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Welcome to Invest in ME's December 2015 newsletter |
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Conference Events 2016 |
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It is amazing to realise that next year will see our eleventh international ME conference take place in London. It will also be our sixth biomedical research into ME Colloquium. For eleven years we have been facilitating the interacting, discussion and collaboration between patients, researchers and clinicians. For our 2016 conference events we welcome two speakers - one a frequent contributor and old friend - Professor Mady Hornig from Columbia University - and a new speaker at the IiME events, Professor Ron Davis from Stanford and an OMF scientific advisor. |
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Professor Davis does cutting edge, innovative, interdisciplinary research and technology development on cancer, immunology, genetics, infectious disease, novel drug development, and nanofabrication of diagnostic instrumentation. He was one of the first scientists to begin mapping and cloning DNA. Dr Hornig recently visited the research park in Norwich to give a presentation and continues her ground-breaking work on ME. |
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For the public conference we have a new venue with a fantastic room for refreshment breaks (below). We hope the move to the new venue - which will be all on one floor - will make it easier for all delegates to network and enjoy the conference day. |
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We have opportunities for sponsorship of the conference or selected offerings such as a table in the break-out area above. More details here - http://www.investinme.eu/IIMEC11.shtml#sponsors Follow all of the news of the conference build up using this link - http://www.investinme.eu/IIMEC11-news.shtml |
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The Big Give Challenge |
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We are delighted that we have nearly reached our second phase target of £5000 for this project. At the time of distribution of this newsletter there is still £339 that may be doubled to assist our intercalating medical student fund which aims to support medical students participating in the research funded by Invest in ME. We are really grateful to all our pledgers and online donors who have taken this opportunity to give change a chance. The page is open until 5pm on Monday 14th Dec https://secure.thebiggive.org.uk/donation/to/6239/24084 |
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IiME funded B cell study by UCL published |
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The results of the preliminary B cell research characterising B cells in ME patients that form a part of the IiME rituximab project were published in Journal of Experimental and Clinical Immunology. It has taken a lot of hard work getting this far and we are grateful to our supporters and the Hendrie Foundation who have made this important work performed by the experienced B cell experts at UCL possible. The original aim of replicating the Bradley et al paper (differences in B cell subset numbers) was not achieved but the team looked further and observed an increase in frequency (p<0.01) and expression (MFI; p=0.03) of CD24 on total B-cells, confined to IgD+ subsets. The work is being expanded upon and continues. There is continuing close collaboration with Professor Mella and Dr Fluge in Norway as they continue with their Phase III trial using rituximab. The paper can be found here http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/abstract |
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Public Services Inquiry |
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Services to People with Neurological Conditions: Progress Review Inquiry |
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Invest in ME submitted evidence to “the Services to people with neurological conditions: progress review inquiry”. The response was accepted and will be online in the coming weeks. |
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The F Words |
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- False, Flawed, Farcical, Frightened |
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A recent newspaper headline calling for doctors to apologise for their treatment of ME is, we feel, a distraction. A cathartic soundbite it may be - but in reality it is a false target and achieves nothing, and continues the polarisation between doctors and patients and misses one of the real causes of the problems with ME. Doctors, in general, often get blamed for the poor treatment/service that they give to ME patients but unless they are specialising in ME then all they often have time to do is follow published guidelines or read what their medical associations tell them. Those who specialise in ME may be overly influenced by the false establishment view of ME - though they have no excuse for being ignorant of the real basis for ME as Invest in ME has, for example, organised ten annual international ME conferences that present the latest thinking in biomedical research into this disease and have always had patients, clinicians and researchers interacting. Most doctors are as interested as patients in being able to help but there are a minority of influential doctors that seem to have undue say on policies and thereby put patients, especially children and their families at risk with their flawed psychosocial ideas about ME. Fortunately, an increasing number of doctors are becoming acquainted with IiME's attempts at building a research strategy of coordinated international biomedical research into ME, which itself increases education about ME. The MRC has been responsible for the research funding policies toward ME over the last 10-15 years and it is those responsible for ME within the MRC who have allowed the ignorance to be maintained due to the funding of flawed research. The false impression of progress attempted by so-called MRC "expert" panels and its offshoots may fool some yet little has actually changed for ME patients from this main funder of research. Without policy-based evidence making and the repeated rejection of valid biomedical research applications then it would not have been possible for doctors to have the wrong idea about ME. The false and flawed policies of the MRC need to be reviewed over the last decade or more. IiME has clearly shown what needs to be done - and our supporters are helping us do it. A starting point for atonement might well be for the MRC to demand the data from the PACE trial to be made available for independent review. Yet all one hears from those in the MRC responsible for ME - is silence. |
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Farcical |
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The PACE trial continues to stretch the limits of the term farcical - demonstrating the absence of any accountability from those who have been responsible for dispensing public funds for research into ME. New developments continue in the quest for the release of data from the PACE Trial - a project funded by the public - courtesy of the MRC. |
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Queen Mary, University of London (QMUL) appeals ICO decision to release PACE trial data On October 26th ICO ruled in favour of a complainant who had requested raw data from the PACE trial to be released by QMUL. On 26th November 2015 it became known that that QMUL has appealed against the ICO decision so the saga continues. The case is now between ICO and QMUL and it will take some time before we know the outcome of this process but one thing is sure that this is going to be watched very closely by many parties. WhatDoTheykNow: https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-64718 ICO Decision: https://ico.org.uk/media/action-weve-taken/decision-notices/2015/1560081/fs_50565190.pdf |
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Frightened |
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KCL refuses to release PACE trial data on cost effectiveness The farce behind the PACE trial looks to be dragging more and more organisations into a quagmire of doubts about integrity, motives and candour. It seems clear that there are many now appearing to be frightened at the possibility of the data from this trial being released for open and independent examination. James C. Coyne PhD (Professor of Health Psychology at University Medical Center, Groningen) requested data from the PACE Trial - as per Plos One policy of data sharing - to enable him to verify the substantive claims of the Crone et al paper “Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis” [1] Kings College London (KCL) refused the request and have given preposterous reasons - such as there is improper motive behind Professor Coyne’s request and that they would expect any replication of data to be carried out by a trained Health Economist [2]. The reasons given by KCL have been strongly criticised on social media by many scientists outside the usual ME research circles and even Retract Watch states the KCL letter makes their blood boil [3]. We await Plos One’s decision on the matter as KCL has clearly acted against Plos One’s publication policy of open data sharing. This is yet another refusal of the PACE trial authors to share data from a tax payer funded trial that cost £5 million. It is appalling and those involved in the PACE trial need to be forced to act in a responsible way and be accountable to the public and especially to ME patients and their families. IiME have called for the PACE Trial paper to be retracted - see here - and our accompanying letter to the editor of the Lancet has still not received a reply.
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Virology Blog Vincent Racaniello Ph.D., Professor of Microbiology & Immunology in the College of Physicians and Surgeons of Columbia University maintains a very popular and well known Virology Blog. He has now placed all of journalist David Tuller’s ME/CFS related articles (PACE trial) on one page http://www.virology.ws/mecfs/ |
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Galaxy Hot Chocolate Competition |
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GALAXY HOT CHOCOLATE FUND – Let’s Do It Again! Last year Invest in ME won £300 in this voting competition thanks to a week of concerted voting inspired by Anne Örtegren. This year we have entered again to have a chance of winning £300 toward our intercalating medical student project described above. One vote per email address and votes are counted weekly every Monday until 28th February 2016. https://www.galaxyhotchocolate.com/fund/profiles/invest-in-me Four of these will be awarded by their judges’ panel. There will also be a People’s Choice Award every week which will be awarded to the entry with the most votes in any given week. The winners are selected on Monday each week. As Russell Logan says on his great site ‘Shout About ME’, it doesn’t cost anything so it’s a great way to support our BIG Cause. |
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IiME Presenting at IFR EVENT |
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Invest in ME were invited recently to give a talk at a half day Social Media conference in Norwich organised by the Institute of Food Research. We were proud to be able to present all the positive and proactive actions and events that the LDIFME team have been able to initiate and promote in collaboration with the charity. |
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Just a reminder that our Christmas cards are still available - all helping raise awareness and funds for biomedical research into ME. |
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2015 has not been an easy year for many people with ME and their families. Yet the supporters of IiME have continued to show resilience and integrity in their actions as together we influence how ME is treated and researched. The task of overcoming years of neglect is not small. But gradually this disease is finally getting attention and correct research. We hope we can attract more funding for our work which, we feel, is leading to establishment of permanent change in research and treatment which will benefit all patients and their families. |
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Thanks to all of our supporters for the support and trust placed in the charity. Our thanks to the LDIFME team for the enormous work they have performed and the service to the ME community which they have achieved through their tireless efforts to raise awareness and funds via positive and innovative campaigns. Despite enormous difficulties we are making things happen. |
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We would like to wish all of our wonderful supporters a very happy Christmas and a New Year full of hope - and a huge thank you for all that you have to done to help us all to make progress. You continue to make a difference. Best Wishes All at IiME |
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Legal Information |
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Invest in ME |
UK Charity Nr. 1114035 |
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