United Kingdom: ME Research UK (MERUK) News

ME Research UK

For ease of access, we have collated all our symptom postings from ME Awareness Week into one article:
https://www.meresearch.org.uk/what-makes-me-cfs-so-debilitating/

 

From ME Research UK:

ME Research UK is delighted to announce that we have awarded funding to Prof. François Jérôme Authier and colleagues for a new study assessing neurocognitive impairment in people with ME/CFS. By analysing data from multiple neuropsychological and neuroimaging assessments, the researchers aim to establish a detailed picture of cognitive abnormalities in ME/CFS, and whether they correlate with morphological and functional changes in the brain. Read more here: https://bit.ly/3yNR3Uq

 

ME Research UK

ME Research UK is delighted to announce that we have awarded funding to Dr Rob Wüst at Vrije Universiteit Amsterdam in the Netherlands for a new study aiming to identify microclots in the muscle and blood of people with ME/CFS.

Dr Wüst (photo by Patrick Siemons) made waves recently with his research which found multiple abnormalities in muscle structure and function in people with long COVID, as well as the presence of microscopic clots (microclots), which increased after an exercise test to induce post-exertional malaise (PEM).

Given the similarity in symptoms and potential link between ME/CFS and long COVID, could there be a similar picture in people with ME/CFS? This is the question Dr Wüst and colleagues want to answer in this new study in which they will assess muscle biopsy samples taken from people with ME/CFS before and after inducing PEM.

Their findings may help improve our understanding of PEM in ME/CFS, and possibly pave the way towards new therapies.

Find out more: https://bit.ly/wust068

This project was made possible thanks to the generosity and fundraising of our supporters, including those who donated during 2023's Big Give campaign.

 

ME Research UK — June 2024 e-newsletter

https://www.meresearch.org.uk/me-research-uk-june-2024-e-newsletter/

 

From the ME Research UK June newsletter:

This is absolutely not supported by the evidence.

If I recall correctly with most small fibre neuropathies the pattern is usually a length dependent one, with progression in a distal to proximal pattern, & even with the non-length-dependent neuropathies there are characteristic patterns of signs and symptoms as opposed to the more diffuse and generalised symptoms experienced by pwME. We don't have any of the abnormal sensory, motor or other clinical signs typical of this type of neuropathy as it is classically understood.

There have been a few studies using QST etc but that newsletter seems to me to contain far too much conjecture of the counterproductive kind.

And I am surprised they are wasting research funds on the microclot hypothesis.

 

"ME Research UK is pleased to an announce an open call for applications from researchers wishing to investigate the causes, consequences and treatment of ME/CFS. Funding is available to support biomedical studies at appropriate host institutions worldwide."

"Timetable

The deadline for outline proposals is Friday 23 August 2024, by 5 p.m. BST.

The deadline for full applications is Friday 8 November 2024, by 5 p.m. GMT (for applicants who are successful at the outline stage).

We anticipate that final decisions on awards will be made by February 2025."

https://www.meresearch.org.uk/research/research-grants/

 

How does ME Research UK decide which research projects to fund?

https://www.meresearch.org.uk/how-does-me-research-uk-decide-which-research-projects-to-fund/

 

From ME Research UK

ME Research UK's July 2024 e-newsletter was sent out this Wednesday. Want to join the mailing list? It is easy to do - https://shorturl.at/Bvqeu

Alternatively, read the e-newsletter on our website - https://tinyurl.com/dthdyv4u

 

What’s the Current State of ME/CFS Research?
Dr. Emma Slack discusses the latest developments from myalgic encephalomyelitis/chronic fatigue syndrome research.
Article
Published: August 22, 2024

|
Leo Bear-McGuinness

full interview

https://www.technologynetworks.com/...ts-the-current-state-of-mecfs-research-390136

 

I'm really tired of reading articles like this. All they do is spread false hope that lead to people feeling more despair. Nothing's changed and nothing's changing either. Even LC is not recognized by the medical profession. No matter how much the evidence grows, the stubborn denial just grows to match it. It's how they always react and pretending otherwise helps no one. If there's been a tiny shift in attitudes, 1-2% of MDs who may think about it as a thing worth not ignoring entirely, from the looks of it this tiny shift has been more than overruled by a greater number of them who never thought about it before, and have since adopted the psychosomatic rehabilitation model.

It's true that LC has basically put everything into focus, validating that out of decades of controversy, it's the patients who were right about everything. Well, the patients and about 100 or so MDs. But nothing's changed, and things still aren't close to changing. If anything the medical profession appears to be digging in even further, the sunk cost of having bullshitted so much about LC encourages it. They can't bear being wrong and they've only gotten more wrong since.

At least drop the BS about the illness being believed. Which is irrelevant and false. It needs to be understood for what it actually is and taken seriously. Which is nowhere close to where we are.

It used to be maligned and disbelieved. It still is, but it used to be maligned and disbelieved, too. Mitch (E)dberg-(B)ased (M)edicine.

 

Change won't come from doctors believing us. Not at first. It will come from good quality research. The public, governments etc will all change their outlook before doctors do. Most doctors will have to be shown a solid biomarker or a treatment that helps significantly before they let it go. Some not even then. But we may one day reach a point where no doctor will admit to espousing the abhorrent views they currently do.

I understand what you're saying and in terms of doctors I largely agree but I think more is changing generally than your post allows.

 

ME Research UK – August 2024 e-newsletter

https://www.meresearch.org.uk/me-research-uk-august-2024-e-newsletter/

 

From Facebook:
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We were delighted to receive 28 proposals in response to our recent call for grant applications. Together, a total of nearly £6 million has been requested, and these studies represent many different areas of ME/CFS research – including immunology, neurology and the brain, post-exertional malaise, biomarkers, and viral infections. The proposals are currently being assessed by our Science Committee to select which ones will go to a full application, but none of this would be possible without the generosity of our supporters..
—-
They would only have the funds to fund a fraction of this.

 

ME Research UK – enewsletter September 2024

https://www.meresearch.org.uk/me-research-uk-enewsletter-september-2024/

 

ME Research UK is delighted to announce that we have awarded funding to Assoc. Prof. Leighton Barnden at Griffith University in Australia for a new study aiming to track changes in the structure and function of the brain over time in people with ME/CFS. https://bit.ly/barnden067

 

ME Research UK:

The Autumn 2024 issue of Breakthrough magazine is now available online. This issue includes a look at two newly funded research projects on microclots and neurocognitive impairment, an article from Cort Johnson on severe ME/CFS, an interview with Tina Katsaros from La Trobe University, and much more.

Read it here:
https://www.meresearch.org.uk/research/breakthrough-magazine/

 

From ME Research UK:

https://www.meresearch.org.uk/prevalence-of-me-cfs-a-growing-problem/


Prevalence of ME/CFS: A growing problem
28 October 2024


Determining the prevalence of any disease may be thought of as a simple matter, underpinned by certainties and sound science. However, in ME/CFS prevalence figures are not so straightforward – confounded as they are by differing disease definitions, data collection methods, and even when and where a study was carried out.

In a series of articles, ME Research UK will examine exactly what is meant by prevalence, what figures over the years have been suggested, and, most importantly, the limitations of the studies that do exist which highlight just how complex the question of prevalence actually is.

Such a simple question, but one which research has yet to provide a universally acceptable answer as ME Research UK shows:

1. What is prevalence and why is it important?

https://www.meresearch.org.uk/what-is-prevalence-and-why-is-it-important/

2 What the existing research says about the prevalence of ME/CFS, alongside the research’s strengths and limitations.
https://www.meresearch.org.uk/?p=20365

3. Why existing estimates for the prevalence of ME/CFS may no longer apply to the UK population today.
https://www.meresearch.org.uk/?p=20403

4. A summary, and recommendations for the next steps.
https://www.meresearch.org.uk/?p=20418

 

ME Research UK – enewsletter October 2024 https://www.meresearch.org.uk/me-research-uk-enewsletter-october-2024/

 

ME/CFS in children and young people – World Children’s Day 20th November 2024


ME Research UK:

World Children’s Day is UNICEF’s global day of action for children marking the adoption of the Convention on the Rights of the Child on November 20. One of the key aims of the day is to highlight critical issues affecting children’s lives – regrettably, this includes ME/CFS.

Read more about ME/CFS in children and young people here: https://bit.ly/4hY2xXw

Find out more about World Children’s Day here: https://www.unicef.org/world-childrens-day#WorldChildrensDay