DWP Guidance Document

This letter below is a summary of the main submission that we gave to the DWP Panel on the 17^th Oct. You can see more of the submissions produced on our website at: 

http://www.25megroup.org/Campaigning/DWP/dwp%20info.htm

 

We hope to see a new draft of this DWP ME/CFS Guidance document in the near future and we will continue to argue for changes, if necessary.  A few of us worked extremely hard on a complicated and controversial document and I would like to thank all those who have contributed.

Summary of the 25% ME Group’s Response to the DWP ME/CFS Guidance Document

The DWP would be well advised not to accept the document in its present format as it contains an inadequate description of the disease, exhibits a distinct lack of current knowledge as to possible reasons for causation, proposes no investigative procedures where routine screening has failed, promotes opinions not supported by research, and for which no proof exists, and also postulates two unproven psychological interventions (still at trial stage) where claims made for their efficacy are unsupported by research findings both in the UK and abroad, and are at variance with patients reports.

Of particular concern is the way in which this very complex disease, which affects every system in the body, is conceptually reduced to its principal symptom of overriding fatigue, and takes no account of neurological, immunological or endocrinological factors.

It leads the reader to believe that ME/CFS is in the main, a psychological disorder; no proof for this view exists, and the majority of patients utterly refute this idea.

Cognitive Behavioural Therapy and Graded Exercise are not accepted in the British Formulary for ME and therefore cannot be considered automatically to be within the legal framework for treatment. We would be concerned that anyone reading the document as it stands (ie. especially those within the medical profession) may be unwittingly influenced that ME/CFS may have a strong psychological component.

Another concern worthy of note is the statement that “those with the most severe condition will be admitted to hospital for treatment.”

No treatment or intervention for Myalgic Encephalomyelitis has been proven to be curative or even able to improve overall condition, neither in terms of drugs nor of psychology. It is worth noting that no drugs have been extensively trialled nor are any efficacious in all cases. 

Furthermore, many patients relapse in a hospital environment, possibly due to most hospitals’ inability to cater for patients with severe sensitivity to noise, light, chemicals etc.  One survey found that more people were made worse than better by admission to hospital so we feel that hospitalisation should not be portrayed as effective for severe M.E.

Please note that the CMO’s Report on ME/CFS does state that CBT and GET will not be mandatory. 

Please also note that a number of ambulant patients admitted to Psychiatric Hospitals for so-called “treatment” are now permanently wheelchair-bound, bed-bound and mute, or bed-bound and tube-fed. These patients are then returned to their relatives, with an inability to care for themselves. In that ME/CFS is not a mental health condition, and consequently patients should not be held under the Mental Health Act; consent from patients would have to be sought before involving them in any such intervention in accordance with NHS Guidelines.

Because of differing opinions as to the causes of ME and of CFS (indeed, researchers of many fields of study have found a bewildering array, ranging from a variety of enteroviruses, bacteria and other micro-organisms, to malfunctioning genes, immune system

abnormalities and neurological abnormalities as well as severe clinical depression and other clearly-defined diseases) we would like to suggest that a PCR or polymerase chain reaction test be mandatory in all cases of unexplained fatigue, as well as other tests of a more routine nature carried out by patients’ local micro-biology labs.

This would end the controversy surrounding these conditions and would reduce the incidence of inappropriate interventions and treatments carried out on patients. It would also eliminate the possibility of patients resorting to litigation where inappropriate treatments had made them worse. A greater proportion of patients would receive early diagnosis and correct treatment where available and would be able to return to normal life and work. (Appropriate treatments may include anti-virals, anti-retrovirals and antibiotics).

 The continuing argument as to whether ME/CFS is a physical illness or not, is one which is only perpetuated in some quarters. The reality is that the WHO classifies ME/CFS as a neurological condition (and has done since 1969) and, since this is therefore the stance accepted by the British Government, we feel it is extremely important that any guidance being prepared for medical practitioners, who may not understand the complexities of the illness or its origins, must receive accurate guidance through a document of this sort from the outset as it will affect the outcome of patients with this condition receiving the correct and appropriate State Benefits.

As a support group for those patients who are the most severely affected ME sufferers within the UK, we are glad to have been involved in this process and hope that our suggested amendments have been helpful and positive in this very vital process. We hope this leads to better advice and outcomes both for practitioners and patients.

 

Yours faithfully

Simon Lawrence

Chairperson

10^th October 2005

It is because of BRAME working hard behind the scenes, that we are, along with other organisations, able to contribute to the new draft document to make sure it is changed at this stage. So thanks to BRAME