Trev to Kennedy

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Hi

Trev to Kennedy

I have recently sent the following to Jane Kennedy MP

Dear Ms Kennedy

Research into ME - Reply to Esme Wainwright Your ref PO00000075577

My name is Trevor Wainwright, parent of a 23 year old ME Sufferer who has

suffered from the illness for the past 13 years. My mother is Esme

Wainwright of 124 Lincoln Street Wakefield.

I refer to your reply to her, via Creagh MP, above ref, dated 13 March

2006, you state:

The Government firmly believes in the need for research into causes of the

condition. My question is: If this is so, why is not money spent on these

causes in addition to services, I have always believed that to treat any

illness, it is important that thee cause be found, the illness not treated

with some pie in the sky theory, my next statement should back this up.

You stage in your last paragraph that both MS and Diabetes have established

treatments and are successfully managed without complete knowledge of their

causes. This cuts no ice with me with regards to comparing it with ME as you

will see from the remainder of my letter it is a pretty poor comparison, I

would have expected better from the Department of Health.

May I point out that people are still dying through MS, so it is obvious

more need to be done there with regards to knowledge of the cause. With

regards to Diabetes, it is a matter of finding a way to do the work that the

pancreas used to do, thus managing the illness, which although is being done

and allowing sufferers to live as near normal lives as possible, yet it is

far from a cure in which the pancreas is reactivated.

I also wish to state that both MS and Diabetes are defines as definite

illnesses, whereas ME is still lumped with CFS and other fatigable

illnesses, thus people may think that what works for one fatigable illness

may work for them all, when in fact this is not true. One symptom of ME is

post exertional malaise, not found in other fatigable illnesses. This alone

proves to me that ME should be treated as a separate illness in the same way

different cancers are treated.

There are many illnesses of which fatigue is a common factor each with a

separate cause, but none with the characteristic post exertional malaise as

ME has, and as such needs to be defined as an illness in its own right. I

would hope that one day the Government will see sense and look at ME this

way.

Trev