May 2004

Dear ______________________, MP

ESSENTIAL SERVICES FOR SEVERELY AFFECTED ME SUFFERERS 

As one of your constituents, and as a severely affected sufferer of the devastating neurological condition, (Myalgic Encephalomyelitis) ME, I write to draw your attention to my own plight (and probably one which affects many others sufferers within your own constituency) highlighted in the enclosed material produced by a unique support group (namely, the 25% ME Group) for severely affected ME sufferers, to which I belong. 

I am sure, you will be aware of this condition from recent and past media coverage and the ongoing problems and debates which still plague this much misunderstood and very serious illness which affects more than 200,000 people within the UK of which an estimated 50,000 are severely affected by this devastating condition, often resulting in profound disability which can last for decades - as opposed to “a few years” - as often misreported within the public arena. 

The enclosed information and, in particular, the enclosed Report Analysis, contains some extremely hard-hitting facts based on a recent study conducted by the above named support group on behalf of those severely affected by this condition. This document highlights many areas of seriously inadequate health and social care in addition to lack of adequate practical and financial assistance often resulting in a major deterioration in the sufferer’s condition. This severe lack of services is emphasised within every area covered by said Report including the section concerning State Benefits (particularly expressed in the statistics relating to those who have to pursue the lengthy and extremely stressful and exhausting appeals procedure in order to gain the basic disability benefit [Disabled Living Allowance] to which they are justly entitled. 

The findings within other areas covered by the Report, do not fair any better. Indeed, they show a severe shortfall in service provisions within all areas which have a very negative impact on the sufferer’s life on a daily basis; these include community care (61% receiving an inadequate community care package following assessment), severe lack of homecare support provisions, for example, although the requirement for all types of disability equipment was shown to be extremely high, almost half of those in the study had not even received a basic occupational therapy assessment.    

Lack of provisions within primary healthcare services was also shown to be extremely high. Although the majority (including myself) affected by this condition find it impossible to travel to their GP’s surgery, or local hospital for necessary treatments and investigations, there are no appropriate domiciliary services in place to remedy this; indeed even a routine GP home visit is almost impossible to attain!  

As my parliamentary representative, I would ask you to take the time to read the enclosed material outlining my needs as a sufferer more fully. I’m sure you will agree that more political campaigning is required to help address these areas of shortfall.  

I feel strongly that, instead of more funds being ploughed into “treatments” such as Graded Exercise Therapy, or, Cognitive Behaviour Therapy - shown to be the most unhelpful and harmful forms of “treatment” (please refer to page 8 of Report) currently offered to ME sufferers- appropriate funding should be made available for more in-depth studies to be carried out, not only in terms of hopefully achieving adequate healthcare service provisions for sufferers, but also in areas of biological research and adequate training for healthcare professionals in order to investigate the causes of this devastating illness and hopefully work towards a future cure for our own generation and future generations to come. 

Yours sincerely