Edna, M.E.Advocate 🇨🇮

💙 M.E.Carer/Advocate of son aged 33, ME,13yrs 💙.
RaisingAwarenessFor #PwME #Carers #LC #findAcureME
#greatestMEdicalscandal

[Open Medicine Foundation @OpenMedF]

OMF Collaboration Investigates Molecular Basis of Post-Exertional Malaise (PEM) 👉 Read more from Dr. Moreau: https://t.co/J8rBEkGbPz.

Key findings:
➡️ After a mild stress challenge, #pwME showed a sharp drop in haptoglobin (Hp) levels, while healthy controls did not. (1/2)

[Leonard Jason @CenterRes]

I invite those with ME, ME/CFS, and CFS, their families, healthcare providers, and researchers to participate in a survey (link below) on case definitions and cardinal symptoms of this illness.
https://t.co/sd0MRfU8bF
Thank you for your assistance.
Lenny Jason

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Good news! Ireland is set to develop new guidelines for #MECFS, and Prof. Brian Hughes will join the steering group. He has long highlighted the neglect of people with ME/CFS and has been a vocal critic of flawed studies. https://t.co/TSpTWCmGYt

[1000GigGuy @1000GigGuy]

@EPfestival Been to 18 of 20!
Logged on with loyalty code to be just thrown into the mix with general sale!
(This after pre-sale offer for customers of a telecoms company happened on Monday)
No joy!!!
Loyalty should work both ways!
You didn't help your long term customers today!

[Janet Dafoe @JanetDafoe]

On severe MECFS day I take a moment of silence to remember the suffering of very severe patients. I remember their caregivers, allies and doctors who care for them. I implore all who don’t believe this disease is real to educate themselves so they can provide appropriate care.

[Carole Bruce @CaroleBruce17]

Huge gratitude to Professor Chris Ponting for this study. His behaviour and understanding throughout the process has been remarkable and the results are, to many of us #ME patients, a validation of our whole selves.
@DecodeMEstudy ll

[Oonagh Cousins @oonagh_cousins]

Bang on 👇

As Danny says - rehashing old narratives gives them oxygen, even when you're trying to debunk them. That might have a place in academia, but in comms - no need to go there at all.

[PwME 4 bioMEdical research @ValeBodi]

As a doctor with ME/cfs, this is probably the worst disease that exists. That is all. Reddit post on #MECFS https://t.co/nVhLEoROOj

[Carole Bruce @CaroleBruce17]

So sorry to hear of the death of @Bridget_OShea who had severe #ME This is a piece of hers on Substack, I’m sure a lot of us can relate to it. Another #ME death 💔

https://t.co/swn6jIvLcU

[CoRE at Mount Sinai @CoRESinai]

Join a clinical trial assessing the safety and efficacy of sirolimus in adults with Long COVID. For more information, contact [email protected].

[ME/CFS Science @mecfsskeptic]

@32Sfc46582 @RachelCrei55670 @Naomi_D_Harvey @Annakwood Agree it's frustrating but Decode-ME results are coming up, expected to be published before august 2025.

It's the biggest ME/CFS study to date and might contain some valuable clues on the causes of ME/CFS.
https://t.co/pbYy3IwNQ7

[lamar #StandWithUkraine @LamarSees]

"Let’s fill up the bucket with life and love! Come on researchers, it’s time for a cure, I’ve got people to see and things to do!  

Whitney"
@NIH @NIHDirector_Jay
@CDCgov @CDCDirector

#MECFS #LongCovid

[Janet Dafoe @JanetDafoe]

Dinner and the Eagle pub in Cambridge after four wonderful days of ME Research meetings. More pictures in the next tweet.

[Tomas Paulenda @tompaulenda]

Together with @maxim_artyomov, we wrote a short blog post with the backstory of our itaconate-Prdx5 discovery. It allows a glimpse into how the story evolved over time and how we got here.

https://t.co/FGAkQXT3Xi

[Maxim Artyomov @maxim_artyomov]

latest from our lab:
ITACONATE MECHANISM SOLVED!!

Tom Paulenda @tompaulenda solved molecular mechanism of immunoregulatory action of itaconate in macrophages:
https://t.co/efeSAW4ZTA

Previously, our lab has discovered two major immunoregulatory phenotypes of itaconate in macrophages - enhancement of type I interferon signaling and inhibition of late inflammasome activation (Swain et al, 2020 and Bambouskova et al, 2021). Yet the mechanism of immunoregulation itaconate has been elusive even though we (and others) have previously shown its ability to inhibit Sdh and its mild electrophilic properties.

In the latest work, we believe we have finally cracked that puzzle!!
We show that both immunoregulatory phenotypes are driven by the ability of itaconate to modulate ROS through non-covalent inhibition of the peroxiredoxin 5, mitochondrial peroxide-detoxifying enzyme.
We describe major new phenotypes for the pro-interferon action of itaconate in vitro and in vivo and show that Prdx5 inhibiton is sufficient for immunoregulatory action of itaconate and does not require neither Sdh inhibition nor its mild
electrophilicity.

(1/2)

[davidtuller @davidtuller1]

This is my post about visiting Alem Matthees in Perth, Australia, a couple of weeks ago. After his successful effort to "liberate" the PACE data that proved the trial was a piece of crap, his health deteriorated. Please leave comments on the blog! https://t.co/Mx74Rx6w9z

[Roisin Keogh @RoisinKeogh4]

Hi all! Wondering if any ME patients have tried Stem Cell Therapy? Been ‘mentioned’ by my consultant and obviously scares the life out of me. I would love to hear from
Anyone who tried it and / or is looking
Into it? TIA 💙

[Edna, M.E.Advocate 🇨🇮 @EdnaMacNamara]

Saw my SonsNeurologist this week,me in person, mySon, by Phone.

After dealing with the usual symptomManagement.

I said,"we are 12yrs into this nightmare can you do anything for him?"

He replied, "No!"

Doctors take an oath to do no wrong.
IMO doing Nothing is doing wrong.

[Brian Fog @useless_priest]

Not chronic fatigue.

Chronic inflammation. Chronic cognitive dysfunction and memory deficits. Chronic orthostatic intolerance. Chronic sleep issues. Chronic gut issues. Chronic pain.

Chronic curtailment of life. Chronic gaslighting. Chronically misunderstood.

[Rosie @rozzybarrett]

@wesstreeting and @AshleyDalton_MP, my younger sister & best friend has very severe #MyalgicEncephalomyelitis. She was fit, healthy and loved life. Now she is bedridden, tube fed, needs 24 hr care and is suffering so much. Please #FundThePlan and be #ThereForME