Research
We will use this area to highlight particularly relevant research results, and those this Support Group has supported that may not be reported nationally. We will also provide links to particular research sites, and this will develop over time, but we see no need to repeat here what is already available through reliable sources.
Research Links
In our opinion, one of the best available summaries of research projects, and analysis of the results, is to be found on the ME Association (MEA) website where the content is edited by Dr Charles Shepherd. The MEA have had a research fund (the Ramsay Research Fund) for some time and concentrate on funding biomedical research. They are currently supporting the UK ME Biobank and related research.
http://www.meassociation.org.uk/research2015/
(Incidentally they have a good introduction to CFS/ME: www.meresearch.org.uk/what-is-me)
ME Research (MERUK) organises – they say “energises” – research – see http://www.meresearch.org.uk. They also fund their own research – see http://www.meresearch.org.uk/our-research.
There is a great deal of biomedical research now going on, much of which has been funded at some point by MERUK. They have an online magazine: http://www.meresearch.org.uk/news/breakthrough-spring-2017/
Action for M.E. has also recently become involved in funding a small amount of research. It also provides the secretariat for the UK Research Collaborative:
https://www.actionforme.org.uk/research/introduction/
The fourth UK organisation involved in research is Invest in ME Research. They have been running successful annual research conferences in London for some time, and more recently started raising funding for a research centre of excellence in Norwich.
http://www.investinme.org/index.shtml
Simon McGrath’s Blog: A member recently came across Simon McGrath’s blog which is a very useful commentary on research. See: Simon McGrath
There is also a lot happening elsewhere, especially in the US, Canada & Australia – MERUK usually gives a summary in its Breakthrough magazine. “Breakthrough” equates to hope!!
Recent Topics
From Simon McGrath – The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion
“The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin’s NIH-funded Collaborative – the Center for Solutions for ME/CFS – is focusing primarily is on how problems in patients’ gut microbiomes might drive the disease, his team is also probing deeply what happens when patients exert themselves. Lipkin says that the exertion studies are so important that the Collaborative will devote a third of its research resources to it.” More at: https://mecfsresearchreview.me/2018/08/14/the-heart-of-me-cfs-lipkins-collaborative-probes-the-impact-of-exertion/
From Simon McGrath –The microbiome hypothesis: Lipkin’s collaborative, part 1
“A gut reaction is the problem in ME/CFS – that’s the main idea being pursued by Dr W. Ian Lipkin of the Center for Infection and Immunity at Columbia University. He believes that the body’s response to changes in the gut could be what’s driving ME/CFS for at least some patients.” More at: https://mecfsresearchreview.me/2018/07/17/the-microbiome-hypothesis-dr-ian-lipkins-collaborative-part-1/
Chronic Fatigue Syndrome (ME/CFS) Researcher and Patients Shine During NIH Call
An update from the NIH (National Institutes of Health) in the US. They are the main source of research funding and now seem to be getting more interested in M.E. after a lot of campaigning from US groups. As well as US research centres, NIH has also put some funding into the UK ME Biobank.
This information comes from Health Rising, an online ME news source based in US: https://www.healthrising.org/blog/2017/12/09/me-cfs-researcher-patients-shine-nih-call/
Identifying Chronic Fatigue Syndrome
From an interview with Dr. Jose Montoya:
Q: What did you and your colleagues find in the latest study?
“About seven years ago, we decided to design a study to answer the question of what the disease is. We knew we had to get a study with a significant sample size. We consulted with statisticians, and with their recommendation we came up with a sample size of 200 patients and 400 healthy controls. We analyzed their blood samples and found that there were 17 cytokines that track the severity of the illness and the patient’s symptoms. Of these, 13 are pro-inflammatory. A cytokine is a small protein that the immune system uses to communicate with other cells. These cytokines can be protective, but they can also be harmful. That’s where the issue is — it’s a double-edged sword.”
This is from an article on Jose Montoya’s research at Stanford. He was keynote speaker at UK Research Collaborative conference this year in Bristol. See: http://stanfordmedicine.org/communitynews/2017fall/montoya.html
Cellular Energy Production Takes Big Hit in Chronic Fatigue Syndrome (ME/CFS) Study
This is from “Health Rising” at
https://www.healthrising.org/blog/2017/11/11/cellular-energy-hit-chronic-fatigue-study/
“The two-day exercise study results suggest that the ability to produce energy after exercise in chronic fatigue syndrome (ME/CFS) is blunted, and the search is on to identify blockages in cellular energy that could explain that. Lead by Cara Tomas, Julia Newton and company have stepped into the fray with the first published “Seahorse” ME/CFS study that I’m aware of.”
This piece of research was funded by an award from the committee headed by Prof. Stephen Holgate, who will talk about the research situation at our Medical Lecture – see http://www.dorsetmesupport.org.uk/events/annual-medical-lecture-2017/
NICE CFS/ME guideline to be updated
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.