🚨!!PLS SHARE & TAG #pwME !!🚨 @natashadevon.bsky.social TONIGHT on @LBC 7-8pm Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?' Tel/WhatsApp 0345 606 0973 SMS 84850 #MECFS #MyalgicEncephalomyelitis #SevereMEDay #LongCovid

I finally checked the DecodeME preprint to verify the ‘no overlap with LC’ claim: 1) DecodeME only had 462 people with C19 caused ME 2) they did not run a separate GWAS on the LC cohort (it’s too small) 3) this is the piece of text people are referring to: it’s just a reference to another study

Today, on Severe ME Awareness Day, @thesicktimes.org is proud to publish this piece by @naomiwhitt.bsky.social sharing the story of singer Kara Jane and her new album, released posthumously by her family. thesicktimes.org/2025/08/08/p...

Huge thank you to Chris Ponting and the @decodemestudy.bsky.social team for all their work on this project, and the work still to come. These results are a great foundation and provide a lot of validation for patients across the world 🩵

Look 👀 at this - five of the news outlets are actually using ‘ME’ in their headline, and four of those are using it exclusively, without CFS!! That’s real change right there.

I’m seeing a lot of confusion about ‘risk’ versus cause. The DecodeME results do NOT show that ME is a genetically caused disease. There is no gene that causes ME. They do show certain genes can increases our chances of developing ME. 🧵

After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...

Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!

Read her words. Isla was already suffering age 8 at the hand of the UK health care systems. Last year, she died from ME, despite her parents best efforts to protect her from this system. So now the system has arrested Isla's mum... @ashleydaltonmp.bsky.social your plan is not fit for purpose.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

@chronically2784.bsky.social i can’t send you images here in DM but I saw this on the other place and wanted to share with you x

Evaluating the Causal Role of Genetically Inferred Immune Cells and Inflammatory Cytokines on ME/CFS www.mdpi.com/2227-9059/13... "These data are supportive of the causality that immune system dysfunction & inflammatory variables play a pivotal role in the development of ME/CFS" #MEcfs #CFS

Great response from @naomidharvey.bsky.social www.bmj.com/content/383/...

Excellent piece by Aussie husband, father & carer of a mother & daughter with #MyalgicEncephalomyelitis #mecfs 😊 Also on the SBS program Insight at 8.30 tonight, or on the SBS app. (Might be geoblocked.) 🧵 www.sbs.com.au/news/insight...

This is my SOS 🆘 I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound. It’s frightening and awful and we have no help or dedicated medical care. We need help, this is my SOS 🆘 #DisabilitySOS #MillionsMissing @meactnet.bsky.social

#pwME #pwLC #MEAwarenessDay HT @naomidharvey.bsky.social

“This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents”

#pwLC #pwME #NEISVoid please response and reshare

For everyone having a hard time (or harder time) right now 🫂

In chronic venous insufficiency, combining oxerutin with Calcium dobesilate, works with oxerutin to further improve venous issues and provide additional symptom relief t.co/hCDg9wak4j This seems like an excellent drug target for #LongCovid #MEcfs etc @exceedhergrasp1.bsky.social

Has anyone here tried oxerutins (Paroven and Venoruton are two brand names) for POTS, ME, LC etc? It’s a synthetic form of rutin used for venous insufficiency. It reduces blood vessel permeability and improves small vessel blood flow. One pwME on Twitter reports reduced PEM with it.

(Worcester, Massachusetts) Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study Image is from MassME @massmecfs.bsky.social April Newsletter www.massmecfs.org/newsletters/... #MEcfs #LongCovid

Biggest commitment to a 3 second joke I've ever seen

I’d avoid it if possible. My specialist refused to diagnose POTS without it and: 1. Was already close to a crash by the time I got there and waited. 2. Being strapped to a gurney is a bit, you know, executiony. 3. Sudden, rapid unconsciousness due to lack of blood flow to the brain is very nasty.

I’m quoted in this important piece. I really hope that more patients can avoid unnecessary tilt table testing if they can take articles like this to their doctors. Many ppl warned me of the risks, but I didn’t feel like I could decline my doctors request for the test. I’ve not been the same since 💔

Today @thesicktimes.bsky.social: really important story by @jewstein3000.bsky.social about how the tilt table test, commonly used to diagnose POTS, can be dangerous for people with Long COVID and ME. thesicktimes.org/2025/04/08/i...

People of Brisbane and Melbourne we need your help! We are trying to develop a new diagnostic for Long Covid and so we are asking people with Long Covid to kindly join our study - please DM me if you have any questions about the study or Long Covid in general! Please repost!

The pot of bulbs my husband planted in the autumn is putting on quite a show 🌷🌷🌷 #TimelineCleanse

This is an important finding for both the impact of viral infection & vaccination. Many were spike pos but nucleocapsid neg, even with known previous infection & NO vaccination. But further study of brain tissue samples from 3 cases showed presence of both vaccine & viral spike in brain arteries.

Well that’s just peachy Confirmation that vaccine derived spike protein can persist for at least 17 months in brain artery tissue and, icing on the cake: women are shat on again “Notably, spike protein positivity was observed exclusively in female patients” www.sciencedirect.com/science/arti...

And finally, if you're assigned male at birth, you can't say with certainty that you don't have a uterus. There's been multiple case studies of cis men who have fathered multiple children turning out to have had a uterus in there. Seriously. masto.ai/@vagina_muse...

Preliminary findings from Simmaron Research’s Rapamycin trial in ME/CFS - result from the first 40 participants who completed 3 months on it - improvements seen in *every* symptom scoring scale

I figured that 10% of people with ME/CFS do not have ME (thanks to old diagnostic criteria that don’t require PEM), but this suggests it’s more like 22%. Really is no wonder so many report things like the lightning process helping them 😕 bmjopen.bmj.com/content/15/4...

Blood Vessels Sense Chemicals from Vegetables to Protect Gut Health #AhR #MECFS #LongCovid lms.mrc.ac.uk/blood-vessel...

When taking my choline for the last two days, my brain has decided it needs to recite Dolly Parton’s Jolene chorus but using ‘choline’ instead 🫣 it does this in my head for the next few hours.

The Latest Research on Mitochondrial Dysfunction in Long COVID & #ME/CFS Interview #47 Prof. Klaus Wirth youtube.com/watch?v=9gwM... Gez Medinger 💪🏻💪🏻🔥🔥🧠🪫🪫

Great to hear our @oonagh_cousins and #ThereForME Ambassador @binitakane.bsky.social on @bbc5live.bsky.social this morning! Clip here courtesy of @abrokenbattery.bsky.social👇 youtu.be/9Wh6lIEYZcg?...

Two steps forward, one step back. For #LongCOVID awareness day today I had the honor of joining thousands of other New Yorkers in a peaceful protest to stand against many of the current administration’s recent damaging and thoughtless policies and executive orders. Let there 1/

All my followers in #science and #research please 🙏🏻 pay attention to this as an example of why you *must* check original sources before citing something. As this is an excellent example of how badly out of hand it can get when people trust a second hand reference, without checking the first paper.

Wow. Important Letter here: It seems *every* source (from charities to governments) has wrongly cited a figure from a paper on the global prevalence of #MEcfs which was actually citing a paper about MS not ME 🫣 translational-medicine.biomedcentral.com/articles/10....

🧬Science Wednesdays: Peer Reviewed Publications “When will we see results from this study?” This is one of the most common questions we get. While many portions of the research process can take a long time, the publication portion of the process is an unpredictable component of that timeline. (1/3)

“At the moment, I can’t see how I will be able to work, unless there’s some treatment around the corner. The government must invest in research to get treatments." Me in @bigissue.com about the need for #LongCovid treatments, being too ill to work & benefit cuts. www.bigissue.com/news/social-...

Benefits cuts UK - another easy way to get in touch with your MP. A super simple form to fill out. Now is the time to act, stop this in its tracks. Make sure your MP is hearing from us, and getting the message. #DisabilityRights #BenefitsCuts

There’s a good form here to use to email your MP and ask them to stand against disability benefits cuts It’s quick to do and helps them to know how many people are against this, so please complete it if you can 🩵 #DisabilityBenefits action.sense.org.uk/page/167765/...

Newly opened camellia flower, our first flower this #Spring #photography

(Australia) New post today on NCNED's Facebook page looking for participants for this trial: 𝗟𝗼𝘄-𝗗𝗼𝘀𝗲 𝗡𝗮𝗹𝘁𝗿𝗲𝘅𝗼𝗻𝗲 𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗧𝗿𝗶𝗮𝗹 𝗳𝗼𝗿 𝗹𝗼𝗻𝗴 𝗖𝗢𝗩𝗜𝗗 People can participate remotely without attending trial site #LongCovid #PASC

When you see a government minister saying that spending on disability benefits is increasing & they don’t have the money for it - it’s a lie 🚨 Yes, spending on disability benefits is increasing, but other spending is declining, & the overall trend means costs are NOT going up overall.

“printed in the UK 🇬🇧 with water based inks and renewable energy. Dishwasher and microwave-safe with a durable, high gloss finish. Recycled and recyclable plastic-free packaging” Charity mugs to support ME research 🩵 omfcharitymugs.teemill.com

“The presence of a low or low-normal pregnenolone level in someone not taking statins suggests your body is making elevated levels of interferon to fight a chronic viral infection. Low cholesterol levels suggest the same thing.” Blog on use of pregnenalone for #MEcfs vitality101.com/health-a-z/C...