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Mads

Mads

@blueforpwme.bsky.social

160 followers 280 following 440 posts

🇬🇧DxwM.E.1995-EBV &now LC ex-dancer,lifeguard,performer, working on writing my 1st novel to rep #pwME! I’m a dreamer,nature lover & surfer 🏄‍♂️🛹1-2 times a yr if I’m lucky. Many undiagnosed comorbidities! Ie.MCAS.OI/DYSAUTONOMIA.EDS. GASTRO.ADHD.CHIARI/SPINAL🦋

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Mads @blueforpwme.bsky.social · May 1

If you experience PEM & are on the mild-mod spectrum of #MyalgicEncephalomyelitis or #LongCovid & are able to get out 1/2 times a month & feel isolated and lonely, then this might be the type of session you could enjoy☁️

Please help me with my research:
Short Q’s🩵🦋

www.surveymonkey.com/r/5GX63NB

A survey to help me gain insight to help those with energy limiting conditions through gentle flowing movement, relaxation & sensory immersion; from those with lived experience. Apologies for lack of ...

Take this survey powered by surveymonkey.com. Create your own surveys for free.

www.surveymonkey.com

Mads @blueforpwme.bsky.social · 2d

… and obviously @davetuller1.bsky.social @sunsopeningband.bsky.social which I’m sure you have on your radar already

Mads @blueforpwme.bsky.social · 2d

Sure you have the links to Valerie Eliot Smith and also @rfh1955.bsky.social sites… maybe some countering CBT/GET amongst all the information? Not sure if it will be helpful for you as non specific and a lot of evidence to look at but thought I’d add my contribution here in case 💙

Mads @blueforpwme.bsky.social · 3d

Oh yes I recall that name. It’s so sad how we remember the names of these beautiful souls yet many of us have never had the honour of meeting them in real life. It’s all such a muddle isn’t it and so wrong. All souls will be remembered for their courage in the face of uneccessary&unfair adversity 💙

Mads @blueforpwme.bsky.social · 3d

#Whitburn #ConservationCentre

Mads @blueforpwme.bsky.social · 3d

I’ll be sharing any promotional material in due course, depending on the outcome of Mondays meeting
Thank you,
Madeleine ☁️

Mads @blueforpwme.bsky.social · 3d

It’s likely that for me to be able to run a session that it would only happen once a month and be limited for spaces. I’m thinking 8 people per 2 hour session so I could always rotate a list as some may only be able to attend once every few months for example.

I’d love it if you could support me 💙

Mads @blueforpwme.bsky.social · 3d

I’ll feedback after my meeting on Monday

Thank you for reading

Please SHARE or to groups local to the North East coastal regions

#pwME / #LongCovid

Mads @blueforpwme.bsky.social · 3d

#Sunderland #Souter #Sessions #CloudShrine

Mads @blueforpwme.bsky.social · 3d

If you know anyone that this might benefit in the Sunderland area, please let them know about this as there’ll be a period of time to collate interest & for marketing the sessions. It will only go ahead if enough people can make it, so if you’re isolated there’s a chance to meet others, if you can 💙

Mads @blueforpwme.bsky.social · 3d

I’m hoping to trial this in the Sunderland area at a beautiful location, away from any hustle & bustle by the coast. A landscape that offers some nourishment in itself. Whether you can attend just to lie down & immerse or can move a bit; the aim is to connect & rest, moving a little if you’re able 💙

Mads @blueforpwme.bsky.social · 3d

I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal

The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️

An image of a floating white cloud against a pale blue background with light clouds behind. The cloud has closed eyes projecting contentment and relaxation. There is text above the cloud that reads: CLOUD SHRINE & text below the cloud that reads: FIND YOUR CLOUD. YOUR SHRINE. YOUR TIME.

Mads @blueforpwme.bsky.social · 3d

I’ve not seen this one before and I haven’t seen them all, but this means that Maeve Boothby O’Neill definitely wasn’t the first where the coroner put M.E. as cause of death. The historical narrative is unending in its proof time and time again about this disease and the tradgedies surrounding it 💙

Mads @blueforpwme.bsky.social · 3d

He looks like a lovely 🐈‍⬛ ❤️ close calls are stressful. Hope he’s ok now

Reposted by Mads

Tom Kindlon @tomkindlon.bsky.social · 3d

Emerge Australia Research Digest | Issue 122

emerge.org.au/researchdige...

I find the audio summaries useful

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

Welcome to the 122nd edition of the Research Digest. This month’s studies continue to advance understanding of ME/CFS, highlighting biological differences between post-infectious and gradual-onset ME/CFS, uncovering new insights into how extracellular vesicles may drive post-exertional malaise (PEM), and exploring brain metabolism changes following exercise. We also feature a large international survey on patient-reported treatment outcomes across ME/CFS and long COVID, and the RACGP’s launch of a new Specific Interest Group to better support clinicians managing energy-limiting and post-infectious conditions.

Contributing Digesters: Solène, Sarah, Anna and Simone.

Please note: The Research Digest shares current scientific findings for awareness and discussion. It is not a substitute for medical advice or treatment guidance, as much of the research featured is in its early stages and requires further confirmation.

We hope you enjoy the Easy Read Overview and audio summary we’ve included under each article’s title – it’s now even easier to stay informed of the latest ME/CFS and long COVID research!

Reposted by Mads

Royal Free 1955 @rfh1955.bsky.social · 12d

Today, thirty-six years ago. The Guardian, UK. 24th October 1989. #myalgicencephalomyelitis #cfsme #myalgice #mecfs

Reposted by Mads

David Tuller @davetuller1.bsky.social · 12d

For the first time, Berkeley's Trial By Error crowdfunding campaign has reached 50% of the goal right at the 15-day half-way point. Most times, it's at about a third at this point. If you'd like to donate, here's the link:
crowdfund.berkeley.edu/project/47768

David Tuller's Trial by Error Fall 2025

Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

crowdfund.berkeley.edu

Reposted by Mads

Adam Fare 🖤🤍💜 @adamfare1996.bsky.social · 13d

When you wake up every morning nervous, with a feeling of dread.

Not because you have an important meeting coming up, or work pressure...

But because you don't know whether or not your body is going to work, or if it's going to be a day of agony and uncontrollable symptoms.

Reposted by Mads

Adam @abrokenbattery.bsky.social · 12d

Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS.

twitter-thread.com/t/1981309222...

🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...

🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...

twitter-thread.com

Reposted by Mads

sarah boothby @swastrosarah.bsky.social · 17d

@simonmcg.bsky.social @cgatist.bsky.social please share to your networks

sarah boothby @swastrosarah.bsky.social · 17d

it could be given doi
O'Dwyer and I were promised funding from NIHR by Lyn Romeo in 2022, but O’Dwyer was overloaded with getting promoted to a new post in Birmingham and finally pulled out at the last minute in March this year.
I am now actively looking for another academic to lead on this.
2/3

Reposted by Mads

Royal Free 1955 @rfh1955.bsky.social · 18d

"Left to rot". Exactly. Now people are getting it.

Billy Hanlon @bhanlon15.bsky.social · 18d

Sept. 2022, Politico: "‘Left to rot’: The lonely plight of long Covid sufferers"

“There are so many things that we need to learn, and no one is helping us,” Eleni Iasonidou, a pediatrician who leads Long Covid Greece, said

www.politico.com/news/2022/08...

‘Left to rot’: The lonely plight of long Covid sufferers

Some studies suggest long Covid could affect as much as 30 percent of people who are infected.

www.politico.com

Reposted by Mads

Tom Kindlon @tomkindlon.bsky.social · 18d

"Understanding concussion in #myalgicencephalomyelitis / #chronicfatiguesyndrome: Findings from 2023 National Health Interview study"

www.tandfonline.com/doi/full/10....

Individuals with #MECFS had 4.89 times greater odds of reporting concussion &...2.86 times greater odds of having fallen

ABSTRACT
Background
Although myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptoms (dysautonomia, dizziness, balance impairments) may theoretically contribute to an association with concussion, the nature of this association has not been determined. This study explored the association between ME/CFS and concussion, as well as risk factors for concussion, history of recent falls, and feelings of being dizzy or off balance.

Method
2023 National Health Interview Survey data were utilized. United States adults (unweighted N = 29,373) responded to items regarding sociodemographic factors, ME/CFS status, and history of concussion, falls, and feeling off balance or dizzy. Logistic regression analyses assessed the association between ME/CFS and concussion, falls, and feeling dizziness or balance problems within the past year, adjusting for sociodemographic factors.

Results
Individuals with ME/CFS had 4.89 times greater odds of reporting concussion in the past year compared to individuals without ME/CFS. Individuals with ME/CFS also had 2.86 times greater odds of having fallen within the past year and 5.88 times greater odds of reporting feeling dizzy or off balance in the past year.

Conclusions
ME/CFS status may be associated with concussion status. Healthcare practitioners should improve concussion screening and referrals for reducing concussion risk among individuals with ME/CFS.

Mads @blueforpwme.bsky.social · 18d

I’m thinking now it’s perhaps played a part for me too now. After all this time…. Wow

Mads @blueforpwme.bsky.social · 18d

*previous

Mads @blueforpwme.bsky.social · 18d

So interesting as I was just writing about this recently due to unbearable brain inflammation of late and precious concussions as a child and also the feeling since covid-19 infections. Im considering private scans at some point as worrying me more due to mycotoxin exposure too. Thanks for sharing 💙

Reposted by Mads

Menestune @menestune.bsky.social · 19d

There are a huge number of people who leave the beach as soon as the sun sets. They are missing some brilliant shows.

#sunset #maui #red #nature #zen #scape #landscape #eastcoastkin #cool #love #sky #beach #photography #bluesky #nokings

Colorful post-sunset sky with tons of red and purple with the blue. Ocean and sand reflecting all the colors well.