IiME's Response to Minister's Refusal to Participate in Webinar with ME Patients



Dear Mr Hunt,

We wrote to you recently inviting you, as secretary of state for health, to participate in a webinar with ME patients and the carers, thereby allowing you to understand some of the problems which ME patients have been, and are facing and giving you some insight into the negligence and apathy within the healthcare system which successive ministers of health and the Department of Health have overseen.

Your department has rejected this request stating in the reply which represents your decision -

“Regrettably, due to diary commitments, the Minister is unable to accept your kind invitations”

There was no date set for the webinar in our invitation to you. We specified clearly that we would accommodate your timetable –

“We would therefore like to ask you to participate in a webinar about ME– organised by Invest in ME and taking place in Westminster at a date that is convenient to you.”

The reply indicates that, in the remaining time which your coalition government may have in office, you have no time available for a 2 hour webinar in Westminster to hear from patients suffering from a disease that is twice as prevalent as MS or HIV/AIDS, from whom blood donations are banned and for whom there is little in the way of treatments, services or proper research.

We find it difficult to believe that there are no free diary commitments during the next two years?

May we ask why you have no time for people with ME when even the Prime Minister has requested that the Director of the National Commissioning Board for Long Term Conditions meet with the charity? We wonder if you have even viewed this request or whether it has been handled entirely by the same civil servants who prevent direct access from patient to minister?

ME patients are well used to the abject disdain for, and contempt in which the Department of Health has traditionally held them, their carers and those very few ME charities who really try to make progress.

Yet you yourself have stated before that you feel IT is a way of helping the health service achieve benefits and cost savings. We have invited you to use technology to allow patients and their carers to provide you with a real view into the lives of people with ME with the hope that we can all find ways to improve the current situation. We have invited you to participate in an event which is organised by a charity that wishes to make progress in the way that ME is treated.

You have also declined our invitation to the 8th International ME Conference on 31st May, a conference which brings many researchers, clinicians, patients and carers and patient groups from around the world. It is a pity because you may have learned something from participating in this event.

We had hopes that the latest minister for health would bring forward a new direction and approach to treating ME and avoid this disease being misrepresented and misinterpreted. Despite UK governments having always officially accepted as a neurological illness ME patients and their families still have to contend with ignorance, disbelief and denigration by NHS, media and vested interests who seem to influence everything.

So we once again ask that you consider making time available for such an event and therefore help all patients with ME to feel they have a voice.

In the words of Hubert Humphrey -

"The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled."

We look forward to your response.


Yours Sincerely,

The chairman and trustees of Invest in ME



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