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blueforpwme.bsky.social
🇬🇧DxwM.E.1995 ex dancer,lifeguard, performer now working on writing my 1st novel to rep #pwME! I’m a dreamer,nature lover & surfer 🏄‍♂️🛹a few times a year if I’m lucky Many undiagnosed comorbidities! Ie LC.POTS.MCAS.DYSAUTONOMIA.EDS. GASTRO.ADHD.CHIARI/SPINAL🦋
332 posts 130 followers 252 following
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#pwME

submitted 12 hours ago • 0 comments

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

submitted 18 days ago • 1 comment

I’ve been trying to inform MSK #ConnectHealth at a recent physio appt about your work but it falls on deaf ears. I have another appt booked as requested a qualified person with knowledge on M.E. to treat me but not sure there is one currently on #NHS where I live so who knows what will happen next

submitted 2 days ago • 0 comments

. @meactionuk.bsky.social @actionforme.bsky.social @longcovidkids.bsky.social @physiosforme.bsky.social @longcovidadvoc.com @longcovidphysio.bsky.social @longcovidsupport.bsky.social

submitted 7 days ago • 0 comments

Feel very privileged to have spent time with @putrinolab.bsky.social & others in the last week discussing actual evidence based robust science relating to ME and Long Covid. There is no room for this sort of nonsense @bmj_latest

submitted 4 days ago • 0 comments

2 days left and we are £55 short of the target. Please help to cover our overheads for 1 year We do important work for the M.E community. Covering overheads helps by taking financial pressure off, allowing us to be more effective 🙏 www.crowdfunder.co.uk/p/supporting... #MEAwarenessMonth #pwME

submitted 8 days ago • 0 comments

Women's cancers get 20% less funding than male cancers, despite much worse survival rates The public gives male cancers significantly more funding per case than women's cancers, even when their survival rates are lower www.thecanary.co/uk/news/2025...

submitted 10 days ago • 4 comments

Reposting for those who didn't see it last night. Our petition (and reasons for) has been covered by @thecanaryuk.bsky.social 🫶 #pwME #DisabilityCutsKill

submitted 10 days ago • 0 comments

@thriftvip & @thrift_stop_pop_shop are going #BlueForME this year, on instagram, sharing a selection of blue 🦋 items of apparel available to purchase, with a percentage of those sales going towards M.E. research. I’m keeping my campaign there as it’s too much to do here too 🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋

submitted 10 days ago • 1 comment

“Being heard is so close to being loved that for the average person, they are almost indistinguishable.” David Augsburger Be the one who creates space. Who lets others feel seen, understood, and welcome, just as they are. 🧡 #kindness #positivity #belonging Picture by @anxiety.positive

submitted 12 days ago • 3 comments

6 days and 12% left to fundraise. Please support if you are able to. Thank you www.crowdfunder.co.uk/p/supporting... #MEAwarenessHour

submitted 12 days ago • 0 comments

(US) #MillionsMissing 2025: Sending Out An SOS www.meaction.net/2025/04/02/m... Screenshot from the AMMES May email newsletter #MEcfs #LongCovid

submitted 13 days ago • 0 comments

So pleased you reached your goal @davetuller1.bsky.social ! Onwards! 🩵🦋🩵🫂🙏🏼🎉

submitted 12 days ago • 0 comments

When a disabled person talks about their symptoms, the immediate reaction of a lot of people is denial. They can't imagine or comprehend symptoms like we describe so they don't think it's real, and instead default to thinking we're lying. But we have to live with it every day.

submitted 14 days ago • 6 comments

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

submitted 18 days ago • 1 comment

#NHS place update this! ‘Some people with ME/CFS have found that exercise programmes can make their symptoms better. But some also found it made no difference or actually made symptoms worse.’ No exercise makes symptoms better for #pwME it is contra-indicated = #PEM www.nhs.uk/conditions/c...

submitted 22 days ago • 0 comments

Disabled people deserve to live... not just exist. In fact, everyone does

submitted 23 days ago • 0 comments

Sign up now for our #MillionsMissing storytelling training coming up this Sunday, April 27th at 12 pm PT/ 3 pm ET! Expert storyteller, Kirsten Ferrell, will help us articulate our SOS stories in a quick and effective way. ow.ly/iaow50VGxBN #MillionsMissing #DisabilitySOS #PwME

submitted 26 days ago • 0 comments

Yes even a small amount makes a difference! Brilliant work 🩵🦋🩵

submitted 25 days ago • 0 comments

A survey to help me gain further insight to help those with energy limiting conditions through gentle flowing movement, relaxation and sensory immersion www.surveymonkey.com/r/5GX63NB This is ONLY suitable for #pwME (mild) #LongCovid

submitted 27 days ago • 3 comments

Your disabled family member matters. But that’s not a reason to suggest others aren’t “as disabled as them” so the system “is being taken advantage of”. Your family member deserves support, and so do all others.

submitted 29 days ago • 1 comment

To quote from the film 'Sweet Home Alabama', Stephen Timms MP is currently trying to 'ride two horses with one ass'. He cannot push DWP welfare cuts AND represent disabled people at the same time. Please sign and share widely PETITION LINK- chng.it/wnGRGnbQcn #MEcfs #Disability #WelfareCutsKill

submitted 28 days ago • 0 comments

This is encouraging and a small step in the right direction

submitted 33 days ago • 0 comments

I’ve just written a letter back to MSK services regarding my recent experience and the distinct lack of knowledge around trained therapists in #MyalgicEncephalomyelitis within #NHS care. This has to change ! #Rehabilitation #LongCovid

submitted 33 days ago • 0 comments

I’m currently working on putting together a proposal atm so a bit quiet on here … progress is slow but currently steady with lots of resting in between. 🩵 I’m also preparing a few bits for #MEAwareness in May 🦋 … love and waves to all 🌊🌊🌊

submitted 33 days ago • 0 comments