ME/CFS Research at the Quadram Institute, Norwich, UK

I wonder how much research funding has gone to BPS research into IBS symptoms during that time and talking therapies in the UK?
I was diagnosed with IBS 30 years ago. At one stage in the subsequent few years I joined the IBS Network in the UK, the national charity. It was heavily influenced by their medical advisor (Nick Read???) who was big into all sorts of psychological theories for IBS
 
Quadram: 'Research exploring the role of viruses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Introducing Dr Krishani Perera’s fellowship'

"Identifying microbes in mucus and blood of people with ME/CFS
I’m searching for links between microbes in our mucus and blood and ME/CFS.

At the Quadram Institute we are planning to run a study, funded by the charity Invest in ME Research, to learn more about the role that microbes play in ME/CFS.

The COMPASS ME Study will analyse the mucosal microbial communities, including viruses, bacteria and fungi, of individuals with and without ME/CFS. We will take mucosal swab samples as they are easily accessible and sites where microbial infections often begin.

Many individuals with ME/CFS face severe mobility issues. This means we must prioritise patient accessibility and comfort when collecting samples, ensuring that our studies are as inclusive and accommodating as possible

I also investigate the communities of viruses in the bloodstream of individuals with ME/CFS. I want to see if they play a role in immune dysregulation. Immune dysregulation describes a situation in which the immune system is not functioning properly.

As part of my research, I study microbial extracellular vesicles. We can think of microbial extracellular vesicles as tiny membrane bound ‘packages’ that may carry microbial components. These could serve as diagnostic and therapeutic marker targets for ME/CFS."

More on full blog post
 
Recruitment is open:

The COMPASS-ME Study​

Are you a woman aged between 18 and 45? You may be eligible to take part in the COMPASS-ME Study.

The COMPASS-ME Study is investigating potential microbes and infectious triggers associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

We are looking for females with a confirmed ME/CFS diagnosis along with healthy female participants. The comparison of data between these two groups will help identify microbes potentially linked to ME/CFS.

The study is entirely remote, carried out at home. Participation in this study is entirely voluntary, and no financial or other incentives will be provided for taking part.

The study involves:

  • Two saliva samples
  • Two swabs each from your nasal, oral and vaginal cavities
  • Completing questionnaires including a General Information Questionnaire, Your ME/CFS Questionnaire and FUNCAP27 (A tool which assesses your physical and functional abilities)

You are eligible to take part if you:

• Are a woman (individuals assigned female at birth or those who identify as female), aged 18 to 45 years

• Currently having periods (even if they are not regular)

• Can understand what the study involves and is able to provide fully informed consent

• Live in England

• Have reliable access to postal services to receive and send back the sample kits

• Have access to a smartphone and/or a tablet or computer and Wi-Fi

For ME/CFS patients:
• Must have been diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by a doctor or healthcare provider.

You are not eligible if any of the following apply:

• You are unable to provide written or verbal informed consent

• You have any symptoms of infection within the last 4 weeks

• If you get frequent infections like cold sores or shingles, unless they’ve been under control for at least 3 months

• If you have (or are under investigation for) any other chronic illnesses (e.g. cancer, autoimmune conditions, asthma, depression)

• If you’ve used any medications such as antibiotics, antivirals, antifungals, or steroids in the last 3 months

• If you have smoked or vaped in last past 3 months

• If you are currently (within the last month) undergoing radiation and/or chemotherapy treatment as cancer treatment

• If you are pregnant or suspect you are pregnant or planning to become pregnant

• If you have altered your birth control hormones / contraception method or hormone replacement therapy within the last 6 months

• Have had any form of hysterectomy - a surgical procedure which removes your uterus (womb). This applies whether or not your ovaries were also removed.

• You have already gone through menopause or are currently noticing signs of
the menopause (such as hot flushes, night sweats, or periods that have become irregular or stopped altogether).
 
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