Journal of IiME Volume 8 Issue 1 All of these ideas and events belie the crass misinformation about the disease which has been allowed to be propagated. IiME events all show patients and their families in a positive light – people who just wish to get better. The success in fundraising lies in active support from passionate volunteer fundraisers with the visionary Let’s Do it for ME team spearheading this change and leading the field. Yet even with all of the magnificent efforts of patients, carers, families and friends it is still a huge task to compete with the reserves of organisations such as the MRC – which ought to be accountable to patients but which has failed to develop any sensible or scientific approach to research into ME, until forced to do so. So just one slice of luck, a fortuitous coincidence or a benevolent act may be the difference between slow and rapid progress. As our poster states, One Event Can Change Everything. One such event has seen the charity receiving a £25,000 matched donation and later a further pledge of £200 000 in memory of the late Roger Heindry who sadly passed away in March 2013. This has enabled the charity to make a huge commitment to fund the rituximab clinical trial. So just one slice of luck, a fortuitous coincidence or a benevolent act may be the difference between slow and rapid progress. Social media has opened up new avenues of participation and publicity. It helps improve education – and also awareness. It also allows us to become aware of those who are no longer with us due to this awful disease. The loss of Robert Doyle 30, in July 2013 was a sad moment for many internet users as Rob was a well known and active member of the ME forum community. There are too many cases like this. The abuse of ME patients, based on ignorance and vested interests, extends beyond the UK – such has been the ability of some to fabricate and spin misinformation about ME. We continue to try to help where possible . Invest in ME have invited those in Denmark responsible for the treatment of Karina Hansen to the conference events and have written to the Danish health minister. We are also supporting other cases, in UK and Germany. In order to emphasise these situations and continue our commitment to help severely affected people with ME, we have invited Dr Nigel Speight to present our pre-conference dinner speech. Dr May 2014 Speight is a paediatrician who has been involved in helping many severely ill young people in the UK and abroad. Millions of patients are suffering around the world and the ratio of money being spent on this disease to the economic and societal losses it causes is at odds with any scientific, economic or moral viewpoint. It is organisations such as the MRC and the NIH in the USA that need to take most of the blame for this. It is the attitudes of people in these organisations that have been the problem. We actually agree with the remarks attributed to Professor Stephen Holgate of the MRC last year when he stated that we are bathing in a sea of ignorance regarding ME. It is rather disingenuous, though, of those who have been involved in controlling funding for ME research and have been aware of the lack of results from the psychosocial approach to ME to talk of ignorance. Organisations such as the MRC and the NIH have been filling the bath of research for ME patients for all these years and patients have been drowning in the effects of ignorance rather than bathing. How else can one explain the lack of funding for biomedical research especially into causes of ME? Experienced researchers such as Professors Ron Davis and Ian Lipkin are willing to study the disease but cannot get NIH funding. Surely the often-used excuse of lack of good quality research applications does not apply here. It is obvious that there has been, and still is something profoundly wrong with the peer reviewing system within these organisations regarding research applications from those who focus on biomedical into ME - something IiME has mentioned frequently over the years. It is vital that “We have all been frustrated over the years by the attitude of the MRC to CFS/ME.” these organisations address this as a matter of urgency. Perhaps it requires governmental select committee scrutiny to change things. The policies of these organisations seem to affect other countries also - and so we have situations like that of Karina Hansen, where blind ignorance of the effects of ME and a lack of proper research may endanger patients' lives. Professor Holgate himself has been head of the CFS/ME Programme at the MRC for many years and was also a member of recently demised CFS Research Foundation’s research committee. In a newsletter produced many years ago by the CFS Invest in ME (Charity Nr. 1114035) www.investinme.org Page 5 of 52
6 Publizr Home