Parliamentary Question: ME diagnosis in Brighton and Hove

January 21, 2011


Mike Weatherley, Conservative MP for Hove, tabled a question which asked the Secretary of State for Health how many people in the City of Brighton and Hove were diagnosed with myalgic encephalomyelitis in each year since 2007.

The question was answered on 20 January 2011 by Paul Burstow, the Minister for Care Services, who in a written answer replied:

This information is not collected centrally. However, the hon. Member may wish to contact Brighton and Hove Primary Care Trust directly for local information on the number of people diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis.

2 thoughts on “Parliamentary Question: ME diagnosis in Brighton and Hove”

  1. This has been a thorn in my side – well I have a whole bush at the moment!

    Why O Why is this data not recorded and published?

    Why does not the MEA petition? I expect you guys have actually.

    What can I do to get the NHS to publish real data on the number of patients diagnosed with ME or CFS or PVFS etc.?

    Why is this not done for all illnesses as a matter of course?

    How the heck can the NHS for example order flu-vaccine when they have no idea – only best guesses – of the amount they will need for those in the ‘at risk’ category?

    Which, by the way, now includes CFS – as an example of neurological disease – for those who were not aware.

    Very frustrating…

  2. I have decided – having reviewed what I could find – to throw my own efforts at this dilemma.

    It simply is beyond belief and with the power and responsibility now being shifted from PCT’s to GP Consortia I really can’t see anything improving.

    So – and with your permission Tony – if anyone has any comments or suggestions that might help me in this quest – me MP will be on board bless him – then perhaps you could email me?

    rjf.firestormm@yahoo.co.uk

    Even in Cornwall the PCT hasn’t a clue and referred me to the local GP surgery. My Professorial consultant depends on estimates and believes some 2,000 are diagnosed in this county alone.

    I just do not ‘get it’. Statistical collection and analysis was a key part of my former education and subsequent career so I have a little bit of knowledge in this area.

    I dare say there is legislation or patient protocol’s that affect the release of data – but that’s not good enough.

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