Correspondence with Dr Alastair Miller, speaker, RSM CFS Conference

Jill Pigott, Worcestershire ME Group, has published some comment and correspondence with Dr Alastair Miller who will be speaking on “What drugs can I use?” at the RSM CFS Conference on 28 April. 

It was Dr Miller who had expected that people with ME and their carers would be involved in the conference (see ME Association statement on RSM conference).

Dr Miller says that he hopes that proceedings of the RSM’s Conference will be published.  I have been advised by the RSM that “No places are being granted to ME / CFS charities or patient organisations, and the meeting is not open to the Press” and that “There are no plans to make a transcript of the meeting available to the public”.  Action for ME says “[AfME] will report the proceedings of the conference to its members”.

The RSM is said to have climbed down on its decision not to grant permission to the ME Association to have a stand at this conference.  The MEA has issued no amendment to its earlier statement on the issue of its requesting a stand; until a public statement of confirmation has been issued by the MEA then I cannot confirm this development.

Permission to Repost

From Jill Pigott

Dr Alastair Miller, who will be speaking on “What drugs can I use?” at the RSM Conference, had expected pwme [people with ME] and carers of pwme to be involved. I wrote to Alastair Miller, Consultant Physician, Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital. Until May 2005 he was the Specialist in Infectious Diseases (with an interest in ME) at Worcestershire Acute Hospitals NHS trust.

I am forwarding a message received from Alastair Miller – he said “delighted for it to be disseminated as widely as you like. Alastair Miller told me that at the time when he wrote his ‘original’ message, he “had not appreciated it was for health professionals only”. So he had accepted an invitation to speak at this conference, expecting pwme to be involved. (He also gave permission for this original to be reposted.)

Alastair Miller’s ‘original’ final paragraph:

I am thoroughly looking forward to participating and was delighted to be invited. I would urge folk from the ME/CFS “activist” / patient / carer community to attend with an open mind and participate in what I am sure will be an excellent meeting that will enhance our understanding of this perplexing condition and help us all to work together and help our numerous patients recover from this devastating illness. Best wishes – I hope to see you there.

Dr Alastair Miller’s amended message:

Thanks Jill

You will be well aware of my views (as I have expressed them many times when I was in Worcestershire) that the ongoing debate about whether CFS/ME is primarily a condition of disordered psychology or disordered physiology is a sterile one and an unwelcome distraction from what should be our core business of researching, diagnosing and caring for patients with CFS/ME. As someone who has been involved in this area for over 20 years I do not hold strong views on either side of the debate and indeed I do not even think there should be a debate.

There is no doubt in real life clinical practice that there are many patients who have serious symptoms of CFS/ME with absolutely no suggestion of any psychopathology; there are also large numbers of patients who have severe psychological problems and there are many in whom psychological and physical problems are inextricably intertwined. In years to come we may develop more sensitive tools to classify these different categories and have different therapeutic approaches.

The reality right now is that we do not have any evidenced based approaches other than CBT and GET to help our patients and these techniques are helpful to many of our patients – not everyone and I do accept that in some cases they may worsen the situation but that is true of many conditions and many therapeutic interventions. Equally we know that CBT may help symptoms in many other situations – for example, it is of benefit in some patients with cancer and nobody would claim that cancer is a psychological condition.

Turning to the conference itself – I think it is excellent news that a distinguished body such as the Royal Society of Medicine (RSM) should put on such a conference. Clearly there are a number of speakers from a mental health background but equally there are speakers and chairs from general practice, hospital medicine, rehabilitation and from patient groups so I would not regard the coverage as being “unbalanced” and I think it would be a great shame if patients’ views went unheard at the conference. I am thoroughly looking forward to participating and was delighted to be invited.

I am sure that many differing views will be expressed in a frank and open way and I assume that the proceedings will be published. I hope folk from the ME/CFS patient/carer/”activist” community will view this conference with an open mind and a forum where genuine debate about this perplexing condition will take place so that we can all work together to overcome the effects of this devastating illness.
Best wishes

Alastair
Dr ALASTAIR MILLER MA FRCP DTM&H
Consultant Physician
Tropical & Infectious Disease Unit
Royal Liverpool University Hospital

Dr Alastair Miller had received the 25% Group and Tymes Trust statements before he sent his message.

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