News from other CFS/ME organisations and elsewhere
“A disease such as ME presents many challenges to a patient and to a family.
It can provide challenges also to schools when a child or young person is unable to continue full time education.
Isolation is one of the most insidious consequences of ME – the full effects often not realised until much later.
We want to help change that.
In Norway, a small white robot has become a stand-in in the classroom for children and youths suffering from ME.
We want this possibility to be offered to young people affected by ME throughout the UK – and, at the same time, spread awareness of this disease throughout the education system.”
The following is an updated version of an article written for the autumn 2017 issue of Breakthrough magazine. As you will see, recent developments mean that the story now has a potentially happier ending.
“The National Institute for Health and Care Excellence (NICE) announced on 20th September 2017 that it is planning a full update of its guideline on the diagnosis and management of CFS/ME. ME Research UK is delighted with this news because we (and many other ME organisations) have real concerns about the usefulness of the guideline in its current form.
NICE first published Clinical Guideline CG53 on the diagnosis and management of CFS/ME in August 2007, prompting an energetic critical response from patient support groups and ME/CFS charities, including ME Research UK. NICE’s clinical guidelines are important because they influence national care and government policy in the UK. Ten years later, the controversy shows no signs of fading, and those same groups were in action once again when NICE recently considered updating the guideline to reflect new evidence.”
The UK ME/CFS Biobank has sent out an email update on its work. They have just received a large grant from the US to extend their research – there is an announcement on the ME Association website as well ( http://www.meassociation.org.uk/2017/10/uk-mecfs-biobank-team-receives-largest-ever-grant-to-continue-biomedical-research-project-30-september-2017/) This is probably the biggest single grant for biomedical research in the UK. This is their announcement:
$2.1M INVESTMENT IS UK’S ‘BIGGEST EVER INVESTMENT INTO PHYSICAL CAUSES OF ME/CFS ’
The CureME team at The London School of Hygiene & Tropical Medicine is delighted to announce the award of $2.1m (£1.57m) of grant funding from the United States National Institutes of Health.
The grant will fund a longitudinal study that will measure changes in the immune system and genetic profile of individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
The new award is a renewal of an initial project, which began in 2013, also made possible by funding from the NIH. The new funding will enable the current project, which is searching for biomarkers (measurable biological characteristics) of the disease, to be extended until 2021.
Dr Luis Nacul, who leads the CureME team at LSHTM and is also responsible for overseeing the UK ME/CFS Biobank, which has been built and maintained by charity support and the funding from America, welcomed the new funding and added:
“The new grant from the NIH (US) will enable, for the first time, comprehensive prospective assessments of cases of ME/CFS at regular intervals. This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of this complex disease and the identification of much-needed biomarkers for the diagnosis of different sub-groups of patients. We very much look forward to continuing our partnership with the patient community, which has been key to the success of our research so far.”
The grant will enable the collection and storage of blood samples and clinical data from a greater number of people with ME/CFS, to add to the existing resources donated by participants with ME/CFS and multiple sclerosis, as well as healthy controls.
The Biobank is the only resource in the world that includes samples from those most severely-affected – the house- or bed-bound – and is the premier resource outside of the United States for the study of the disease. All participants are examined by a clinician, and must conform to the Biobank’s rigorous protocols before donating tissue samples and data.
The UK charity, The ME Association, has been a long-time supporter of the Biobank and provides funding to support its development. Dr Charles Shepherd, the charity’s medical adviser, and chair of the Biobank steering committee, said:
“This is the biggest ever investment into the physical causes of ME and represents a significant and vital sum of money that will help scientists unravel the mysteries of this devastating illness.
The fact that the NIH has decided to provide another major grant is an important endorsement of the ME/CFS Biobank, and we would like to congratulate all the staff who have been involved in setting up and developing what has become a vital new part of the biomedical research infrastructure here in the UK.
We hope that other research groups will now start to make use of this unique resource to achieve desperately-needed breakthroughs into the cause and treatment of ME/CFS.”
The CureME team would like to thank the many participants who have contributed to the project thus far.
The research is supported by the National Institute of Allergy and Infectious Diseases (NIAID) of the National Institutes of Health (NIH) under Award Number R01AI103629. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Making the most of GP appointments – illness summary
Each month we’ll be giving you a different tip on how to make the most of your GP appointment, whether you’re trying to get a diagnosis or already have one. Our tip for September comes from Gordon Smith, who finds it helpful to present physicians with a two page summary that he’s written covering a very brief medical history, the symptoms he’s experienced, physical and mental restrictions the M.E. places on him, and his ambitions.
Gordon told us: “When I see a doctor or consultant for the first time, I provide the summary straight away. I then sit quietly while they read my summary. Presenting my summary to the doctor/consultant is always beneficial – the new doctors and consultants I have seen for the first time have always taken a few minutes to read my summary before they say or do anything. Don’t miss anything out with regard to the summary. However, keep the summary as short as you can and factual.”
Have you found this tip helpful? Do you have tips on making the most of your GP appointment that you’d like to share with us?Let us know. <mailto:%email@example.com?subject=GP%20Appointment%20Tips>
Researchers from the UK, US and beyond at CMRC 2017
“Any physician will tell you that you learn a lot more from talking to patients than you do from reading any kind of text book.”
These are the words of leading US M.E. researcher Dr Avindra Nath, just one of the many scientists who spoke at this year’s fourth annual UK CFS/M.E. Research Collaborative science conference.The event also featured talks by Prof Jose Montoya, Prof Julia Newton and Phil Murray of the Patient Advisory Group among several others.
Action for M.E. recorded many of the presentations and you can now watch these on our YouTube channel. <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1K-1/c.aspx> Please note that presentations containing unpublished research data were not recorded.
Senior social workers learn about impact of M.E.
The impact of M.E. was brought to the attention of senior social workers on Tuesday, September 12 when Action for M.E.’s report into families facing false accusations <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1L-1/c.aspx> is shared with them at a conference in Birmingham. The event comes after Action for M.E. and other charities met with the Chief Social Worker for Children and Families, Isabelle Trowler, earlier this year.
Considering the impact of Brexit on people with M.E.
Action for M.E. has helped ensure the needs of people with M.E. are taken into account for a parliamentary meeting about the impact of Brexit on disabled people by submitting a briefing. You can find out more about the meeting and how it concerns people with M.E. here. <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1M-1/c.aspx>
Updated information for teachers and school staff
If you’re a teacher or member of staff working in a school setting, it’s particularly important that you understand how destructive M.E. can be. Many families tell us that their children’s school doesn’t understand M.E. and that some staff doubt the illness even exists. This can have a horrible impact on a child’s health and self-esteem, causing unnecessary stress and hardship for them and their family.
If you work within primary and secondary level education, we have information that can help you support your pupils <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1O-1/c.aspx>. We also have resources and information for higher and further education staff. <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1P-1/c.aspx> Whatever age range you work with, why not take a few minutes to find out more about this misunderstood illness today? You could be making a world of difference to a young person with M.E.
Guide to severe M.E. now available in our store
With the kind permission of Emily Collingridge’s family, Action for M.E. has begun selling physical copies of Severe M.E./CFS – a guide to living <http://dmtrk.net/1HO-564JQ-GGATG8-2SSW1Q-1/c.aspx> through our online store. This is a comprehensive reference book written by the late Emily Collingridge, who had more than 12 twelve years’ experience of severe M.E., in consultation with patients, carers, friends, relatives and health professionals.
From member Liz Blackadder
There are a lot of concerns about the FITNET trial for adolescents. It is going to be based on a previous Dutch trial which seems to have raised more questions than it answered. The MEA reports a review paper:
One thing that strikes me: adolescents and younger people are more likely to recover spontaneously, especially if given time & space to recover. It sounds as if it is possible that FITNET can actually inhibit the chances of this recovery.