25% ME Group response to DWP-V10 Guidance doc on ME/CFS

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0GUIDELINES.doc

25% ME Group response to

DWP-V10 Guidance doc on ME/CFS (UK)

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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 (

ICD 10: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

Chairman