
Infrequent deaths with pathological central nervous system (CNS) changes.
Neurological signs in the acute and sometimes chronic phases.
The specific involvement of the autonomic nervous system.
The frequent subnormal patient temperature.
The fact that chronic fatigue is not an essential characteristic of the chronic phase of ME.

To acknowledge the numerous physiological and biochemical abnormalities found in ME.

To acknowledge that only a very small percentage of patients are likely to see full recovery or remission (according to US statistics provided by the Centre for Disease Control, only 4% of patients had full remission (not recovery) at 24 months.)

To acknowledge that recovery from severe ME is extremely rare, about 2%, which is statistically insignificant.

To acknowledge that many ME patients actually have more derangement of the brain, on a biochemical level, than Parkinson’s or Alzheimer’s patients.

To acknowledge that although there is no single diagnostic test there is an abundance of research which shows that ME is an organic illness which can have profound effects on many bodily systems.

To acknowledge that that ME is a life-long disability . Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and, sometimes ME is fatal.

To acknowledge that the “belief that exercise is damaging” is extremely valid for the severe ME suffer.

To acknowledge that the “Consensus Definition” used by the DWP, has attracted much international criticism for allowing disparate fatigue conditions, for example post-traumatic stress disorder, depression and conditions that improve with exercise to be diagnosed as ME.

To acknowledge that the incidence of ME is rising, no other disease surpasses the rate of increase.

To acknowledge that all auto-immune disorders have a female preponderance due to hormonal influences.

To acknowledge that Cognitive Behaviour therapy (CBT), used in the way described, is harmful/unhelpful to a high proportion of ME sufferers.

To provide a true description of the level of disability experienced by the severely affected.

To acknowledge that there are serious cardiac issues in ME.

To provide any description of the multiple and complex personal care and mobility needs of the severely affected.

To describe the way that the severely affected need help with washing, toileting, food preparation, feeding, drinks, housework and  medication.

To describe the way that the severely affected will be unable to make/change their beds or do washing.

To provide any description of how severely restricted the severely affected are in their ability to walk, even a few steps.

To acknowledge that the use of a wheelchair is due to physical dysfunction,not just a choice to save energy.

To acknowledge the severity of disability that people experience indoors, so that a wheelchair is an essential aid.

To acknowledge that the severely affected require care 24/7.

To acknowledge that the person with severe ME spends their day in great suffering.

To acknowledge that people are so physically impaired that they need physical facilitation, emotional support and enabling in order to survive on a daily basis. It is not just about “supervision”.

The document is irresponsible, ineffective and inaccurate. The DWP has failed to acknowledge the wide range of debilitating symptoms that a person with true ME will experience, they have ignored the fact that ME is a neurological disease and have continued to focus on the vague criteria of an undefined “fatigue” illness; which ME is not.

The 25% Group are extremely concerned that these Guidelines will lead to immense distress, and a deterioration of people’s health as they battle to get their benefits.

This document will potentially endanger lives, either because sufferers will be too ill to fight to obtain their benefits or they will be given an  unsatisfactory level of award, meaning that they will not be able to pay for the care that they so desperately need.

The DWP has consistently failed to take account of the appropriate, informed research into the physical basis of this illness.

The 25% Group considers this document to be shamefully still unfit for purpose.

In the response from the charities it was stated that, “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”.

It seems that the DWP has not taken on-board the many concerns that were outlined in this joint statement, as well as the individual submissions produced, including the one from ourselves.

We therefore feel that we cannot accept the guidelines as presented, as they will cause a great deal of hardship for ME sufferers in general, but especially the severely affected.

Simon Lawrence

25% ME Group
21 Church Street
KA10 6HT

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