It's M.E. Linda 💙 😷
@HappyHoundHouse
2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. Brain/fitness 'not what it used be'. Beloved Lisnakill Myles-Happy Hound himself🌈 💔
Anniversary- 26June2001 I caught a Virus #PostViral #ChronicFatigueSyndrome I am one of the lucky ones who improved after #PVFS Shame #sepsis interfered 30Aug2013 #PostSepsis #MyalgicEncephalomyelitis 20 years experience 8 yrs managing new normal …
I am a proud alumna of an @NIH funded study by @mecfsbiobank Delighted to have worked w such caring researchers, so much so,that I am fundraising for biomedical research into #MyalgicEncephalomyelitis #ShareGoodScience Learn more at #MEawarenesshour
Saw a new GP and explained my symptoms (debilitating fatigue, brain fog, orthostatic intolerance etc.) and how my goal is to find a way of getting back to work. His response was 'So what's stopping you from working?' I just looked at him and repeated my symptoms word for word.
Clip from BBC Look North - Dr Alexis Gilbert (@alexis___me) who is almost entirely bed bound with #LongCovid and has been diagnosed with #MECFS feels "abandoned by the government... Its taken away all my dignity, all my joy its been devastating".
Could I suggest that in the lead up to @DecodeMEstudy announcing results & the predictable carefully coordinated backlash from the BPS cabal via the SMC, those who will be representing #pwME as they engage with the media study this guide in order to be well prepared.
📢 Our Campaign Guide is out! It deals with common media traps that we need to know how to deal with 🗣️ Part One covers the ‘Bait & Switch' tactic: ‘Its not ALL in you Head But…’ Easy-to-read download incl 💌 Help shift the paradigm and share away! longcovidadvoc.com/post/not-all-i…
My partner has asked me to share this poem he wrote for a fellow Very Severe ME-sufferer. It's designed to be read just 2 words at a time, whenever able. I think you could change the name to yours if you wanted it to be your poem too! 💙
The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…
I can point to tests that show the profound physiological nature of my child’s illness. So could the clinicians who tried to take her away from us. But still they tried, at great cost to my daughter, and our family. We are a pattern, not an anomaly. There is unthinkable…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Words of @KarenLHargrave are so true. Over the past 3 years I've met & photographed many #pwME trapped in bedrooms, desperate for appropriate care. Info on exhibition and book tinyurl.com/58khuv8z #MECFS #DocumentaryPhotography #InvisibleIllness #ChronicIllnessAwareness
Thank you @KarenLHargrave of #ThereForME for commenting so strongly on the DHSC Plan for #ME published in The Times today.
#MEAwarenessHour @AshleyDalton_MP @wesstreeting @DHSCgovuk #FundThePlan #MyalgicEncephalomyelitis
This would be a gamechanger. My daughter has lost 4 yrs of her childhood. A vague hope of a lottery-win of spontaneous recovery is all we have. The current plan changes nothing for those w/ severe ME. We need more than words. We need action. @AshleyDalton_MP @wesstreeting
CN: ME abuse Support a Black individual in the UK who is being neglected in hospital. Sign below (I think it's UK only but PLEASE share) chng.it/4jgTSmrpMv
Tonight, ask this: Why did the DWP wait until after MPs voted to cut disability benefits to reveal deaths under Universal Credit were rising? And why are they still hiding key reports from 2020? #DWP #UniversalCredit #DisabilityJustice voxpoliticalonline.com/?p=99182
UK welfare spending is 10.6% of GDP. Right wing press never mentions that it is well below the OECD average. UK has some of the least generous welfare across OECD. No questions asked about corporate welfare, uncosted tax reliefs to corporations/rich. gov.uk/government/pub…
Channel 4 News segment (5 mins) on the new government delivery plan for #MECFS. Interviews with Dr @BinitaKane, Sajid Javid and Nick Benton a patient and his family. youtu.be/1sYD5iBXw8k?si…
A silver lining of today is the powerful media coverage we've seen. Brilliant voices building a new narrative on ME, one that reflects the true reality of this illness. Crucial for real progress. Legends @KarenLHargrave @BentonNick18437 @TimesONeill @swastrosarah @BinitaKane
Article in The Times - @KarenLHargrave - “This is about more than words on paper: it is about the people lying bedbound in darkened rooms across this country, who desperately need safe NHS care and research to accelerate treatments.” archive.ph/2025.07.21-231…
Karen Hargrave - @KarenLHargrave on BBC The World at One talking about her husband, James with severe #MECFS and the new government delivery plan which lacks any concrete tangible solutions, also includes a representative from BACME. youtu.be/R6AReGLoy4o?si…
Remember the 1 hour chat #MEAwarenessHour in 12 hours time Wednesday/Mercredi/Mittwoch 20:00 BST 21:00 CEST to talk all things #MyalgicEncephalomyelitis #SevereME #DontLetMEDie @TeamKarenGordon Sign: chng.it/CGMQTDVvRb #TimeForChange @ESHTNHS Poster: @AertbyLisa 🙏
Sarah Boothby on the BBC Breakfast segment about the new delivery plan "The way Maeve was treated while she was in hospital was she was constantly being referred to psychiatric services because the conception has been that ME is a mental illness. It isn't a mental illness."
🌻Regular Weekly votes needed please! Same day as #MEAwarenessHour🌻 PLEASE VOTE for @Invest_in_ME to share in grant monies from My Giving Circle - closes 30/9 #6 on this round for UK/🇮🇪 #MyalgicEncephalomyelitis mygivingcircle.org/invest-in-me-r… ExtraVotes? MEResearchUK 25% ME Grp🙏
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”
I’ve finally got around to watching #voicesfromtheshadows and it’s one of the most impactful documentaries I’ve seen on #MECFS. It’s excellent. Initially I thought it wasn’t available in the UK, but I clicked “Rent $3.00” entered promo code ‘Voices’ and it worked for free!
This 'plan' changes nothing for my 18 yo daughter who is bedridden & tube-fed or the many others with severe / very severe #MyalgicEncephalomyelitis. Bottom line: No funding and some warm words after decades of neglect of #pwME. We need an NHS and parliamentarians #ThereForME
June 30 + 22… 🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny. tinyurl.com/5zf6h89p
I am not liking the description of severe in here as housebound or not able to work. Reality is 80% of ME/CFS patients can't work, 25% of them are profoundly bedbound or worse and suffering extensively in dark rooms. This press release already minimises the disease.
June 30 + 22… 🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny. tinyurl.com/5zf6h89p