nikki-992.bsky.social @nikki-992.bsky.social · 13/10/2026I want to go to CrossFit or spin or run or dance or sing or go on a long walk with a hot drink or just live. I miss everything I want it back I miss movement it was my life. 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 13/10/2026Actually get me in the gym lifting heavy with a barbell listening to music so loud it's probably bad for me or running through the trees singing along to music when no one's around and struggling up a massive hill covered in wet leaves. Give me my life back. Fuck ME/CFS and complicit organisations. 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 13/10/2026I want to drive to loads of random shops and just look at pretty things and buy them all. I want to dress up and feel nice. I want my hair to stop falling out. I'm so sick of being housebound. 211 2
nikki-992.bsky.social @nikki-992.bsky.social · 24/09/2026Raised a formal complaint with my local mecfs team, months later they've come back with a reply with so many holes in it. Now I have to waste more energy fighting back again. Why can't we just be heard like any other serious illness? 020 2
Reposted by @nikki-992.bsky.socialGeorge Monbiot @georgemonbiot.bsky.social · 24/09/2026Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...theguardian.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot 17925431732 2.5K
nikki-992.bsky.social @nikki-992.bsky.social · 21/09/2026I've hopefully just sent you an email about an NHS GP practice! 040 4
Reposted by @nikki-992.bsky.socialAdam @abrokenbattery.bsky.social · 11/09/2026Today marks 25 years since 9/11. 8 months after the attack, psychiatrist Simon Wessely argued that illness reported around Ground Zero was being wrongly attributed to environmental toxins, suggesting “World Trade Centre Syndrome” was driven by social and psychological factors. 1210550 105
Reposted by @nikki-992.bsky.socialTom Kindlon @tomkindlon.bsky.social · 09/09/202610 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS 516474 164
nikki-992.bsky.social @nikki-992.bsky.social · 08/09/2026Reading this thread pissed me off. What do you mean there was a clear clue for ME in the 1990s and no one followed it?! But also any researchers wanna look into this? It looks pretty interesting! The science 4 ME forum doing incredible stuff as always s4me.info/threads/the-...s4me.infoThe buspirone challenge test clearly distinguishes ME/CFS patients from healthy controls: why is it not being developed and deployed?Moderator note: Link to @forestglip's excellent summary of what is known, as of August 2026, about the prolactin response to a buspirone challenge in ME/CFS here See also a Google document where som... 000 0
Reposted by @nikki-992.bsky.socialTessa Munt MP 🔶 @tessamunt.bsky.social · 15/08/2026Congrats to James Frith MP, newly appointed as the Minister for Health Innovation, with responsibility for ME. I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy. 76824 68
Reposted by @nikki-992.bsky.socialChris Ponting @cgatist.bsky.social · 11/08/2026What is the evidence that psychosocial factors are direct aetiological factors in chronic diseases? This question, asked by George Davey Smith in 2005, and a follow-up comment from Simon Wessely, snagged my attention. Blog via @simonmcg.bsky.social's site. mecfsresearchreview.me/2026/08/11/o...mecfsresearchreview.meOn BPS & disease causation: George Davey Smith’s cautionary taleby Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitl… 54117 41
Reposted by @nikki-992.bsky.socialAdam @abrokenbattery.bsky.social · 06/07/2026“They're not lazy, they're not skiving and they're not doing it to get attention. They're really, really ill and they've lost so much from their lives.” BBC weather presenter Trai Anfield speaking about young people with #MECFS. 26622 66
nikki-992.bsky.social @nikki-992.bsky.social · 07/07/2026Since I got ME all I do is send written complaints. I've never complained so much in my life. Maybe if it helps just a little bit it's worth it?! 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 25/05/2026Omg yes! So apparently it's classed as a medicine not a supplement here for some strange reason (we do the same to melatonin) but I've found it elsewhere! Thank you 😊 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 24/05/2026Omg I definitely will I was up literally all night last night so I'll be making an Amazon order asap aha thank you 💖 200 2
nikki-992.bsky.social @nikki-992.bsky.social · 23/05/2026Obviously as I sit here unable to enjoy the sunshine or see friends and watch my life waste away I wish they'd sort it yesterday so it's never enough. But it's amazing to see there's actually some leads. Brb while I go back to dreaming of picnics and BBQs and friends this BH 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 23/05/2026Anyone with ME/CFS should be checking the science4ME forum. Genuinely taught me so much and for the first time it seems relatively positive and has some proper leads. Also good to find out there's no good evidence of all the hyped stuff like mitochondria issues, inflammation etc. 120 2
nikki-992.bsky.social @nikki-992.bsky.social · 23/05/2026Oooh amazing thank you! I thought it was a proper drug not a supplement and I can't be dealing with trying another prescription drug 😂 110 1
nikki-992.bsky.social @nikki-992.bsky.social · 20/05/2026I have no idea what that is ahah! Do you feel like you actually get good sleep on it or that you're just not awake for longer if you get what I mean? 110 1
Reposted by @nikki-992.bsky.socialRobert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/04/2026Since 2013 I’ve raised £20,000+ for ME research charities. This year I’m raising money for Sequence ME & Long Covid as I think this is our best chance of understanding the causes and mechanisms of ME/CFS, which will lead to the development of effective treatments: www.justgiving.com/page/robafmejustgiving.comRob’s birthday fundraiser for Sequence ME & Long CovidHelp Robert Saunders raise money to support Action for M.E. 2179 17
nikki-992.bsky.social @nikki-992.bsky.social · 26/04/2026share.google/7MMb23dMdzVg...share.googleGary Shorrock’s Bob Graham Round for ME/CFS: 66 Miles for Research and HopeHelp Steven Shorrock raise money to support ME Research UK 010 1
Reposted by @nikki-992.bsky.socialAction for ME @actionforme.bsky.social · 20/04/20261/6 🚨 ME on the BBC We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV! #pwME ⬇️ 11611 16
Reposted by @nikki-992.bsky.socialMillions Missing France @millionsmissingfr.bsky.social · 24/04/2026🗞️Un article sur l’encéphalomyélite myalgique dans le célèbre magazine ELLE 🥳 Dans son édition du 23 avril, le magazine ELLE consacre un article en double page à l’Encéphalomyélite Myalgique (EM). Une visibilité de plus dont nous nous réjouissons ! 1126 12
Reposted by @nikki-992.bsky.socialME/CFS Science @mecfsscience.org · 23/04/20261) Trigger warning: suicide This paper analyzed 505 entries on the National CFIDS Foundation memorial list. These were people with ME/CFS who passed away. The messages summarize their life, illness and struggles. The researchers grouped these into several recurring themes. 26929 69
Reposted by @nikki-992.bsky.socialTom Kindlon @tomkindlon.bsky.social · 23/04/2026🧵 From News Release 22-Apr-2026 "Memorials of people who died with extreme fatigue condition [ME/CFS] show shared themes: New analysis of the unusual dataset highlights similar systemic, clinical, social, & personal experiences" www.eurekalert.org/news-release... #MEcfs #PwME 1/ 15328 53
nikki-992.bsky.social @nikki-992.bsky.social · 05/04/2026May I End My Life With You? www.nytimes.com/2026/04/03/s...nytimes.comMay I End My Life With You? 000 0
nikki-992.bsky.social @nikki-992.bsky.social · 05/04/2026I want to go for a run and then come home, shower and get changed. Have a cup of tea and go for a nice relaxing long walk. I want my life back. I hate MECFS and I hate my life now 000 0
Reposted by @nikki-992.bsky.socialChris Ponting @cgatist.bsky.social · 21/10/2024A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...theconversation.comIgnored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease. 22262123 262
nikki-992.bsky.social @nikki-992.bsky.social · 15/03/2026Someone in my life donated to sequenceME today for me (and everyone with LC/ME) and is going to recommend her work donates to them in future fundraising. I cried. Just having someone listen is incredible but acting as well?! What an angel I am so lucky. 050 5
Reposted by @nikki-992.bsky.socialLos Angeles Times @latimes.com · 14/03/2026Long COVID leaves thousands of L.A. county residents sick, broke and ignoredlatimes.comLong COVID leaves thousands of L.A. county residents sick, broke and ignoredSix years after the COVID-19 pandemic began, doctors are still treating long COVID patients with complex symptoms and unknown futures. 8254127 254
Reposted by @nikki-992.bsky.socialDarren Parkinson @greendarrenshipley.bsky.social · 14/01/2025The Guardian have documented a year in my life living with #LongCovid. Please watch this short documentary to learn what it's like living with this debilitating disease and why we need urgent treatments. www.theguardian.com/society/vide...theguardian.com‘The pandemic isn’t over’: my year of long Covid – videoDarren Parkinson is one of about 2 million people living with long Covid in England and Scotland. The illness is having a detrimental impact on his life, stopping him from being the kind of active and... 28352167 352
