Who To Trust?

When you have a chronic condition that typically starts with confusion, misdiagnosis, conflicting information and skepticism about whether you’re really sick, it can become hard to know who to trust.

• Doctors have let you down.
• Research seems more based on money and politics than on sound science.
• Internet claims of “cures” abound yet most just cost a lot of money and offer no cure at all….
• And if they do, great, but then your doc had the diagnosis of ME totally wrong ……

Southampton ME conference – February 12, 2008

An impressive list of key speakers have been announced for the first of this year’s biomedical and bioresearch conferences on ME/CFS which wlll take place at Southampton General Hospital on February 12. It is being organised by Hampshire Solutions – an alliance for promoting research into ME/CFS and fibromyalgia.The conference will be co-chaired by Stephen Holgate, professor of clinical pharmacology at Southampton University, and David Peters, first professor of integrated health care at Westminster University.

• Speakers include:
  Dr Martin Pall, professor of biochemistry – basic medical science at Washington State University (Converging mechanisms in the pathogenesis of ME/CFS and related conditions)
• Dr Jonathan Kerr, senior lecturer, St George’s Hospital, London (New insights into ME – gene expression)
• Dr Russell Lane, consultant neurologist, Charing Cross Hospital, London (Peripheral components of ME – mitochondrial malfunction)
• Dr Byron Hyde, founder of the Nightingale Foundation, Canada (an understanding of ME/CFS through 20 years of clinical experience)
• Dr Estabiliz Olano-Martin, Bilbao, Spain (Genetic profiles in aggressive forms of ME and Fibromyalgia)
• Malcolm Hooper, professor of medicinal chemistry, Sunderland University (multiple chemical sensitivity)
• Dr Abhijit Chaudhuri, consultant neurologist at Queen’s Hospital, Romford, Essex/Dr Federico Roncaroli (a view of the neuropathology of ME/CFS)
• Hugh Perry, professor of experimental neuropathy, Southampton University (Systemic Inflammation of the brain).

For booking contact Fiona at …

SIMON WESSELY AND THE ONE AND ONLY SOLUTION

There is only one solution to NICE and its so called ME guidelines, or to CBT and GET for ME. Well done GBCOne for showing us the right way forward…………….

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The elephant in the room by Dr Neil Abbot

The ‘elephant in the room’ — ever-present but rarely alluded to in the media or the mainstream scientific literature — concerns the overarching influence of the psychosocial model of the illness, which emphasises “beliefs, coping styles, and behaviours” (summarised in the Chief Medical Officer’s report of 2002). It colours the perception of the illness across the board — from official reports such as the 2007 NICE Guideline, to the policy of government agencies such as the Department of Work and Pensions and NHS Plus.

But it also impacts on research. In most illnesses, research on psychosocial aspects is an adjunct to the contemporaneous biomedical research that spearheads the drive towards a cure. Yet, in ME/CFS, psychosocial investigation seems to have hoovered up attention and funding at the expense of hard-core biomedical investigation.

Take the Medical Research Council for example: the vast bulk of its £3 million ME/CFS grant-spend since 2002 has gone towards research into psychological management strategies, while around 30 other applications, some from established biomedical research groups with a track record in the field, have been rejected — facts we only know because ….

Invest in ME BOOK PROJECT — “LOST VOICES”

The name ‘Lost Voices’ refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME – as an ‘aberrant belief’ rather than a devastating physical illness – has meant that often others are incapable of actually hearing and seeing what is being said and shown – our voices drop into a void. ‘Lost Voices’ and how you can participate…

A doc who cares about ME patients for once ….

From the Howick and Pakuranga Times, New Zealand, 10 January 2008:
FOR once it is the doctor and not her patients feeling overwhelmed.

That was the reaction Dr Rosamund Vallings, who was appointed a Member of the New Zealand Order of Merit (MNZM) for services to people with chronic fatigue syndrome (CFS). She is New Zealand’s leading specialist on chronic fatigue syndrome; an interest peaked back in the early 1960s while working in her native-England.

“I was working in a hospital in London and we saw it quite a bit among the staff at another nearby hospital – who became chronically ill.”

“We’re not talking about being a little tired. This condition, as the name suggests, is chronic and can be life altering to those with it and ongoing for years.”

She has been medical advisor to the Associated New Zealand Myalgic Encephalopathy Society (ANZMES) since 1980 and …

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