United Kingdom: Invest in ME news

January 2020 newsletter, https://mailchi.mp/8debd4b3d287/supporting-biomedical-research-into-me-this-christmas-1235507

 

February 2020 newsletter, https://mailchi.mp/c07827220d2e/supporting-biomedical-research-into-me-this-christmas-1261227

 

March 2020 newsletter, https://mailchi.mp/9e68bcabd2b3/supporting-iimer-biomedical-research-into-me-1269163

 

January/February 2021 newsletter, https://mailchi.mp/a2f1826dbbba/supporting-biomedical-research-into-me-this-christmas-8058012

 

March/April 2021 newsletter, https://mailchi.mp/f1a50f5cca26/supporting-biomedical-research-into-me-this-christmas-8379324

Includes RESTORE-ME TRIAL LATEST, https://www.investinme.org/IIMER-Newslet-21-0401restore.shtml

 

From Twitter. Dr Ian Gibson has passed away.

"Dr Ian Gibson
Very sad news for this charity - and for all people with ME and their families
Our advisor and our friend investinme.org/landerigibson.…"

 

Invest in ME Research has won a £1,000 Movement for Good award thanks to nominations from the public.

https://www.investinme.org/IIMER-Newslet-21701eccles.shtml

Invest in ME Research has again secured places in the Royal Parks Half Marathon which will take place in October 2021.

This will be another opportunity for raising awareness of ME and of the charity's efforts to fund a strategy of funding high-quality biomedical research and the development of a UK/European Centre of Excellence for ME.
Our runners
We are very grateful to any of our supporters who decide to run for the charity.

Please help publicise these if you can - in the media, on social media.

We welcome every effort made to support our Team IIMER.

Your efforts will help ensure all funds will go to supporting, promoting or funding biomedical research into ME.

https://www.investinme.org/IIMER-Newslet-21-0201RPHM.shtml

 

Invest in ME Research have today published a strongly worded piece particularly critical of the current NICE secrecy and their potential partiality.

NICE Guidelines Development 2021 - A Time to Step Back?
see https://www.investinme.org/IIMER-St...e4SERnWrSaZ01b1Lds9nWlyR2_pH6TisTubcd79Bk0vsU

See post in Thread on NICE’s delay in publishing the new guidelines https://www.s4me.info/threads/nice-...e-17th-august-2021.21897/page-118#post-373753

 

Thread for the 2022 Colloquium, Invest in ME: 11th International Biomedical Research into ME Colloquium 18th-19th May 2022

 

"The recent statement made by Secretary of State for Health Sajid Javid that he would set up a meeting to "drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field" – following his disclosure of a relative with ME – has led some to believe that a new dawn is breaking for ME [1].

It is, of course, completely understandable that some may feel that we suddenly have a dramatic change for ME. As much as anyone IiMER wish to see huge investment in a sound strategy of biomedical research into ME, and adequate and relevant services from educated and informed clinicians - things we have consistently campaigned for since we were formed.

But words are cheap.
It is all well to have another new initiative come along every few years, claiming to herald a new approach, yet ending up nowhere and wasting more lives of people with ME.

As with the NICE guidelines of 2021 the reality is that all of this could have been done properly a decade or more ago – and was not.
So now we perhaps have a little more publicity – thanks mainly to the number of people falling to long covid and the urgency (and funding) given to the pandemic, and a health secretary who has a relative with ME.
But is this a sea change?
Will things change – and quickly?"

https://www.investinme.org/iimer-newslet-220601-javid.shtml

 

"Our updated Executive Summary for MPs document describing progress with the centre with a few additions (first page itself a summary for busy MPs) Also link to some of our input to UKCRC research working group
https://www.investinme.org/ce-exec-summary22.shtml"

 

Here's a transcript of the update on the FMT trial. It's audio only.

Announcer: ...7 minutes to 7:00 is the time. Could there be hope in a science park here in Norwich for people with ME? And too for other conditions such as long Covid, that seem mysterious and damaging and ill-understood? What's being investigated is fecal microbiota transplant, essentially, injecting people with fecal matter (with poo). I went to see professor Simon Carding in his lab at the Quadram Institute at the University of East Anglia's medical school.

Simon Carding: We are looking at an anaerobic cabinet, which allows us to work with microbes in the absence of oxygen--to try and replicate the conditions under which a lot of microbes in your gut exist.

Announcer: Tell us specifically about what you're doing with fecal matter and the idea of injecting it, which sounds, to put it mildly, crazy.

Carding: Gross.

Announcer: Gross. But is it?

Carding: No. So it's not new, I mean, it's come into the sort of popular press quite recently but it actually dates back to the 4th century as a part of Chinese medicine. Very recently, in the last 10 years, we've started to use it, adopted it in the NHS, to treat a very nasty infection caused by Clostridium Difficile. And this is now becoming a frontline form of treatment for patients that have recurrent episodes of infection by this potentially life-threatening infection.

Announcer: So what's actually done? What is involved?

Carding: We select donors, and this is rather similar to the process we use to select blood donors, so they provide blood samples, they fill in health questionnaires, their stool is taken, examined for the presence of any potential pathogens. We want to exclude those. So we select the donors on a strict criteria. We then take a stool sample, and then we can basically emulsify it, put it into a syringe, and then deliver that through a tube through the nose or through a colonoscope. Increasingly, we're looking at encapsulating the stool, so we can actually use capsule delivery, which would be a real significant change in the way FMT's delivered, opening up the treatment for a variety of patients and diseases.

Announcer: A variety of diseases. Which is what's fascinating. So, at the moment, you've explained what it is used for. How wide might that variety be?

Carding: The thing to bear in mind here is that about 90%, maybe even all human diseases are associated with changes in the composition of your gut microbes. So lots of diseases now opening up to the possibility of using FMT as a treatment. Inflammatory bowel disease, irritable bowel disease, but some neurological diseases, dementias, cancers, these are all opportunities to test the application of FMT as a treatment.

Announcer: Fascinated by the idea that neurological diseases can be treated in this way.

Carding: Yes, so my particular interest here is myalgic encephalomyelitis or ME. Previously known as chronic fatigue syndrome. And we are planning an FMT trial in patients with ME because they have disturbances in their gut microbes that causes lots of conditions throughout the body.

Announcer: Because there's no treatment at the moment for ME, is there? Are you looking at potentially coming with treatments in a reasonable time frame? Is that a realistic possibility, a realistic hope for what you're doing here?

Carding: That's certainly our aim. Is to understand more about the causes of ME so we can develop more effective treatments. So few patients make a full recovery. There's clearly an urgent need to develop new therapies.

Announcer: So it's not around the corner, but it is a pathway.

Carding: It's absolutely a pathway, yes. Collectively, I think there's some real hope here. That working together, we will be able to develop new therapies. Certainly in the next few years, I would hope.

Announcer: And more widely, we are much more aware now, about the link that there is between our guts and our brains actually. And the way we are much more generally.

Carding: Well, that's right. So, we're talking about the gut-brain axis here. The bidirectional communication between the brain and the gut. And microbes play in important part in that communication pathway because they can interact with all of the neurons that are present in our gut, the immune system that's present in our gut, the hormonal system that's present in our gut. So just being close to all these sensory systems allows them to influence a whole range of physiology, organ systems, and we're particularly interested in how it affects the brain.

Announcer: And if that is the case, it sort of changes, doesn't it? In a really fundamental way, the way in which (at least in the West) medicine has regarded a kind of division between what's going on between in your stomach and the rest of you.

Carding: Yes, so I think it's fair to say that China, Asian countries have had much more serious interest in FMT and using it, dating back as I said to the 4th century. We're only just becoming converts to the potential. There are questions that remain to be answered such, what's the best way for screening donors to make it absolutely safe? What's the best route of delivery? So there's still some research to be done but I think the potential is huge.

Announcer: Professor Simon Carding, thank you very much.

Carding: You're welcome. Thank you.

 

I think he has that the wrong way around.

 

A treatment that has been going for 1,700 years and still has no reliable evidence. Mmm.
(Except perhaps for a disease due to modern antibiotics killing your own poo.)

 

Executive Summary Page for MPs A summary of the work of UK charity Invest in ME Research and researchers in Norwich Research Park in developing a UK/European Centre of Excellence for Myalgic Encephalomyelitis (ME or ME/CFS 1) by facilitating and initiating world class research.
https://www.investinme.org/Document... Executive Summary for MPs Status Feb23aa.pdf