Walsall Fibro M.E. Support

Last November, exclusively for ME Research UK, Cort Johnson took a look at some of the ways in which the brain may be involved in ME/CFS, and research aiming to explore this further, including one ME Research UK-funded study.

Read more: https://meres.uk/inthebrain

Sajid Javid: Labour must deliver on ME as patients suffer without a cure The former health secretary’s call to action coincides with a landmark inquiry into the death of Maeve Boothby O’Neill, the eldest daughter of The Times’ senior writer Sean O’Neill

Today - 20/07/2024 - BBC Sounds Including Sports Desk, Weather and Thought for the Day.

"Reduced Cerebral Blood Flow (CBF) -- including while lying down -- may underlie the pathophysiology of Post-Exertional Malaise (PEM) in (ME)"

https://lumiahealth.com/blogs/news/reduced-supine-blood-flow-to-head-in-post-exertional-malaise-pem

Poster:
https://cdn.shopify.com/s/files/1/0873/0968/0927/files/240630_ACSM_Workwell_Lumia_Poster.pdf?v=1719881896

Biggest 2-Day Exercise Study Ever Validates the Energy Problems in ME/CFS: Pt. I - Health Rising Two-day exercise study shows that intense exercise knocks down energy production in chronic fatigue syndrome (ME/CFS)

Rescuing the Metabolic Problems in ME/CFS and Long COVID? The LOLA Possibility - Health Rising Study suggests supplementing with L-ornithine and L-aspartate (LOLA) may help people with long COVID and chronic fatigue syndrome (ME/CFS)

‘A 30-second walk would exhaust me beyond reason’: Natacha’s life with long Covid Natacha Gray had an active life, diving, climbing and playing music, before illness left her so tired she would collapse on the way to the couch. She discusses two and a half devastating years – and how she stays optimistic

ME Association: Professor Manoj Sivan to develop new protocol for dysautonomia in ME/CFS and Long Covid - The ME Association We hope the protocol when implemented will bring relief to the hundreds of thousands of people who suffer from these very debilitating symptoms

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this 7-minute video, "What is ME? (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome CFS)".

https://www.youtube.com/watch?v=VKPdgz612nU Day #15

BMJ: Rapid Response: Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis

Dr Harvey writes:

"The current lack of services does not preclude care improvements. As doctors, nurses and other medical professionals, you can help to reduce the suffering and dismissal we experience. "

She continues: "At least 50% of people with Long Covid meet the criteria for ME, meaning the number of people in the UK with this devastating disease is dramatically increasing and is estimated to stand at more than 1.25 million."

Read the letter in full here:

https://www.bmj.com/content/383/bmj.p2372/rr

Please read the ME Association statement about the lack of understanding and inadequate management of people with severe ME/CFS when admitted to hospital below:

https://meassociation.org.uk/eq1m

Australia: Significant overlap in neurochemicals in Long Covid and ME/CFS - The ME Association The research found significantly elevated Glutamate and N-acetyl-aspartate levels in Long Covid and ME/CFS...

Post exertional malaise (PEM) is often referred to as the cardinal symptom of ME/CFS – and one which is also experienced by some people with long COVID. Therefore, of interest is a paper published on the 30th March this year which takes a closer look at how monitoring lactate levels in the blood may provide a way to support pacing strategies for PEM – although more research is needed.

Read more about the paper : https://tinyurl.com/k823kc5c

Read the full article: https://bit.ly/441WpHy

New from NCNED team in Australia:

"Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI"

Free full text:
https://www.sciencedirect.com/science/article/pii/S000293432400216X

This research is funded by ME Research UK

In tonight’s segment on ITV Granada, our CEO, Sonya Chowdhury, speaks to Joshua Stokes about the lack of specialist services for ME, particularly in the North West.

"We sent out a freedom of information request to 14 NHS Trusts and integrated care services in the North West and only one came back with a substantial service for ME. So, it is quite shocking that we don’t have specific services, not least because of the impact of those that have developed Long Covid and now have ME-like symptoms."

The segment also features Debs Dixon, who talks through her experience of living with Long Covid for the last two years.

“I was down for three months and at that point, it was probably the lowest I’d ever been in my life, and it still continues to be one of the biggest challenges.”

Stokes also sits down with Juan Corlett, Chair of ME Support Isle of Man, to hear how the Isle of Man’s specialist service is helping those with chronic conditions such as Long Covid, and the links with ME.

Juan had spent years campaigning for a specialist service but it took a global pandemic to build momentum for the service.

“There was all of these Covid-19 cases which to us, seemed likely to generate a proportion of people with post-viral syndromes. I think once we got local politicians on board, then the momentum built."

The service is now a year old and supports people with ME and Long Covid.

You can read the full article and watch the interviews here: https://ow.ly/oyYw50R8FUY

meassociation.org.uk

One sheet printout | Physiosforme We often hear from people with ME seeking our support because they have to see a physiotherapist for a problem other than ME. This could be something like a shoulder injury, or following knee surgery, or neck pain etc.

Our FREE Young People's Counselling Service Learn more about our free Young People's Counselling Service.

COVID-19 Antibody Discovery Could Explain Long COVID Surprising findings from UVA Health could lead to new treatments for COVID-19, long COVID and possibly other viruses.

The Royal College of Anaesthetists :Anaesthesia on Air Podcast: The perioperative management of patients with ME/CFS and Long COVID

"In this episode of Anaesthesia on Air Dr Anton Krige, RCoA Clinical Lead for ME/CFS, talks with Dr Charles Shepherd from the ME Association and Helen Baxter, a patient advocate for ME patients, about the College's latest patient information project ME/CFS and anaesthesia. They explore this poorly understood medical condition and the strategies that anaesthetists will find useful in managing these patients in the perioperative period."

https://audioboom.com/posts/8472161-the-perioperative-management-of-patients-with-me-and-long-covid

This podcast accompanies the new information leaflet covering hospital admissions and anaesthetics for people with ME/CFS:

https://meassociation.org.uk/ayqa

America: 'ME/CFS is unambiguously biological, with multiple organ systems affected...' Dr Avindra Nath - The ME Association Led by neurologist Avindra Nath, MD, the researchers report several physiological differences between people with ME/CFS and healthy volunteers.

Long Covid Awareness 2024

Around 50% of those with Long Covid fit the criteria for ME/CFS - this could mean an estimated 1.25M have post covid ME/CFS in the UK today!

Today is Long Covid Awareness Day 2024 - 15th March

Join us and Long Covid charities to raise awareness of Long Covid - Together in solidarity!

Excellent article byGeorge Monbiot in The Guardian on the national scandal of the treatment of people with ME. This isn't a historical problem, it is happening now - Millie & Karen are both at risk of starvation in NHS hospitals. Please sign their petitions
https://ow.ly/femI50QHstC
https://ow.ly/u0iv50QHstB

'It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

ME/CFS saps sufferers of energy and basic physical and cognitive functions, confining many to their homes or even their beds, often shutting down their working lives, social lives and family lives. The extreme seriousness of this condition, and the fact that there is neither a diagnostic test nor a validated treatment, places a special duty of rigour on doctors and researchers. But patient care has been compromised, and useful research inhibited, by the lingering conviction of many practitioners that ME/CFS is “psychosocial”: driven by patients’ beliefs and behaviour.'

https://ow.ly/tgPc50QQYxZ

Long Covid Awareness 2024

Post COVID-19 syndrome: signs and symptoms that develop during or after COVID-19 and continue for more than 12 weeks and are not explained by an alternative diagnosis (NHS)

The Office for National Statistics: Prevalence of ongoing symptoms following COVID-19 infection in the UK

- 1 in 10 people in the study reported symptoms for more than 4 weeks
- 1 in 13 for more than 12 weeks
- 1 in 20 for more than a year

Read more here: https://meassociation.org.uk/long-covid-further-information/